Sharp Blue: Labyrinthitis comments, page 7

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Hi, everybody

Megan - I have to defend Rich B. who owns this webpage. I am absolutely sure, that your previous post just did not come through his spam-filter. It happened a couple of times with my posts. Rich explained me why it happened and that it was not intentional.

Megan - my vestibular disorder which I have had for more, than 30 years (relapses/remissions) is accompanied with the strangest and the weirdest symptoms which inslude among others: fullness and burning in the ears, throat, chest (from the left side!), behind the nose. Sometimes this fullness and burning is so severe, that I think, that I am going to suffocate, or ready to throw up. Surprisingly - I never suffocate, and very rarely throw up. ALL MY TESTS (heart, blood, MRI, CT scan) have always been perfectly normal. The only abnormal tests were ENG (electro-nistagmo-gram) in 1995 and in 2004. This abnormality could be a possible sign of assymetry in brain percieving signals from the left and right inner ears. I was very sick with all the above-described symptoms in 1995 and in 2004. But I was PERFECTLY NORMAL socially and very productive professionally in 1997-2003. Doctors do NOT HAVE ANY EXPLANATIONS to my "vestibular disorder". Some "abnormality", or "damage" in nerve cells in (or around) the inner ears or in the vestibular nerve.

Megan - I understand completely your frustration, anger, bitterness and your desparate desire to "go to the bottom of it". Megan- if you never had an MRI, or CT scan done -maybe it is a good idea to do this just to rule out any big lesion in your head or spinal cord. What you surely NEED to ask doctors - what CAN this ot that test REALLY show. Go away from thoses doctors who dodge from such kind of explanations - it is your right, because this is YOUR LIFE.

Keep strong and do not give up.

Anna


II recently found this site and have appreciated all your situations most of whom I have experienced. Please let me share where I have been and where I'am currently at. The latter part of April this year while working in the bottom of a boat I raised up quickly and immediatly became very dizzy, managed to get into my living room, becoming extremly hot for a few minutes then chilled. then the onset of extreme vertigo. Could not walk. With the help of my wife we managed to get to a bed. For the next three days I continualy vomited when ever I tryed to open my eyes. Went to the doctor the third day and was digonosed with vistibular neuritis, a virus as you all know.The doctor said there wasn,t any treatment for this condition and I would be done with it in three to four weeks.The heavy vomiting vertigo left me on about the fourth day,leaving me with extreme instability and dizziness when looking up, down,or to either side. Actualy quite an improvement from the onset.At six weeks my GP sent me to an ear specialist who immediatly diagonised me with BPPV. On the fourth of July I sucessfuly managed to do the Eply manuver which elimitaded my dizzines. What a day that was.I still am a bit unsteady on my feet not bad tho,tension in the neck and back of my head, once again much improved.I,am only four months into it now but I believe I can see the end in site.I also can relate to the fuzzy brain thing. Thanks Rich for this informative site,made me feel not quite so alone.I have another appointment with the specialest next week, will try to figure out how to get rid of the fuzzy head.Thanks for letting me share.


Great site - I've found it helpful in the last couple of months re peoples advice and just knowing that I'm not the only one. Its also brought me to tears a few times. Anyway, my story: In July 2005 I went on holiday (a four hour flight), whilst on holiday I went on a fairground ride twice. Towards the end of the holiday I woke up and the room was spinning/swaying violently (it was 9 days after the flight and 7 and 1 days after the fairground ride). I didn't know what was going on and had to sleep sitting up for the rest of the holiday as every time I lay down the room span violently. I got home and every day seemed better than the previous and I was eventually able to lie down to sleep so I didn't bother with going to the doctors. At the end of August I had another bad spell, this time I went to the doctors and she diagnosed me with Labyrinthitis. She gave me Stemetil which I didn't take as I was so scared of the side effects. I got better without the tablets and forgot about Labs - I had two very mild attack in the next few months which only lasted a couple of days so didn't take anything. Forgot about Labs again and in June 06 went to Alton Towers and went on Nemesis - it was great fun and I thought I was alright until 5 days later I woke up and - wham! - the room was spinning violently again. I couldn't walk straight, look down or up. This time I took Stemetil but they made me sleep for most of the day and didn't seem to stop me feeling dizzy. I have two young children and felt that I needed to get on with things and not to be sleeping all the time so I stopped taking them. It was during this spell of Labs that I realized that Labs isn't going to go away so I searched the web for info and came across this site which I have found to be very comforting and informative with the shared experiences. Anyway I went on holiday in July again (10 hour flight this time) and 5 days after my flight the room was spinning again and I had to sleep sitting up for the rest of the holiday (and for the most of the next three weeks). I met someone whose friend had Labs and she said I should get referred to ENT so when I got home I went to the docs and tried to get referred but she said "come back in two weeks and we'll see how you are". I got new tablets though - Cinnarzin - which makes me sleepy (I walk round like I'm spaced out) but able to see my kids to bed at night. Felt better by two weeks after seeing the doc so didn't go back. It was at this point I started to really appreciate life and being normal - I was walking around with a huge smile on my face because I felt so well. Just did an cheerleading class this weekend with some friends and the turning around in the class has set me off again but not as bad as flying and fairground rides seem to. Its affecting me more this this week when I'm tired and I feel like I'm on a boat swaying. Most of the people I've read about seem to get Labs when they have a bad cold etc but mine seems to be (so far) affected by motion. I'm determined to get on with my life even if I have to sleep sitting up for some of it (boy, does my neck ache in the morning). I WILL continue to go on holiday and fly there (although I will take advice on this site - Dr Wood at MayDay Clinic - to take a Stemetil before I fly). I'm not going to go on another fairground ride as long as I live though! Nor attend another cheerleading class (unless I miss out the spinning bit!) I still have a glass of wine when I'm feeling well but can't stand the sight of it when I'm feeling dizzy. There is one good thing about Labs though - I didn't put any weight on on either of my holidays when I had it as I felt so poorly! Ha ha only joking, would rather put a stone on than feel like this!!


Hello Everyone,

Well just thought I'd give an update since I haven't been on here in a while. I've had constant dizziness since June 27th, 2006

I tried stemetil and meclizine so I figured I would try natural methods. I received some pills from a homeopathic doctor, tiny white pellets that disolve in the mouth and smell like alcohol. They are called (Argentum nitricum) and (Natrum muriaticum) 4 x a day, I have been taking this along with Ginko Biloba and Vitamin B6 and also 500MG of L-PHENYLALANINE (Amino acid).

I felt better within just a few days, I was very skeptical but I must admit I was significantly less dizzy than before.

In the following weeks, I felt well enough to work out harder and play more contact sports which is a huge deal for me since I am a part time personal trainer and love playing sports and helping people lose weight.

Although its not completely gone, I feel the improvement has given me hope and allowed me to enjoy my life more.

Well just wanted to give you all an update!Whether or not these pills helped or it was coincidence I don't really care, all I know is I am feeling much better! So there is hope!


I have just found this very useful site today.

On Aug 16 I had an immense histamine reaction/hayfever attack. My ears really started killing me by Wednesday morning. By late Wed afternoon the vertigo and tunnel vision started. I finally saw my endocrinologist Tues this week and he believes it is Labyrinthitis; after reading all the posts here, I think he is right!

I have intermittent nausea, drunk walking, neck and calf spasms, etc. I had nystagmus but I think it is pretty much resolved.

A question: I thought my hearing was unaffected. However, this Tues evening my right ear began to feel as though it is filled with fluid, which makes a crackling sound and occasionally sloshes around. I can still hear, but I wonder what others or their doctors have done to drain the fluid. Is it a sign I am on the mend?

The vertigo is the worst. I already have brain injury/neurological problems (probably post-encephalitic), so the Lab stuff had me freaking out -- I thought I had developed a progressive neuro disease. This is not to say Lab is a pleasant - ON THE CONTRARY.

One thing I have learned from this site -- my GP is going to provide me with an ENT referral PDQ when I see him on Monday! I want to begin the VRT asap.

Thanks for this site.

Karen


I don't know whether to laugh or cry after finding this sight. I'm overjoyed not to be the only person in the world suffering from this bizzare illness, but also so sad for all of us. I am going on 8 weeks still undiagnosed. My symptoms began July 2, when I believe I got water in my ears (more in the right) which I was unable to shake out. I figured sleeping on that side during the night, the water would drain naturally. I woke up the next morning with really bad spinning sensations, ringing and whooshing sounds in my ear and really bad nausea. I called the dr. who prescribed an anitbiotic and meclazine, but nothing has really helped to much. Saw an ENT ahd the usual tests MRI CT scan, ENG, he swore nothing was wrong. (yeah right, am I lying about these sympoms?) He never even mentioned VL or offering me an alternative course of action. I did see an acupuncturist which did help some, and am scheduled for some head and neck massages. The list to see specialists are soooo long!, I have two children, 11 and 7, my youngist is physcially handicapped (born with only one leg) and it has been so difficult being a good mom and helping her do things she can't always do. Some days are ok even great and I think i'm fully recovered only to wake up another day dizzy and nauseous and unalbe to function like a normal person. The water feeling in my ear has finally passed which is nice but the dizziness and loss of balance is horrible. I do have slight hearing loss now in my right ear. I have become so anxious and depressed I sometimes would rather die than live like this for the rest of my life. I'm off today in search of Ginkgo thanks to your sight. I will try anything. Today isn't too bad so far, but yesterday was awful (how can that BE??) Thanks so much for sharing your stories and support. Any ideas on the more homeopathic methods are welcome. I do take CLonopin for anxiety which seems to help as when I am having a bad day, it makes me so anxious the dizziness gets worse.

anyway, i've gone on too long, but it's been so nice to have people get this!!, I think my family is so tired of listening..

Lisa E.


Hi All

My update is 13 months and still not fully recovered.Just cant kick it fully.Keep getting set back by colds etc.

maybe one day I will kick this...I pray its not going to be a life long illness.

Deus


Hello to ALL,

I am so grateful for this site and each and everyone of you who have chosen to post.I am trying for the 4th time now to post.I am not CLEAR to why it is not taking ,but..I WILL get on here.

Thank you all again for your sharings,advise & most of all support. Lisa


to Karen and Lisa E. Just read your postings and so much of your situation mirrors what I went thru,I thought I would offer a sugestion.I also had the fluid in the ear thing however it really didn't effect how I felt and has fairly well gone away now, as I said earlier I'am four months into this thing which my ear specialtist said was BPPV. Using the Epley manuver my dizziness has gone away. Unbelievebale happening.My earler posting was the 24th Aug. Good luck.


Hi, guys

John - you are probably, the only one person from whom I have heard absolutely straightforward: "EPLEY MANOUVER HAS ELIMINATED MY DIZZINESS". It is absolutely great and I am happy for you!" John - you said: "At six weeks my GP sent me to an ear specialist who immediatly diagonised me with BPPV. On the fourth of July I sucessfuly managed to do the Eply manuver which elimitaded my dizzines. What a day that was.I still am a bit unsteady on my feet not bad tho,tension in the neck and back of my head, once again much improved.I,am only four months into it now but I believe I can see the end in site.I also can relate to the fuzzy brain thing." John - I still have a question concerning YOUR SPECIFIC terminology. What do you mean in your statement by DIZZINESS? Is it short bouts of "positional vertigo", room spinning when you turn your head in horizontal or vertical plain? Or what? You admitted, that you still have other WRONG things going inside your head...

I am sending best wishes to everybody on this website. I am reading ALL the posts - just too exhausted by my condition to response to all of you.

Anna


Hi John,

My ears actually feel fine now for the last few days however I still cannot get over the dizziness and nausea and I sometimes wonder if it will ever stop. I am getting a referral for VT this week and I ordered some Equitab (thanks to some helpful suggestions from this site) and i'm hoping it works. I'm happy to hear your no longer dizzy!! Looks like there's hope. take care and thanks!!

Lisa E.


Hi ALL,

I am so very happy to be on.Also being happy was always a very natural thing for me.My story is since the middle of June 06, I have been diagnosed with Labs.Since then ,around 8 weeks ago(but hey,who's counting???)I also have had MRI,lot of blood work Lyme,Lupus,etc.I am so very THANKFUL all this STUFF came back normal.Also went to the ENT had ALL those special tests.They also came back normal (whatever normal is these days) So diagnosed in the middle of June,yet had all these tests doctyors etc.. to get clear and under my belt.

MOST HELPFUL for me so far.VRT & VERY POTENT BREWERS YEAST.I started VRT around the 20th of July I go 2x a week faithfully and do my exercises 4x a week faithfully at home I allow myself 1 day off.

I am nothing like I was 8 weeks ago, I did believe I was DYING and seeing I was still around I believed I was becoming a paranoid FREAK.

Thank you so much for this site,I also have become a member of VED got lots of great reading material and an awesome DVD.(COPING SKILLS and STARTEGIES-dealing with Vestibular Disorders)A lot of education for me regarding all this STUFF.

I sm still hoping to wake up one day & it be gone like it came.I do get down,sad,blue,angst,not all the time but enough times that I beleive it is creating dificulty for me with my family relationships & friends they just don't get it.)most, not all ,my husband and children are very supportive)-most of the time.

Oh, let me not forget to share, I got so called secondary symptom-some kind of REFLUX or GERD. They say created from all the belching with all the nauseau.So since July 21st been on Nexium 40 mg. 1x per day.then Protonix 40 mg. 2x per day. then Aciphex 20 mg. 2 x per say.Now removed from all of them after a month (they all gave me really bad stomach pains more nauseau etc.)Yesterday started Prilosec 20mg. 2x per day over the counter (Let's hope this one works and gets rid of my Reflux/Gerd/??)Also as of the 21st of July have been taking 10mg. of Reglan per day.It is suppose to stop Nauseau.I am afraid to look up the side effects of this.

Sometime I want to throw all meds out,dig a whole crawl into it and cry to myself for a long time.Then I know how lucky I am that this is all it is and I have 2 great children & a great husband,and added to all this GOOD STUFF is this site THANK YOU ALL for being here.

Anyone else out there experience a reflux of some sort??Lots of belching?? etc.

ALso for any of you who have been thru and are going thru VRT,Is it just me or how about all the BODY ACHES.arms,legs,chest,back,groin etc..

So here I am a 3x New York City Marathon Finisher and now I just want to walk a straight line.

OPEN to all support & feedback, Thanks, Lisa


Chris , chad?

You guys still around.How you guys holding up.

Dizziness gone yet?

I was doing pretty well, but keep getting set back by colds.

13 months for me, unbelievable!

Deus


Hi all, I was wondering if anyone has experienced severe HOT FLASHES and with it, heart palpatations until the flash subsides. This had woken me up in the middle of night last night and it was really frightening. I've also just turned 40 and not sure if it is peri-menpausol, or perhaps the anti-depressant i just recently started. Any feed back would be great. I'm holding my own today so far with the dizziness and nausea, but the last few days were rough. Hope you guys are feeling well.

thanks Lisa E.


Hello Fellow Labbies,

It's been a while since I last posted. I got this in Aug. 2004. Recovered completely in about 9 months and relapsed last Feb.- March. I wanted to know if anyone else notices the dizzies getting worse when it rains, barometer changes? This time I got BPPV with it. It is not as bad as the first time, but the anxiety and depression are still bad. The dizzies are worst when when the weather is bad.

Lisa, I got hot flashes the first time and I menopausol, many of the symtoms overlap. I live just outside NYC in Jersey. Let me know if you would like to talk.

Good luck everyone, this too will pass eventually.

Robin


Hi Lisa E.

I gave some of my story a few posts up.I did leave out early on I would wake up soaking wet around the neck & chest area,at times get chills some time on & off,early on I felt a feverish feeling yet I did not have a fever.I am 43 .I have been asking doctors,friend etc.Am I peri-menopausal?They all have the same reply,OH NO,to young.I know I was told menopausal 48-52 why not peri at 40-48 ???????

Lisa E-if you do not mind me asking.Are you on anti-depressants as a symptom being treated for the labs? Some of my closest family members recommend I go on Zanax for all the angst I have been having? Anyone else & if so or not,your support & feedback here would be apprecaited.

Are there side effects to Zanax?I am SO not a medicine take,but geeeeeez I want me to come back to me & my family.

Thanks, Lisa


Everyone:

Well, I saw my GP yesterday (Monday), but the soonest I can see an ENT is Sept 28!!! By that time it will be at least 6 weeks with this dreadful problem.

I have been following many of the suggestions posted here - grapefruit juice, (more) gingko. Also, having read some of Dr. Timothy Hain's websites, I decided to sleep only on my left side (my right ear is the source of the problem). All this seemed to have a beneficial effect. However, something happened last night; today I feel so lousy again. It's so discouraging!!! I don't feel as badly as at the beginning, but I'm far from great.

Dr. Hain has videos on how to perform the Epley manuever and another similar treatment online. Has anyone done this themselves at home? I don't know if I can wait til the end of Sept for the ENT appointment.

I really appreciate everyone's suggestions.

Karen


I have been expereincing lab like symptoms now since February. After 3 specialists and not alot of answers its looks like this will be the new me.I so want the old me back. I have had some help from physio-she feels the tight neck is making things worse. I am preparing to return to work hopefully on a part time basis because I know that I can't cope with fulltime feeling unwell. Does anyone have any suggestions for this transition? I cannot believe how this has claimed me. Thanks for your support. Margaret


Hi All,

I am so happy that all of you show up and share on here THANK YOU for this, it supports me a lot.I am happy I have finally got myself on this site.

Margaret, keep us posted on how part time work goes for you.My only suggestion to you is one day at a time,one hour at a time and with this LABS STUFF soemtimes one minute at a time.

Robin,I think you where speaking to Lisa E.,but I am also Lisa. I live in New York 1 hour North of Manhattan. I have some really good friends in New Jersey.I would love to have a voice to talk to about all this LABS STUFF.May I call you and if so may I have your phone # ? I would give you mine but,I am not sure if we are allowed to posts our phone #'s on this site.

To everyone on here I hope & wish that we all feel better sonner than later.

Thanks for being here, Lisa


Hi Karen As I said earlier the Epley manuver is how I got rid of the last of my head spins or dizzines, what ever you want to call them, they were extreme. I read about them as you have and then asked my ear specialiest if the manuver might help.He showed me how to do it, with limited succes in the doctors office. I continued at home and completed the manuver with complete relief from the head spins. What a relief it was. Very simple manuver. Laying on your back,your head must be below your shoulders for it to work. My situation was called Benign Paroxysmal Vertigo {BPPV} debri in the ear canal which had been moved and was in a bad spot and had to be re positioned which this manuver accomplished. Lots of reading out there regarding BPPV, which you all probaly aware of. Might want to talk to your doctor about the Epley manuver if you have BPPV. The articals I have read have up to a 90 percent chance of being successful. I still have tention in back of my head and neck and a bit fuzzy head, but nothing I can't live with. Hope this helps. More of my situation was posted 24th Aug.


Margaret

Welcome to the labs 'game'.

I have had this 13 months and was off work for 4 months and went back in April part time for a month...it does help with the transition and you will be amazed how much you can handle!

Deus


Hi Robin and Lisa,

I live in Mass, and would love to talk about any of this email is lemino66@yahoo.com

I also had my gyn swear I was too early for menopause, but my mom started having symptoms at 38, my cousin (on her side COMPLETED menopause by age 34) and I can notice the mood swings and irregular periods already. So I don't think everyone falls into the most common categories. I am on Clonopin for anxiety and it also helps with the dizziness. I find it definately helps keep me not obsessing as much with the Lab.

I took an anit-depressant (because of the depression from this illness) for about 3 days but that's when i had the severe hot flashes and heart racing, thinking it was a side effect, i stopped taking it, but i do have a note into my Dr. to ask if it's a side effect or not. If it isn't I'd like to try them again because as we all know this can be debilitating and if you have kids, a job, a spouse, any social life at all, you just want to be NORMAL again , or at least ok enough to function.

thanks for all the input, i'm still waiting for the Equitab i ordered am am curious if it helps the dizzies. p.x. I do find it worse with weather changes.. xoxo Lisa E.


Hello Lisa & Lisa,

Here's my e-mail, We can exchange phone #'s there:

remazer@comcast.net

I look forward to talking with you both.

I take xanax as needed, I haven't experienced any special side effects with it. During my first bout with VL, I went to all the doctors and really didn't get any annswers, so I didn't even bother this time. It goes away in time.

Robin


1 YEAR 8 MONTHS....just spacey head feeling will not go away....wonder if this can last forever for some people...i hope not


Chad

What percentage would you say you at? 95%?

Are you doing VRT?

It will go, it wont last forever!

Deus


Chad, are you off the dizzies and nausea at least? And can you at least function with the spacey head or are you feeling desparate? This really bites...I keep hearing eith time it goes away, but 1 year 8 months!!! God Bless you..

Lisa E.


Hi everybody! I've been eager to write for some time now but I wanted to wait 'till I was positively sure of what I'm about to report. Some of you will remember that there was a bit of a fuss over GRAPEFRUIT back in the spring. That was because a woman named BEATA ( Flight attendant ) recommended juiced, whole grapefruit as a kind of wonder cure. Well I tried an extract of grapefuit back then as an experiment and yes, I did feel a decided improvement over a couple of months.

She also went on to recommend a pretty drastic change in ones general diet. On the strength of the grapefruit results, my wife ( not a labs sufferer ) and I went on to further experimentation on the lines she had suggested. About 2 months ago we cut almost all sugar, dairy products, and fat out of our diet. We cut back roughly 50% on all grains and COMPLETELY cut out ALL refined foods! - We already had cut meat from our diet years ago ( which brought about some improvement back then. )

What we added was a substantial increase in fresh fruit, raw and cooked vegetables including beans and nuts. Salads have become a large and important part of our diet. We also quit drinking coffee, pop and commercially prepared juices.

Well, ............... I have been AMAZED at the improvement!!! I ended up doing things in the last month that I haven't been able to even think about for years. I've had this condition for over 20 years and have never seen improvement like this. The dizziness has retreated to a point that is almost imperceptable and the BEST part is that I feel a growing sharpness of mind where there has always been a more or less fog. I find I can sometimes look at a computer screen for hours when needed, which would have killed me before. My wife, ( who has excellent health anyway ) even says SHE is aware of a growing sense of well-being!

So, there you are. I have no idea whether this is permanent but I can't see how it could be some improbable co-incidence. - I think it's worth a try people.

- A book to check out: " EAT TO LIVE " BY JOEL FUHRMAN M.D. - There are lots of others but that's a good one.

Fond Regards, Tom.


Wow, Tom!

I beleive you - YOU ARE A GREAT OBSERVER (I have been watching all of your posts with extereme attention!). I printed out this post and I will think more over EVERYTHING that you have said later.

It looks like LIFESTYLE AND DIET - ARE KEY WORDS IN BEATING THE DIZZY MONSTER for many-many sufferers.

My case is somewhat different, I beleive. But anyway - all, that Tom has said is very-very important. Guys, pay ATTENTION to the Tom's post.

Anna (34 years with IT).


Hi everyone,

Robin - sorry to hear that you are suffering with this again. Have you tried the Epley manoever for your BPPV and VRT for the labs? Any luck?

I've been suffering for almost 10 weeks now and have actually (knock on wood) had a week with no nausea. I found a Physiotherapist trained in VRT and have been given some exercises to do 5xday. Do them faithfully and try and get out as much as I can....grocery stores, walking, walking, walking etc. Seems to help.

Tracy :)


Hi I posted a couple of weeks ago. I've been suffering almost constantly for the last two months after flying. It happened last year too after flying but this time it is a lot worse and I keep getting repeat episodes. I get so tired and when I'm tired the symptoms are worse. Luckily I haven't been nauseous but the dizziness is horrible. I've been sleeping sitting up for nearly two months now because the room spins when I lie down.

Anyway I went back to the doctors and I think she finally felt sorry for me (I was almost crying because I feel so sorry for myself!). I've now been reffered to the local hospital for the Epley Maneuver - I just have to wait and see how long before the appointment now.......

Take care


i acutally had a bad setback this weak...shaking couldnt walk real well after like 1 year and 8 months of getting better.....i i realized drinking alcohol the next day is bad,,,stress,,,,and also doing to much activity bring it on for me....but for the most part the lightheadedness never goes away it just gets worse when i do one of those activities for a few days....


Dues,

When you say setbacks - what symptoms are lingering for you? Hope that it gets better. You still working?

Tracy:)


Just checking in....I am at 15 months and still have not returned to work...but I am looking for a job but I am scared. I am doing better than when this first hit....but the same nagging symptoms like ringing in the ears, movement in the head and pressure are still always with me. I am beginning to feel that there is damage there and I will always have trouble w/ stores and busy places. Doing things in the evening are always hard for me.....so basically I have no social life anymore. I am trying to stay positive but it is hard. Hope everyone is doing well and if there are any positive stories of anyone getting well please share beacuse everyone on here needs a glimmer of hope! :D


Read the following - even after long-long illness DO NOT GIVE HOPE! (copied from thedizzylounge.com):

Hi everyone

I feel so bad posting that I feel good , when I see everyone feeling bad. But I just wanted you to know that it has been a long hard road and don't give up because if I can get better you can too. My days consisted of getting up cleaning a little and showering and going back to bed. This went on for years with a few days here and there of feeling ok. I have now had several weeks of feeling good. I am not 100% but I am alot better. I know that one day we all will be able to live a decent life again. Please don't give up , I almost did and I am so glad now that I didn't.

I hope everyone has a wonderful week. Happy labor day.

Missy __________________ "A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked."

Vertigo, Dizziness, Tinninitus, fluctuating hearing ,loss of balance. I was told I had panic and anxiety for years. I switched doctors and she sent me to an ent. After alot of testing I was diagnosed with menieres in 2005. I have been living with this for 6 years.


well i went on vacation for a week, drinking and stuff...and woke up the morning i got home....and felt completely lightheaded...and tired and shaking....couldnt look at a computer etc.....like i was the first few weeks...its horrible....


lauren do u have the lightheaded feelign constant 24/7 for 15 months...i have had is for 19 months constant...never completely went away....u know the funniest thing...i had this twice beforee once the lightheadness last 4 days...the next time i had it about 14 days....this time 1 year and 8 months...unreal uh....i just think my ear is really damaged this time...


Hi Tracy

My setback symtoms are just a weird off feeling- not quite with it- feel outside of my body and spaced out and slightly off balance

Am still working hard and have had a good week this week with minimal symptoms.

Deus


hello everyone! im coming up on my one year sept 18th and im soooo much better than what i was. i still have occasional dizziness when i get real hungary and stuff but i think thats normal. i eat and then i feel better. im left with anxiety real bad sometimes. i was on paxil cr for 6 months and said screw it....i can do thi son my own with no meds....so i took the plunge and went off and now its been almost 2 weeks off it completly.

alot of times i can look around and be 100% i still have off moments when im tired and hungary and nervous.

i find i have an off day after drinking the night before. its crazy...ill drink and feel lightheaded and off balance...but ill enjoy it. but when its not from the drink...i hate it. its all mental.

just wanted to check in and give my progress. almost a year on and almost 100% its been a crazy year and i wouldn't ever do it again....but im a better person for it and i love life the way people should again.


Hello, This is my first time to post even though I have read other posts for 9 weeks now. I must first say that this site is so helpful to others especially in the beginning when trying to desperately find out what is wrong.

My ordeal started 9 weeks ago.. I was recovering from an upper respiratory infection, and went shopping in a large supermarket, turned the corner and wham the world has not been the same since. I have had 24/7 dizziness (rocking, swaying,whirling),pressure in the head and ears, sore eyeballs,vision problems, eyes sensitive to sunlight, chills, jaw pain, left arm feels detached at times, very tired, slight buzzing sound in ear... etc. I am unable to drive or ride in a car, my brain is unable to process all the motion and lights. The car will be moving, but it seems like my head has been left behind. Stopping at a light brings on such strange sensations as if I am still moving that I panic. I forced myself over the 9 weeks to go once a week to the grocery store. I would have a goal to only get a few things at a time, now I feel more comfortable at the store even though I am just as dizzy. I have been to a GP and an ENT. The ENT has suggested a neurologist, but from your advice on this board I will make an appt with a neuro-tologist. I read somewhere that an ENT mostly studies about the nose and throat in school, and studies about the ear the least.To find a neuro-tologist in your state(I live in the US) there is a website that I found ...www.entnet.org then hit find an ENT in the left corner under the heading "about us". Put in your state w/o a city as there are not too many neurotologists. Thank you for being there at such a challenging time. Elizabeth


Hi Lauren

Please can you explain to me what you mean by 'movement in the head'.

Does this mean that you feel off balance and get funny sensations in your head?

I have had this for nearly 2 years now and everything else i.e. the anxiety and dizziness etc has gone apart from feeling off balance a good deal of the time. When I feel at my worst I feel as if something is shifting in my head and that I am going to fall over though I never actually have. I get these sensations when I have a cold or an allergy such as hayfever and my ears feel blocked.

Sandie x


Chad- I do have the lightheaded feeling....but only in certain situations like the grocery store...and always at night it is worse and I notice it more like when I try and do something social in the evening basically I will feel weird and just not right till I have a few drinks...I like drinking for fun....but I do not like the feeling of having to drink so I can get through the night.....do you know what i mean? That seems to be the only way I can go out lately.

Sandie- When I say movement in the head....it just feeling like my head is rocking back and forth or something..like it is never quite settled or clear like it used to be. My balance is fine and always has been...it's just this constant feeling the the signals getting sent to my brain the deal w/ movement in the body are screwed up. When I move around or excercise I feel much better....but when I sit down and try to have a converstaion w/ someone that's when I feel it. It's very frustrating and I just wish that I could figure out a way to set everything straight for good!

Hope everyone out there is having a good day!!!


I'm glad to hear so many of you are beating this illness. I haven’t been around recently because I’ve had quite a few problems to deal with. One being the fact I just haven’t been getting any better, despite 6 months of VRT which I’ve been doing diligently. In fact some of my other symptoms, i.e. muscle tightness, strange sensations and pins and needles have been getting progressively worse. I saw the Consultant Neurologist on 4 Sept and she sent me for 2 MRI’s. One for head and the other for spine. I had the results yesterday and I’m quite devastated considering I’ve been suffering for almost one year now. Apparently I don’t have vestibular neuritis, nor uncompensated labyrinthitis which I’ve been told all along, despite a brain scan 11 months ago and various other tests. It seems I have had an inflammation in the brain which has left 5 lesions, one being in the vestibular nerve. I have to have a lumbar puncture now to see whether it’s multiple sclerosis, which seems to be the main concern. I really don’t know what’s going to happen to me now. I’m feeling very bitter about things at the moment because of the complete and utter mess the NHS have made of everything since last October (excluding Chris Wood, of course). I’ve been told to carry on with the VRT to try and get the balance sorted out but I don’t know what the prognosis is yet. Hopefully the lumbar puncture will shed some light on what’s happening. Anyway, I don't know whether it's appropriate of me to use this site any more in view of what I might have, although I do still have a balance problem. Let me know what you all think as I really do need some extra support right now.

Frances x


frances...when u went to the ENT..did they run tests on your ears and stuff...cause i cant get better and im getting worried and its been 1 year and 8 months...but they said my right ear was really damaged but no brain damage or nothing they told me....just curious????


frances im with you...im getting really nervous to these days...1 year and 8 months just dont seem right..even know the ENT told me it could take a long time...im going to a neurologist to get a 2nd opinion...i had a ct scan done and all those ear tests...ct was good and the ear tests said my right ear is damaged....just wondering if u had that stuff done before


francis

wow im so sorry to hear about that. what did they tell you was going to happen? well now you know why all this stuff has been happening.

did the 1st mri show nothing? that wouldn't make much sense if the 1st mri didn't show anything yet you were having symptoms.


francis

hey. the thing i don't understand is i thought it was usually easy for doctors to tell if the problem was coming from the brain or the inner ear.

maybe you had labyrinthitis and developed this other thing later. im not sure what to think about that.


Dear Francis,

Thank you so much for having the courage to put yourself out here for all of us.Please keep us posted on your lumbar puncture & most of all on YOU.I feel you should come on here .Your posts give much support and we can support you back.

I have been going for the VRT consistently for 7 weeks now and do it at home daily.I to have noticed tons of muscle,pulls & tons on pins & needles in my feet a lot mostly my left.MY Brain MRI (back in JUNE) when this all started up also came back normal (so they said) I was wondering if all the VRT created other stuff.Muscle imbalance creates a lot of medical problems as I have been reading (maybe to much) .

Francis keep on showing up on here.

HUGS to you-Hope you can feel them. Lisa (from New York)


ill tell you what ever i should have never read frances email...im scared to death now....unreal.....but its a good thing though i have another neurologists app. wed.


frances ive also read over some of your past stuff like your left arm and u cant tell cold water from hot water...u said your left side is messed up...ive never had any of those sympotms...mine is like deus's just light head and my ENT said my right ear is very damaged


Oh, Frances!

Visible lesions in your brain - what a shock to learn this!

On the other hand: if you DO have inflammation in some parts of the brain – maybe, it is good (if this word is appropriate), that it has been DISCOVERED NOW, not later. 11 months ago there were no signs of anything wrong on the MRI (no visible lesions) but the inflammation was in its full strength (according to your symptoms!). Unfortunately even MRI test CANNOT show such inflammation when it is in its full strength. It can show “lesions” in the brain nervous tissue AFTER the inflammation HAS DONE its horrible work (post factum). If doctors could somehow CATCH the process earlier – they would prescribe you strong ANTI-INFLAMMATORY drugs like corticosteroids, for example, in order to stop, or diminish the inflammation right away. To tell you the truth, I do not understand, why doctors NEVER prescribe strong anti-inflammatory drugs to patients with severe vertigo, or with long-lasting chronic, debilitating dizziness accompanied by severe headaches (like myself, for example). To my question WHY – they usually answer: these medications have many possible side effects. So what???? I do NOT have any life anyway!!!!! I barely walk, tired immediately of even slightest activities, and I have to literally hide from ALL SOUNDS (they send me spinning). It is apparent, that I DO HAVE some kind of inflammation, maybe, in local small regions INSIDE labyrinth, or IN or CLOSE to vestibular and auditory nerves (they run together!). But none of the doctors are willing to TRY corticosteroid treatment on me (I asked them many times) – they are afraid to TAKE RESPONSIBILITY.

Well, my own three MRI tests (1995, 2004, 2006- brain and spine) were perfectly normal. You would not believe me, Frances, but in 2004 my condition (excruciating headaches, vertigo, nausea, tingling, insomnia, depression, fatigue) was so horrible, that while going to the MRI test I was praying: “God, LET THEY FIND SOMETHING on my MRI test!!!” Because, if they would have found something – it would mean, that the ENEMY is recognized and it could be ATTACKED (with anti-inflammatory medication, or with surgery, if it is a tumor). I have a friend in Chicago – she has undergone a big benign brain tumor surgery several years ago with excellent results. She drives, she travels abroad ALONE and she has only occasional headaches. What a poor creature am I with all my “normal” tests?

Frances – I hope that the spinal fluid test will shed some light on the nature of your inflammation. If I were you I would find every possible information on types of tests of spinal fluid and their diagnostic accuracy. Ask you neurologist – what kind of analysis they will do with your spinal fluid? Probably, you would do this without my advice (you are a very smart lady). Keep us informed. I think it is appropriate for you to return to this page. Diagnosis “vestibular disorder”, “labyrinthitis”, “inflammation” somewhere in the head” can be all inter-related and can change at any time.

Everybody, stay strong. Do not give up – in great number of neurological patients their symptoms get BETTER with time.

Great love to all of you,

Anna – almost 34 years with IT – on/off (have been getting better!!! extremely slowly since 2005).


Francis,

I am so sorry to hear your news. How upsetting and disappointing for you, after all this time. I can only send the message that you ARE welcome to post here anytime you want as we would all like to know how you are doing. You need all the support you can get :)

Chad - have you been doing any VRT? Maybe getting a second opinion is best and more therapy? Don't lose hope.

Tracy


i heard that a person with 100% damage will compensate faster than a person with 10% now does that mean that a person that has this for a year or alittle longer probably has less damage than someone who is better in 8 weeks?

my doc had told me that the damage in my right ear was minimal. and after a year of this i still have setbacks.

just thinking out loud


Frances, of course it's appropriate for you to continue to post here. Sharp Blue exists partly to support worthwhile discussions, and I can't imagine anything more worthwhile than people supporting each other through difficult times.


You will all get better and so will Francis.

Don't give up hope- otherwise you will not get better.Body and mind are one- and both need to be strong to beat any illness.

By the way- apparently I might have MAV.Even though Im a lot better, the doc seems to think there is something preventing might full recovery.Now taking migraine preventatives.Lets see if they work!Will let you know!

Deus


Thanks for all the well wishes. It was never my intention to frighten anyone (Chad!) and since my posting I've had a chat with my balance specialist (Chris Wood) who kindly explained a few things to me. Firstly that he thinks it's highly unlikely I have MS as it all came on so suddenly. He thinks I've had a virus of the brain which has caused certain parts of it to swell up. One of the lesions is on the vestibular nerve, apparently and I should still make a full recovery from the balance problems with VRT. I think it's just going to take a little longer. He says viruses can occur like this and just as labyrinthitis is a viral condition the prognosis is the same. It's really eased my mind I can tell you!!! I'm having counselling to come to terms with all of this but I've decided to chill out. I find I've worried so much that I actually can't worry anymore.

When this all started almost a year ago now, I was hospitalised and had various tests but never an MRI. I had a CT scan because they were looking for tumours or signs of a stroke. Chris has explained that many viruses can cause the balance to go awry and they don't always get picked up. Indeed, if he hadn't sent me to the neurologist I might never have known about these lesions. The body is such a complex machine and I've always taken mine for granted in the past but not any more!!

I'll keep you all posted.

Love Frances xx


Hi,

I have had labs going on 3 years. Had all kinds of testing done, etc. Went to VRT for months and feel the same. It's discouraging!! Hoping someday I will wake up and it will be gone....


hi folks, ok i'm over having my little tissy over a post of mine not being published. i read your story, Frances. please hang in there. it's been over 3 months for me now and i am having more ok days in a row than bad ones. i, too, was suspected of having ms. i've had mri of the brain, ct of the neck, mra of the head and neck (checks for blockage), 3 ekg's, and echostress test, lupus test, rheumatoid factor test, several cbc's, complete thyroid panel. everything is negative or normal although i know i have been ill and am still. i've been to a neurologist but he doesn't think i have ms. i guess i will have an mri of the cervical (neck)area if i get worse but the neurologist wants to take a wait and see approach. i have an eng next friday to check my vestibular function. if that is normal i think i'm going to scream. there is no way that can be normal. the vertigo started in my left ear and during the next week i had severe flu-like symptoms but with no upper respiratory crap or vomiting. i was a little nauseated, dizzy, had that funny, obstructive feeling under my jaw and chin. still do but it is not as bad. my periods are shorter. i am honestly beginning to believe that i have had west nile virus or cytomegalovirus which i have heard has an affinity for salivary glands. no saliva whatsoever was also one of my initial symptoms. i think i got whatever i have from a mosquito but of course every time i told doctors about this they just blew it off. i am so fed up with doctors. they don't talk to each other. and they are so textbook. anyway, the vertigo in my left ear was positional and i was diagnosed by the first ent with bppv. but i quit seeing her because she blew my flu-like symptoms off as seasickness due to bppv. believe me, i know better. one doesn't end up going to a host of specialty doctors for seasickness. i am 46 and have always enjoyed good health. i would get an occasional cold but that was even rare. always tried to take care of myself. i was fine on 6/5/06 and on 6/6 my world fell apart. the 2nd ent i went to said, "oh no. you didn't have labyrinthitis or bppv. you've got a neurological problem. that's how i ended up at the neurologist. i did do the epley maneuver on myself several weeks ago and in one day i cured my left bppv. imagine that. i was scared when i did it but i was tired of all these doctors telling me what i had and didn't have and none of them were talking to each other. lots of wasted money on my part. anyway a few weeks ago i ended up with bppv in my right ear. i woke up from a nap and had such a dizzy spell that i could not walk. it happened the next day too. when i laid down in bed and turned my head to the right, the room spun. my vertigo only happens when i do this. i do have dizziness though throughout the day but it waxes and wanes. the most troubling symptoms i have is this horrid feeling under my jaw and chin. it feels kind of numb and like something is swollen although looking at me one could not tell anything. this illness was so sudden. i believe it is viral-a very bad virus. the west nile can only be checked in the spinal fluid. i have not had a lumbar puncture. i'm sorry i've rattled so much. i keep reminding myself there are so many people much worse off than me in so many ways. i will handle whatever illness i have if i could only get the damn diagnosis. and yeah, doctors don't want to prescribe meds that could actually heal or help someone. they are nothing but cowards anymore. i would be happy to sign some dumb waver regarding a brief dose of steroids. get well folks. megan


dear frances, there are lots of diseases that cause lesions in the brain. just to be safe, tell your doctor to check you for histoplasmosis which is a fungus. you get it by inhaling the spores which are commonly found in bird droppings. it is curable!it's also time for doctors to look for parasitic origins as well as these are curable! yes, it's easy to say ms but you need to be checked for fungi and parasitic infection. maybe check out an infectious disease specialist. please do this. for some reason doctors tend to look for parasites and fungi as sources of infection last or never. it's always viral or bacterial. isn't that what we hear all the time? please get checked out asap. ooxx megan


lva

did your tests show anything?


Hi Chris;

I had the ENG test and all the doctor could tell me was that the left inner ear tested abnormal. It's just very frustrating at this point. I did VRT for 4 months and I really didn't feel much better. I took a month off work for the exercises and did them for 3 months as much as I could. I am going to see a specialist in Boston so I am hoping he can help.

-lva


LVA,

NO improvement from the onset? Symptoms not going away or do the eax and wane? Have you had other tests done? Still doing VRT now?

Tracy


LVA have u had for 3 years continously...spacey head feeling like myself...have u been tested from a ENT specialist???

cause i basically have just had tiredness and spacey head feeling for the last year and 1/2


LVA...that is exactly what happened to me...ENG said my right ear is abnormal....this must just take its time....cause the first 2 times i had it it lasted 4 days and the 2nd time lasted 3 weeks....u are exactly like me...


I am not doing the VRT anymore. I don't have much patience. Just working full time being a mom and significant other is hard enough without walking in circles and my physical therapist said I should do the exercises at a minimum of 4 times a day. I really didn't see much difference when I was doing the exercises. I have had this feeling of being drunk for 3 years now...continuously. There hasn't been a day when I have felt like my old self. The doctor that sent me for the ENG was an ENT. Just typing that made me dizzier. Is this site based out of the UK?? I am on Boston time. I am excited to see a doctor that actually specializes in vestibular disorders. I just felt like my primary care doctor is sick of me visiting and telling her how I really feel. She said she has done all she can. That is why I am getting a 2nd opinion. It's to the point where I don't even want to go the cafeteria in my building at work when it's real busy or even shopping....which I used to love!! I never thought in a million years that an ear disorder could change a life so much!!


lva

its been constant never changing always feeling this way for 3 years straight????


yes, it's constant. Like I said almost feeling like I am drunk. It's kind of scary. I have vision problems, etc. They think I am glaucoma suspect. I also have toxoplasmosis. Seen an endocronolgist and had all kinds of testing done there too. I had gained alot of weight in a short period of time so I thought maybe it was diabetes because it runs in my family. Tests all came back negative. Just had a MRI last week and results were normal. I was thinking maybe MS because one of my co-workers daughters was just diagnosed and my friend noticed the more stressed I get I have like face twitching. I am at the end of my rope with this problem. I am just grateful that I found this site. Thought it was all in my head. My doctor is trying to pass it as depression. I mean I could be a little depressed after feeling this way for so long. Who wouldn't??


Hi, I got viral labyrinthitis a couple of years ago and it's here to stay! Some people get better, some don't. Apparently, it's 50:50. Anyway, here's my story.

I was having a normal day at work when I sat down at my desk and got very dizzy. I thought the best thing to do was to try and drive home - huge mistake. I couldn't get out the carpark and had to go back to work. Someone gave me a lift home and the whole thing really kicked off, spinning, nausea, anxiety, hyperventilation, a full on vertigo attack. By the time we got to a medical centre I was a bit of a mess. They saw me straight away, the nurse said, "Hi, I'm Mary", I said "Hi, I am going to throw up" and had a huge chunder into a bag. They gave me oxygen and some Stemetil and things calmed down, but I still felt very fragile. "Go home, go to sleep, you'll be fine, it's probably food poisoning"... Hmmmm, went home and had a sleep. No-one mentioned viral lab!

I felt ok the next day, a bit groggy but otherwise ok. Then bang! Out of the blue, I had another vertigo attack. This only lasted 5 minutes and I felt ok afterwards. I noticed a tingling from inside my scalp, just before it started. My neurologist said this was psychological, but I don't see how as I have never experienced that feeling before and it was before the attack - not during - so how would I know.

Anyway, that one passed and the next day I got totally hammered by a final attack. The same tingling happened again, just before the attack. I managed to get to lie down and ride it out. It was agony! Little did I know a nerve in my left ear was busy being damaged beyond repair! It felt like toothache. When it finished, I thought it would just clear up. Ha! No!! I went to the Doctor and started on the road to a final diagnosis - which took about 3 months on tests. I finally ended up with a balance specialist and tests being conducted a special centre in Sydney, Australia (where I live). I had/have no balance response in my left ear. Gone, history, toast, asta la vista, kaput, knackered, thanks for coming!

That explains why my vision was like a wobbly video camera - as the balance function is integrated with the eyes. I have a grossly abornmal vestibular ocular reflex - which means my eyes have to catch up after my head turns.

I was lucky not to lose my hearing which commonly happens in those cases where there is nerve damage.

Well, that was the damage, but how did I cope? I had read somewhere that activity was the best means of redressing the symptoms. I read this early on in my illness and got out as much as possible. Although fatiguing and unsettling, it seemed to have a positive impact. I couldn't drive for 3 months so I just walked everywhere. I did loads of swimming, until I hurt my shoulder, then stuff in the gym and lots and lots of yoga.

The neurologist sent me to a balance physio and I got a series of exercises I needed to perform everyday - for about 3 hours all up. I practised these religiously and still do them as they give me some benefit, although not all 3 hours. I was and am just really focussed on not letting this get the better of me.

In the meantime, my company made me redundant as part of a wider program. I thought this was pretty low, but luckily I had income insurance to cover me for my illness (another long battle, that took nearly a year to resolve!). The neurologist signed me off for part-time work and I started working with a friend learning a new job.

So, it's been a couple of years now - since Feb 2 2004 when it happened. I still have zero balance in the left ear. The activity has helped teach my right ear to compensate for the left side. I still get all the symptoms, nausea, head-fog, fatigue, but you just have to cope. My neurologist tells me that I have made great progress given the damage that was done (it doesn't always feels like I have). I can only attribute that to being as active as possible and doing my balance physio. I have also been very fortunate to have insurance cover during this time and I've been able to focus on getting better.

My partner is understanding, but despite best efforts can't really understand what it feels like to have your head totally messed up like this. People see an otherwise healthy person and can't relate to something in the head. (Truth be told, I would be exactly the same). In that respect it's quite a lonely experience. It's tough for the partner and family as well. They have to get used to a disabled family member with no discernible signs on illness except for a wobbly disposition and their word for it.

All being said, it's not the end of the world. I've been lucky in a lot of ways (thank god for insurance)! But if you have this, get out there, get active, don't let it get you down because it can. If you do get down, get to yoga or learn meditation to help cope. Fight it , embrace it , do what works for you. It's in your hands! Best of luck.


Hi everyone I haven't posted here for many months....I have been suffering with this life changing virus for 2 1/2 years. Every day when you wake up you never know what to expect. I have a light woozy head most days and at the moment have a virus which is affecting my ears...but still I try to do my everyday activities and go to a light aerobic class 3 times a week. The first 5 months of labs was the worst lots of anxiety and the doctors here in Australia are hesitant to give you xanax...which I only have to take a quarter tablet and it helps so much. I feel guilty asking for a prescription.The thing that I wanted to say is that after finding this site I started to feel so much better and reading that others are suffering as well in a weird way made me feel that I can get through this horrible time. Every day is a challenge just to do normal things like shopping and the groceries....which are the worst places for me. One thing that does help in the supermarket is pushing the trolley it keeps me centred...my husband use to push it but now I do. I just hope the doctors can find something to help us...because to date I haven't had much success. One other thing that I do is keep a diary and write down if you are having a okay day or an off day and after a couple of months can see if there is any improvement...hope we all get through this and everyone keep posting it certainly helps to hear from others in the same boat....Louise


lva

were you ever in an accident or had some kind of neck or spine problems? your able to work full time and care for kids so its not keeping you from functioning. did you ever have a spinning attack?


Hello Fellow Labbies,

I have had VL for over two years now, I got a six month break from the symtoms, But, it came back. I am ususally feeling light-headed, unable to consentrate and dizzy. I continue to fight the depression and go to work. I feel that I'm not accomplishing much and just going through the motions. However, my deadlines are being met, so maybe it's not necessary to be at 100 %. I miss the high energy old me, but I still have to believe she will return. I have been to all the doctors and gave up on all of them. I take an occional xanax when I feeling really anxious and a half of valium when the dizziness gets real bad. I stops the spinning. I have also become a human barameter. I can tell it's going to rain a day or so be fore it comes. My tounge and mouth begin to tingle and the dizziness get worst. Anyone else getting these symtoms? I continue to remind myself, that I may feel like crap a lot of the time, but often no one else knows it and it's not going to kill me....just torture me for God know how long.


Havent posted for a while. Hope eveyone is ok. I am back at work part time after being off for 7 months. Its very hard as I now have to teach like I am on a boat. Still, it could be worse. At least I can walk in a relatively straight line now. I still have terrible tinnitus, a bad neck and as i have already said, movement issues. Iva- How long were you doing vrt? Ive been doing it for about 4 months now and it probably took at least 2 months to start working properly. My otoneurologist said that vrt, alot of activity and ALOT of positive thinking are the key. It sounds as if you are active (work etc). I have found the positive thinking very hard at times, but I must admit that when I am more positive I feel like there is a light at the end of the tunnel. Have you had any specific tests? I personally think its absolute rubbish that there is nothing more they can do. I had VL 2 years ago and recovered completely before my second 'attack' in Feb this year. Im sure it did nothing for your positive thinking either! I hope you find the help that you need. To all- whilst I dont write as often now I do regularly check the site. I just felt that I had to write and comment on those in the medical profession who say there is nothing they can do, when many of us know that this is not only untrue but also completely unhelpful. Just remember that it does get better. Whilst mine hasnt gone completely I am finally able to work again. DONT GIVE UP. I nearly did and Im so glad that i didnt! Sarah x x x x x x


I have not been in any accidents. My physical therapist said it could be cervical which is in the neck but no test to tell for sure. It all started when I was living in an apartment that had a mold problem. I got a migraine and that is when the dizziness started and has not stopped. I can function but can't think clearly and don't have patience like I used to. I have a 15 year old so it's not like I have little ones running around but even she says all the time. "Mom you have changed". Its sad because she is right I don't enjoy the things I used to do.


I was doing the VRT for almost 4 months. I only did them 2-4 times a day while working full time. I did take a month off to do them 8-10 times a day. But like I said didn't feel much different. I have read that some people have been doing the exercises for years. I just can't and work full-time. My job is really stressful so I am trying to find another.


IVA im with you...its so frustrating i try to explain to my family, friends, doctors and ENT about how im feeling that i just have spacey head feeling and lack of energy and they seem not to understand(they think its in my head)....they say diabetes, high blood pressure, etc...i think doctors dont really know that much about it so they say anything they think like MS, blood pressure, ETC......i agree with anna on here its UNCOMPENSATED LABRYTHITIS and if u have alot of damage it does not go away for along period of time...cause like ive mentioned a few times ive already had this before and it went away..but the last 2 times never lasted more than 3 weeks...but thats why i know it does get better....


LVA...do u ever get shakes...like internal shaking...when your tired or any other time..cause the spacey head feeling, tiredness, and internel shaking have been my 3 biggest symptoms...


Sarah, Graeme, Louise and Robin,

Thank you, thank you thank you for sharing your stories. As a relative "newbie" to labs it is so easy to get discouraged and give up hope.

You are all going on with your lives despite the hardship of living with the invisibility of Labs - it is sooo hard to explain to others that the symptoms don't just go away. They simply fade or move front and center depending on the day.

Robin - you sound SO sad in your post. Don't lose hope and pursue VRT. I think it might help this bout go away faster. Both you and Sarah have recovered from this once. And look at how it has helped her and Graeme.

Everytime I come to this website I feel I cannot take another day of this. It is the encouragment of those living through it that keeps me moving forward.

Tracy


Hello everyone...I first posted on 9/08.

Francis.. Sorry to hear about your ordeal, my heart goes out to everyone with these symptoms.

I am at 10 weeks with my 24/7 dizziness. Thankfully, I keep my 2 year old at home, and do not work outside of the home as I am pretty much housebound. I saw a neurotologist in my area and had tests done.They did find something wrong(I have no idea what as I did not have the time or energy to listen to his explanantion). I am now doing VRT. Something that surprised me was that he said constant non-vertigo dizziness did not sound like inner ear. The doctor moved my jaw up and down to listen for TMJ and I do have TMJ. I will make an appt with a neuromuscular dentist as they are dentists who specialize in TMJ. I just thought the fact that a neurotolgist thought that TMJ could cause these kind of symptoms might help some of you out there. Even though I have never had high blood pressure before my GP put me on high blood pressure medicine because it has been up throughout all this. Take care everyone, Elizabeth


can you have damage in your ears so bad that you may never ever get better?? is it possible to have labs or vn and never ever get better??


went for MRI yesterday.ill know results tommorrow probably...neurologist thinks its vertigo..nothing bad cause its been 1 year and 8 months somethign would of happened by now..i had a bad day yesterday...real lightheaded woke up sweating off balance as heck...this disease is terrible


anna

can you have 100% damage in your inner ear and get better? and what are the chances?


Graeme

when you said that some people get better some people don't its 50 50....did you mean in the 6 to 8 week period that the docs say?


Somebody asked me:

"anna

can you have 100% damage in your inner ear and get better? and what are the chances?"

First of all I have questions to whoever asked this. "100% damage" probably means, that you do not have adequate responce to cold-hot water during ENG tests? Is this loss on one side or on both sides in your case? My understanding of this is the following: if you have damage of ANY intensity (even 100%) on one side - your inner ears do not MATCH with each other in sending signals to your brain. So, your brain is "confused" (you feel DIZZY). With TIME (if you continue moving!) you brain COMPENSATES for the one side loss of the inner ear function. From what I have read and heard from other sufferers - this compensation can take quite a long time (months to years)and it is very individual. But I DO know people who where said after ENG tests, that they have 100% inner ear function loss, but they recovered completely. I have not met (yet) a person who was told about 100% of inner ear function loss ON BOTH SIDES. Maybe, such people exist, mayby full recovery from dizziness is also possible even with bilateral loss of vestibular function(our brain and body are amazing in their ADAPTATION ability!).

Guys - I have just returned from my ENT doctor's visit. He has been watching me for more, than ten years because of dizziness (my husband drove me to the doctor today). I insisted to try a corticosteroid treatment (21 tablets in one week). The doctor was surprised, that I have NEVER had it in the past despite my long-life problem with dizziness, vertigo and headaches. He said, that this treatment can decrease INFLAMMATION in the inner ear structures, but on the other hand -it can cause many SIDE EFFECTS - one of them - vertigo and headaches (oops!). I promised to him, that I will DROP TAKING THESE TABLETS IMMEDIATELY if I see ANY BAD SIDE EFFECTS. Sure - I will (if something goes wrong!!) I am going to start taking steroids (named MethylPREDNISolone) tomorrow. I will let you know about the outcome. I hope I won't pass away (just a stupid joke!)

Megan - you said "i would be happy to sign some dumb waver regarding a brief dose of steroids." Do not be in a hurry - first watch me.

Hugs, Anna


Chris, Re: 50:50 recovery rates.... My understanding is... when the vestibular nerve has been damaged, then the nerve will either repair itself over time (6-12 months) or not at all. I have nerve damage, which is not necessarily a cause of symptoms in other people.

The chances are about 50:50 either way (relayed to me by a balance specialist). The best recommendation is to get out and into some activity. Going to a specialist physio really helped as it allowed me to focus on some key balance exercises, (which I would have clueless about otherwise). Even if the function doesn't come back they can really help in getting the other side to compensate.

Hope the first bit answers your question.

Cheers, Graeme


Graeme,

Questions for you. Your VOR reflex - does it affect HOW you see moving objects? Ie : fast moving objects like cars or children playing? Did you do the VOR exercises and have they helped? Is there anything further they can do to improve your VOR? My visual tracking is off and it is hard to explain to my dr. I too suffer from almost constant foggy brain and fatigue but my balance is relatively ok, except in the dark.

Thanks,

Tracy


Has anyone been doing the VRT for a long period of time, maybe over a year?? If so what does it do for you. Does it make you less dizzier, etc?


i did not know that if a nerve is damaged that it can repair itself in 6 to 12 months. i thought once its damaged its damaged. cool to know.....


I hope someone can help me. On July 8, I lifted our very sick 120lb Bernese Mountain Dog to take her to the vet for the final time. The next day, while standing at the library with my 3 children, I got lightheaded and felt like I was going to pass out. We came home and the lightheadedness continued, along with mild, annoying headaches. I thought it was either an injury from lifting her, or just stress from losing her. This has continued and has not stopped. I don't have sever vertigo or nausea. I have headaches, jaw pain, lightheadedness (I feel like I'm buzzed), my eyes feel like they are swimming, my head feels hot sometimes, ear pain and ear fullness, extreme fatigue, no energy. My MD treated me for sinus, but that didn't help. My ENT did a balance test and sent me to an audiologist, every thing was fine. I have bad days and better days. The headaches and the lightheadedness are the most annoying. Does this sound like LAB? Should I request more tests? I'm really concerned.


got MRi results back,,,,normal....of course NORMAL normal normal..thats all i hear...im not normal.....doc said it could take months to years for my brain to compensate..just have to deal with it....life sucks....


Chad;

I hear you about everything testing normal :-0 Hang in there!! How long have you had labs?? I can relate to the frustration you are feeling. What testing have you had done?


Hi, everybody

Chad – for some reason (because of your history and symptoms!) I was absolutely sure, that your MRI would be NORMAL. Mine always was normal already three times (in 1995, 2004, 2006). It is IMPOSSIBLE to see any damage on nerve sells level either inside labyrinth or in the vestibular nerve. Even the best resolution imaging technologies available now cannot such changes (or “damage”, call it whatever).

From what is known to the science of neuropathology and molecular biology for sure: 1. Nerve sells CAN repair themselves in different parts of the body. The inner ear is not different in this respect. 2. Human brain CAN compensate for the loss of signals in small (sometimes medium) parts of nervous fibers. So, these two main mechanisms help us with recovery.

Another question is – how to speed up the recovery? What to DO and what NOT TO DO?

Christina – it sounds to me exactly as a rupture of your ear inner membrane while lifting the dog. It is called PLF (perilymph fistula). It is very hard to confirm it with the existing tests. Doctors usually do not make such a diagnosis. Be CAREFUL with your head and this tear will close up spontaneously if you REDUCE (RESTRICT) your activities (bending, stretching, lifting etc.). Vestibular or any other exercises are not helpful in such case, on the contrary – they can be really harmful! It is like jumping on a leg that already has a crack in the bone! It is a good article of Dr. T. Hain of North Western University (Chicago) http://www.tchain.com/otoneurology/disorders/unilat/fistula.html

Update on myself – I am currently trying a prescribed corticosteroid treatment (six-day course). No side effects so far. No improvement on day three.

Anna


Hi Tracy, My VOR doesn't seem to be troubled by moving objects, although sometimes when I watch TV I am hyper sensitive to the movement of the camera or maybe it's just my eyes! When I turn my head rapidly from right to left, I can't focus and everything is wobbly for a second. It can be a bit dangerous on a bike when you are looking for traffic over your shoulder and then turning back :)

The VOR exercises (gaze stabilisation and Brandt) helped a lot. I really needed the sessions with a physio to determine which exercises were going to work best and also how to do them properly. Once I had those I was off and running. They get so repetitive, so it's good to have something to listen to while you do them. Take care of your neck as all those head turning repeats.

The dark thing is a biggy for me to. As you lose your balance your proprioception ability is decreased. There are exercises that can help. Stand with eyes closed and hands on chest and stay there for 2 mins. As you get better move one foot in front of the other. Then do it standing on a spongy foam mat. It's a focus thing as well, you can will yourself to do it.

Or walk with heel to toe , eyes closed, (next to a wall for support if necessary).

I'm not sure that anything else can be done to improve my VOR. The exercises have diminishing returns over time - as I noticed and as my neurologist said would happen. Nevertheless, they it's good to keep your hand in!

I'm also trying 28 days straight of Bikram Yoga - will see what happens. Day 1 gone - only another 27 left. Let's see if that makes a difference. It's supposed to have quite dramatic results....

Cheers, Graeme


Hello everyone

Christina....I never had the severe vertigo either,I had an upper respiratory infection and then dizziness but my dizziness was more than being light headed (I am pretty much house bound with the swaying rocking type of dizziness).I also have the jaw discomfort,swimmy eyes,ear pain,ear fullness,extreme fatigue. All I can tell you is that the ENT could not help me either, he thinks it could be my eustaschian tubes along with inner ear problems. I went to a neurotologist who did tests and now has me doing VRT. HE also wanted me to go see a neuromuscular dentist for TMJ. I too thought lifting my 2 year old worsened everything, but who knows. Unfortunately, you may have to go to more doctors until someone can give you some relief.

Chad...focus on the fact that they did not find anything. I know it can be extremely frustrating.Everything that is being eliminated is one step to finding out what can work for you to feel better. I too have the internal shaking that concerned you. My teeth chatter along with my insides shaking. With me the inner ear damage has heightened my nervous system...I am startled easily, have the internal shaking, and anxiety which I never had before. Try anything that calms and relaxes you and I do not mean drugs! Take your vitamins as drinking depletes a lot out of your system....

Elizabeth


I'm new at this, what is VRT and VOR?


As far as I know:

VOR - vestibular-occular reflex, it is usually impaired with vestibular disorders

VRT - vestibular rehabilitation exercises (they can be very-very different). I would avoid any violent or even regular/persistent quick head and body movements. Gaze-stabilization exercises are designed to improve VOR and they can be quite helpful.

I am sure, that other guys know more.

Anna


I felt like I was doing a little better this summer....I thought that I might be getting very slowly better. However now that fall has hit I feel back into the same dark depressing symtoms that plauged me last fall. Last fall for me was absolutely the worst time I have gone through in my life. I feel like this is just not going to go away. I am in my 16 month and I just feel that if my ears were going to heal themselves then it would be done by now. They must be damaged beyond repair. I have no idea how to live life feeling as if my head is on a violent boat at all times. I just can't do it.

To everyone out there, I feel your pain and wish us all a quick recovery and pray every night for relief for all of us.


Hi Anna, This gives a detailed definition of VOR. http://en.wikipedia.org/wiki/Vestibulo-ocular_reflex

The way I understand it is that when you move your head your eyes are out of sync with that movement. In my case, when I turn my head from right to left my eyes are momentarily still looking to the right and then catch up. It's a bit like looking at some wobbly home video footage.

The gaze stabilisation exercises focus on the part of your reflex that doesn't work and slowly stabilises what you see - it really works, but you have to be very diligent with the practice.


Hi everyone

I had a severe attack of Lab 2 1/2 weeks ago after a long haul flight. Great to be hospitalised while on holidays! Just wanted to thank you for this great posting... it makes a difference to know i'm not alone and that there are options to try.

This is the 2nd time i've been diagniosed but the other episode was long time ago and can't quite remember being this bad. and i think it flares up after flying. No more long hauls for this 47 year old for a while now.

For me - I've had great help from my Osteopath (like a Chiropractor)(I'm in Australia) and she recommends accupuncture which i'll try next week. My symptoms are only mild now but i fear they won't dissipate fast enough and that I'll have a repeat. yuk! I've just been trying to rest and though i'm back at work full time i also take it easy when travelling on the bus and stick close to people if i'm walking with them so i have someone to stumble on! :)

Good luck to all. I'll let you know how accupuncture goes and will try some dietary things as well. Being in medical research i'll also keep eyes open for anything related.

Good health,

eMs.


p.s. I also had great success with ear-candling... has anyone nelse tried that? it removes debris from the ear canal and helps with feeling more balanced.

eMs.


im feeling pretty good....but question the last like 2 weeks my neck and back have been so sore....i think cause the vertigo was real bad a few weeks ago....my legs hurt...etc.....i also heard stiff neck is a major sign of labs...??????????


Lauren,

Are you still doing VRT? I know this sounds crazy but I've read of px continuing to do it for awhile, plus periods when thier symptoms act up. I do the head turning ones a lot b/c I too have that rocking sensation in the head. That plus the gaze stabilization ones really help. My balance is excellent however my PT has me doing the balance exercises because she believes the whole vestibular system needs to be challenged in order to work together. These and Yoga have helped aid my recovery. Hang in there as you ARE living with this illness. Is it easy - NO - god, some days are bloody awful. Some days I don't want to go out and face the world but I make myself b/c the fear/anxiety for me can be worse than the actual event. You can do this. You are STRONG!

Tracy :)


Chad,

The same thing has been happening to me. My neck has been killing!!! I was reading about cervicogenic dizziness which it sounds like I may have. Not sure....I really never noticed it until this week. Like aching hurt!!


eMs -

What is ear-candling? What debris and from which canal does it remove? From a semicircular canal of the inner ear?

Anna


Tracy.....thank you for the kind words. I have been doing VRT for about a year. My balance is fine too. What was the px that you mentioned?


Regarding the ear candles.... I don't think they are that great. I don't believe they remove anything from the ear. Try burning one of the candles on its own and you'll see exactly the same debris as a one that has been inserted in the ear. Also, isn't the balance function located in the inner ear which is totally sealed?


hey all... i havent posted for a long while, but i do read regularly...im back at school and teaching every monday as well, but my balance is so off...i'm so fed up of this, everyday is the same story, i feel unbalanced, floating on air at times, and rocky sensations. life definitly sucks and i've had the balance problem for about 6months now. the vertigo is gone so they say as i did the epley manouver and all went well :)no dizzies, its just the balance that has takin over my life, i feel so tired when i come home that i jus want to sit back and relax all night, and so dont look forward to the next day.

anyone have ne sugguesting for balance exercises or anything that would help. i feel im at the end of my ropes :(

farah


re: ear candling. (a Hopi remedy I'm lead to believe) A beeswax candle is placed in the ear and slowly burnt. it creates a seal on the ear and draws out any debris from the outer ear canal. (do not try this at home! it needs 2 people to be safe, someone watching over participant)

I am just trying ANYTHING that might work! I have only tried it once and it cleaned out my ear canal - not the inner ear - but it was very relaxing and made ME feel good!

I have just been reading about Magnesium deficiency in the diet too - one of the symptoms is dizziness. . .

I do not advocate anything for anybody other than myself. I believe in sharing what works for me in the hope that it might work for others. I try to keep an open mind on all forms of treatment. I am just trying to get well, feel storng and motivated.


i ahve been having wobbly vision for almost 19 months now i feel like i consstantly looking into a home video everthing bonces and jerks for the last 19 months from the secound i got this condition i have not been able to see the world be still for even a secound i am not exagerating i have had this 24/7. i dont get the spinning vertigo ever though i have been to every doc have i had 2 mris everything normal please help me i am only 19 years old does it sound like an inner ear disorder is this what your guys symptoms sound like to you also i am always tired


Hi everyone, For sufferers who are wishing they could still have an occassional drink of alcohol well, I find GIN is okay! Wine aggravates as does beer, but not gin & tonic with a slice of lemon!

Also something that helps me a lot: DIGESTIVE ENZYMES. Takes a week or so but there's definately been an improovement for me! Not acidophilys tablets (they didn't seem to do much) but digestive enzymes. Have 1 or 2 with every meal. It's all to do with certain foods not digesting right and causing ta reaction which leads to inflammation and also to B12 not happening enough and I can't remember it all, I just know THE ENZYMES WORK!! Give it a week or so. Aloe vera juice also helped.20mls 2x day. Again it takes a week or so to be effective.

I actually got onto The Missing Week while looking for info on behalf of my elderly mother, who has been suffering from Labrynthitis since a major spin-around-fall-down in her driveway last June. She was a vibrant 79 yr old who liked to walk lots and to sing loud along to her favourite CDs. Not after good ole Lab hit. She turned into an old old woman. HOWEVER she is settling into it. (She's back singing along now) I realised thru reading Missing Week that I have had Lab (milder tho) for years! I was calling it an inner ear problem along with an allergy prob regarding certain foods! Hence the above discoveries (re Gin, the enzymes & aloe vera juice) My next step is to get my Ma onto the enzymes. I'll post them to her (we live in different cities here in New Zealand) as she wouldn't consider buying no natropathic remedies. Fat lot of use her conventional doc has been tho!! (Altho having said that I guess I did sometimes find relief from nasal sprays, after a week or so. But they cause nose bleeds after a while!)

So I reckon diet comes into it. Cut back on dairy products and wheat. Good luck to us all! Jay


Hi Tiffany, Get referred to a neurologist that specialises in balance disorders and they might be able to narrow down the diagnosis.

You may also want to try and get referred to a vestibular/balance physio - they should be able to detect which ear is causing the problem and suggest exercises to help stabilise that wobbly vision. The physio I went to did the same tests as the neurologist. Basic balance tests, some positional stuff, some with blacked out goggles (with an infrared camera inside) to see what the eyes do when you move your head. I was given very specific and targeted exercises which have helped me.

Best of luck! Graeme


tiffany - i'm only 20 yrs old: too young to be feeling all this - its taken over my life and i find it hard to do the simplest things. for example - just walking for me is the hardest thing to do becuase i am constantly imbalanced, feeling rocky, and swaying frm side to side whn i stand in one spot. it reallly sucks..ive been like like this for about 2 yrs now, prayin each day for this to go away. i've tried meds they didnt work, went for mris they were neg. now im seein a homeopath and even that is not working as well as i expected. i truly despise living life somedays, i feel like theres no point if im feeling imbalanced all the time. :(

but i truly understnd how u are feelin and cross fingers we will get over this just dont knw when.

farah


Tiffany - have you ever got ANYTHING, that would point out, that your EARS (or one ear) are involved? During those 19 months have you EVER got one or several of the following symptoms:

Ear "fullness" (like your ears or one ear) are stuffed, or muffled

Ringing, or any other (even quiet sounds)in the ears or in the head

Pressure in the ears

Pain (even very mild) in the ears or in front, or behind the ears

Your hearing has become worse, or it strangely fluctuates

Loud sounds bother you making your vision problems worse

I am asking, because I am trying to figure out if your 19-months long 24/7 disaster could be related to an inner ear disorder. Tiffany - Be aware, that here on this site all people UNDERSTAND your feelings and all here KNOW, that you are NOT exagerating even a tiny bit! Moreover, many of us are going through the same, or very similar "private little hell". We all are trying to support each other as much as possible.

Hugs,

Anna


i have been suffering with constant 24/7 wobbly and bouncy vision for 19 months i have been to doctors had many tets done including mri this is really with me every secound of my life doctors yet to tell me what is actually wrong with me which puts my anxiety level sky high always thinking i have some terrible disease dying etc. i got this condition when i was only 17 instently one secound litterally i was fine and then boom the next secound chaged my life, i havent been able to see the world stable since then i never get the sppinning vertigo that everyone one else gets it is always like the background of a home video i never hear anyone describe their symptoms like me or if they do it is never constant 24/7 like min can someone please help me i am only 19 yrs old and want to be able to forfill my lifetime goals this has truley ruined my life!!


OUR EATING HABITS ARE WRONG (!!!)

Tiffany - you have not answered my questions (see above). But no matter from what part of nervous system those wrong (disturbed)signals come to your brain - I have a feeling, that your life-altering problem are connected somehow to wrong METABOLISM in your body. I agree with Jay -you have to think about WHAT YOU EAT!!!! On this webpage it was a girl about your age with very similar 2-3 years of constant 24/7 disturbed vision ("poorly shot home video"). This girl admitted, that she likes cakes, chocolates, candies, sweet drinks like pepsy and cola etc. Bad-bad habits from early childhood - it can be a GREAT problem (in your case as well). Recently I have read a lot also about DAIRY products - there are many scientifically proved facts, that we DO NOT NEED dairy products after the growth of our bodies are over (!!!). Tiffany - your problem started at 17 when your whole growth just had ended. But I supposed> that you continued to consume the same amount of dairy products, a lot of sweets, white bread, etc. You can change your metabolism only if you COMPLETEY change your eating habits.

There was a very smart guy on this website - his name is Tom who recommended a good book discussing all these wrong eating habits in well-developed countries. The name of the book is EAT TO LIVE. It is written by Joel Furhman, M.D. He referrs on many scientific studies, that provide a lot of data pointing on bad eating habits as DIRECT cause of many-many diseases even at young age (including neurological!).

Guys, we do not have much to lose. We can become healthier, stronger and we can live longer and with higher QUALITY OF LIFE. Somehow I am sure, that we can get rid of this poorly understood horrible symptoms: dizziness/ visual problems/balance problems/hearing disturbances etc.

Tom - how are you doing after you started to practice GOOD eating habits? Inform us in any case.

Little by little I started to persistantly battle my family's addiction to milk, sour cream, white bread, sweets, caffeine, salt. I stopped consuming all these things except salt(it is hard to cut on salty food for me personally - I love it). Lots of vegetables, fruits, nuts and beans instead. I am looking for something to substitude salt. I am trying to cut the consumption of red meat. I understand, that it is NOT a one-day change, not even a one-month change. But it's WORTH TRYING!

Hugs,

Anna (54 years old, dizzy since 19 on/off)


Hi everyone,

I'm so sorry to hear about the symptoms you all have been dealing with for so long! I too suffer from intermittent dizziness. I had labs twice in my life (about three years apart). The first time I caught it from my sister and it wasn't horrible. The second time was a bit worse and I suffered for two weeks with vertigo. I've always felt intermittent light headedness (even before the first attack of labs). I think it is at least partly psychological. I was walking in the city one day and I passed out because it was 100 degrees out, I hadn't eaten or drank anything all day, it was 2 in the afternoon, I was wearing all black and I had my period (sorry guys, I know how much you love it when women mention this!). Since that time, I've been nervous in certain situations like being in a crowd, a mall, waiting on line or simply in a place where I don't feel safe. However, I don't think it's completely psychological though since I do feel faint sometimes (kind of like I'm going to pass out but I don't). I also feel wobbly or like I am walking on jello or marshmallows except there is nothing sweet about this feeling. I was recently given a battery of blood tests and everything looked okay except I had a slight hormone imbalance (treated with birth control pills, believe it or not). The doc told me that the imbalance was hereditary and very common. My thyroid function is perfect. I did notice that this "light headedness" seems to be more prevalent before I get my period. Do you think the two can be related? Seems strange to me. I have had my glucose levels tested and all is good so diabetes is not a possibility. I've never had an MRI but I've been to several doctors and all of them say that I do not need it. Since these symptoms have been going on for at least 8 years, I think if it were a serious neurological issue, I would certainly have more serious progression of symptoms. The symptoms have remained pretty consistent throughout the years although the light headedness gets a little worse now. My hearing is fine but I have what I refer to as sensitive ears. I had lots of ear infections as a child and had to get my adenoids removed along with tubes put into my ears. I don't have any fullness in the ears but I have had a few ear infections as an adult (not nearly as many as I had when I was a kid). I have a lot of wax build up (gross!) which I take care of on a pretty regular basis by going to the doctor.

I don't drink that often (maybe a glass or wine or a bottle of beer every few weeks) but I do smoke (I know it's a bad habit and I know I have to quit!). I think smoking, lack of exercise (I'm not overweight but I don't do as much exercise as I should) and not eating right is probably contributing to this condition. I tend to go all day with very little food because I'm so busy and there is nothing around me to eat. I'll eat a piece of fruit and drink coffee and water until I get home for dinner which is around 7 PM. I do notice though that even when I eat well, I still have the dizzy/light feeling. It's quite frustrating because I'll be in a meeting and get light headed and can't concentrate. The worst part is that right now I'm feeling okay and the next day I could feel horrible.

Any suggestions on what this could be? I just recently woke up with a flashing light in my right eye as well. Went to the eye doc and she said it was an ocular migraine and she didn't see any problems with my eyes dilated. I don't have a headache though. It's a fluttering light that's in a circular shape and it comes to me in the morning and fades out during the day with no symptoms at night. A friend of mine mentioned MS but my father has MS (not a bad case of it as he is fully functional and has very few issues even in his sixth decade of life). My father says I do not have symptoms of MS and not to worry. No rapid or involuntary eye movement, no unexplained tingling in arms or legs (except for the sight case of carpal tunnel syndrome - I guess that's from typing!) and no numbness or problems walking or picking up things.

This Friday I'm flying to Europe and I'm nervous that I will faint or not feel well. Arghhh!! This is supposed to be a great time but how can I enjoy it if I'm light headed all the time? The thought of the flight alone scares the beejezzus out me! What if the pressure changes alone instigate another episode of vertigo? Should I be worried about this since I seem to be prone to inner ear issues?

Sorry to go on a rant. If anyone feels like reading my novella and giving some advice, it would be much appreciated. I realize that many of you have much more severe symptoms so I'm not trying to play the "poor me" roll but it is still frustrating as I'm sure all of you are aware.


hi i have noticed that my ears click a lot mostly in one ear i have been to a neurologist to i dont eat sweets and i havent drank a glass of milk since i was five i dont like the taste of dairy products i eat a lot of healthy food but even too much healthy food can gain make you gain weight that is my problem i eat more well actually i eat just as much as i did before i got this condition i just dont exersese any more i am one of those people that would rather eat a nice salad than a piece of cake any day also i have noticed that my ears sometimes get a plugged feeling. i dont know what i have since every doc that i have been to tells me that i am a healthy 19 year old and yet i still live with these symptoms every day 24/7 and when i tell the doctors that it is constant they think that it only seems to last intermently saying that u cant have anything like that be constant since all of your tests come back 100% normal


I have read with great interest, many of the posts and thnk you all for your help and suggestions. I would like to ask a serious question, which though it sounds 'cranky' is genine concern: During love making, since having L'itis, I have experienced horrendous dizziness, sickness, and temperature escalation.

This is a worry, and without requeting great personal detail, has anyone experienced the same?

Thanks


Nick – Just my thoughts about the brave question that you have raised. Making love is a very STRE NUOUS physical and emotional activity. It increases your heart rate, blood pressure, intracranial pressure etc. Actually ALL fluids in the body increase their flow. If science were more powerful we would, probably learn, that chemical composition of many fluids in the body are changed during the intercourse. Fluids in the inner ear – endolymph and perilymph should be affected as well – why not?! These fluids affect the sensitive neurotransmitters in our inner ears. In the already “damaged” inner ear this effect can lead to the worsening of the symptoms. I experience very similar things, although I am a female. Also I found out, that certain positions (supine, or turning on the side of the effected ear) make things worse. What I am absolutely sure: you should tell you partner HONESTLY and DIRECTLY how you FEEL. DO NOT PRETEND (!!!) If your partner LOVES you he, or she will do everything possible to make you more comfortable. Definitely - nothing horrible will happen if you restrict intensity and frequency of your sex life in a view of better future. Aria – I read your novella very attentively. It’s a big part of anxiety and worries that can be seen in your own description. Now your worry is this coming trip to Europe. Strangely, but many people with balance disorders fly quite often and they admit, that airplane flights DO NOT make there dizziness worse. It was a lady on this page Beata. She is a flight attendant (!). She said, that being on the plane in flight – she feels completely NORMAL. Being on the solid ground was a problem! Isn’t it strange? By the way – Beata had had dizziness and imbalance for about three years but she GOT RID of it by WATCHING WHAT SHE EATS! No caffeine, no sugar, no white flour, a lot of FRESHLY made juices, she quit smoking, regular food intake in small amounts, but more frequently. She is a very powerful and persistent lady, I believe. Aria – when you go on board, take a Dramamine pill ½ hour before the takeoff and the landing (it will lower your worries and it will make your vestibular system less sensitive to motion). Drink a LOT of liquids during the flight (juices, water, decaf. tea, or decaf. coffee). Conditioned air in the cabin during flight is EXTREMELY dry – it is not good for inner ears – that is why you have to increase liquid intake significantly (!). Do not sit still during the flight, walk in the isle, go to the bathroom, stretch you legs, arms and body (not violently, just gently). It all will allow your inner ear fluids to remain there usual pressure and chemical composition as on the ground. Try to take a nap (if you can) during the flight. Eat REGULARLY (small amounts of food more frequently). Aria – you do quite opposite in you everyday life, don’t you?

Tiffany – my heart goes to you – you are so young to be sick. Somehow, I still think, that some significant LIFE CHANGES (not just diet changes) could help you. Maybe, you should restrict (or completely eliminate!) animal protein (meat, fish and chicken) from your life. There was a wide study (so called China study) made by Cornell University professors together with Chinese scientists. It led to a very conclusive and dramatic result: people who eat less animal proteins live longer and healthier lives (!). Strict vegetarians have practically no cancers, heart diseases and diabetis. Vegetarians live longer also because they are MORE resistant to different viruses (!). There are MANY other studies leading to the same striking results. Those scientists are treated like heretics and they are NOT supported by powerful MEAT AND MILK industry.

Doctors who treat neurological illnesses (especially such a horror as DIZZINESS) are so useless, so helpless! I know these doctors all over the world through the Internet. I have responses to my letters from some of them – leading “specialists” in dizziness. Sometimes I can see that deep inside HONEST doctors feel GUILTY, that they cannot do anything to diminish my sufferings. Some time ago - actually since I have become totally disabled by dizziness and out of work - I finally came to a conclusion that I should try to do SOMETHING for myself. If scientific facts show DIRECTLY, that a human subject CAN improve the quality of his or her life by eating healthier food – I WILL TRY TO DO THIS!

I wish you all good luck. Keep going.

You are in my thoughts, Anna


This is to add up to my previous post:

Look up at this website of Dr. Furhman.

http://www.diseaseproof.com/archives/cat-blog-mission.html

I am going to read this site VERY attentively. This doctor's book "EAT TO LIVE" has hundreds (!!!) of references to different clinical and nutritional studies. He discusses WHAT TO DO in order to AVOID health problems in the first place. If there is NO satisfying treatment and even truthful explanation for underlying real cause of our VERTIGO AND DIZZINESS - why should we not try to prevent it in the first place?!!!

After looking at Dr. Furhman's ideas and his discussions (his views are fully supported by scientific facts)I found myself so much convinced! (To tell you the truth - I am a great sceptic).

Anna


thats who i go to Dr. Furhman...he is in pittsburgh, pa...i have appointment in november


Has anyone tried cranio sacral therapy for their dizziness?? I was referred by a friend but it seems very expensive on top of all the money I have spent on doctor's appointments.


these sound like good suggestions re diet.

I am feeling GREAT this week in general - key reason i think is because my doctor suggested i try ZERO salt intake for a few weeks. I'ts made a HUGE difference to my wobblies - almost non-existent after the first 24 hours. It's quite difficult but i was determined to find something that worked for me. There is so much added salt and sodium in all packaged and prepared foods, so i've been cooking at home MUCH more.

It seems too simple remedy-wise but having suffered with vertigo and nausea since March I can honestly say this is the BEST i've felt all year.

I'll let you know how it goes later next week.


Anna, thank you for the advice I will try to follow it and as you suspect, I do the opposite especially when I work long hours (who has the time to eat, right?!). I will add that I am a vegetarian. I have found that if I eat more balanced meals, I feel much better. Giving up meat was probably the best thing I could have done since it was making me gain weight and feel sluggish. I also do not believe in factory farming since I think it is cruel and a horrible fate for the animals that sacrifice their lives to sustain our own. If you really want to swear off meat, you might consider reading Animal Liberation by Peter Singer, Fast Food Nation by Eric Schlosser, The Food Revolution: How Your Diet Can Help Save Your Life and Our World by John Robbins or Harvest for Hope: A Guide to Mindful Eating by Jane Goodall. All of these books explain the tragic human, animal, environmental and ethical issues associated with factory farming animals for food. Of course, that's just a suggestion, I wouldn't push my views on any one else.

Unfortunately for me, diet is not the only thing I have to fix. I have to make sure I eat right and consistently, exercise more, quit smoking, and fix my sleep patterns. I'm a night owl and I tend to stay up very late. It's difficult for me to get to sleep and I don't want to start taking sleep aids. I used to be fine with it in my 20's but now that I'm in my 30's I'm starting to feel the affects of my night owl ways ;)

I wish you all the best and hope you all feel better soon!


Emms -

Could you tell me a little more about this whole thing on avoiding salt in the diet. How do u know/keep track of what to avoid? I'm 21 and junk food is of course a part of my life - but if it will mean sacrificing it in order to not be wobbily i would do anything. I find that i am constantly wobbly especially after coming home from a tiring day at school - its so hard to function!

Any tips would greatly help! I've been suffering far tooo long, if you've seen improvement maybe i can too :)

Keeping fingers crossed! farah


Emms - how nice to hear, that you are feeling much better by SIMPLY making ZERO SALT in your diet! How can you do this in your real busy life? Just purchase products with only 0% sodium on the label? And you do not eat out? Everybody absolutely MUST see you message. It is again a strong support of Dr. Joel Fuhrman's views presented on his vebpage and in his book "Eat to live". I am going to QUIT with my bad addiction on salt and salty foods.

Aria - I am very pleased to hear, that you are a vegetarian. I am still not (but I am really ready for it).By the way, Dr. Furman discusses, that eating tofu and soy burgers is not the best way to go in vegan diet - RAW fruits and vegetables, cooked beens (variety of them exists!), nuts (also a great variety of them exists!), some whole grains - that is much better way to go. These products have more NUTRIENTS per calorie density, hence - they are much better, than highly processed tofu burgers, or just tofu.

Guys - I do not want to press you with my views (actually, those are Dr. Furman's views) any more. Everybody has to decide for himself, or herself. We are personally and alone responsible for our lives.

Hugs, Anna


Jay (from New Zealand) - I have a question to you: What are DIGESTIVE ENZYMES? Where can I get them in the US? Drug store, Internet, both?

Anna


Anna, Digestive Enzymes help those of us who - often without realising - are not digesting our food properly and subsequently are not getting the benefits plus eventually begin to experience negative repercussions of all sorts, including labrynthitis, it seems.

The ones I have contain Protese, amylase, lipase and lactase. Each of these assist digestion. ie lactase will help with dairy products.

You should be able to get them from a drug store (we call it a chemist shop, here in NZ!) Also on the net. Also in health shops. (I don't know what you call those in the US.)

Have one with each meal. I hope in a week or 2 of taking them you notice an improovement. Eat up your veges too!! Good luck Jay


I am OUT OF MY paikillers(barbiturates, Typenol, propranolol, . It is a great success after being for about three years on them). MY head aches and sound sensitivity is almost GONE. My woobly feeling in the head DIMINISHED subsequenty. This is my 7th day on Dr. Furhman HEAD ACHES RELEIF DIET (wich includes ZERO SALT consumption)

I cannot beleive it!!! I am in tears with happiness....

If I have to stay on this food for the rest of my days - I WILL.

Yours, Anna(Long time dizziness sufferer)


Wow! Anna - what WONDERFUL news. great to hear of such success. Keep us posted on how you're going?

Hi again to everyone - and thanks for your comments. I'm still feeling great too. It IS difficult to cut out salt completely. And yes my life is VERY busy. But I am determined not to let dizziness take over my life. I’m too young (47) to be old! My advice would be to try it for a few days to test if it will have some effect for you. it was a dramatic change for me. Almost overnight I lost my dizziness and now after a full week off salt i feel better than i have done for 6 months. I’m slowly adding foods in like bread (i love bread!)

The first day I cut out everything artificial including fats foods, breads, biscuits, etc. If you look on the packaging of any foods and see Sodium content you'll be amazed just how many foods contain salt; even sweet things and cereals, yoghurt, butter. My doctor gave me a list of salt content of popular foods. So I ate simple meals like boiled rice and steamed vegetables, steak and vegetables and a pierce of fish pan fried with salad. All delicious and easy. Lunch I just bought a take away salad form the sandwich shop – but chose all fresh ingredients with no dressing. I used a little olive oil for frying. I put a potato in the microwave as a snack. I’m sure once you start and see how good you’ll hopefully feel that you might come up with more options. I didn’t want to feel deprived but I was also determined to test the theory. I think if you look at it in this light and hope for the best, keep an open mind, is better than succumbing to an illness that MIGHT be treatable through diet.

The RDI of salt is 4grams I think. So keeping under that is obviously advisable. A list of salt content in various foods can be found easily on the web. http://www.midwestear.com/sodium.htm is just one site.

Farah – I hope you can give it a try even just a few days. I read the site suggested by Anna too and found it inspiring regarding dietary changes. Good luck.


Emms - thank you for the info...i am soo willing to give this a try, Anna its great to see that you have seen improvement :)

I searched the net for foods that are free of sodium but it looks like almost everything has salt unless cooked from scratch.

Emms - wat do you eat in a typical day? can u please share?

im going to start this new diet today, after reading your post...i'm really praying something works cuz this wobbliness really bites :(

take care all farah


Hello, everyone after reading everones post my symptoms dont seem nearly as horrible. I was only diagnosed with BPV a year agoe, however I have had symptoms for almost a year the trend seems to be they get better slowly over the last. Some of my symptoms match the Lab stories but mostly do not. I am very excited to hear Annas story seems to end with happy news. My symptoms are initially were fullness in the ear, dizziness, for shorter periods of time.(classic BPB), fogginess, hot, cold when I had the dizziness at the time, and the worst is the everlasting motion sickness. I never got the the dizziness for 24/7 just the motion sickness, Right now I am 99% better. However since I am a working pilot (just general aviation not airlines) the 1% is quite annoying. Being desperate I happened to drop eating chocoalate and drinking soda.(I dont drink, or smoke never have)And I am hoping that the symptoms will continue to improve to 100%. I improved literally overnight. I certainly empahsize with everyones posts. My symptoms seemed to origninate from allergies my guess is specifically a plant pyrocantha blooms fall to winter which is when this started. We took them out of the yard by concidence and I happened to start to improve when they were gone. I was hoping to get any other suggestions from anyone, you all seem very well self educated on the subject. Hope things get better for everyone. Thankyou ahead of time for any advice. Rhonda Another weird concidence we have an older golden retriever who had the symptoms of BPV for a week in the spring fortantly he had a complete recovery.


Hello again I forgot to mention a couple of sypmtoms that were also mentioned in the posts. I also had the stiff and very soar neck. The tingling sensasion (My doctor said this was normal)also sometimes prevails in tension migraines in my head before I got the dizziness and yes ears can be thought of as a sensitive barametor. Hope this helps. Thanks again Rhonda


Anna - what diet are you eating? Could you share some info on this diet - i went on dr.fuhrman's site but can't find exactly where this info was located - looks like the only way to read about this diet is through buying the book. do you have any other suggestions? or offer me advice on the types of food you are eating?

i'm feeling so frustrated and the cold weather just makes me even more depressed.

also, anna or anyone else do you or did you ever feel as though your feet are sinking into the ground or that you cannot stand for too long yet alone walk too far because you have a need to sit down or else you will fall? this is how i feel 24/7 it really sucks :(, i also feel the back of the legs are hurting alot lately. any info/thoughts would be helpful.

thanks a bunch hope you're feeling well :)

farah


Hi everyone.

Have occasionally had a read on this forum but tried not to read too much for personal anxiety reasons as I'm sure some are aware :-)

I was 'supposedly' diagnosed with labs 4 months ago and haven't got back to work yet. Although the 1st 2-3 weeks involved alot of spinning & dizziness I was never bed-bound, and managed to get on with my normal life as best as possible, though have always had a rather 'spaced out' feeling day to day and turning my head quickly from right to left takes me a while to focus on moving objects etc..

The ground when I look down as I walk can often look a little like a tread mill of conveyer belt moving under my feet, so find looking dead ahead when walking is best.

My latest symptom which is more of a concern now is I have developed tinnitus in my right ear. I low pitched humming, which seems to come & go, but as I right this has been constant since late last night and still going??

Has anyone had this symptom at all? I get the 'fullness' in my ears quite often (usually always my right ear) but this tinnitus is really annoying. I would probably feel a little more comfortable knowing mine is not an isolated case that no one has experienced?

Thanks & stay strong everyone! Ru


hi tom hi anna i just wanted to say hello, anna so glad to hear you are feeling better. Tom nery happy you are good. I was very sorry to hear about francis. However i truley believe even with lesions on the brain you can turn things around. i had eye movement and all signs of ms its all gone. I believe that with agressive diet and exercise you can make it all go away francis don't believe everything you hear. you are so deseperate to get an answer you will believe what doctors tell you just know that your body will not fail you, you will be fine. Tom im doing great flying more than ever 100 hours a month. My diet is very strict.no sugar , no white flour no junk fruits nuts fish salads and yes my grapefruit. i even have a 2ounce shot of wheat grass after my 7 mile run. I feel better than i ever had. Most important i stopped going to docs i know what my body needs . ill share a grate recepie for breakfast with you.

Quinoa- couscous cereal 1.5 cups unsweetened apple juice 1 cup water .5 cup quinoa 2 tablespoons drie cranberries 2tablespoons dried cranberries 2 tablespoons dried bluberries 2 tablespoons chopped dried apricots 2 tablespoons of raisins .5 teaspoons ground cinnamon .5 teaspoons ground allspice .5 cup couscous 1/4 cup of soy milk, rice milk, or nonfat milk 1. in a medium saucepan combine the apple juice and water. Bring to a simmer over medium heat.

2. Rinse and drain the quinoa in a fine mesh strainer. Heat a meadium sate pan over medium heat, add the quinoa and toase, stirring constantly, until grains begin popping, 5 minutes.

3. Add the quinoa, dried fruits and spices to the liquid in the saucepan. Simmer, stirring occasionally, until the quinoa is clear and soft, 15 minutes. sitr in the couscous. Remove pot from heat and cover with a lid. Let stand until the couscous has absorbed the liquid and is fluffy about 7 minutes.

4. Stir ain the milk and serve

Great stuff, great for you

Anna im glad the no salt is working for you one word of caution I did it my ent told me to do it it worked for a while be careful because your body DOES NEED SALT i urge you to do more research. Lots of love

Beata


Hello folks, it has been awhile since my last post. i want to thank all of you for sharing your concerns, your remedies, your hopes and fears regarding this dizzy/labs/bppv but most of all your perseverence with this horrible disorder. i would just like to share my recent endeavor. well i got tired of not getting answers and i got a neurotologist's name off of the vestibular disorders website. he is in houston and he agreed to see me after his nurse relayed my story. Just fyi, I became dizzy with vertigo overnight on 6/6/06. basically medical conditions were ruled out by this neurotologist as sadly all of us know, there is no quick test for labs or vestibular neuronitis. He did not think i had meniere's or ms (i brought all of my scans and he read them all). he basically said we may not ever know why or what caused this vestibular disorder but that i was going to have to move into the positions that evoked that horrid feeling of dizziness in order to get better. so he recommended vrt which i started yesterday. for all of you who are going to vrt or are considering it, please go to a physical therapist or occupational therapist that specializes in vestibular disorders. do not just go to any pt or ot. i am an occupational therapist but i don't specialize in vestibular disorders so some of the exercises i had started to do after the doc in houston told me to start moving were actually making my symptoms worse-very worse. over aggressive vestibular exercise provoked this unrelenting, punched in the gut anxiety that i had trouble eating for days. i had to force feed myself. the vrt physical therapist told me that when i do exercises that i am not to go higher than a 2 or 3 on a scale of 0 to 10 whcn it comes to evoking dizziness. it's kind of like the pain scale that docs use when asking you how bad do you hurt on a scale of 0 to 10. so in other words, do not over do it or you will feel worse and worse. and you know what, she was right. she said this is a long process and i have to be patient. like all of you, i want to be better now, but i will wait it out and do it right. i hope that bit of information helps some of you even if right now you are not doing vrt. also i definitely know what that full, funky feeling in my throat is that no doc could explain. i know that anna reassured us that it was part of the inner ear disorder and she was right. the more i stimulate or overwork my vestibular system, the worse the neck/throat fullness gets. and btw anna, i am so glad you are finally getting some relief. there are so many chemicals in what we eat nowadays that i think we actually poison our bodies without knowing it. i plan to get that eat to live book. also ru, you asked about the tinnitis and full feeling in the ears. oh yeah, i have it bad today. my left is worse than the right. the weather changed as well so i am beginning to believe i can predict weather. anybody else feel that way? one last thing. some of my initial symptoms were a tingly, sleepy feeling in my right face and right arm. i was started on an antibiotic (levaquin) about a week after my onset of symptoms. well i guess it could have been related to the inner ear disorder but i was dumb and did not read the package insert about levaquin. apparently it can cause numbness and tingling that may or may not be relieved when the medication is stopped. my tingling did not start until after i started that antibiotic. so although the tingling is better after all this time, it is still there. my message is that i was dumb not to read the insert. i was just happy to have antibiotics because i just knew they were going to make this horrible thing go away. i did research this drug further on the net and many people have had bad experiences with it. so i don't know if it caused this but i know i will never take it again and i will be so much smarter next time. get better folks.


quick p.s. for Beata - the doctor only recommneded NO ADDED salt diet for a few weeks to give the inner ear's natural fluids time to readjust to its own chemistry (as I understand it)Of course we need SOME salt in our diet - the body needs some salt - just not as much as is added to our current foods. Look at some food packaging and add up what you eat daily - i'm sure you'll find it far exceeds the RDI of 4grams.

Farah - gave some quick food ides in post prior to yours. Today for lunch I'm eating plain pasta with spinach and a little unsalted butter.

Good Luck everyone.


So glad i found this site, i am not alone. Just very scared. Have tried to post before so fingers crossed n good luck to all.


Hello Meagan, I just wanted to let you know the even though the exercises are miserable in the begining they do evenuatlly work and you are absoulutely correct when reccomending a specialist in dizziness versus one who is not that made all the difference in the world. Hope things get better for you sooner then later, Rhonda


Hi, everyone

Farah, Megan and everyone - you will NEVER regret if you buy EAT TO LIVE by Dr. Fuhrman. This can literally SAVE YOUR LIFE and your FUTURE QUALITY OF LIFE. Your are already DIZZY which is very sad (I know it firsthand), but you can turn the disease around (I strongly believe in this now!). And (extremely important!) you CAN also PREVENT other life threatening, or disabling health problems (like heart disease, cancer, diabetes, autoimmune disease, ostheoporosis and many others). It is everything in the book - from description of different macronutrients and micronutrients, how they work (at a very easy to understand level) to "healthy shopping list" and very easy to follow menu and recipes. Dr. Furhman explains a lot of MYTHS that surround different food products or parts of them (including MEAT, DAIRY, SALT, SUGAR, FAT, etc.). We, consumers, are HORRIBLY MISLED by producers, commercials and our own IGNORANCE. I am sorry to admit to myself, that I have been too a SLAVE OF MY OWN IGNORENCE.

Guys, WE ARE TOO YOUNG TO BE SICK. My age is 54, but I consider myself as being still too young to be THAT sick!

Frances – you are upset with the findings on your MRI. But somehow I am convinced that our bodies are perfect SELF-HEALING MACHINES and they CAN REPAIR themselves. We have to HELP our bodies in this repair themselves. By the way Dr. Furhman has a good success in treatment MS, autoimmune disease and other complicated diseases. Sometimes he admits, that his nutrition advice goes in addition to medications

Beata - thanks for sharing your great recipe. I forgot about couscous - it is a wonderful grain. Beata - I am glad, that you raised the question on SALT. Yes, our body DOES NEED SOME salt (NaCl). But HOW MUCH and where WE CAN GET IT? Look please on the following site by Dr. Fuhrman about SALT:

http://www.drfuhrman.com/faq/question.aspx?sid=16&qindex=1

I just LOVE his both scientific, with a lot of facts and simple enough way to present information. It looks very convincing to me.

Our INNER EAR DISORDER is attributed to a “virus”, “infection”, “stress”. Who saw any viruses in our head or in the inner ears??? Most of us have NORMAL blood tests, MRI etc. What is the REAL CAUSE of our dizziness???? I am constantly looking for answers, or for a hint, or for a clue for a REAL CAUSE. I have not found one answer, but I Do have some hints, and some ideas, at least for my own case. Everybody’s case is DIFFERENT, but in many cases (as you describe you problem with IT) and in my own case – I DO SEE a strong connection with WHAT WE CONSUME BY MOUTH 3-5-7 times per day (including food, drinks and medication). I am going to think about that more and more….

As for different SYMPTOMS of our disease - they can be so STRANGE and often TERRIFYING, that not only others, but WE OURSELVES are confused if they are REAL. We ALL think that we are going crazy!!!!

I am doing BETTER on “0% salt” diet. In reality – it is not zero. It is better to say “NO SALT ADDED”. I am consuming the RIGHT AMOUNT OF SALT from NATURAL SOURSES – plant foods (vegetables, legumes, whole grains). See above….

Hugs to all,

Anna (54 years old, 34 years with IT – relapses/remissions)


Hi everyone, YES...i am another lab sufferer going on to my 8th month now...I work in retail, where there is alot of noise and head turning to be done...When i first got this monster thing i had vertigo,dizziness, tinnitus, wobbly eyes etc just like every1 else....but i never gave up on work it doesnt matter how bad i got...Gave up on my specialists cause they dont have a clue wats going on (come back in 3 months and see me again) they say..lol

So i decided to be my own Doctor...in the 6 months that i had labs i was always the same never any improvement...until....our shop had to be renevated and i had 6 weeks off...all i did was sit at home and do absolutely nothing for 6 weeks,very boring but i just wanted to see how i will feel...in the 3rd week of my holidays i lost my dizziness(hooray!) and then my tinnitus just faded away completely (hooray!) i was feeling 99%...i could not beleive it...i actually went out 1 weekend to a bar and had no problems apart from a little anxiety which is normal after all those months...After 7 months of torture i was getting better and i was so happy....until...i went back to work.. couple weeks into my fast paced environment which the dizziness slowly creeped in and than the tinnutes came back once again...so in conclusion for my case it was rest that was needed cause everytime i do something tiring with alot of noise aruond me my labs seems to get worse...

ps...does any1 else wake up in the middle of the night with a super dizziness and cannot go back to sleep because of this for an hour or so?

Hang in there guys and dont ever forget this is not life threatning so just let it take its corse...otherwise you will give into anxiety which makes everything harder to deal with...Keep Smiling MAC


Hi all,

Thanks Megan for mentioning your tinnitus symptoms in reply to my question. That does help somewhat as i thought Tinnitus & Labs didn't really go together.

Ive only ever had 1 bout of actual 'vertigo' in the real sense of the word (true rotary spinning) and that was when I 1st came down with this 4 months ago, which lasted about a week tops. Since then however I have always had a spaced out dizzy feeling especially walking and exerting myself, which does leave me unsteady most of the time and a little anxious to say the least.

Four and a half months in, I have the odd couple days here & there when I feel 90% good, sometime 95%, but then the ground starts to look funny again and patterns on carpets, paving slabs etc.. are all a bit 'trippy'! However, I did think I was on the mend until over the last few weeks I have been getting Tinnitus on & off, but currently more 'on' than off! Also with some fullness in my ear, but no real hearing loss.

I was concerned that Meniere's may be the culprit, but dont think I'm as unwell as that as Meniere's is usually characterised by 'attacks' of rotary Vertigo and quite severe I'm told? ... and with noticeable hearing loss. I dont really have that.

Megan, or anyone else, have you had the Tinnitus come on later on in your stages of Labs as opposed to starting at the beginning with the other symptoms? I'm wondering if this is all connected or whether I have this as a different problem all together as have in the past subjected my self to loud noises.

It's a comfort to be able to write on here so hope everyone is coping alright. As has been said before, it's not life threatening, just needs some adapting to.

Staying positive is the best thing anyone can do.

Big love to you all.

Ru


Hello Mac and Ru Mac Yes I had dizziness so bad in the evening that I began dreading going to sleep at night. I talked to a friend of mine and he said the same thing. Ru I had Tinnitus it came mid way through the onset of my intial problem and it was a signal for me that I was not going to feel well for a while. I am convinced for my self my dizziness was initated by alerigies more specifically pyrocantha and aggravated by sugar. I completely stopped eating chocalate more specifically sees candies ( a huge accomplishement for me) and soda. I have not had any dizziness and the motion sickness seems to be dissipating as well. However I also had the expanded tubelar feeling like Lauren described and I think that comes from small tubes and dramatic pressure changes. 30.10 dropping to 29.88 overnight. Hope this helps I wish I would have discoverd this sight earlier on I think it would have saved me some grief. Thank you again Rhonda,


Hate to sound negative but i have had a feeling of imbalance for 10 years. Actually diagnosed with m.e. Funny thing was i was hospitalised with a severe headache,vomiting and vertigo prior to my diagnisis. Chances are it was labyrinthitus. Received no further help 4 this until recently where i had attacks of full spinning when trying to get up. On bitahistne now and waiting a referral. Also checking thyroid. Apart from occasional attacks of spinning the worst bit is the constant fidgeting as i try to find my balance . i think it is called disequillibrium. This has realy afected my life badly.Been diagnosed recently with bppv but i never feel completly free of peculiar sensations


I have been carefully reading about ALL the cases that has been provided on this site since Rich Baker started it. Rich's case (see page 1) -was a real short-term virus infection, severe in the beginning, and rather fast full recovery.

But what is going on in the world??? It is a great EPIDEMICS of DIZZINESS in the "civilized" world. I am in doubt, that it has been the case in 18-19th centuries. Nowadays - young , or even very young people are effected by this MONSTER. I strongly beleive - it has something to do with CIVILIZATION! Recently, in one article I have read, that currently "there are 2 millions (!!!) of people having Meniere's disease in the USA alone". I am not sure about the accuracy of such information - it sounds terryfying. But I know, that DIZZINESS is the second leading cause of work leaves in the USA. Only "low back pain" is ahead.

I am continuing with my ZERO SALT ADDED diet.

It is very windy today, and my SOUND SENSITIVITY is worse (it usually happends during such days). During perfectly silent days, though, my "wobbly feeling" in the head is REMARKADELY BETTER!!!! I am steadier - I feel it. Zero salt diet works for me!!!

NOISES ARE POISONOUS for our balance system. Guys - avoid noises as much as possible. MAC's story (see above) is very prooving of this point. There was another story on this webpage - Annie ("fallen starlet") a dancer from London's music hall show. She was very DIZZY on-stage. She had to leave her highly desired job because noises started making her sick! She was much better, staing out of horryfyingly LOUD MUSIC.

Where is the CAUSE of this EPIDEMICS? Is it one cause, or are there many causes? Why are people (sometimes young, or just "too young to be sick") SO SICK????

I am thinking, and thinking, and thinking.

Anna


Hello all, Just wanted to reply to the replies. Ru, I did have some tinnitis in the beginning but it was not as bad as it is now. I use a white noise alarm clock that plays a sound similar to a huge waterfall when I sleep. That's when the tinnitis is most profound-when I am still and it is quiet. Makes sense. It may help you all too. Rhonda, thanks also for letting me know that the exercises can be miserable at first but then do seem to work. Do you all know what my biggest concern is? I take .5mg of Klonopin right before bed which does take away some of the dizziness. My dizziness is worse when I am horizontal. In other words, I feel much better when I am up and moving. I want to get off that stuff so bad and I know I am not taking much, but I know meds help but they also hurt (side effects). When I was overdoing my exercises, the anxiety was horrible. All I would do was cry and I had to force feed myself because my stomach hurt so bad. When I stopped overdoing it, the anxiety decreased significantly to the point where I am hungry and want to eat. I tried to go off the Klonopin (went from .5mg to .25mg) and that was also a time when the anxiety was horrible. It was also the time that I was overdoing it with the exercises. The anxiety is the worst part. It wreaks havoc on your body and makes all the symptoms worse and you do actually get sicker. I guess I will wait until I am further into my exercises before I try to wean again. I am like Anna, I want to know why there are so many dizzy people out there including myself, but I can't focus on that now. All this was not preceded by an upper respiratory illness and no one else in my family got this, including my children. Thank God. So virus? I was bitten by mosquitoes a few days before the onset of symptoms. I wondered about that. Makes sense to me. I also had 2-3 drinks every night for the past few years just to take the edge off. I wonder if it just built up to the point where I was poisoning myself-specifically my inner ear-like ototoxicity. I think I read that a combination of alcohol and aspirin is not good and can lead to labs. I would take asprin for occasional back pain. Tylenol just never seemed to work for me. So I wonder if the combo had anything to do with it. Alcohol is loaded with sugar too so who knows. Needless to say, I don't drink anymore just in case. Went to the state fair today. Just walked around and got sad as I saw people having a blast on those crazy rides. I was happy for them though. Get well folks. Megan

ps. yes i have waked up from sleeping just out of the blue with dizziness and anxiety. It''s very hard to get back to sleep. Just have to get into a non-dizzy position if possible to bring it back down.


Hello Meagan again, I agree with you on the alcohol I drink about a half of glass every 6 months or so. (Used to) I had a glass around 3 months agoe at a wedding I thought my symptoms were completly under control, and I was very wrong. I felt pretty miserable the next day. I had the same problem with sugar last week. I broke down and had a pillsbury cinamon roll, and felt worst than I did after the alcohol. For me mecholzine works the best if I feel symptoms comming on.However I dont take it very often because of the flying. Hope everyone continues to feel better. Hang in there Meagan they made cry as well. Rhonda


Anna

If I remember righly you are aged 55? I hope it is ok to ask this personal question, but have you been through the menopause?

I am 45, and my mother went through it in her early forties, so it is possible that I am going to do the same. I have been feeling really bad at menstruation time i.e. headaches and feeling really weak but I don't know if this is to do with the Labs/VN or the start of the menopause. I am terrified that I will have to deal with both things at once. I don't know if you remember me (you seem to have an excellent memory for people), but I have had inner ear stuff going on for appx 18 months now. I had a relapse about a month ago (3 weeks off work), but for the last month I have had only minor balance symptoms which has been really good. However, I have just had my period and for two days was back to being really wobbly. That doesn't worry me too much but I keep getting 'whooshing' feelings coming over me (affecting the upper body, arms head etc), and I feel really weak for a while then I feel ok. could this be the menopause? I am so scared when this happens. It has happened before and I think it was probably at the same time last month though I can't quite remember. Anyone else feel this way with Labs or is something else happening to me.


Hi Megan, You are spot on about the anxiety and the vicious circle it gets you in. I just tried a return to work on a short-term contract to see how I got on. It was awful and the anxiety just compounded the symptoms. Some days I would feel like I was in an altered state, a complete zombie and ready to vomit at any given moment!

I don't think there is enough attention given to the psychological aspect of this and mechanisms to deal with it. My neurologist hasn't suggested anything, yet points out that reactions to things like fluoro lights are psychological. Anyway, I've been doing heaps of yoga as a starting point in dealing with the psych aspect (nearly every day for the last month).

Whilst it doesn't seem to have alleviated the symptoms, it's given me far more mental stamina in dealing with them. I've yet to try it in a proper work environment, but I feel much better equipped to deal with it when it occurs. Yoga teaches you to breathe properly which helps when you are under stress - more oxygen I suppose.

Also, I was getting low frequency humming in one ear. This was doing my head in and making it very difficult to sleep - the yoga has really helped to tune this out, even though it is ever present. I like the idea about having a waterfall noise though. I used to live by the sea and that must have helped swamp the tinnutus.

Anyway, just my thoughts - the yoga seems to be helping. It just seems to be a long process in trying one thing after another to cope with this.

Best of luck. Graeme


Anna, apology to follow my post, you are 54 not 55, sorry to add a year to your age!!

I have just been reading your last post and yes I believe CIVILIZATION is to blame for this epidemic of dizziness/ balance problems we are having now. There are so many young people getting this now and over the last 18 months I have had this and have read this message board and others it is amazing how many new people are posting.

Also, I know of lots of people personally who are going down with this illness, most do not suffer for as long as we have but it is still happening on a regular basis. Three of my cousins have had it for years, another cousin for two weeks, my sister has suffered for a couple of weeks and her mother in law has it at the moment. One of my oldest friends has had it for three years. People every day tell me they have had it or know someone who has. What is going on?

I think it is the environment we live in - mobile phones, radio waves all over the place, microwaves, computers, TV sets, bombarding us with radiation or whatever it is they emit. I think they weaken our systems so that when we do catch a severe infection such as a flu etc it goes straight to our ears, where there is already a weakness.

I myself had a cordless phone and charger (landline) plugged in next to my bed for 10 years until I found out recently that they emit 120 times the safe level of whatever it is they emit. 120 times? How can this happen? Why are they not regulated? Could this have caused damage to my inner ear while I slept and lets face it we spend a lot of time in our beds.

There has to be a reason why this is more common nowadays. Is it just like asthma (which I also suffer from), and hayfever, which was not heard of years ago when there were not so many chemicals about?

I am going to see if I can get that book you have mentioned as I do believe that diet has a lot to do with recovery. I have basically kept to a good diet and even if it is not helping with the Labs/VN it is doing me good in others ways. Before this illness I had far too much sugar and salt in my diet. I had a very sweet tooth and had a diabetes scare which I would not have known about if I had not suffered from Labs. That's another thing that is escalating out of control, diabeties, even in the young. This modern world has a lot to answer for. I wish we could go back to the old days in many ways!

Sandie


I have read all the posts and thank you to the person (sorry forgot to note name) who confirmed full throat feeling to be part of this.This feeling started after I began my rehab excersises.

My first hopitalization with full blown vertigo(as told then) was in 2003. Took about 3mths to get over/drive/read a book etc. Then every few mths would happen again but only last about 3 days.

Started to feel unwell March 2006. Told my doc how I felt: What I said - what he said Spacey all the time - vertigo Migraine headache everyday - Chronic headache All nerves in body jumping - no answer Cant sleep because when i close my eyes they keep moving - no answer Very bad neck/shoulder pain - touch of arthritus!

By July and after several visits to doc and hospital for MRI - came back fine he offered me a councilor because he felt I was depressed and suffering from stress. I told him where to stick it, I was frustrated more than depressed although getting more stressed by the day.

In August asked to see a balance specialist, such a long waiting list I paid privately. Best money I could have spent. My balance results showed (in his words) the most spectacularly bad results he has seen in a long time. He said that was a good thing because the worse the damage the better the chance of recovery 85/15%.

He also told me all my problems were symptomatic of my inner ear damage. (wanted to cry, but relieved to know I was not a hypochondriac/not going mad).

Now the bad news, I will feel worse before I feel better. (Didnt think that was possible!)

How wrong was I. I now pay to see a rehabilitation specialist. Have been seeing him for nearly 3mths. Religiously do the excersises 3 times a day. After the 1st lot put me down for 2 wks. Couldnt go out and have never felt so sick.

Not all bad there is hope, I have had a few normal days! Times when my head has felt clear/ neck hasnt hurt and even had a game of badminton.

Think I overdid it with the badminton felt so good had to pay later. Next night couldnt sleep because of falling sensation/rapid eye movement/nausea so sat up all night. Took 4 days to get over the worst.

Oh well still an improvement on the last 8 mths.

One of the worst things (besides this damn illness) is that I cannot plan anything, my world is getting smaller.

I am 45 and went into town with my daughter, didnt feel great that morning but thought i'd push myself, couldnt wait to get out, anxiety attack/ neck pain/ head a ball of cottonwool and the dreaded nausea.

I am only taking migraine tablets for my headaches now. For 2yrs my doctor had me on stemitil tablets, except helping with my everyday nausea I didnt see any benefit. My specialist took me straight off this and couldnt believe I had been left on it for so long as it can cause Parkinsons Disease!

I think I could cope with say: the lightheadedness/unsteady on my feet/the lack of energy but what causes me the most distress is: the body tremor from my own heartbeat/ the headfog and the unbearable neck pain.

My family have been very good especially since diagnosis but they really do not understand how ill you feel since you look so well.

The upside of this for me is I have felt so sick I have lost a stone in weight yippee been trying to shift that for years.

My next big hurdle is at Xmas, my husband thought it would do me good to get away and relax(wish I could remember how)He has booked us a 2wk hol in Tenerife for xmas n new year. I am petrified. It is a 4 1/2 hr flight but on a bad day I cant get out the house, how am I going to get to the airport? He laughs n says he will get me there even if its in a wheelchair. He means well (bless him)

I have been told by my specialists that recovery is a slow process and can take up to 2yrs so I guess i'm in it for the long haul.(no pun intended).

I can accept the time frame while keeping the belief that I will be one of the lucky ones that beat this. If not shoot me now (only kidding).

I had a shop for 7yrs which I sold because I could no long keep up with 7days a week til 9pm at night. I dont regret getting rid it was time to slow down and do something else. This was not what I had in mind (chuckles).

I thank the originator of this site and everyone else who posts. Just knowing I am not going through this alone is a help plus all the info n tips.

Thank you to anyone who reads this, just telling part of my story has made me feel better.(my family must be sick of hearing how ill I feel each day) so I now inflict it on you (sorry)

My best wishes to each and everyone of you and good luck to us all in the future.


right here with all of you


Hi everybody, -just a quick note to let you know that my revolution in diet is continuing to bring vast improvement to a condition I had thought was probably hopeless. My apologies for not responding to some of the references to me over the past weeks but I've been more or less away from civilization doing things I haven't done in a couple of decades. It's been a second chance at life for me and it's going to take a long time to get over the feeling of dis-belief! I still feel I could fall back into that hole at every turn.

I'll be writing more later but I want to give a special thank you to Beata for turning my attention more to diet as a possible cause. I used to think it was my cold-ocean sailing adventures that were the initial trigger to my longstanding ear condition but you know as I look back now, my diet was TERRIBLE for a number of years around that time.

Anna, I'm glad to see it's having some positive effect on you as well, ( talk about hopeless eh? )It will be interesting to see over many, many months how far things can be returned toward where they once were. In many ways it's as if about 30 years of time have been rolled back for me!! Thanks for being so caring,logical and insightfull Anna.

And maybe the biggest thank you to Rich for opening this forum and keeping it all happening. When I first stumbled upon " BLUE " a couple of years ago I thought there was a ghost of a chance that some really usefull information might be given a chance to come to light. BINGO!!

To everybody; It takes a bit of effort to investigate and more or less understand the diet puzzle. People in the know tend to look like "Diet Freaks" to the rest of us. I know,the whole subject used to bring on an immediate reflexive yawn with me. It was sooo boring that I could not even hold my attention on it for a few seconds. So look at it like painful balance therapy or something: short term pain, long term gain. Just DO IT! and keep doing it for a few weeks,............ then a few months. Give yourself a chance to see if it can make a difference with you too. Don't let as shoddy a thing as petty prejudice stand in your way. Anna's right. Dr. Fuhrman is a good place to start your investigation. GO FOR IT!

Fond regards to all and RE-CONNECTED, Tom


Hi Cheryl

I feel so sorry for you but understand how you feel. It is so good to get on these message boards and 'vent' your feelings and they have helped me so much over the 18 months that I have suffered. I don't post a lot but I do read them almost daily and keep in touch with what is going on. I know you never want anyone else to suffer because it is such an awful thing but it is good to know that others do have it and you are not on your own.

Can't believe you have been on stemetil for 2 years, that is not good for you as it does not help your brain to compensate for the damage done to your inner ear. It dulls the signals that your ear is giving off (thousands per second) so the brain never gets used to them. I too have taken them over the course of my illness but they are really only for the worst symptoms at the beginning of each attack not to be taken continuously. Shame on your doctor!

I think most of us get the same treatment from our GPs because they do not know enough about this illness. I have done a lot of my own research to help myself during this illness, no thanks at all to my doctors, not even at the so called specialist clinics (ENT), which are pretty useless.

I was expecting at the balance clinic to be given some VRT especially tailored to me but instead was handed a preprinted sheet that I suppose everyone gets! Unbelievable. This so called specialist didn't tell me anything I didn't already know.

It is so frustrating to have this illness because as you say we all look so normal, but it is hell to live with. Let's hope we will all conquer it at some time soon. I am holding on with both hands to this '2 year' recovery period I have heard about and hope it is going to be true for me. I am much better than I was last year but it just seems to drag and drag. Here's hoping for everyone :)

Sandie


Hi, everybody

I am continuing to read everyone’s posts. I would like to answer to EVERYBODY, but physically I am not capable yet. I am preparing a long post on my thoughts during reading “The CHINA STUDY” by Dr. Campbell, PhD. It is full of startling implications on the way that INDUSTRIALISED world eat. It is “the most comprehensive study of nutrition ever conducted”. It is not a “fad diet”, it is not about “weight loss”, but it is “one of the most important books on nutrition ever written – it can save your life”. I am still reading the book. I am thinking about our “dizziness” and other “DISEASES OF AFFLUENCE”. They are ALL discussed in the book: heart disease, diabetes (gets younger and younger!), cancer (gets younger and younger!), autoimmune diseases, etc. Of course, pollution, toxic chemicals, “waves” of different kinds have a lot to do with these EPIDEMICS. Still, you CAN improve your health by EATING RIGHT. Read two books, guys: The CHINA STUDY by Dr. Campbell, PhD (strong scientific facts and just fascinating reading) and EAT TO LIVE by Dr. Fuhrman (practical use of the contemporary knowledge on nutrition science).

Sandie – I think I remember you. I think you were the one whose husband was and still is very supportive. He said to you: “Sandie, take ONE DAY AT A TIME”. Am I right? Anyway, answering your personal question (boys will excuse us, I hope): I am turning 55 in just a few days. My menopause started at around 47 and it was over at about 50. Strangely, but those were one of the bet best years of my life: no dizziness, no vertigo, a lot of energy, full of accomplishments at work (I got two of my US patents, an published several articles on material science in peered-reviewed journals, I attended many scientific congresses and conferences in the USA and overseas). I went to the gym two times a week and at 50 I looked, as I was 40 (that’s what people said). But there ARE many women on ‘dizziness” websites who mention increase in their symptoms before or during hormonal changes (periods, menopause). I do not believe that hormonal changes are the CAUSE (or just one of the causes) of dizziness. It rather can be a TRIGGER….

Everybody, keep going Anna


I can't take it anymore listening to comments about this being an anxiety issue!

3 months ago I got severe vertigo and was vomiting for 3 weeks from it. Now after 9 more weeks I am left with a balance disorder.

It feels like the floors keep moving below my feet. Everything.... just isn't quite right and bending and moving causes sensations that cause me to be concerned that I might head back into the vertigo situation.

It is coming from my left ear becuase when I slept left it happened and came back at the 5 week mark when i tried to sleep left. Won't do that again.

I know the difference between being anxious from my own fear and being anxious becuase my body is not functioning properly. It makes me angry when people assume it is in your head. Well it is .... it is located in our inner ear and the body is unhappy about the messages it is now receiving about imbalance.... anxiety is the way it informs us of this.

God let someone stand in the crooked kitchen and cook and tell me they are okay.

Ahhhhhhhhhhhhh!

Bert


Hi Anna,

Yes that's me, my husband is still very supportive though he does get a little exasperated as to how long this illness can go on! And, I still take it one day at a time. I am at the 18 month mark now and a lot better than I was last year, though I still have setbacks.

I am 45 and have just tested positive with one of those home kits for the menopause that you can buy. I do have an increase in my symptoms around about period time and I agree with you that this is not the cause it is the trigger. I am so glad you got off scott free during this time of your life and hope it is the same for me!!

I am suffering from the flu at the minute and not feeling so good. Anna, I haven't been able to pop my ears for a couple of months now, (you know when you pinch your nose and blow through your ears?), any thoughts on this?

Bert, I agree with you, anxiety is not the cause of the dizziness/vertigo/unbalance, it is the other way round. The inner ear controls your anxiety levels and most people with inner ear problems suffer from anxiety. I did too, and as I got better and the symptoms got less, the anxiety disappeared. Evertime I suffered from anxiety it felt like it was coming from my head/ ears, seems weird but that's how it was. It is definitely because your ears are not functioning properly. I also had the unsteady feeling when walking for months after my intial dizziness etc but now it is not so bad. It comes and goes though it is still very scary when it happens.

Sandie


Hello Sandie/everyone

As I said I am 45 and am now pre-menopausal. Just before my period and a few days in my symptoms are definitely worse. My specialist says this is due to the changing hormones and fluid changes taking place in the body.

Because of my anxiety/panic attacks which my will power cannot control I am trying Kalm tablets. I really am wary of prescription drugs now and even if these only give me a placebo effect if I think they are helping so what. Anyone else tried these? They also claim to help with menopausal symptoms so I figure I have nothing to lose.

Had a very bad week but hang on to the fact that I must have felt better last week because I played badminton.

I am now keeping a daily diary with a grading system to how I am feeling. In my feeling sorry for myself moments I look back and notice I have felt better.

Does this neck pain ever go away? Some days I am in agony, it is as though my head is too heavy for me to carry. I am told that because over the last 2yrs I have slowly stopped moving my neck so as the avoid the dizzies and my neck muscles have seized up.

Does anyone else think that saying we feel dizzy is an understatement? For me it it like being dropped from a great height on a roller coaster.

Oh well, feel a bit better today, fingers crossed for tomorrow. It is the relapses that always take me by surprise.


hello everyone, cheyrl I had a huge problem with clearing my ears in the begining. However fortantly that is nonexistent along with the other symptoms even migraines have deceased(probably from too much sugar,soda ect,)And thank goodness my motion sickness also seems 99.9%. The only symptom that keeps me paranoid is my sore neck muscle,in the past I have gone to a massage therapist and she taught me how to stretch my neck out. I do this every day. I was also fortunate to discover the Los Osos physical therapy center in Los Osos Ca. They specialize in dizziness rehab. hope some of this helps. And I absolutely agree with Bert about the anxiety I think I was able to ignore it for the most part but noticed I was not looking forward to anything having to do with movement for a very long while. Take Care Rhonda


Hello again, I forgot to mention, Cheyrl that exercising seemed to make a differnce for me in clearing out my ears, however in the begining it made my motion sickness or dizziness they seemed to alternate or get both worse, especially walking. Once your body learns to compencate you can start to ignore most of the symptoms, took me along time before I could manage that one, though.


Hi Cheryl,

Yes my consultant told me too that symptoms usually worsened before a period because of the fluid build up and I do hold a lot of fluid at this time of the month. It effects me right through and after my period! I tried Kalms last year but cannot say I recognised any benefit from them though I did not use them for too long. If they work for you then that's good. Maybe I should give them another go as I think that I might be premenopausal too.

I know what you mean when you say you feel like you have been dropped from a great height on a roller coaster. I feel like this in the car (I don't drive, so as a passenger). If my husband suddenly picks up speed I feel as if my head has been left behind, it is really awful.

At the moment I am suffering from a cold, my head feels as if it is stuffed full of cotton wool, and every so often my balance goes. Since I contracted this illness, 18 months ago, I seem to be more prone to colds, anyone else feel this way?

It is so awful when we suffer these relapses that we do tend to forget how much better we have been in between. I haven't yet been completely symptom free since it all started but when I look at the wreck I was last year I am a million times better. Sandie x


hello all, just a reminder to go slow with the vrt exercises. i did mine this morning (felt better before i did them HA) and kept the dizziness to a minimum (2 out of 10 on a dizzy scale). it's weird how my throat is full now. it's crazy but i know that's all it is and it will go away in a little while. do not overdo the exercises or any activity. my vestibular therapist told me a damaged nerve is usually hypersensitive-doesn't take much to set it off. and unfortunately, she said to try and stay low key and as calm as possible (that's a joke for me) so that the neurons don't overfire. that's what the setbacks are. the neurons finally reach a point in which there is no recovery or latency phase and it's like a dam breaking and there's the bad day or days. the neurons keep firing. both of my inner ears are damaged and the easier i go with the exercises and my day (i'm a typical type A personality) the number of my ok days increases. i do strike a balance though because i know i cannot be still and recover so i keep moving but at a slower pace and i rest more often. so please keep this in mind. i will share everything i can. yeah, i concur that gp's and ent's are pretty useless when it comes to this inner ear crap. it's a full blown shame though on the ent's parts. get well. megan


Hello everyone. I have not posted here for quite awhile, so I thought I would let everyone know how I'm doing. I have been battling this illness for about 16 months now and have been doing better. At this time last year, I was not doing well at all, even though I thought I was doing better compared to how I was when this started. I now see a difference when a month or two have past and I look back to how I was then. I always read up on this website to see all the new posts and people who've been on here for awhile. I would have to say I'm about 90 - 95% better for most days. Like others have said when I get sick, we of course get worse, but the worse has gotten better for me. It's just the off feeling I deal with everyday like many do. I also deal with body wide twichtes which are real annoying. I had those for a year now. Well I hope everyone is doing better and it's great to have a website to share details of all the strange symptoms and similarites so many of us have. Take care and I'll keep in touch. Michelle -


Hi, friends,

WARNING FOR CHERYL and HER HUSBAND

Cheryl – do not make such a mistake! Do NOT allow your loving husband to get you “in a wheelchair” or any other possible way on a PLANE FLIGHT to Tenerife, or any other great place. This trip can make you WORSE. You body IS TELLING YOU, that you are TOO ILL!!!! You WILL survive the trip (no doubts!), but you can REGRET painfully afterwards, that you agreed to RELAX the way your husband insists. Are those YOUR OWN words?!!!:

“My next big hurdle is at Xmas, my husband thought it would do me good to get away and relax(wish I could remember how)He has booked us a 2wk hol in Tenerife for xmas n new year. I am petrified. It is a 4 1/2 hr flight but on a bad day I cant get out the house, how am I going to get to the airport? He laughs n says he will get me there even if its in a wheelchair. He means well (bless him)” Cheryl- I have made such a mistake in March 2004! I ALLOWED my very caring, loving husband to take me “to relax” in Tahoe Lake (7 hours flight with one stop). I had been thinking before the flight: How can I relax, if I can barely walk Cheryl - Your husband is welcomed to E-mail me directly at: anna. akselrod@gmail.com

Tom – BINGO! I am absolutely happy, that you are doing better. I am following your steps. I am doing BETTER on 0% salt added food and Dr. Furhman HEAD aches elimination diet. One step at a time - I am prepared for a long-long battle…. And thank you so much for your kind words… Others on this site – I will print out new posts and will read them later – too exhausted to night (weekends are hard on myself, we have just have a couple of friends for two days in our house).

Hugs, Anna 55 years old - almost, I am fine a comfortable with my age, but NOT with my inner ear disorder, which I have had since age 20!


Hello, Sandie/Megan/everyone

Hope you are all having a better day.

I have noticed that my body twitches/jumping seems worse since I started the exercises but I do feel calmer about them now I know they are part of this disease.

Sandie, I have been told that we are more succeptable to colds etc due to the fact that we are more run down than we used to be - less energy - tire quicker.

Now this should give you all a giggle, for the past 5 months I have had a verruca on the heel of my foot. 5 months ago I had never even seen a verruca! Even asked my mum if i'd ever had one as a child. Have not been swimming (I wish) so have no idea how I got this. Doctor said I was run down (no kidding, by a steamroller hehe) Have had it frozen 6 times and am now trying a diff ointment from the doc. Oh well always good to have something else to think about :).

Can anyone tell me how far into the excersises they were when they noticed they were feeling better?

By xmas I will have been doing them for 5mths. Sorry to go on but the thought of the airport is freaking me out!

Megan, as you say do not try to quicken up the process by overdoing the vrt excersises. Tried it once never again lol. I did ask my rehab specialist if I did the excersises more often if I would get better quicker? NO

It was explained to me that my brain/eyes are making small connections during the excersises but if you overdo it, yours eyes/brain cant cope so kind of go into meltdown and make you feel worse.

I am sure there is a technical term for this but I like my explanations in simple English lol.

Will catch up with you all later.


Hi Cheryl

Sounds like one stubborn verrucca you have there! I had one a few years ago (I never go swimming either), and it was quite big. Didn't respond to the usual treatments, though I didn't go for the freezing technique (too scared). I came across a tip somewhere and it worked for me. Get a couple of matches and dampen the end til the pink stuff goes soft. Rub this onto the verrucca and cover with an elastoplast. Keep doing this every day. Took a few weeks but mine went away. Have also heard that covering it with Duck tape is good but I have never tried that. Regarding your flight at christmas, my consultant told me that I should steer clear of aeroplanes and boats. He said I should never go on a boat and that flying was a bit 'iffy'. Some people are OK with flying and some are not. Me, I wouldn't take the chance, but I have never been a one for flying even before this illness so it is a perfect excuse for me! I like both feet firmly on the ground.

I've had Labs later diagnosed as VN for appx 18 months, got to a good recovery stage after 6 months, pretty good for 5 months after that then relapsed after a cold for 5 weeks, this was in Feb this year, was very unsteady on my feet every day since that relapse until a relapse in Sept 06 for 3 weeks. Since then, the unsteady feeling practically went away and I have just been having moments where it hits me out of the blue for a few seconds. I have had a stinking cold for the last 10 days or so and up til now have had no major balance problems which is really good news. I hope and hope and hope that this thing is on the run at last.

I did do VRT but was never into doing it every day and really sticking to it. I found walking to be my greatest help, which I did religiously even when feeling really bad, and would say that this was the main thing that got me back to health. I am not saying that I am fully recovered, far from it, but I do have a lot of really good days now!

One thing I do still do is the gaze stabilization exercises I got from the hospital. I only do them once a day but since I started doing them a couple of months ago I have got steadily better. Don't know if this is coincidence and I would have got better with time anyway but I am a little scared to stop in case I relapse again. I'll probably still be doing them when I am 90!

I really do hope that you feel better soon, try and keep positive and keep hold of the fact that you will slowly get better.

Sandie x


Hey all, I don't fly but I asked my VRT therapist about flying after inner ear disorder. She said sedatives are ok and may be good just to settle the vestibular system down a bit. Do lots of swallowing, chewing gum, and yawning especially when ascending or descending. Do not force the ears to pop like holding your nose and blowing or you could cause further injury (fistula). Just thought I'd pass this along. Obviously, everyone will be affected differently. Megan


Hello everyone, Cheryl. At first the exercises made me worse than better, I think it took a couple of months the first time around. Sometimes the therapist have to come up with modified manuevers if the halpike does not work. For me the halpike combined with the rollover is the only one that works. In the begining the therapist had to discover the hard way(for me, not her)that I had it in both of my ears not just one. They also told me to expect BPV to go and come back numerous times but at a lesser degree. That is exactly what happened. I did not expect it to be a year and a half later to still have it. It first improved around 65% better. After dealing with it for another 1/2 of year that was when I discovered the therapists that specialized in inner ear problems and a balence machine, I did this therapy for 8 weeks (till insurance ran out). This therapy improved me to 90-95%. Then last month All of this time I kept trying to isolate what was causing the motion sickness,dizziness. I thought it may have been pressure,motion, finally I was able to narrow it down to just motion. Finally I got an immediate reaction to cutting out soda, chocolate, and it seems unnecessary sugars especially sees candy. That finally has improved me to the 99%+. Sorry about spelling,hope this information helps,I am also cutting back on the salt as well at least in the 50% range. Thanks for reading Rhonda


Sandie/Megan/Rhonda everyone else

Thank you for the advice, will take it all on board. Nothing to lose!

Cant wait for the 99% Rhonda thanks for giving me optimism. Funny thing I've always been the sort of person for whom the glass is half full but with this have had a few pessimistic days.

Thanks Megan, after the post to me from Anna which completely scared the hell out of me I also spoke to my VRT specialist who told me the damage has been done and the flight should not be anymore a trigger than anything else. Fingers crossed.

Thank you for replying to me its so nice not to feel alone and hanging in limbo.

Megan/Sandie where are you both from?

Looking forward to 99% in 2007 :)

Catch you later


Cheryl - Sandie's consultant is a smart guy: "my consultant told me that I should steer clear of aeroplanes and boats. He said I should never go on a boat and that flying was a bit 'iffy'". Besides, how are you going to "relax" at Tenerife, if your verucca does not heal and it is not good for you to swim, or take sunbathing, or spa??? Are you going to go for xmas carnival or take boat trips? Think about it!!! Instaed, suggest your husband to go together (just two of you!!!) in the QUIETEST place possible at this horrible xmas time (say, to a countryside) rent a house, or a very quiet cabin with a fireplace. Do not watch TV, or go to restaurants, unless it is a very low-key and QUIET place. Take slow walks with your loving and caring husband, eat small portions of good food, do not talk on the phone more, than two times a day (just short calles to you mother, or daughter to learn, that everything fine with you and them). Read books if you can and wish to, sleep as much as your body wants to. THAT will be the greatest RELAXATION for you in your condition.!!! I personally had such a vacation for 4 days in a very quiet National Park cabin with a small kitchen. I ORGANISED it myself looking up the place on the INTERNET and calling them in advance to MAKE SURE, that there will be as little noise as possible from ANYTHING in the world (cars, motor boats, crowds, etc.) This place was 2 hours driving distance from our home town. A little bit far, but I survived the trip. It has been one of the happiest vacation ever in my life (although I was NOT NORMAL). And I got to know my husband of 32 years BETTER!!!

Everybody, LISTEN to your body, and be IN TUNE with your body.

Hugs, and all best wishes

Anna


hello cheryl and everyone, my husband and i recently moved ourselves and kids from louisiana (northwest) to the dallas, texas area just to answer your question. we really like it here but the traffic is crazy but that's to be expected when you live in a big city and everyone has at least 2 cars! i do hope you have a good flight whenever you go. i have always been the glass is half empty type and i hate it but i have been that way ever since i was a child. am trying to change but it is hard. i have a question for any of you folks who have this inner ear junk and who have had to deal with the full throat/neck feeling. since i've been doing the VRT which is working i am happy to say, the full thoat feeling has gotten worse. yes it waxes and wanes. is this normal? i have really been doing head movement exercises and i guess i am stirring up my vestibular system but i sure wish this symptom would just go away. all 3 ent's (1 was a neurotologist too) i have seen cannot explain this and don't understand it. my vrt therapist is not sure about it. someone please tell me it will eventually go away. it doesn't seem to be one of the most common symptoms of this disorder. thanks, megan


hey guys....has anyone tried going out clubbing with labs...wish me luck, cause 2nyt i am...Im sick and tired of just staying home everynight and going to bed at 9 pm..i fear going out but i gotta beat it...


Hi Cheryl

I'm from England, where it's getting pretty cold the last couple of days. Can't really complain though as we have had a long hot summer!

The chewing gum idea that Megan has mentioned has worked wonders for me. I haven't used it for flying as I won't fly, but I have chewed more gum than ever in my life over the last year as I find it helps me to cope with my balance problems. Must have some effect on my ear tubes which always seem to be blocked, (I cannot pop my ears).

Megan do you suffer from anxiety? Maybe the full throat feeling stems from that. What do you mean by 'full throat feeling' is it like you have a lump in your throat and have difficulty swallowing. If it is then this is definitely linked with anxiety, and I have suffered this feeling too.

MAC good luck with the clubbing.

Sandie x


Hi everyone im so glad i found this site,my first attack of VL was on 2nd dec 04 oh my god i thought i was dying, i must have had 10 appiontments with my gp in that first month,he gave my stemitil which did nothing for me only a side effect[pulling of my facial muscles] i thought i had had a stoke ,i have three children and all saw this and as you can imagine they were uncontrolable,then came betahistine to no avail ,still been sick and dizzy ,i stopped washing/shopping/cooking all of the things a wife/mother has to do so i went and saw my gp and asked him for referal to ent specialist then he started me on cinarizine which yes stopped sickness after a while.Then after nearly 2 yrs they [hospital] sent me to a rehabilitation hospital to start balance exercises ,i was a bit worried as i had done these at my own hospital to no avail, i realy thought i was dying but im ere with some GOOD news after nearly 2 yrs i feel better now than i ever have done so yes there is light at the end of the tunnel they said that it would get better but i wondered at the time as i felt so ill so good luck all and i realy do hope you feel well soon xx


Hello everone, Meagan I know what you mean by the full throat feeling, if you mean you are very aware that your ears are connected to your throat.And they feel swolen 24/7 I had that feeling for the first 3 months, one doctor told me it was from alergies,and prescribed singular, however that medicine made me very tired. For me I think that was corealated to the pyrocantha and alergies, but of course I can only guess. It did seem to only happen durring fall time when the pyrocantha is going to seed and bloom, or around magnolias. This year I have only had a soar throat occasionally and I have not had to use singular. The year that I had the BPV symptoms and before I knew what they were it seemed like I got colds every three weeks and they lasted forever. I have only had one cold this year, and have not had the fullness feeling as severe only when the barometer changes rapidly do my ears hurt. Hope things get better for everyone. Rhonda


hello mac good luck on going out. The one very important thing I learned from the physical therapist that specialized in dizziness/motion sickness is that he said you have to retrain your body not to get it. In other words stop doing something before the symptoms come on. With flying I started by keeping them shorter and had to rebuild to my regular stamina. So maybe try going out for shorter periods of time? It worked over a seemingly long period of time for me. Rhonda The other thing that seemed odd was when I did finally get to 99%+ it seemed to happen instantious versus gradually. It is a very odd feeling. Rhonda


Hey guys...I did it...I actually went clubbing even though it was for 3 hours..The music was thumping and my anxiety levels was increasing but i was determined to see wat it was going to do to me...I had a friend next to me who knew wat was going on with my labs so i told em to be ready for anything.. I came back home about 1 am, with an uncomfortable feeling, that is most probably from thinking how i was going to sleep...But i fell asleep somehow for 3 hours and then it woke me up with head spins so i had to sit up in my bed for 1 hour...this usually happens on a normal night also so i was ready....I could say that the tinnutus has raised one pitch higher on my ear but somehow i feel the same as i always did..i mean the tinnutus doesnt worry me anymore..the only time it becomes a problem is when it wakes me up from my sleep with dizziness and wobbly eyes...does any1 else get these at night...In conclusion, no it wasnt a smart idea to go to a club but in order to beat labs i gotta beat the anxiety that comes along with it...and the only way i could beat anxiety is to tell it whos the boss!!!!

Thanks sandiexxx...and everybody else dont ever let your guard down.."EVERY DAY IN EVERY WAY, I AM GETTING BETTER AND BETTER"


Has anyone out there flown since having this problem? I am afraid to fly even though I am doing well and have fewer episodes and they are less severe. Are there any precautions I can take that would make it ok to fly?


In the fisrt couple of months of this I went flying and it made me feel weird when I got off the plane- Im now 15 months in and went to New York a month ago, which was an 8 hour flight and felt great when I got off the plane.No problems whatsoever.

The truth is you wont know until you try- I would do it- you must live your life- this thing will go one day on its own.

Deus


Hello everyone

I am in England also Sandie.

Suzanne, I have read a lot of the earlier posts and people have flown with this problem. I,m sure I have read that one guy is a pilot and there is a woman who is an air hostess,(she says she feels worse on the ground).

Well done Mac! Its nice to know that life has some normalicy.

From reading these posts it is obvious that we have different degrees of damage and that we are at different stages of this disease.

Although I am only a few months into the excersises I have been living with this for nearly 3yrs. I am sick of putting my life on hold.

I am sure you mean well Anne but unless I am worse just before xmas I am going to go. If it causes a relapse then so be it. It wont kill me! At least I will be in the sun lol.

This is not to say that I dont panic at the thought but if I dont try then when does my life resume? One thing I have learnt from these posts is that we do not know when we will feel 99% so until I do I will have to settle for 50/60%.

I'm sure to some of you that I sound reckless and stupid but losing close friends this year has reinforced to me how lucky I am to be alive and that life is too short to continue it on the sidelines.

Please all wish me luck, I'm keeping fingers/toes crossed that next year will bring normal lives back to us all.

Best wishes


Good luck Ceryl!!!

Keep us informed, please.

My "damage" to the inner ear is probably far more SIGNIFICANT, than yours.... (God bless you all!)

I am feeling very tied and wared off by the condition. My husband thinks, that it is because of my "new diet". It does not come to his mind, that it is because of my ILLNESS.

I am not listening to him any more....

Hugs to everybody, Anna


Hey guys I have a friend who has recently developed symptoms that, to me (even though I have exactly zero medical training), sound like they could be cause by viral labyrinthitis. She had a couple days where she was vomitting and bedridden, and has since, for about two weeks now, been experiencing dizziness and has fainted twice. She also, though, has been having difficulty concentrating and remembering certain things. Does this sound like viral labyrinthitis to you? please help, it would be greatly appreciated. Concerned friend, ~Jessica~


Hello Fellow Labbies,

I am feeling much better these days. I believe I am 90 - 95% recovered, this time. I got Labs in July 2004. Went into remission (?) after about 9 months and then it returned in February (2004)for about 9 months again this time. It was not quite as bad, but still messed up my life alot. I have worked through both bouts of labs, because I had no choice, and because I have found that working at 65% of my potential is still better than many people at 100%. Often, no one realizes that I am struggling with vertigo. Most people are so involved with their own lives, they couldn't really tell my world was spinning (literally). I am a fundraiser, mother of a 12 year old daughter, (menopause and puberty don't belong in the same house) and wife with an extra challenge of a husband that is bi-polar.

When I get really down, I try to keep a view of a bigger picture in the world. I have friends with Lupus, cancer and other incurable diseases so I try to realize how lucky I am in so many ways. If I never entirely recover from labs, I live in the US, hold down a job that pays ok and makes me feel good about myself often. I am struggling daily raise a beautiful little girl into an independent person who will try to make the world a bit better too. I know I am preaching, but, most of us will recover and take our lives back. We need to remember that Labs isn't a death sentence. The holiday season is approching (too) fast. This is probably the only live we will get, so try and find some joy.

Again, Anna, thanks for all your help and for sharing all your knowlege and research into this bazaar virus.


Hi, Jessica

It sounds exactly like viral labyrinthitis It is so nice of you to be so warried about your friend. She is getting through very rough time should be fine in a couple or several weeks. Be with her (you WILL be, I am sure, she is lucky to have you.

Anna


Cheryl Cheryl Cheryl.....

Go out there and give it ago ...I mean i went clubbing...Fair enough the tinnutus in my ear went up 1 level higher the next day, but right now im just the same again===>70%...wat ive learnt is that i can stay up till 2 in the morning as long as i stay away from very loud places...What im really happy about is that i am beating the ANXIETY, and this is very important for me...push yourself to do the things you fear but that are not so extreme...We will get better people..Than we can really enjoy a glass of wine :)


is vrt as simple as doing eye excersises like holding a card or laser pointer at the wall and following it with your eyes and doing excersises with your eyes closed and balancing? am i missing out on other ones?


hey everyone, yeah, i never had the full throat feeling until after the vertigo and dizziness came on. sure i've been anxious before but never experienced that. i know the inner ear and the full throat feeling are related-and yes it is from anxiety caused by the inner ear dysfunction. bad day today. all i did was cry to my physical therapist. i just feel so blue. been over 5 months and i guess i'm looking at 5 more. i'm dreading the holidays. i don't want to shop. i feel so sad for my kids that their mom is so screwed up now. it's hard to smile anymore. sorry for feeling sorry for myself. just a bad day. megan


Hi,

Its me Sam again -- I was doing extremely well until this past week when I had the stomach flu with a 101 fever and vomitting -- So now The day afterit ended I am left with this horrifying dizziness... OMG Please help me!!! Its been 7 days and I feel terrible.....


Hello everyone, Posted nov 7, no you are not missing anything, it seems to me that vrts are simply trying to get your body aquimated to dizziness, there also seems to be several different ways to trick the inner year to do that. Hang in there Meagan, and Sam. Meagan when I have(had for the most part) I tried to figure out if I did anything differnt to set the motion off. Most of the time I could not there seems to be too many consistant factors, however thinking about hows instead of what you are feeling I used this to try to keep myself occupied. It also took me a long time but so far I think I have figured it out for myself. Also I (at least in my case) dont think it is any one item but several factors that seem to lead up to dizziness. I also recently found out that my neck vertabrae was slightly out of alignment.And after reading Annas noise statement I wonder if consistant noise in aircraft along with movement, is another factor, combined with alergies, diet and who knows what else. Hang in there. Rhonda (Mrs. pilot)


Hi I am new to this site and would like to explain my case. I am a 24 year old male and have been diagnosed with Labyrinthitis about a month ago. In the begining I felt so scared and helpless because the dizzyness was horrible. Now I feel a little better but have days where in the mornings I feel bad then it goes away and comes back at night. Now I feel so paranoid that if i go to the store or anywhere in public I will start feeling bad. I am such active person that this disabling feeling has made me feel so depressed. I feel as though it will never go away. I was wondering if anyone ever felt like this before? and does anyone feel fatigued and tired due to the stress involved with this ear situation. I would appreciate any feedback on this


Just on the flying. I've flown a number of times since getting viral lab - a couple of 24hr long hauls back to the UK. I've not experienced any problems, but did take some valium to offset any anxiety problems. Ginger is also quite good if any nausea does occur. I buy pots of the stuff they use in sushi.

I've also found yoga has been really good in helping managing associated anxiety - at any time. Being able to breathe properly has been a great assistance and has held off exacerbation of symptoms - when otherwise they would go into freefall. I don't think nearly enough emphasis is put on the psychological management of this condition.


Hello all, the vrt i am doing does involves gaze stabilization and balance exercises with eyes closed but i am doing others too which are helping more. for example, i am doing rollover exercises during which i lie on my back and then roll to the left side. it used to bring on so much dizziness but now i can do it pretty quickly without much dizziness at all. i also do it to the right. i also look up and then down very slowly as this position triggers dizziness and there are some others. but a good therapist will gear your rehab to your particular positions that evoke dizziness or balance problems. rhonda, i agree. the dizziness is set off by so many things we don't understand and have no control over. some we do though so the things i can control, i do. brian, i am so sorry you got this crap. we all understand how scared you are and how lousy you feel. if the dizziness is persisting you may want to request vestibular rehabilitation exercises provided by a physical therapist or occupational therapist who SPECIALIZES in these disorders. If you have been to an ENT doctor he or she should know what that is. Good luck to you. thanks to everyone for their replies and experiences they've shared. just fyi, after my horrible day i called my rehab therapist and she said when i have those days i must recalibrate (if you will) and lay off the exercises and do everything i can to get my whole system to calm down before i start again. baby steps, baby steps, and more baby steps. get well all. megan


Hello Brian,Nov 9th I felt exactly like you are describing except for the paronia although I did not look forward to shopping or anything that would cause motion sickness. I was not diagnosed with labrynthitis,but BPV instead. Hope this helps and you feel better, Rhonda


hi Brian....we are all in the same boat buddy...i also feel bad in the mornings and good in the afternoons...we are all experiencing the same emotional and physical affects of this sickness...so just remember in your worst days that your not alone..wateva you do dont throw the anchor buddy...time will slowly heal you..im now into my 8th month and now i can go shopping, to a pub and have a light beer and as i've said b4 ive even been clubbing(do not recommend)lol...do only thing im sad about is the new year..I guess i wont be kissing any random girls this year :(

MAC.....


Anyone? I am having a major setback.. Does anyone have any experience with this?? I had been almost at 100% for a few months.... Now I am back at 50%


Thank you all for responding to my post. I feel better knowing that I am not alone in dealing with these problems. Somtimes its hard explaining these feelings to others that have not experienced the same thing. I will give it my best and try to look at the bright side of things i guess it could be alot worse. I cant wait to go out and have a drink at the bar but for now I have the buzzed feeling for free haha Talk to you guys soon and Thank you again


Hello Sam, Yes both my doctors and physical therapists said it is completly normal to have set backs exactly like you are saying. They told me to expect it to go away initially and then come back at a lesser degree. I have been reading the posts and it seems like a more than a few have been having the same set backs as you are.I am wondering if it is the season fall allergies. I had set backs for three seasons, and only felt 50 to 60 % better in between but the dizziness degree downplayed to motion sickness once I got the dizziness under control. My allergies are flarring up this year and luckily so far no signs, yet I am hoping the no soda and chocolate are the contributing factors. If you felt better before you will feel better again, even though it sucks in the mean time. Hello again Brian yes it is hard to explain to people who have not had it before, For me I have discovered even a 1/2 of glass a wine (I dont drind much once every six months )is a very bad idea even if you are in the middle of a feeling good months. Rhonda,


Hi Rhonda,

Thanks for the response... This setback seemed to have come by way of a stomach flu which I had 2 weeks ago... as soon as It ended, the next day I started feeling terrible again. I have been dealing with this for 17 months and thought I was done with it.. Now I am back into panic stage and feeling miserable.

Sam


Sam just remember if it went away once it will go away again, even if it really sucks in the mean time. Rhonda


Hi its me again I just got back from my ENT visit and he said to come back in a few weeks. I asked my Doc if fatigue and presure in the head a part of LAB. He said that you get fatigued because your brain is trying to compensate for the virus causing you to be tired. Does anyone else experience this? Lately I was feeling better and then over the weekend I had a set back. It seems Like I am starting all over again.


Hello Brian,Nov 14 Yes fatigue is a big part of it. I still feel fatigued for no apparent reason, kind of the same fatigue I get after a migrane.That is what I mean when I say 90%+. I still get that feeling of my head wanting to spin even though it is not quite (and I keep hoping it stays this way )I am also dyslexic and that seemed multiplied when I had this. Even though I was not officially diagnosed with Labrinithitis it seems like my symptoms match most everyones on this website. My guess is I got both BPV and Lab. I hope that you do not get both as well.I also hope your goes away much faster. Rhonda Did he say what causes the pressure?


Brian,

Oh Boy -- I experience this :) Right now I feel so exhausted... I could go to sleep for the next 15 hours.... I try to stay awake though to give my head more time in the real world.... + I tend to feel better in the evenings, and anything I can do to avoid the next day :).

I also have pressure on the left side of my head... It comes and goes in severity but is there always when I am dizzy...

Sam


Hi everyone,

I have been reading this forum for a while now and tonight instead of going insane, I decided to post. My doctor casually diagnosed me with labs about 6 or 7 months ago. I told him this has been the weirdest year ever as far as strange sicknesses that come and go. The one consistant thing is I'm always off balance. However these past few weeks I have had sharp shooting pains surrounding both ears and in my jawline and cheek bones. Also my eyes are really bothering me, like it hurts behind them. Does anyone recognize these last few things as yet another fabulous treat in the goody bag of labyrinthitis?

THANKS - Katie


Hello Katie, I am sorry you have to through this crap too. Yes I know exactly what you feel like. I had a very tight jaw and my massage therapist showed me how to loosen it up. I reccomend finding a very good massage therapist, I still dont know how to get rid of that annoying off balace and sensitivity to motion. I still not sure if that, the motion sickness, or dizziness is the worst. I think that went away the last after 7 or 8 weeks of physical therapy the second time around. If any else knows I would also love to here. Hope you feel better. Rhonda


Hi....I have only posted on here a couple of times but have had Labs for 32 months...and these have been the weirdest years of my life.I too get the funny feelings behind the eyes and also occassionally the jaw pain.You wake up every morning and the first thing on your mind is your head are you fuzzy today or just off balance a tad. I go to aerobics 3 times a week...no turning around just face one wall..and some days I wonder how I get through it...it sometimes feels like an outer body experience...I know I am doing the moves but it just seems a blur....but keep going I do...I must for my own sanity. The same with shopping centres and supermarkets...always glad to get out....I am much better than the first 5 months of this crazy thing that we have....but some things just linger. I am hoping one day it will just dissappear...but I won't hold my breath...I read all posts and it is most comforting to listen to everyone elses ideas and maybe new things to try to improve our situation.....just keep putting one foot in front of the other....thats what I do....good luck to us all...Louise


I am so glad that I found this sight. I went to church one morning in October and by that evening I had severe dizziness and could not function. I spent 2 weeks in bed and trying to do normal stuff. I finally went to the doctor and he said it was alergies. After about 1 more week, I pushed for more, I was referred to an ENT. I had a very bad headcold and was given medication. By that point my ears had begun to ring non stop. After the antibiotics, was clear of the headcold, but the dizziness and ringing persisted. I am now into my 2 month of this crazy thing and I have been diagnosed with Labyrinthitis. I can now atleast drive my car, but I have to be careful when I am shoping for groceries. If I move to quickly I get dizzy. I also have noticed that when I feel like I am catching a cold it flares up again. I had a really bad flare up the other night and I became extremely sick, dizzy and fatiqued. I fail asleep on the couch and I had a horrible nightmare. My ENT said that to give it a couple of months, and if by the first of the year my ears are still ringing to come back and see him. I am going to try the Ginkgo Biloba and hopefully that will help. Oh and by the way, I am a coffee lover from way back and my first month of having this, I could not stomach the taste of the coffee. I was glad to read that others had the same thing happen to them.

Sincerely Ann November 15, 2006 Loganville, Georgia


Thanks, Rhonda, for your response. I suppose it's just a matter of comfort knowing that there are people who feel the same way I do. Though every now and then I work myself up into a tizzy worrying about specific things I know are just a part of labs. Thanks again... Oh yes and Louise, 32 months is a long time, and I totally get the lingering that you are talking about. It's just horrible because everything thinks you are nutso when you tell them what's going on!


Hi everyone, I'm beginning to get even more worried. I'm doing VRT which is helping with the dizziness, but one thing that seems to have gotten worse is this feeling under my chin/jaw area. Sometimes it feels like muscle spasms. The right side of my face is tingling more and sometimes I feel kind of numb under the chin and jaw. OK I'm thinking I need an MRI to rule out cervical MS (c1-c2 level). It's as though someone has his hands on my throat, choking me. Does anyone have this? It does not have to occur with rapid heart rate or difficulty breathing. Megan


Hi everyone

Hope everyone is feeling a bit better. My excersises for the next month are to go out to busy places. Leave before I feel ill (haha).

Told my rehab specialist that I had a panic attack when my daughter took me to a shopping precinct. Had to get home quick, no prezzies for anyone this xmas lol.

I was probably being over ambitous, first time to anywhere busy in 5 mths.

Since then one of my daughters has taken me for a walk around a large lake on a blustery day. Felt weird to did it. All that open space.

My other daughter took me to a shopping center, kept myself calm when I felt any symptoms I left the shop. Did feel very disorientated in one shop and had to leave, it was very colouful with lots of mirrors/people and xmas lights. Just a tad too much for me. But I did it, yippee.

I really feel like I am making progress even if it is slower than I would like. As with you all I was shattered after these trips but I am building up my confidence. Hope I can keep it up.

There are times when I want to tell my family to leave me alone but they refuse to let me wallow. They ask everyday if I have done my excersises and keep telling me that I am getting better.

They tell me that my old personality is comming back, I have started to laugh again and am obviously not so miserable, cant wait to feel like my old self (one day hmmm).

Chin up everyone, will keep reading and am keeping fingers crossed for everyone.


I forgot to mention again that for me mechozinne belief or not was the magic pill. No side effects and it seemed to have an immediate effect. Rhonda


Hi Megan,

I believe that the nerve which affects vestibular 9th?? Is right next to the 8th which can cause things like Bells palsy and other weird symptoms.... Sometimes they say that when the Vets nerve is affected the adjacent nerve can also be damaged, which sometimes causes other things to happen. Speaking in my case, I too had twitches in my eyes (Oh and spasms/twitches can also be caused by stress).. I also feel pressure around my sideburn area as well.. Hope this helps.

Hey, has anyone here had a really bad setback due to a cold or virus of some type... What were your experiences with it? Even not due to a cold.. But setback in general... I am in the midst of a doozy and getting crazy mad at it....

Sam


Hi, DIZZYIES

I love you all, although I cannot read and answer your posts.

It my first months on ZERO SALT ADDED, no caffeine and sugar diet. I AM FEELING MUCH BETTER. Guys! TROW AWAY THESE things from what you eat! You will feel remarkebly better!

Anna (54 years old, 34 years with dizziness)


hi every1....i have had labs for 8 months now and for the past 3months i have been on aropax for mostly anxiety...i decided to get off them 2 days ago but unfortunately i went through hell..soon as i left aropax i had so scary dreams, first of all i woke up at 11pm and it did not let me sleep till 3am and when i tryed my hardest to go to sleep it made me have the scariest dreams where i was awake but i could not get my self up from the dream...i was trying to yell out to my parents but my mouth would not open..the next day my ears were so sensitive for the first time in a long time that everything was so loud and that i felt nautious...so i went to my doctor and he told me to stay on the aropax for another 3 months...soon as i took one that night i had a good sleep and felt like a million dollars the next day...i dont know wat this aropax has got to do with my ear but i just found out it helps me so much and i dont want to go through that night again...does anybody else plz let me know if they take any anxiety or depression pills that do help them with their sleep or with labs that extra bit...

MAC....


hi mac and all, i take .5mg klonopin in the evening close to bedtime. i started it because it helped with the dizziness as it sedated my vestibular system and of course everything else. i am starting on an ssri in the next couple of days. i am in a very deep depression that i cannot pull myself out of. my family is suffering because i am having a difficult time with this crap. also i tried to wean myself off the klonopin by taking half of the usual dose. the next day was horrible. severe anxiety, stomach ache and severe dizziness. so i too went back on the regular dose. i have heard that one should decrease the doze by 25% each week until completely off. i am hoping that the ssri (anti-depressant which is not addictive) will speed my recovery and help me wean off klonopin. my recovery will be better if i am in a much better state of mind. I read some literature on wikepedia.com about labs that said ssri's may actually help heal the vestibular nerve. i hope it helps. i am still getting my mri on monday to look at my neck. i am hoping they do not find lesions on my cervical cord. take care all. megan


i forgot to comment on the setback thing due to a cold or whatever. well i've currently got a cold that i've been dreading ever since i got this crap. it started with a sore throat and is moving upward into my sinuses. i feel spacier and a little more dizzy when i do the vrt so i am just not going overboard with them. this cold seems to be moving slow so i don't know when i'll get rid of it but i hope the extra dizzies go out with it. megan


megan - the past couple days i too have been feeling tingling almost all over ...especially my back and legs...i dont knw wat it is...everyday feels like hell i feel i am slowly gettin better but then a set back like this happens and screws me over :( so sick of feeling all these feelings

farah


Hi Fellow dizzies: I have had labs for almost 3 years or at least what I was diagnosed with. I just saw a specialist at Mass Eye & Ear after waiting 5 months for an appointment. He told me that I may have had labs to begin with but it does not last that long. He diagnosed me with Migraine Associated Dizziness. He basically said that you can have dizziness from migraines without having the headache pain. I do get alot of headaches but I would have never thought migraine associated dizziness could be the problem. He expressed how the doctors just don't know or believe that migraines could cause dizziness 24/7. I just wanted to post just for an FYI. This doctor only specializes in dizziness. He referred me to a book and advised that I go on the migraine diet which seems to have alot of things on it that I cannot eat. I will see him again in 3 months and give my best effort to try the migraine diet. I had been diagnosed by 2 different doctors to have labs. My GP & an ENT who is really good. Happy Holidays to you all!!


Hey Farah and all, just wanted to say that the mri of my cervical spinal cord was negative for any lesions for which i am extremely thankful. i don't have the best looking cervical spine (degenerative changes) but there is no evidence of spinal cord compression. i had the mri because of that scary fullness that i get from time to time up under my jaw, kind of where the salivary glands are (submandibular). it feels as though those muscles go into spasms at times which does not feel good. multiple sclerosis can cause spasms so i wanted that ruled out. i guess all of this is from the stupid inner ear stuff. farah, you want to hear something weird? one of the positions that is difficult for me (brings on dizziness and other stuff) is lying down and turning my head to the left. well at times when i do it, even though i do not get dizzy, i get the creepy crawly feelings down my butt and thighs and lower abdomen. when i return my head to midline, those feelings go away. it's all anxiety related to this inner ear damage and i am not particularly anxious when i am doing those exercises. it's not in the head. it's the physical response. i, too, get so angry about all this even though i know there is so much horrible suffering in this world. i guess i'll start the prozac (ssri) tomorrow. i'm done being stoic. i was on the stuff 20 years ago for a few months and it definitely changed my thinking- i quit making mountains out of mole hills and i just didn't worry as much about life in general. i just slowly weaned off and was fine. i hope it works this time. i hope everyone has a good holiday. we're heading to louisiana to see family tomorrow but not before my rehab. take care and be strong. megan


I HAVENT BEEN ON HERE IN AWHILE JUST WANTED TO UPDATE YOU GUYS For all of u that dont know me my name is Chad i have been on here for 1 year and 10 months...the 1st 2 or 3 weeks i was off work feeling horrible icouldnt look at the computer, read, etc....than after them few weeks i was left with a unsteadiness feeling which has last 1 year and 10 months...i have been doing alot of reading and i have read alot of doctors saying this unsteadiness feeling in my head can last years.....i have been to like 5 doctors, specialists, etc.....i have a CT SCAN, MRI, HEART TESTS, XRAYS, BLOOD WORK, etc ALL NEGATIVE...i also went for a ear doctor who ran me through the tests and they said my right ear is damaged severly....its just weird this unsteadiness feeling only lasted like 2 weeks the last two times this has happened to me.....(when i mean unsteadiness i mean like my eyes are just alittle out of focused, a weird surreal feeling)....but i cant play basketball and all that anymore i get way to tired and my heart beats amillion miles per hour.....but i still walk on the treamill etc....doctors say i will get better in months and years....hopefully i do...BUT I AM BACK TO WORK AND FEEL ABOUT 85 PERCENT MOST DAYS....Chad


Hi Chad,

Have been watching your posts over the last 19 months and glad to see that you are back to work and feeling 85 per cent most days.

This is the same for me too although I have had a few setbacks along the way. I still have a sense of imbalance when I am walking at times and my head feels so weird. I am interested in what you mean by an unsteadiness feeling in your head? I find the way I feel hard to describe, it is not a headache as such that I suffer from and I don't suffer all the time, it does clear, but it is like a 'sickly' feeling in my head. I also feel dizzy if I bend my head forward to look down at something for more than a few seconds.

Does anyone else have these peculiar sensations in the head. It is not dizziness, sometimes I feel like I have a hat on and it affects the top of my head.

Take care everyone.


To "No Name"

YOu inquired about the strange sensations in your hjead, and I believe most peopke who dont describe their dizziness as vertigo have some sort of variation of this. Dizziness tends to encompass many different symptoms... Pressure In the Head, Strange Visual Abnormalities, Unsteadiness, Balance, Weird Feelings, Feeling Off, UNable to focus... Just a gross sensation etc in the head....

Some others describe the rubberband feeling like they are wearing a hat.. Like a pressure sensation... All of these things are normal symptoms of an inner ear disorder... The mismatch in signals can cause an array of strange things....... Also, alot of people experience anxiety... This is also a common symptom.

Sam


Hello , It's my first time writing here , but i have been reading you for 10 months , it has helped me a lot to cope with this..... I have been suffering from labyrinthitis for 10 months now..the first 3 months were hell. I stopped working and stayed at home all the time, it was very hard emotionaly, i had a lot of anxiety. At first i had no idea what labyrinthitis was and was pretty sure i had a brain tumor, i had the worst headaches, dizziness, nausea, my head was pulsating and a lot of pressure too. It was so long before i got a little bit better i never tought i would at one point, but i did.. i have good and bad days and i have set backs , i feel dizzy most of the time, it's worse in the morning, my head always feels weird like dizzy inside, seems like there is something moving in it, pressure, pulse,hard to explain ..but really annoying, i went back to work after 3 months but part-time, still not woking full time. I wish it could go away so i can be my old self and enjoy life at the fullest..sorry for my english I am french ..from QC, Canada

I sympathise with all of you and know how hard it is, but keep the faith !


Hi Julie,

Sad to see you here... It means you have to deal with this ugly illness.... Just remember that if you have shown progress, you should feel better that you are making steps towards recovery... Its a very slow process... VERY SLOW, but it will just hit you one day thats its not so bad.. and it will continue to get better... You will recover, you will be back to your normal self and you will be happy again.... Its going to happen.... Just give it some time..... Take each day 1 day at a time.... judge your progress by weeks, not days....

Sam


Hello Sam ,

Thank you so much for your encouragement, as i can see you had a setback lately and it's a hard time for you right now. It's hard to understand this ilness, i am afraid to get a cold or flu, anything that could bring it back again. It's also hard to explain how you feel with your family or friends, because when i go to work i don't look sick, but everything is going on in my head and i have to struggle all day with my dizziness and my non stop annoying feeling in the head. The first month I had a cat scan , MRI and it was all good , i saw a neurologist and a ENT specialist, but they cannot do anything. You just have to wait until it goes away by itself, it's a pretty long wait i can't still believe it, the doctors said 6 to 8 weeks, of course in their medical books it is but not in real life...I took a lot of natural products like ginko, bioflavonoids, I had to take gravol for the nausea and Ativan for the anxiety it help a little but when you feel like you are on a boat cruise 24/7 there is no magic pill that does the trick or I would taking it a long time ago. When you feel tis bad and you feel like you do not have any control of your body anymore you are ready to try anything. Sam did you get the caloric test to see if you had a permanent damage to your inner ear, the ENT wanted me to have the test but ther is no way i am going to trigger intentionally vertigo, i know people who had it and it's really scary. I already know i have something wrong with my inner ear because of labyrinthitis and that there is nothing we can do about it. You to have this weird feeling in the head, my ears get block sometimes, it always happens in the morning for about 3 to 4 hours for a couple of days and it goes away. Weird illness...you didn't hear from that ilness so much 10 years ago and now it seems to be going around a lot ...Sorry for the long message, but i have so much to say and to ask.. and i feel understood to discuss with people who live with it....i think my family is a bit tired of hearing about my illness : (

Thanks , Julie


Hi all. I just hit my 1 1/2 year mark at thanksgiving time. I really feel like I hit a point where I am just stuck....the hoidays were miserable and I can't beleive that I feel bad yet again for the holidays. I am beginning to feel uncontrolable anger instead of depression now......I am just mad now that I STILL have this....I want to just be proactive and really do stuff to make it go away....and nothing seems to make a difference. Just voicing some frustations....I want to get out and live again and I want everyone else on these boards to get better too. Why are there no recovery stories it seems? Any words of wisdom?


hi guys...is anyone from australia with this virus...plz let me know...we are all in this together guys..Wateva the prob make sure you always keep posting your comment...my parents are also bit tired of hearing me julie, and thats because i look like a million dollars on the outside..but its really wats in the inside that counts :) mac


Hi Sam

Sorry, forgot to fill in my name in my post. I have been posting for the past 19 months and this board has helped me a lot and thanks for your reply.

What really gets me is the amount of different symptoms that you have at different times with this illness. This weird head feeling is a new one for me and has only been happening for the last couple of months. Of course this is worrying because I am back to thinking the worst again.

Saying that, I am much better than I was a year ago, so that's good news.

Julie, I could have written your post myself! It IS so hard going to work and you look so normal but all this junk is going on in your head and at times it is real hard to keep smiling. I only work three days now as I could not manage full time. You are lucky in that you have had scans etc because I have had nothing like this, which always leaves that niggling feeling that maybe there is something more serious going on in my head.

I did not get the caloric test done either because I was in such a state at the time it was offered. I suffered from anxiety (all gone now), and that was the last thing I wanted at that time, induced dizziness! It took me all my strength to actually go to the hospital I was in such a bad way. I was also told by the doctor who was going to perform it that it would make no difference either way to the outcome, I would be treated exactly the same.

You are also right in saying that this illness is getting around a lot. Two of my friends have had it in the last two weeks though it has only lasted two days each for them and they have been ok. They now know what I have been going through for so long. But, two people in one week, what is going on?

Take care

Sandie


HI Julie,

I did have the ENG test which showed damage in my left side. I did not get further testing as I feel it is almost useless in this case..... Aside from the whole array of regular testing, MRI, CT, blood etc.......

I usually have to take a small dose of xanax for the anxiety... The dose I take is probably somewhere around .075 or a 1/4 of the smallest dose... Sometimes it helps, other times it doesnt. The last 4 days I have been off the xanax completely... and I am having a rough day today... Terrible.... I almost gave in and took it.

The atavan should take away some of the dizziness if it is a benzo as it numbs your Central Nervous System... Just be careful not to take too much as it can hinder/slowdown your recovery.

I also have been on SSRI's... Actually before this latest episode started, I was down to such a small dose and I had been weaning myself off for the last 4 months. Now I upped the dose again, hoping it will help to get me through this rough patch.... It is difficult.. i am having a hard time not knowing what the next day will be like.

Sam


Hi everyone I hope everyone is doing well while fighting this Labyrinthitis monster. I was wondering does anyone feel very spaced out and dissconnected throughout the day. It seems when I wake up in the morning I have not been getting dizzy but in fact a foggy headed feeling. It usally is worst in the monring and by the evening goes away. Is this normal part of Labyrinthitis?


Hi everyone.

Firstly Id like to thank you all, finding this site has given me hope as when I have told people about my condition nobody seems to have heard of it.

I have only been disgnosed with this horrible virus earlier today, although it has been going on for over 10 days already now.

My main problem is that people dont understand what is happening, as I do look fine on the outside. If you saw me you would think nothing is wrong (apart from when im having an 'attack.'

To me, the world seems very surreal at the moment, like im looking into it through somebody elses eyes, or im looking in but im not actually a part of it, like im not with it at all. Has anyone else experianced this, as for me, this is the scariest part of all.

I havent been at work for the past 10 days and today got signed off for another week to see how I get on. I havent been prescribed anything yet to take as I dont have any sickness with this virus (and I pray it stays that way)

I have had a headache for the durtion of the virus so far, and this turns into migraines on occassions, but never completely goes away.

Does anyone have any suggestions as to what I could do to help prevent this illness from getting worse? As my doctor just told me to rest and to go back next week to see how im getting on.

I hope everyone gets better soon,

Kelly


Brian,

Yes... Dizziness actually has many forms...Many people here characterize a feeling of off, heady weird, foggy strange, pressurey etc.... as dizziness if it doesnt fall into vertigo or spinning. I myself wake up and its the worst for me... as the day goes on, it gets better, and at nighttime its at its best. If you have no symptoms during teh evening, I would say that is a good sign of recovery


Hello Brian, Absolutely, when I had the symptoms I would get that spaced out, disconnected feeling through the day. It was the worst in the morning and evening,it does help to sleep with the effected year down. I always hoped that disconnected feeling replaced the dizziness and it was a good sign. But I am not sure that meant the dizziness is subsiding. Rhonda


Hi Julie My name is Louise and I am from Australia. I have had this thing for 32 months. I am improving but it is such a slow process. Also to Sam I too take 1/4 of the lowest dose of xanax but only when I am going to a large shopping centre..it seems to relax the muscles in my head and I can get thru a couple of hours without it I feel very spacey to say the least. one foot in front of the other to everyone...Louise


hi all, for those of you who do the vrt exercises i have a question. do you find that you can do them fairly well for a few days and then one day they send you into a spin? that happened to me yesterday and i stopped immediately but the anxiety came and got worse into the evening and thru the night. so did the dizziness. a little better today but holding off on the exercises today. also i was wondering if any of you who tried ssri anti-depressants if it made your dizziness and all worse. i was on prozac for 6 days and quit because i thought that horrible day yesterday could have been brought on by the anti-depressant. as they are working on the chemistry in the brain, is it possible that they could over stimulate the inner ear? just wanting some answers if you have them. thanks, megan


kelly, i have heard that steroids will help reduce the inflammation and thus the damage to the inner ear while the virus is active. megan


Hello everyone,

I had a bad night yesterday, the dizziness wakes me up when i am sleeping, i get a very strong weird feeling in my head and i wake up in panic. I slept with my head up, almost sitting in the bed all night trying to fall asleep,it was a long night. Now this morning my dizziness is worst, its hard trying to work in this condition. I had a good couple of days before that i always have hope that it will go away completely, but it's been almost a year now and its always ups and downs. I was better this summer and when fall arrived I had a setback and i am still struggling with it today. This morning i feel dizzy it's hard to continue writing i feel like i have a pendulum in my head and i am sensitive to sound....Has anyone ever had the dizziness during the night and that constant feeling of pressure and movement in the head ?

Thanks to all , hope you have a nice symptoms free week !


Anna,

How are you doing lately???

What symptoms are you still experiencing?

Sam


Hi, all my dizzy friends

Chad, Rhonda, Sandie, Megan, Sam, Kelly, Brian, Julie, Farah, MAC, Cheryl, Deus - EVERYBODY on this site:

TRY ZERO SALT (SODIUM)ADDED, NO CAFFEINE and NO REFINED SUGAR EATING STYLE. Eat LOADS of fresh fruit and vegetable, whole grains, beans and nuts. Very LITTLE or ZERO animal products. It will SAVE your life from DIZZINESS and improve your health in GENERAL.

I have turned to such eating only a month and a half ago and I can ALREADY see a big difference! Great turn to the better in my 34 year experience with Dizzy monster!

As I figured out - for me personally the MOST OFFENSIVE SUBSTANCE was SALT (SODIUM)!!!

Maybe, it is too yearly to bring my FINDINGS on this site, but I feel so bad, that so many good people are suffering with no help....

Rich Baker - You improved the appearance of your webpage. I can read it from the screen now, without printing. Thanks a lot!

Anna (55 years old, 35 years with dizziness)


You're welcome, Anna. I made some less superficial changes too.

Firstly, there's an RSS feed for comments at the top right for people who use newsreaders or things like Livejournal friends' pages to read news feeds. This would mean that people could follow the discussion here without constantly visiting the site.

Secondly, I'm working on TypeKey integration so that people can sign up to become trusted commenters whose comments appear automatically on the site without moderation. This doesn't seem to be working yet but I'll add a note when it's all sorted out.


Hi Anna,

I have given the sodium diet a chance, and must say that though i have not totally eliminated salt from my diet (just can't resist cookies and chips and stuff sometimes) i am definitly reading labels more cautiously now and watching what i am eating. Yes my days do seem to be a bit better, and maybe if i stay on this diet i will get even more better. I'm trying to keep the sodium intake to less than 2000mg a day and its not too hard.

Thanks for letting us all know about this diet. And i hope you continue to feel better.

Cheers :)


I have started doing MUCH BETTER on 1000 mg sodim per day. All according to Dr. Joel Fuhrman recommendations (look at his website)

Watch your SODIUM intake!!! Look at the LABELS in the supermarkets.

Anna


Sodium....

I know in Meneires that one of the treatments is to avoid extra sodium in the diet. I believe that the sodium messes with the fluid levels in the inner ear, thus causing symptoms. Keeping this under control will provide more relief. I guess sometimes even in labs affected patients, the sodium levels can interfere with fluid in the inner ear causing symptoms to become more pronounced. The same is true with caffeine as it constricts the structure in the inner ear....

Sam


Sam, great!!!!!

You got to the point!!!! Meniere's DIET SHOULD BE PRESCRIBED to EVERYBODY with VERTIGO and/or DIZZINESS and/or HEADACHES. They come all from the same CAUSE: poisoning of sensitive nerve endings in our heads with METABOLIC TOXINS wich ACCUMULATE in our bodies over the years of abuse: excessive SODIUM, CAFFEINE, REFINED SUGARS, fatty and sweet ice-cream, etc. Stop consuming these substances and CLEAN your liver, intestines and kidneys with a lot of raw and cooked vegetables and fresh fruits. You will get a lot of vitamins and antioxidants with them.

I have been doing this for only two months - and my disabling condition improved significantly: I CAN LEAVE WITHOUT noise - cancelling earphones now!!! I am out of barbiturate and caffeine painkillers for my horrible (in the past) headahes!!! THE PENDULUM in my head STOPPED (!!!!) almost immediately with restriction of SODIUM intake. I consume only sodium (Na ions) that vegetables and fruits contain NATURALLY. I am still weak - but I have MUCH more energy at the end of the day, my mood improved significantly.

I know, that REALLY SMART doctors prescribe zero-sodium and no-caffeine diet for people with HEAD TRAUMA because these substances MESS with sensitive nerve endings in the head. Unfortunately our regular doctors (family, ENT, so-called "balance specialists") are smart EXTREMELY RARELY.

Read Dr.Joel Fuhrman book EAT TO LIVE or go on his webpage. He is amazing - he is one of those rare SMART doctors.

Hugs,

Anna


Anna.......I am really happy that you are doing better! I always love to hear positive things! I was just wondering if you ever suffered from any visual problems....such a static snowy vision? I have this...and I just wondered if it is from the inner ear problem. Thanks a bunch!


Anna I am thrilled to hear you are doing so much better. I happened to cut back and eliminate even one soda a day makes a huge difference. Also eliminated 99% of chocolate and also cut back on salt after reading your comments. Diet seems to be an overnight change.I also think my neck vertabrae has straightened out as well. Hope everything continues to work for you. Rhonda


Hi JULIE....im also from australia/sydney...where in aus are you located? MAC......


hello to Louise,

I can't see your name in the comment so I am not sure its you , but to answer your question...I know that you are from australia/sydney, but you must of confuse me with another person , the post i wrote was on november 26 and at the end i wrote that i am from Canada..i wish i could be in Australia thow..did you have a nice week, it started to snow today , winter is really here to stay .. I am 33 and i own a beauty spa... last night i got broken into my store luckily nothing was stolen , but the front glass door was broken , it was pretty cold in there, i got a call at 2am to fill a police report, i just came back , so i slept only 2 hours last night and now i can feel my head pumping ,more dyzziness and i have difficulty going to sleep, stress and lack of sleep is the worst and yesterday was unfortunatly all that. I will try to sleep this afternoon, or will pay the price later with my symptoms. Crappy night...

Thanks,

Julie : )


It's me again, sorry Mac , I just saw your name at the end of the message, I thought it was Louise that wrote this message since i know she is from Australia. I read one of your previous messages and i have too dizzyness that wakes me up in the middle of the night, it is pretty scary, i have nightmares as well and my head feels pretty weird lots of pulsating and pressure feelings. I have to sit back in bed until I feel a bit better and can go back to sleep....

Thanks

Julie


hey folks, please respond about anti-depressants (ssri's). I tried prozac 20mg for 5 days. i then skipped a day because the pharmacist said i could due to the side effects and then took it one more day. i could not stand the side effects (insomnia, nausea, hot flashes) so i stopped cold turkey. i've been off for 5 days now and i just feel horrible. i don't know if it is the withdrawal from prozac or if i am having a setback or i am just getting worse. the anxiety is so bad that i cannot eat and i am dizzier. it seems as though everyone including neurologist and vrt therapist is pushing me toward a psychiatrist. i can't believe this. i used to feel better and i think i am getting worse. please what do i do? i don't want drugs. i am so sensitive to medication. i just don't know what to do anymore. i am losing it. megan


Hi Anna,

It is so lovely to see that at last you are feeling better. Since I got Labs/VN last April I have been careful with my diet and eat much better than I used to. I do not add any salt at all to food, have cut out most sugars including chocolate and do not eat ready meals very often. Before I caught the virus that causes Labs I was eating loads of sweet things and ready meals were commonplace for me. Now I eat loads of fruit and vegetables and only occassional treats. I am at quite a good stage with this illness, I got back to work after six months and have had a couple of setbacks since then (19 months for me in all), but most days I am pretty good. I honestly believe that I ended up like this because of the diet I was eating at the time and also on the other hand believe that I am a lot better because of my radical change in diet.

I am not saying I am fully recovered, but I'm getting there!

Everyone on this planet who does not have a diet with plenty of fruit and veg included IS putting their health at serious risk because there is far too much salt and sugar added to everything you buy. You have to be very vigilant and read all labels carefully because they also try and disguise it under different names.

Hope you keep on improving and improving Anna, good luck xx

Sandie


Somebody asked me about snowy vision: “Anna.......I am really happy that you are doing better! I always love to hear positive things! I was just wondering if you ever suffered from any visual problems....such a static snowy vision? I have this...and I just wondered if it is from the inner ear problem. Thanks a bunch!” Yes, yes, and yes: I DO have all kind of VISUAL problems with THIS THING! Now listen EVERYBODY to what Ms. pilot Rhonda said: “I happened to cut back and eliminate even one soda a day makes a huge difference.” (!!!!)

Great, Rhonda!!!!

Diizy people, WATCH what you eat and drink!!!!

Hugs, Anna


Megan

About the SSRI's They actually take up to 6 weeks to have the full effect, but usually you dont feel the benefits until about 2 weeks. You ofcourse can have some side effects, but usually if you stick through it, they will subside... Either that or try another SSRI.. I had been on zoloft, and after 2 weeks I was havin massive anxiety and paranoia.... It didnt really work for me. If you have been on for 5 days, your most probably not going to have withdrawal.

Sam


For Mac? I think you were asking about anyone in Australia. I am in Sydney, let me know if you want to get in touch. I've been dealing with this for nearly 3 years now! Cheers, Graeme


thanks sam for the reply. i am terrified to try another ssri and so i won't. i don't want any extra anxiety for any reason whatsoever. it's hit or miss and i don't want to do that anymore. regarding the prozac, i felt the physical (side effects) effects immedicately after taking it the first day so i imagine it was having some effect on my body and probably mind. i just felt horrible after stopping it abruptly. who knows. i'm just hanging in there. nausea has been a big problem since stopping it but i had stomach pain (mild) after starting it so who knows. i just don't want to get too skinny. am having to force feed myself. ick. thanks again. megan


Everybody!!!!!!!!

Please, PAY ATTENTION to the following post by Sandie. It is not personally for me (Anna). It is for EVERYBODY:

____________________ Hi Anna,

It is so lovely to see that at last you are feeling better. Since I got Labs/VN last April I have been careful with my diet and eat much better than I used to. I do not add any salt at all to food, have cut out most sugars including chocolate and do not eat ready meals very often. Before I caught the virus that causes Labs I was eating loads of sweet things and ready meals were commonplace for me. Now I eat loads of fruit and vegetables and only occassional treats. I am at quite a good stage with this illness, I got back to work after six months and have had a couple of setbacks since then (19 months for me in all), but most days I am pretty good. I honestly believe that I ended up like this because of the diet I was eating at the time and also on the other hand believe that I am a lot better because of my radical change in diet.

I am not saying I am fully recovered, but I'm getting there!

Everyone on this planet who does not have a diet with plenty of fruit and veg included IS putting their health at serious risk because there is far too much salt and sugar added to everything you buy. You have to be very vigilant and read all labels carefully because they also try and disguise it under different names.

Hope you keep on improving and improving Anna, good luck xx

Sandie

_______________________

Thank you Sandie! Your post is such a great support!

And I am doing BETTER. I have a LOT MORE ENERGY!!! I am out of barbiturates, caffeine tablets and almost out of SSRI (Paxil).

It will be a long process, but I can ALREADY see the RESULTS of RIGHT EATING even on my 35 th year of dealing with dizziness, vertigo, headaches, blurred vision, anxiety, phonophobia (sound sensitivity) etc.

I am very emotional while writing this post. So forgive my misspellings...

Hugs to everybody.

Anna


hey folks, i feel like i am getting worse. nauseated all the time. sometimes the dizziness accompanies it and sometimes not so much. why am i getting worse? i am scared. is anyone else nauseated and were you able to get relief? megan


Hi all,

I am from Ireland. I am about 3 weeks with viral Lab. I have to say it has pannicked me a little because of the dizziness and nausea and I have not been able to concentrate too good on anything else. I went to a doctor that told me it was just an inner ear infection and gave me serc for the vertigo and antibiotics for the infection. However when I wasn't getting any better I went back to see my own doc who thoroughly checked me over and said it was viral Lab. I just found out my wife is pregnant with our first child and I want to be all excited but i can't until I sort this thing out. I feel okay when sitting at home most of the time but when I get up and go out driving or like yesterday doing the shopping I got so dizzy with everything seeming so fuzzy. I thought I was going to pass out. I am trying to rest up to help it go away. How long can this last? Anyone know?

Des


Thanks Anna, it's so nice to be able to support you as you have supported so many people for god knows how long!

As I said in my post I do believe that diet has a lot to do with it. I was quite ill for nearly six months in the beginning, but perservered with the healthy diet routine (before this illnes I did not eat a single piece of fruit!), and I think it has paid off. Even though I am still not at 100%, I can work three days a week and on my days off I can do anything I want to do (shopping etc). I do 5/6 mile walks a couple of times a week! I do everything I used to do and even if I am not feeling my best I still do it.

This illness has changed me and made me see that you cannot mess around with your health and you really do have to take care of yourself. I was always too busy to do that but now its all organic food and vitamins and exercise!

Megan, yes nausea is a part of this illness and I did suffer from that along with the dizziness. It will pass.

Des, resting up is not the way to deal with this illness. Keeping active is the best thing to do as it helps your brain to compensate faster. When your inner ear is damaged it sends faulty signals to the brain and that is why you are dizzy - because the ear is sending signals saying you are moving one way and the brain is thinking you are moving the other way - result - dizziness and balance problems. The brain will eventually compensate for this but it needs to keep getting these signals in order to do that. In other words the more you bring the dizziness on the faster you should recover. VRT exercises do this and you often feel worse while doing them. I always found that walking helped me lots. At first it is very difficult and you must have someone with you as it is very scary but keep at it and you will find it easier as time goes on. Try and move your head and look around you as you do it.

Supermarkets are horrendous at first with this illness as all the noise and people coming towards you really sends you dizzy. This again is best handled in stages. Just go in for a couple of items and build it up over time.

Basically just set yourself little tasks and you will improve but most of all keep positive. You may be one of the lucky ones and get over this in a few weeks, lots of people do, but if you are in it for the long haul ike many of us on this board, keep active, think positive, eat good food, cutting out added salt and sugar, and remember it is not life threatening and you can lead a near normal life!

Take care

Sandie


Meagan, - get OFF the pills and ONTO the diet thing! Check out what Anna and others have to say about it. Check out Joel Fuhrman!! This is NO JOKE! I had this thing with really bad recurrent nausea and vertigo for 20 years. - Since I went on his recommended diet over the last 6 months I am ESSENTIALLY CURED!! ..... what more can I say? At least, check out what he has to say, and please stay away from the shrinks your doctors are trying to pass you onto. They have not a CLUE the harm they do in their ignorance.

Everybody, LISTEN UP! The chance of my abruptly recovering from 20 years of misery being meerly coincidental with the starting of this diet is mathematically close to zip! I'm not saying it will work FOR SURE for you just because it worked for me, but is it not obvious though that you should at least give it a try?

Go for it People, Tom


I was writing a long post but I have lost it. That's a pity.

I am doing BETTER and BETTER being on Dr. Fuhrman's diet even in my BAD situation. But it was horrible in the beginning without caffeine tablets and barbiturates. Violent exercises prescribed by ENT doctors and Balance "specialists" did have not ruined my life.

I cannot still cannot beleive it.... I am a lot calmer recently and when I can think about everything - I WILL let you know what I WILL share with your - DIZZY girls and boys

Yours, Anna


Folks! Read the following VERY attentively, because THAT is the WAY to start changing your eating habits and significantly reduce your DIZZINESS and other horrible things that go hand by hand with dizziness:

http://www.midwestear.com/educatr.htm

Dietary Considerations in the Treatment of Meniere's Disease

The DIZZINESS can be one of ill effects of your sluggish metabolism. In ANY CASE - watch what you EAT and DRINK including ANY medications.

Anna (I am on my 3rd month of Dr. Joel Fuhrman's book recommendations, feeling much BETTER. This is not a joke!)


Hi again all of you,

Just thought I would come and give my halfpenny worth of progress? hehehe

I have been to the vrt therapist and I was told not to bother with the excercises as my condition is not yet settled, I think the damage I have now is pretty much too severe with all the aggro my ears have had to suffer all of these years.

In 1996 when I had a radical mastoid operation I had to have my eardrum rebuilt because of the damage from the infection, If the infection shredded my eardrum then what did it do to the inside of my ear? I have never felt right since then.

Then in 2004 along came the labs, 4 really severe bouts in a year, completely knocked the stuffing out of me and I struggle along as best I can, I am a fair bit better but I daren't go out on my own, What with the drop attacks and being dizzy all of the time I just can,t take the risk.

Regarding the diet thing, One of the consultants I saw a few years back said salt was a thing to reduce, He said, and it makes sense, that salt makes your veins take on more water, this makes the veins swell and if the vein is near to the balance mechanism then this will make dizziness worse from the pressure, logic eh?

I had a saline serum pumped into my veins during a procedure to check something in my eyesight in 1997 and I lost my balance for almost three weeks!

I only take serc now, seems to help a fair bit as well I know if I forget a couple :o)

For all the aggro I have had I know I am quite a bit better than last year, I do as I can and try not to push too much as that seems to make me worse.

I can manage to live with this now, no choice I suppose?

All of you who are suffering try and be patient, This illness takes it's toll but you will feel better just give it some time.

I wish all of you the very best that life has to offer you, good luck in your fight to get well

Mick.


hey folks, just wondering if decongestants helped any of you at all. i don't take them but it seems my right ear which was the better of the two feels so full these last few days. i can't yawn or swallow the pressure out if you know what i mean. i've been following the non-dizzy diet for a couple weeks which really isn't changing anything for me. sorry folks. and regardng medication, i'm scared to take anything. the only thing i do take is that.5mg of klonopin before bed so i don't feel so spacey or spin. do the rest of you folks just sleep, spin, wake up, and try to go back to sleep? i'm not on a bunch of medication. i never took any of the anti-dizzy meds and i still don't take diddly squat during the day. and i move. why lying down is the worst position for me, i don't know. it started that way 6 months ago and it still is tough. my vrt exercises are much tougher these last few days. i was actually doing better several weeks ago. what is going on? is this a setback? or is my right inner ear getting it again? man i hate this!! megan and thanks to all of you who post. while i'm whining i am hoping that each and every one of you gets better or fully recovers.


Hello Meagan Yes I felt exactly like you are describing for a very long time, in my case the day after I lowered my chocolate intake I became literally better overnight. In fact two days agoe I broke down and tried to eat a small 1/2 serving of a solid chocolate bar and 24 hours later I felt like crap. Not nearly as bad as before the good news is it was only for one day and I felt fine after the chocolate went through my system. I never had any drugs except mechlazine when I did have the problem. I highly reccomend this. Hope you feel better Meagan. If it is not your diet maybe you should make sure your neck is not out of alignment I think that was part of my problem as well as the chocolate, and alergies.


Hello Meagan again, I forgot to mention when I asked the doctor why I would bounce back and forth from dizziness to being sick all of the time she said the nauseaness was a lesser degree of the dizziness. Rhonda


DIET in responce to Mick: This Mick's consultant is not a fool!: "Regarding the diet thing, One of the consultants I saw a few years back said salt was a thing to reduce, He said, and it makes sense, that salt makes your veins take on more water, this makes the veins swell and if the vein is near to the balance mechanism then this will make dizziness worse from the pressure, logic eh?" It is logic to some point. Who knows WHY but this ZERO salt added thing DID helped me personally and DID help other people. Worse trying in ANY case (including YOU, Mick!).

Anna


Megan,

Keep track of it Megan... You have probably been having these back and forth good and bad days for the last 6 months now, just havent been able to distinguish. I think now that you notice that the day wasnt as bad, you should start to see the gap widen and see the difference between your good and bad spells. When you have your good or better days, try taking less klonopin...

Sam


hi -- I dont think Dr Fuhrman's goals for a liferstyle change with his recommendations is feasible... I think an adaptation of his diet will probably result. But it doesnt h urt to try it.


Sam, Last night I took 25% less klonopin than i normally do and believe it or not i felt it in the middle of the night and a little throughout the day today (dizzier and more anxiety). and keep in mind, i'm on a very, very low dose. it's hard to tell if it's withdrawal or just the inner ear not being as sedated. probably both but i am going to do the same thing again tonight. i'll do it for 4-5 days and then decrease the dosage again. this stuff is dangerous if you just stop or reduce the dose too dramatically. i just want to deal with this without meds so i know exactly what i'm left with. i am watching my salt intake as well. thank you for your support. megan


http://www.saltmatters.org/

Hi again everyone, I continue to be inspired by a NO SALT diet - it's more than NO ADDED salt - as the salt content in processed foods is extremely HIGH. The web page above is produced here in Australia by a remarkable elderly physician Dr Trevor Beard. I met him a few weeks ago at a presentation on salt - he knew all about dizziness and labs and Meniere's and although he is about 90 - still on the lecture circuit and pushing the virtues of NO SALT.

PLEASE - don't just complain about your illness . . . TRY to make a change - even just a few days - to observe your reaction to a NO SALT regime. Of course a lot of your problems might be inner-ear or other nerve damage - but for those who can find no obvious cause - please consider a change in diet.

Yes- we all need ~some~ salt but the amount in our processed foods is MORE than adequate, as the web page will explain. "Check the label and choose only low salt foods with sodium no more than120 mg/100g".

A few days with ZERO salt could make ALL the differecne - IT DID FOR ME! :)

Good Health to you all.

Emms. (Sydney, Australia)


p.s. http://www.saltmatters.org/

Also has a list of salt substitutes and where to purchase.

Emms. (Sydney, Australia)


Hello All,

I have been reading since June when I first came down with LABS I posted a few times back in August & September.Kept reading a lot and now choosing to post again.I want to THANK YOU ALL for sharing your experiences and your knowledge it has supported me a lot.

Richard THANK YOU for this site.

I shared my story way back I did VRT every day for 8 weeks supported me a lot.Doctors told me to STOP for now for I had other things coming up pins,needles,down left side arms & legs and tons of back pain neck pain. Went to 2 Neurologists who felt I had M.S.Both my brain MRI's 3 months apart came back normal (what is normal?)I am grateful I do not have M.S. One of the Neurologists put me on Neurontin (600 Mg. before bed) told it is a very low dose.It was to stop the pins & needles the next morning the room stopped spinning and so did I.I asked if this med could have stopped my dizzies some say yes, some say no, my general MD said it may have just gone away on it's own or it could be the meds.

I am 43 years old never have been on meds & do not believe in a lot of them BUT WOW waking up feeling more like ME again is a GREAT FEELING.If I have a choice to STAY ON Nerontin with no long term problems and not go back to DIZZY LAND I WILL.

Any of you have any suggestions,feedback,advice,support? Anything will be very much appreciated.

Has anyone on here ever taken this medicine? If so what for? How long can you stay on it? Is there long term problems with it?

If it is the meds controlling the labs I want to stay on it. I FEAR going back to DIZZY LAND.I also do not want to create other problems for myself.

Today is a good day & I am grateful.I am driving locally again & working partime.(This is HUGE) from what I was doing between June & November.

To ALL of you on here & out there I wish you ALL better days ahead.I wish you less & less Dizzies each & everyday.

Thanks again for being here.

Lisa ( I live in New York)


Hello everyone. i am 29 years old, and about 3 months ago i was watching television and turned to grab the remote when all of a sudden a VERY strange feeling came over me. got very light headed, my palms and bottom of my feet had weird tingling. sort of like spikes were in them. i will never forget that evening for as long as i live. the things that were going through my head when i TRIED to sleep it off were unbelievable! The next couple of days i really thought i was losing my mind. Finnaly went to a doctor, she said i was not losing my mind but thought it was in my ears. Sent me to another doctor who said it was Labyinthitus, or however you spell it. after the first month went by and i was still not myself, i went to 3 different doctors. 2 ENTs who had no idea what was going on? Passed every test. the last doctor knew what it was because her husband had suffered from it. I dont have the "dizziness" symptoms that bad anymore just dont seem like myself still. Its going on 3 months now and as i have read from you guys i see this is a long process. Does anyone else have symptoms like mine? "cloudy headed" cotton balls filled in your head" "do not see yourself in the mirror as you used to" ?Since i was finally told what was going on, i can cope with it, or at least try my hardest. This stuff (Laby), is unbelievable. My only concern is that the room does not spin to me, likethe majority of you say, It's just as if there is a lot of cotton balls in my head and it cant get clear.Any suggestions??? Its pretty weird over here. Thank you all and i will say a prayer for all of you.


Robert,

Room doesnt have to spin... I never had the vertigo... Many people here havent either.. Everyone is different....


Hi All

Just a bit about me; first time I'd ever heard of labs. was when I was diagnosed in May 2005 about 3 weeks or so after having a cold; floor sort of moving, dizzy, vision problem and nausea. Doc gave me serc, took a couple of days off and after about 3 weeks felt better-ish, but had a vertigo attack one evening during which I was very sick. Got better and was fine. Almost one year to the day in May 2006, I woke in the night with violent spinning, had to crawl on hands and knees, was so sick and ended up on floor sort of "convulsing". Anyhow, doc gave me anti-sickness pills, said it would pass and I felt able to get around for about 4 days then woke on 5th morning completely dizzy with nausea and spent the next 9 days unable to leave the house, only able to wobble to the loo (which was quite often as had diahorea!), doc took a blood test when I phoned to say I wasn't getting better, it came back negative and when I called again as I was worried, he didn't really want to know. Tutted me and said it wasn't life threatening, see how it goes! If only he could live with it just for ONE hour.....I spent the next 4 months or so with ALL of the symptoms that everyone else gets, headfog, pulsing sensations through the head, off-vision, nausea, disconnected from the world, fatigue, anxiety......the list goes on.

Not to bore you all, my questions(I have SO many!) are 1) does anyone have a theory on why someone can get it when they have had NO preceeding illness at all? I had been living quite a healthy lifestyle and exercised alot, although I had had a stressful time leading up to it. 2) I have my first head cold since "IT". I have been feeling alot better in the last 6 - 8 weeks and I am terrified that the virus is going to inflame my inner ear again and set the whole hideous process off again - does it mean that ALL colds will cause you to be struck down?

Thinking of you all.


Hi, everybody

Emms - I am happy to hear, that zero salt diet made you better. ZERO salt added diet has been returning me to life for the past twoand a half months. I have been literally DYING from dizziness, migraines and I have lost my great job. I printed out some of suggestions from Dr. Beard website - especially how to read GROCERY LABELS regarding SODIUM. Intentionally or not but they HIDE real SODIUM content.

Everybody - ZERO SALT added diet is worse trying for even a HEALTHY person. According to the latest scientific data a person needs ONLY 500 mg of sodium (Na plus ions) per day for normal function. Every excess of Na plus ions gives a lot of accumulating in body tissuies, retain water and result in little or large SWELLING in many organs including INNER EARS. That is why we can become dizzy. I am continuing my resurch on SALT and other bad things: refined SUGARS (not from fruits!!!) and CAFFEINE.

Hugs, Anna


Hello To Robert For me in the begining I had vertigo then it slowly lessened to the exact feeling you are describing I am not sure which is worse the actual vertigo or the presure feeling of "Cotton" To Paula I do not think you have to be effected by an infection, I think I had narrowed mine down to a particular plant in our yard (allergies),I also discovered my neck was out of alignment (to the left)and also diet. But as always every one is differnt. Hope you both feel better sooner than later. Rhonda


hi folks, just a couple comments. i had no cold nor anything before this crap abruptly set in. all overnight-from feeling great to vertigo. so i don't know what got me. also with all the latest talk of meds, i just thought i'd let you all know how my experience with reducing my .5mg nightly dose of klonopin is going. well i reduced my dose by 25%. the funny thing is my anxiety level is none since decreasing the dose and this is an anti-anxiety med. many drugs have a paradoxical effect which means they cause the very thing they are suppose to be eliminating. i am more dizzy at times though and i paid for it dearly last night by sleeping flat instead of a little elevated. rough day today but still did my exercises. it really sucks not being able to sleep flat and be able to roll or turn my head like i used to. i hope that will get better. hope all of you feel better soon. megan


Paula - I read your story and I have theories aplenty!

I was also told that I had a virus - and knowing now what I know about salt and having researched and read and followed up on other's advice I am STILL dizzy free - and it feels AMAZING! after having had 9 months being dizzy. your episode sounded VERY much like mine.

My theory on why this happened to me was:

a: I'd been on a long haul plane trip. (OZ to London)

b: I had a slight runny nose one day

c: had a high-salt London curry one night (thinking it would clear my nose!)

d: next morning woke up on my hands and knees and unable to stand up because I would vomit and collapse. This is NOT a nice way to spend a holiday OR live life generally.

As Anna has said - the salt in our bodies is balanced and when it gets OVERLOADED it is possible that it is upsetting the delicate fluids in the inner ear (how my doctor described it.) She urged me to lower salt intake and when this didn't work she inisted I try ZERO SALT for a few days at least. She recommended I take magnesium supplement and extra kelp - which balances out iodine (essential to salt metabolising? i think???) (maybe someone else will know more about this?). THAT's all it took.

PLEASE - I urge you all to try it - even after 24 hours you MIGHT notice the difference.

I'm still dizzy free - but I do notice when I have eaten too much salt - if I buy take away food or eat olives, fetta, soy sauce etc... then within a few hours or the next day I get that old "air head" feeling.

good luck everyone. TAKE some ACTION and control your diet and see if it helps.

WHAT HAVE YOU GOT TO LOSE????

DON'T STAY LOCKED IN YOUR MISERY.

TAKE INSPIRATION FROM ALL THE GOOD STORIES HERE.


and MANY THANKS to Richard for hosting these pages. He's a true pioneer!

MERRY Christams and HAPPY holidays to everyone.


Thanks Rhonda - interesting about allergies. I was in the beginning of doing a course learing about nail extensions; wonder if the dust coming off of the filings had anything to do with it? I had to give it up and didn't finish the training as I was too ill to continue with it. ;o(

Anna - how many points of a gram are there in a gram (if you get my drift?!!) i.e if the food contains 0.5g, how many of those make 1.0g? I try not to have salt, but know that it is in my food.

I hope that the lightheaded sort of swoony feelings I have today are just because I am bunged up in the head with a cold. I am decongesting lots, but the feelings in my head are making me anxious - I hate it SO very very much and feel sad.

Hope everyone gets rid of all of this dizziness.


Paula,

.5g is 1/2 of a gram -- so 2 times .5 will be 1 gram. .1 is 1/10th of a gram... and so on

You can add the decimals together...

.5 + .3 = .8 .5 + .5 = 1.0

etc et....


The Rolling Stones postpone a show in the US to allow singer Sir Mick Jagger time to rest his voice...


Sam - good job on math in responce to Paula,s question, I think, that Paula started to think in the RIGHT direction on SALT minimizatin:

.5g is 1/2 of a gram -- so 2 times .5 will be 1 gram. .1 is 1/10th of a gram... and so on

You can add the decimals together...

.5 + .3 = .8 .5 + .5 = 1.0

etc et....

Emms - your post as of December 14, 2006 is an ABSOLUTELY GREATLY DONE research on your particular case. But it can be applied to anybody who think, that some strange particular VIRUS affected their inner ears. Your inner ears can become SWALLEN because your body fluids are messed up with some DISFUNCTION (very times quite mild) of your excretion or other organs. this can make you DIZZY or VERTIGENIOUS. What amazes me, that Emms's female doctor was so PERSISTENT to convince Emms to LISTEN to her. I have been so UNLUCKY with my American doctors (idiots!!!).

Rich, thanks so much for being here for us!

I am doing better and better (slow process) on ZERO SALT ADDED diet. It has been THE TURNING POINT for me three months earlier. Even with my DAMAGED by exercises ears (who knows the extent of my damage....). Even with my horrifying MIGRAINES (headaches - call it whatever....)aggrevated by taking prescription CAFFEINE containing drugs)

Dear friends. When I become LESS EMOTIONAL with my "discovery" on the importance of the RIGHT DIET - I will make a PRESENTATION on my particular case (similar to what Emms did).

Anna - 55 years old 35 years with IT (on and off)


Hello Paula again, I was wondering if possibly yours is a reaction to the nail extension chemicals being in close contact on a regular basis? Just a guess. Rhonda


Hi All

Its been a while since I have posted.

Pretty much 100% all of the time since I have been taking Pitozifen (MAV meds).

All I can say is never give up and find something that works for you- dont just wait around- be proactive.

Dont worry- i thought it would never go and it pretty much has.

Deus


Hi, everybody

Emms - please, if you are reading this post. You are from Australia. But who are you and how old are you, male or female, profession (just in short, if it is not a secret, of course).

Sam (male, I guess) - what about you?

About myself: Anna - Russian born American, PhD in engineering and material Science, I hold 12 Russian and 2 American Patents. I have never taken NUTRITION SCIENCE seriousely (too bad!).

Anna


Hi EMMS....im also from sydney...can you plz tell me your specialists name and location? Even though i dont beleive in them anymore, but it'll be good to know anyway...ciao

ps...my msn incase u want to get in contact...wild12c@hotmail.com

Mac..


Hi all, hope everyone is having some so-called good days. just want to update and inform anyone who is taking prescription medication on my progress. As you know I am weaning off my nightly dose of the anti-anxiety med. I am down to a half of my regular dose (now .25mg). I just want you folks to know that this crap does build up in your system when you take it for 5 or so months-even at such a very low dose and only 1 time a day. The doctors i've seen tell me it should be out of my system every day as Klonopin lasts 8 or so hours and then you have the rest of the day to excrete it. Well as usual, they are dumb. the literature i've read and most importantly my own experience in weaning says differently. So for anybody taking prescription meds especially anti-anxiety or anti-depressants, or anything narcotic be very careful if you plan to wean. i initially decreased my dose by 25% and stayed that way for 5 or so days. the first 2 days were rough and i felt the withdrawal-dizzier, increased anxiety, fullness in my throat, etc. but it seems to fade as the days pass. this is my second day of .25mg (dose decrease another 25%) and i am even more uncomfortable. but i have to get off of this stuff to see what damage it might be masking. women, these meds stay in our systems longer because our bodies contain more fat (which stores the drug) than men. so everyone, wean slowly. and get well all. megan ps just to make it more readily understandable, i am cutting a half of a pill which was my regular dose into 4 pieces.


Hi fellow dizzy people,

Hope evryone is doing well I have been suffering for 6 months of labs. Now it seems to be less and less but i still get that brain fog in the morning. I was wondering if anyone knows what the final stages of labs are like?


Hello Everybody!

I have been reading your posts for quite some time now. I was diagnosed with inner ear dysfunction back in April 2006 with BPPV. Now I am doing much better, getting close to the end, I hope. I may have some issues when the barometric pressure changes. Although I just started to notice because we had a little rain this weekend. There was rain a few weeks ago, but didnt notice a thing. Can it be a coincedence I had symptoms at the same time? My balance is fine, but it I had an hour long moment of a little marshmellow feet. Can my brain compensate for this as well???

I have been doing VRT to increase my VOR gain and it has help alot. I feel okay most of the time, but still not back to my normal self. I used to mt bike and cycle all the time, but not so much now.

Robin, when you were fully recovered, did you still have problems when the pressure changed???

Cathy


Name: Sam Gender: Male Age: 31 Profession: Analyst Location: NYC

Had this problem for the last 18 months... Was doing great, at 100% till a stomach bug knocked me back about 6 weeks ago. Since then, I have been suffering again... To me this seems to be a reoccuring illness.

Sam


OOPS! Sorry forgot to add a few things. I really never had dizziness, only the residual from my BPPV. I had brain fog, poor depth perception, fullness in the ears, BPPV, felt like I was in another world and noise sensitiviy (which comes and goes now). It all started when I had a nasty upper resp. infection in March, I never ever was this sick before. I woke up one sunday morning and i was very off balance. It got better a fews days later, but wasnt 100%. My ENT sent me for an ENG test which made my symptoms worse and my BPPV out of control. My Chiropractor was the only one that could relieve my symptoms, not my PT of ENT. He really was really aggressive with the Epley Man. Once my BPPV was gone, my symptoms just started fading away. Then my Hay Fever came on and blocked my ears to cause my BPPV to come back and like everybody else, I had a set back. Thats when my VOR was out of control. Now I have anxiety, never did before. I wake up with anxiety everyday at 4:30am, sometimes a little earlier or later. Dont know why??? That is the worse. I think I am going to try to get into the docs this week to get something for it. I dont get anxiety during the day, it just happens at that time. Also, my symptoms used to be aggravating around lunch time, last for an hour or two. Now their gone. The only symptoms I have left are the decreased in the VOR, which is almost normal, sometimes at night after I get up from the anxiety and try to go back to bed i feel a little lightheaded when I put my head back down. And occasionally at work I my feel weird for 5 minutes, also ,my wobbly vision is getting better and better. Tinnitus which comes and goes...Currently I am taking a multi-vitamen, garlic pills, grapeseed and grapefruit seed. I believe that it is making a difference.

I do get depressed here and there, but my b-friend always tells me that i will recover. He knows that I havent felt this good since I have had this THING! So I would say that I am beating this thing, but very slowly.

About my last posting with the barometric change...I have been slacking on my VOR exercises so this weekend I went full force, and after I had that wierd hour episode, it also could have been from my exercises, because after I felt better I saw a difference in my gaze stablization. Since pressure changings throughout the day, I never gotton these wierd feelings like this before. Also, it just happened again before I wrote this, but NO rain. I live in SoCal so there isnt really ever much rain.

Anna, Ive been keeping track of your recovery, I am so glad you are feeling better. At the final stages of your recoveries, what was it like...did the symptoms just fade away????? thanks!

Sorry so long. Cathy


Emms - sorry hon! I missed your post completely! Thanks for your comments. I have been embarking on low salt for a while now and although I do find it difficult to keep it really really low, as, like lots of us, I do like the salty food - crisps, olives etc, but I don't use it to cook with, and don't add it to my food anymore. If I do have a recipe to cook, I may use a sprinkle of "low salt". I have also increased my water intake a lot to what it was before.

I suppose I am trying to get to the bottom of my question as to why I was struck twice within one year, although I know that I probably will never know for sure! The salt thing may be the answer, another possibility an allergy to the chemicals, another one suggested is that "the virus" may stay dormant and come back. Why does the inflammation of the ear not go within a week - WHY does it need to last SOOOOO long and cause so much misery!!

I feel almost there now, but still get some anxiety, and have to try to block out the horrible thoughts that keep popping up about how I'd cope if it happens to me for a third time. I feel scared sometimes and then I get a little bit depressed.

Chin up everyone - keep well

P


Sam,

You should start taking vitamens....it does help. It will strengthen your immune system. Do you think maybe you werent quite 100% when you got the stomache bug???? Now, in not really getting bad days, its just sometimes throughout the day I may feel wierd. I still do have some annoying symptoms still here and there. They come and go. Is that a pahse of recovery?? Just like to have some hope.

Cathy


Yes Cathy,

I belivee although I was feeling 100%, I was not recovered. I tend to believe with this thing that even though you aref eeling better, your brain is still adjusting which means that it is easier to knock you back. This one however seems to be a doozy. I am workign on strengthening my immune system, as it seems to be pretty weak.. Especially with this illness, I think the immune system dives.

Paula,

The virus (Whatever type it may be), causes damage to the inner ear. The Inner ear is where 1 part of your balance system lies. When this happens, all you have to rely on is your skin (FEET), and your eyes.... So you are flying blind... You brain is now trying to recover from the damage by fine tuning the signals coming from your left and right ears. Since they are mis-matched, you feel terrible.. you feel miserable. Its not necessarily that the virus is attacking again, but that fine tuning sometimes takes a jolt and loses some of what took time to learn giving you those symptoms again...

Sam


Hello Fellow Labbies,

Happy Holidays!

Cathy, I am still a human barometer. Most of my dizzies are gone, but they still come back now and then. I am recovering from bronchitis now and I was surprised I didn't get more dizzy problems. I got the Labs virus in July 2004, I didn't have a cold or resportory infection that I knew of before it appeared. I am back to exercising, biking and much of the active life I had before I got this illness. I am making real efforts to cut my salt intake, take vitamins, exercise more and I'm trying attitude adjustment to help deal with the anxiety and depression that came with this virus. (also valium or xanax when needed) Although, I am really not sure anymore if the symtoms are Labs or menopause. (many of the symtoms are similar) I live in NJ just outside of NYC. The weather here has been very wet this fall, so allergies have been bad this year. As always, I am struggling to stay positive and feel good.

PS - I try to catch The Stephen Colbert Report before I go to bed, nothing is better than a good laugh at the end of the night.

Robin


Hi, dizzy friends

Megan (who are going to go off anti-depressants) and everybody:

Practical advice from Russian Medicine . It is a well known for centuries GOOD THING for anxiety, nervousness, to calm you down VALERIAN ROOT. It is absolutely safe to anybody. My grandmothers, my mother, and myself have been using it when we are TOO NERVOUS. You can buy Valerian Root in capsules at any drug section. It smells a little funny, but the REAL valerian root smells this way! i know this for sure.

Cathy these symptoms have been not just fading away it has been a very-very slow, gradual recovery from the liver malfunction the main cause of my dizziness and headache, and from the DAMAGE caused by violent VRT exercises . In my case the turning point has been NO SALT added diet it stopped false head movements just almost in two days! It was almost three months ago.

I am still VERY EMOTIONAL, very irritable, roaring sounds in my head, my sleep at night is still very poor. But I am sure, that I am going in the right direction with DIET revolution.

Deus I remember you on this webpage. Good news that you are 100%. Take care of yourself.

Anna Hi, dizzy friends

Megan (who are going to go off anti-depressants) and everybody:

Practical advice from Russian Medicine . It is a well known for centuries GOOD THING for anxiety, nervousness, to calm you down VALERIAN ROOT. It is absolutely safe to anybody. My grandmothers, my mother, and myself have been using it when we are TOO NERVOUS. You can buy Valerian Root in capsules at any drug section. It smells a little funny, but the REAL valerian root smells this way! i know this for sure.

Cathy these symptoms have been not just fading away it has been a very-very slow, gradual recovery from the liver malfunction the main cause of my dizziness and headache, and from the DAMAGE caused by violent VRT exercises . In my case the turning point has been NO SALT added diet it stopped false head movements just almost in two days! It was almost three months ago.

I am still VERY EMOTIONAL, very irritable, roaring sounds in my head, my sleep at night is still very poor. But I am sure, that I am going in the right direction with DIET revolution.

Deus I remember you on this webpage. Good news that you are 100%. Take care of yourself.

Anna


Cathy - One more thing to add to my previous post. I have had several "recoveries" (from 4 bouts of IT) in my life. Now I am going through the fifths bout of IT. This time I am absolutely DETERMINED to get to the very BOTTOM of my problem, or problems. In fact, every time IT DOES fade away with time slowly and gradually with ups and downs... Be ready for ups and downs


Thanks everybody for getting back to me. Its great to have this support. Ive been going through the ups and downs, but my downs are slowly going away. I have had many almost normal days, but with my bad days, are just a short period where I am about 90-95%. Just this weekend I started back up again on my VOR exercises, which brought on some symptoms, but nothing horrible, just annoying. I walk everyday during work and I noticed everything is almost clear (i really should cycle instead during my lunch breaks)....the worst part was my spacey head feeling, which has been gone for a couple of weeks. I know I am improving, what is killing me is my anxiety. My b-friend makes me go to stores with him just to get out. Ive been out couple times last week and even once by myself, I felt very normal that day. I am even going to try to buy some x-mas wrapping paper this week. I do believe now that anxiety makes symptoms worse.

Robin-I am glad you are feeling better. If you recovered once, it WILL happen again. I have family in NJ and they said lately the weather hasnt been to bad. Hope its helping you.

Anna-you WILL recover! I have been reading your posts for months now and you are a very strong woman. So you would say that it is okay to fly. I like to go home and visit everybody someday soon. I miss them.

Also, this experience taught me not to take my life/health for granted. It might have been a hint for me to slow down...and appreciate the world and people around me. I felt like nothing could stop me and I was tackling the world. My mother always asks if there is something the Drs can do, and I always says no. She gets down because she knows i am not the same person, no more riding, yoga, even grooming my english setter. Its not that I cant do it, I can because I feel pretty much okay, just some annoying symptoms...if they would go away, id be 100%. Its just axiety, depression makes me feel like a loser half the time. What kills me the most is not doing anynmore is epic mt bike rides. Again, its not that I dont have the energy, I do, TONS of it, but fear and anxiety...It really makes me MAD! Okay, I feel better, just needed to vent. Hummmm, having x-mas at my sisters house, I think ill bring my mt bike just incase I get that sudden urge. Maybe, it will help me recover faster...duhhh! That's how i need to focus on this, recover, recover, recover!!!!

Thank you again everybody for listening again!

Cathy


Has anyone found any relief for tinnitus and dizziness (feeling of unsteadiness - not vertigo), tiredness, sleepiness and general panic, from a drug called Betahistine ? I have been on this medication given to me by my ENT, and after 4 days no relief except for stomach upset and headache......

ejanina


Robin,

Did you have ups and downs to, like Anna?? Also, when you recovered from your first bout, were you still a human barometer???? What % to you think you are at now??? Sorry, just have alot of questions. We will all make it through this! Being active does help alot, it makes me feel better!

Sam you'll get back to 100%, I was almost there in August, til my Hay fever clogged my ears. But since then I have made a HUGE improvement, better then before!

Cathy


Cathy,

Anxiety & Depression are part of this illness. The inner ear has quite a bit to do with anxiety, so its not surprising that it would cause such symptoms.

Try excercise for about 20 minutes a day. I am not talking about a nice walk... I am talking about heart pumping cardio.... The Bike seems to be the least vestibularly challenging. This will dramatically reduce your anxiety and depression... Studies have noted that Excercise has the same benefit of SSRI's......

Sam


Just something about SALT (sodium) which I read on a Russian webpage (in is from a well -respect liberal, free thinking Russian newspaper):

"It looks like a broad campaign recently started in Europe against SALT similar to what have been going against tobacco and cholesterol...."

A short note from Anna: By the way, baking soda (SODIUM bicarbonate) also contains sodium ions (Na plus). I have dropped to eat products with baking soda together with table salt (SODIUM chloride).

I am doing even BETTER - the change in me since October 12, 2006 (just less than three months ago is REMARKABLY NOTICABLE).

Happy coming holidays.

Anna


Anna, another quick question for you. In your other bouts, which you have recovered from, did rain and barometric pressure affect you...I am just wonderng if that part ever goes away. I asked Robin the same thing.

I think maybe it is for me now, but never has been before, can that happen. But, then again I am not to sure if it does affect me. It just started on Saturday and thats when I started continuing with my VOR exercise. Now dizzies, just wierd tingling in my feet and legs, and walking in the dark doesnt feel to well and heavy feet.

I really appreciate this support!! Cathy


Thanks Sam! I used to run and rollerblade with my setter, but the axiety shot that down. He's my bud and I thinking he is also getting fustrated that I give him less attention. The sad thing is, is that I just got the anxiety at the end of Oct. This morning, it wasnt bad, I woke up feeling great!!!! I slept til 530am...thats remarkable for me. When I cycle, it up and down hills and it is very strenuous. Before this THING, I was training for a race. I was taking the train to work everyday and riding my bike home. I know I can still do it, but last time I was on my bike I was at an intersection and my axniety started...didnt feel to good, but went away later on...Oh yeah...I have been playing tennis on and off!!

Cathy


ejanina, betahistine is also known as serc, I have been taking it for over two and a half years now, I have had no reduction from the tinnitus but If I miss a couple of pills my dizziness is worse.

If you get an upset stomach try to take the medicine with or after a meal, I do this but still get lots of stomach upsets, That is one of the side effects of betahistine.

I tried kalms for the anxiety and they seemed to help me a little, They are at least herbal and not addictive, Don't need em anymore :o)

I find my tinnitus is worse if I am tired or after any loud noises but I have learned cope and I ignore it as much as I can, Try some soft music or something to help cover it a little.

Glad to hear the low salt diet works for quite a few of you folks.

Good luck to all of you dizzies out there.


Robin and Anna,

When you recovered from your bouts, did you drink alcohol afterwards????

Sorry for all these questions, but I have had so many for so long!

Cathy


Cathy - for God sake - DROP these horrible VOR exercises IMMEDIATELY!!!! They can ruin the delicate inner ear structures. They bring you more and more other symptoms - you tell that yourself! It happened TWICE to me - the same tingling, tiredeness, horrible anxiety panic attacks appeared I regreted doing any of these VRT or VOR exercises later! Cathy - everything should go SLOWLY and NATURALLY - NOTHING like SPECIAL EXERCISES. I VERY slowly recovered (but completely 100%!) from VRT exercises that I was suggested by a local ENT jerk in 1995. Later In 1997-2003 I was GREAT, I drank a couple of glasses of wine a week. I went to the gym - aerobic classes twice a week. I flew to many countries overseas on vacation and business trips. I was not sensitive to presuure and weather changes. I was NORMAL.

Every body else - I will read other posts later - tomorrow. I just want to stop CATHY from doing crazy things. Cathy - do you HEAR ME???? One of my very talkative Russian aquatances told me recently (he is a top neurologist in Israel now), that very many of his dizzy and headachs patients got horribly worse from even small SPECIAL EXERCISES. The truth is - they have NO idea WHY people are dizzy....

Anna


Hi everyone!

Cathy - I understand what you mean about being really active, then not feeling able to continue when you feel better. I have forced myself back into some of my activities as in dark moments, when I'm anxious and scared about becoming uncontrollably dizzy, I retreat back and sit at home as, if I am honest, I know that a bit of my "sparkle" about life has been taken from me since this. I'm going to keep working at it though - not ALL of my sparkle is gone, and I'm sure as hell gonna try to get the rest of it back! ;o)

Anna - I felt good yesterday, but after a meal last night which I know must have been high in salt (southern fried chicken with a crumb-type coating on it, garlic bread!!) I don't feel so good in the "head" area today and am having a few slight symptoms - how annoying. Will keep trying to keep salt intake to an absolute minimum and see how it goes. Do you think that having lots of water today will help "flush" it through and the symptoms pass??

I am taking herbal meds to try and lessen my anxiety, as when I went to my doctor a few months back to try and say that I felt I wasn't coping very well with anxiety and that I felt I needed help, I got really upset, started crying, couldn't get out what everything I really wanted to say and after being asked if I was a general "worry-guts" ended up being brushed off with a phone number of a axiety therapist that I would have to pay for, if I had money to do so.

Wishing you all a very happy holiday - and TO A COMPLETE RECOVERY IN THE NEW YEAR!

P


Thanks Anna, I hear you loud and clear! I will just let this thing go away on its own...I feel like I am getting closer...My anxiety is the worst of it now. I do not want to hurt my poor inner ear anymore then it is.

I am with you Paula on a COMPLETE RECOVERY IN THE NEW YEAR!!!

Cathy


Hello Cathy I was reading yours and Annas post sorry you have to put up with this thing. I am 99.9% better after dealing with this for 3 years. I am still affected by the barameter changes and dont drink alcohol! Even if I have a quarter of a glass after 3 months of having no symptoms I can feel my head (ears) wanting to turn. I think it is the sugar. I followed Annas advice on Salt and for me I think the no extra sugar and no extra salt is what made the differnce. I got the same effect from having 1 ounce of see's candies and had motion sickness the next day for 4 hours in the morning. Rhonda


Hi Rhonda,

3 years! How can anybody take it for so long! Overall I am feeling much better...my down days arent so bad..yesterday when i woke up I felt great, but when I woke up this morning, I felt not so good...but after couple hours of moving around I feel good again. I am determined to fight this thing to the very end...It drives me crazy, but I dont see why nobody cant recover to 100%...we are all different and we need to do different things to make it happen...


Deus - he mentioned Pitozifen for MAV (Migraine Associated Vertigo) as something that helped his full recovery (knock, knock on wood). I want to look up for this drug on the Internet

Ejanina - Betahistine (Serc) , as Mick Gossling said, really helped some people with dizziness because of its anti-allergic properties. I saw such people on the Internet. Betahisitine (Serc) did not help me personally, but our problems can be DIFFERENT. It is worse trying, if no adverse reaction is noticed, or if you manage to diminish such reactions somehow (by taking Serc with food, or after meals).

It is KNOWN that allergy (in fact allergy – is SWELLING of mucous membranes particularly in the nose, eyes, throat and ears (including inner ears). The latter (inner ear swelling) RESULTS in dizziness or vertigo, or call it whatever. It is also KNOWN, that allergy may be caused by certain types of foods or air born pollutants. In any case – those tissues SWELLING can be significantly reduced by making them SWELL LESS! How? Reduce your SALT (SODIUM) intake and drink more WATER or decaf. tea! It is absolutely scientifically proven, that such a regimen is FRIENDLY FOR LIVER and KIDNEYS and for our poor swelled INNER EARS. At any rate – reduction in salt and sodium intake and drinking more WATER, or GREEN DECAF., or HERBAL TEA throughout a day will be beneficial not only for your inner ears but it will also improve your general health. Besides – eat loads and loads of fresh, or at least frozen and thawed fruits and vegetables of different types – VITAMINS!!! I have been on such regimen for only less than 3 months – I cannot believe in the progress I have achieved. My dear husband and mama are already happy for me. They still cannot get the WHOLE PICTURE of my “miracle” recovery….. (I have been in the horrible situation starting from March 2004, I lost my job to this condition, I am still on disability). I have way to go – but I am going in the RIGHT DIRECTION.

Hugs and best wishes to your families (they have to deal with us- dizzy, nervous, terrified people)

Anna


Anna, that is so great that you are on the way to recovery! What a nice Christmas gift for you and your family. After this is over with you, I think you should write a book on your experience, it would help alot of people. Thanks for your advice with the exercises!

Everyone, if i dont post from now to Christmas, have a great Holiday and lets enjoy our time with our families. We need them!

Chad-how have you've been feeling?? I think if you stop drinking you will see a huge difference...I was told by my doc that alcohol will prolong the illness and can make you inner ear worse...its toxic to it.....I think when you recovery chad, I would probably give alcohol a rest....I have always been told that u have one body and you need to take the best care of it.

Cathy


Anna, Cathy, Rhonda, Rich and everyone else....

have a happy and healthy holiday hopefully 2007 will be a better year for all of us and we'll over come this battle.

i'm still living with it some days are good some days are worse, still tryin the low salt diet and i'd say im at a 60%, hopefully will be at 99% some day soon :)

hugs farah


Cathy – maybe I will right some kind of a book on my particular case (or in general – about my thoughts on dizziness, vertigo and headaches) when I recover completely. Definitely I will let know Dr. Joel Fuhrman from NJ, that his website and book Eat to Live brought my life back to me. Now I am trying NOT to push myself too hard…..

Chad (and other guys, who like to go to bars with pals eevry other day) - ALCOHOL IS AND ENEMY FOR YOUR INNER EARS.... If you eat SALTY nuts with your drinks - it is TWICE AS BAD....

I have a very funny and unusual suggestion for a holiday (New Year) gift FOR HIM. Gentlemen - you can present such a gift for yourselves. Attitude apron!!! Humorous, funny and practical, and the FIRST STEP TO RECOVERY of your INNER EARS and FOR DIZZY FREE life. Look up at the website and order one of those attitude aprons.

http://www.allheartchefs.com/aaapronstux.html

For example, I have just ordered a “tuxedo-chief” apron with delivery for my unmarried college son and for my married son-in-law (married to my daughter, no kids yet). My son and my son-in-law cook for themselves more or less regularly. I know for sure (and I am quite an attractive middle-age lady, he-he-he), and I have heard from many-many girls and women) that MEN of ANY AGE look absolutely CUTE, SEXY and IRRESISTABLE when they cook SOMETHING even unusual wearing an apron (especially, a humorous one!) Well, just a suggestion……

Happy holidays,

Anna


Hi All,

I have been lucky enough to have found this site back in July. I was diagnosed with LABS back in June.With lots of fear,anxiety,depression,spinning,dizziness,etc. This place has been very comforting,reassuring and a gift to me.THANK YOU ALL who choose to share,coach,teach & support me. You ALL give so much by being on here.

I wish you all GOOD HOLIDAYS and most of all a healthy and less dizzy 2007.

Anna,I am so very happy for you. I have been following your story,support,teaching, coaching & knowledge since July and I am thrilled for you that you are experiencing better times for yourself.I hope things get better & better for you with each new day.

I wish all of you on here better days.

Thanks again, Lisa (from New York)


Hello Anna and fellow Labs sufferers. THANK YOU for continuing to post to this website. I actually discovered this site a couple of months ago, after suffering with dizziness, an "out of body" feeling, double vision and headaches for two years now (sudden onset in January of 2005). When I first found this site, I confess I burst into tears and just wanted to die. Instead of being relieved to find so many others like me, it made me feel like the whole situation was so hopeless. I'm now back after once again meeting my $2,500 insurance deductible in a quest for answers. It's so very tiresome to get "normal" result after "normal" result...I could really identify with Chad's frustration from several posts ago.

I'm sure the answer is somewhere in the pages and pages of this site, but I'm curious as to whether anyone else experiences drastic aggravation of symptoms brought on by changes in barometric pressure. I am like a human barometer: when the pressure drops, I instantly feel as if someone yanked my batteries out, with the addition of dizziness, the out of body feeling, and sometimes very strong headaches. Has anyone found a way to mitigate this?

I am getting ready to try a strict diet in January (after the holidays, of course) that incorporates much of what Anna and Tom learned. I'll keep you all posted.

Happy holidays to everyone. May 2007 bring us all some answers.


hello Farah glad to hear you are doing well it is a great relief more than anything when it does happen. How are Meagan, Mitch, and Emms doing? Happy Holidays


hello, fellow dizzy people I have had chronic vertigo for years which i attributed to water retention as I am very salt sensitive. I have had to decrease salt intake and increase water consumption. Water is the best liquid to consume, not sodas, juices, and especially not alcohol. I became very depressed and apathetic with this condition as well as other physical diagnosis that have cropped up as my age advances. I have been on SSRI medications, specifically Zoloft for depression. After several months, I noticed my vertigo worsening. It seemed to be as bad as when I first experienced this condition. I investigated the drug Zoloft on the internet and discovered that one of the side effects included balance problems. Since I stopped the medication, my balance has improved and I feel pretty good, although I still have a residual feeling of lightheadedness. The problem took several weeks to resolve, which destroyed my quality of life for awhile. Anxiety and apathy has returned. With a new medication and psychological counselling, I hope this will ease my ability to cope with this condition. I've had additional problems with hypothyroidism and is presently being treated with medications. This in itself adds to feelings of fatigue swinging with extreme jitters as we attempt to reach the proper dose of thyroid medication. Hopefully I see the light. I have to continue with control of water retention as this seems a large factor in my vertigo. Reading about the experiences that other folks have gone through have helped with my coping. I also read the letters of people struggling with hypothyroidism. Such is life.


Hi Julia and all, i thouught i'd post since you asked about me as well as a couple others. i'm hanging in there. i've almost decided to stop vrt. some of it did work in the beginning but sometimes now it just makes me feel like crap-dizzier, more nauseated, etc. and they say do it even on your bad days. yeah, why don't YOU do the vrt on YOUR bad days!!! like any other disease or disorder, we cannot understand until we have it and then of course we will experience it differently based on our personalities and life. yes, i get angry but i am not a victim as there are so many horrible things going on world-so much suffering that i cannot imagine. lying down is my worst position and always has been. so i have not really slept in almost 7 months. i sleep on 2 pillows to elevate my head. i can roll slowly to one side for awhile and then back to the middle, stay there for awhile and then roll slowly toward the other side. i am aware of my every move while trying to sleep. i used to be able to sleep on 1 pillow but if i do that now when i roll over i can only stay there a couple minutes as i start to feel weird and have all these autonomic sensations. i am sure it is the fact that when i am on my side on one pillow my head is flexed more into the side bnding position and my brain has not accommodated that yet. why i had a setback, i don't know. i am still taking my.25mg of anti-anxiety med in the evening. after Christmas i will reduce again. i wanted to feel as best i could while we were visting relatives out of town. but anyway, i just feel i need to go at my own pace with my own vrt. when i am up and moving i pretty much put my head in any position except i don't look way, way up. but when i lie down turning my head from side to side makes me sick and dizzy. blood pressure is fine up or down so it's not that-just no compensation. but i will work on it. have had it with doctors. we have spent thousands since june and no answers. i'm done. i hope all of your folks have a wonderful Christmas, Hannukah, or whatever. take care, megan


This site is wonderful...I am so glad I found it. I have been suffering from vestibular neuritis for over 4 months...I have been doing VRT's for a couple months, and have noticed things have improved. Actually, what seems to be remaining are eye issues. Stores make me much worse, head fog/dizzy...

When I started I was much worse. However, since many of my symptoms have improved...my visual symptoms...I notice more. I am not sure if they are worse..or since they are my main issue..if they just seem that way. Can anyone relate?


Ive been reading up about Lab for ages now and this is the first time ive found this site. Its so moving to read about other people in this horrible reality of lab suffering. I have had balance problems for 5 months now. For the first couple of months i had bad vertigo and balance problems.

Now i just seem to feeling nausius most the time and suffer bad nightmares and a wraped reality when i shut my eyes at night...

Anyone else finding this?

I havent seen a specialist yet im still just taking a Stemetil every morning to help me through the day. Since ive had this i havent taken a day off work which im proud about but now the depression of the condition combined with working a job on my feet all day is seriously getting me down!

Hope everyone finds their old selves as soon as possible...


Hi James

Sorry to hear you have been suffering like this. As we all know on this board it is an awful illness to deal with.

You have done so well working through this especially saying as you are on your feet all day long. I too have a job where I stand all day and it gets to me at times. I did initially take 5 months off work when I was first ill, so you are right to be proud of yourself.

What concerns me with you James is that you are still taking Stemetil. This drug is fine when you are first ill to cope with the initial onset of vertigo, unsteadiness and sickness/dizziness but you really should be off them by now. What they do is dull the brain and to recover from this illness it is essential that your brain is allowed to experience all the dodgy signals from the ears and get used to them. Stemetil and anything like it will not allow your brain to fully compensate for the damage caused to the inner ear. Try and wean yourself off them, I was on them for less than a month at first and then stopped but I have had a couple of relapses when I have taken them again for a week or so. All in all I have probably only taken them for about 5 weeks over the last 19 months. They did help me and I know what it is like to try and do without them. I felt like I needed them for work so I would just take a half a one before work each day which equalled 1 and a half a week as I work three days but I just didn't want to let go! So even gradually reducing them til you get off them completely will help enourmously.

Just to update for everyone, I am at 19 months with this illness now. The first 5 months were real bad and I was unable to work. After that I got back to work then had a relapse in Feb, off work for 5 weeks again and then a relapse in October, off work for 2 weeks. Since October I have had two head colds and no onset of symptoms and at present I have another cold and my asthma has been bad the last couple of days and no onset of symptoms!!! I am pretty much back to normal, some days I feel a little wobbly but that is geting less and less and I haven't had dizziness for a good while now. A few times a week I feel as if the ground has moved but it only lasts a second.

Overall I pretty much have my life back to normal and can do everything I did before. I have only ever taken the stemetil for about 5 weeks in all and have taken no other drugs, no anti depressents etc even though I suffered from terrible anxiety. I tried to keep positive, took more exercise i.e. walking and walking and walking, (did very little VRT) and changed my diet considerably, also taking vitamins etc. Changing my diet involved more fruit and veg, cutting out sugar (though I can still be naughty!), and cutting out added salt.

I can still sometimes be noise sensitive and feel wobbly in situations i.e. crowds etc but it's not so bad. Life does get better and you all have to stick in there, and play the waiting game!

I hope you all had a lovely christmas xx

Sandie


Hi, everyone -

I have been reading all the posts.

I have been playing this WAITING game "take one day at a time" and WALKING, WALKING, WALKING (no VRT exercises!). And DIET!!!! - NO TABLE SALT added, NO caffeine, NO refined sugar, lots and lots of fruits and vegetables, whole grains, beans and lentils.

Slowly but surely I have been doing better and better, more energy, more walking.

Sandie and EVERYBODY- (look everybody at Sandie's post as of December 26!!!!) Sandie - who told you to do EVERYTHING you have been doing so far? Some kind of a great doctor? Or did you come to such great regimen on your own? It is amazing....

Anna - stupid (obviousely!) PhD


Hi Sandie,

Thanks for your reply, hope you had a balance problem free christmas.

I know i must get off the Stemetil as im sure daily use for 5 months is doing nothing but bad things to my body. Its quite scary the idea of stopping the thing you have a mental connection with as feeling better. But i shall try starting tomorrow!

I dont think me worrying about an attack at work helps at all, think i need to do some calming techniques as well to break free of taking the stemetil...


Hi all,

I have been feeling better as time goes by - 22 months now - the first 8 months were absolutely terrible but then I very gradually got better. I am still not 100% all the time but I get a day or two a week where I am 95% and the rest of the days are not near as bad as they were. I still have anxiety that comes and goes but that seems to be getting better too.

I decided many months ago, after all the specialists/tests/etc., to completely change my lifestyle. I think that has helped a great deal. Low sodium diet, very low sugar consumption, no junk food, no caffeine or nicotine (I wasn't a smoker anyway), plenty of rest/sleep, vitamins and lipo-flavonoid (which I think makes a difference), relaxation techniques, accupuncture, no flying, VRT and more.

I think it is important to also do stretching exercises throughout every day. Neck, shoulders, back, arms, legs. I found this helped me a great deal and I don't really have a stiff or tight neck anymore most days, which used to be brutal. I think it also helped with the numb face. I also give myself head, neck and ear massages every day. Especially behind the ears and down the side of the neck. And I do jaw exercises too. This really helped me. And I concentrate on good posture (but not as much as I should).

I still have eye strain and weird eyesight issues but most of the dizziness is gone most of the time. The only things left that really bother me are the anxiety and the tinnitus but they come and go. The tinnitus is kind of always there but I am getting used to it and it doesn't really get to me anymore.

The deep breathing exercises help a lot over time. Don't expect results right away but if you start now...

I also take Sudafed (the drowsy kind) when things get bad - that helps me too.

Oh yeah - and plenty, plenty of water every day.

I think doing all of these 'self help' things really add up. It doesn't seem like any one thing

I still check this website out every now and then but I must say it really, really helped me through some bad times - thank you, Rich and everyone.

To anyone who doesn't see light at the end of the tunnel - it is there. This condition takes lots of time and care to get through but it will get better - unfortunately there is no quick fix - just lay low and wait it out and consider trying all or most of the pointers by other posters and myself.

I hope everyone feels better. Merry Christmas and Happy New Year.

Beatle Mark


Hi Anna

Well, I have just had a very hectic christmas. Loads of family at my house ALL christmas day, and another family gathering yesterday because my sister and her family came home. And guess who had to cope with it all! And, I have had a terrible runny nose and asthma problems over the last week or so. But NO balance or dizzy problems. I have felt slightly off today but I think I am just so tired.

Anna, your question as to who helped me live the way I live my life now is not thanks to some great doctor, I have not had any help at all from my ENT apart from a few gaze stability exercises! This was a very frustrating part of the illness - actually getting no help at all from so called professionals! They and my own GPs have never given me any advice as to diet, exercise etc. All they ever wanted to do was hand out the drugs i.e. stemetil and anti depressants. As I stressed in my post I only ever took the stemetil when I desperately needed it (and because at first I thought it was part of the cure), and have never accepted anti depressants. I have always researched fully anything offered so I know how unnecessary these drugs are in the long run.

Also when I fell so ill, I also had gastoentritis at the same time and lost 2 stone in a very short time, I got the shock of my life. I was very scared, I am not afraid to admit, and thought that I had something seriously wrong with me. This fear fuelled my desire to find out everything I could about the illness and the further I researched and realised I wasn't in fact going to die, I decided to change the way I was living i.e. through diet and exercise and lead a more healthy life. My diet was so bad before and I didn't touch fruit and rarely ate vegetables. I also had a huge appetite for sweet stuff. I am not getting any younger (46 last Thursday), and decided I had to do something to turn my life around! And I do feel that it has done that. I don't take sugar (i.e. sweets,cakes, biscuits, ready meals which are full of it). Even yogurts are full of it. I take care and read labels on everything I buy. I am not saying I am a saint because I have a treat now and again but compared with what I used to consume, I was so bad. Also salt, I never use it to add to food, you just don't need it and it is so bad for you in large amounts. If the truth be known, I reckon that most of the population are probably exceeding their daily limits for sugar and salt by quite a bit, I know I was! Also, I must give my husband a lot of credit as far as the sugar is concered. He has sworn for years that if he eats chocolate he will get up feeling dizzy next day. I of course, never believed him! But now I do! He also used to stop breathing through the night for a few seconds and that was so scary and he always blamed it on eating chocolate. When he stopped completely, these attacks stopped and it never happens now. Also we noticed when I stopped eating chocolate, I stopped snoring! I used to snore like a pig! So now if I do succumb, he knows and I get told off! So if eating chocolate makes you snore like that then it is no good for you is it.

So, although not fully recovered, I still have shaky moments, I am a million times better than this time last year.

James, as I said before cut down gradually, and always keep them with you and that will make you feel secure if anything does happen. I have a couple in each of my handbags so I always know they are close by, just in case. And, don't worry about taking funny turns at work. You are with your colleagues and they know what is wrong with you so they will help you if you are feeling bad. A lot of getting over this illness is not to let it beat you, you must fight it and you will win. I used to go out and think 'oh so what if I fall over, someone will pick me up'. You have done so well so far, keep smiling, keep positive!

Take care everyone x

Sandie


Funny you should say the thing about chocolate Sandie... Ive been eating chocolate each day for the last week or so due to the festive diet, and ive had my general unbalance back for a week! Wonder if there's any relation?

Im going to stop eating all the rubbish now as when i was eating salads daily and a home cooked meal in the evening my attacks were pretty much under control for a couple of months and things like big shopping areas didnt bother me... I even went into London for the day, the busiest of busiest places with minor balance complaints.

Your right diet is a major factor!

As of today i have stopped taking that automatic Stemetil of the morning and will carry on this way until i desperately need one. Im pretty sure long term use causes depression too as my outlook on life has hit the rocks recently probably due to the diet and long term use of the pills. We shall see the change in due time i hope though!

Thank you again everyone for this board, everyone supporting everyone is great.


Hello! I live in the UK. Had heart surgery in September, came out of it well, but afterwards had feelings of nausea and dizziness, spaced out and so on - the symptoms well described in previous posts. I thought these were side effects from the post op pills and didn't mention them to my doc until this week, to be told it was probably labs (I'd never heard of it). Doc says no cure but time, but treatment is available to reduce the symptoms. Will see how it goes before taking any more pills!


Hi, everybody

Sandie - thank you for your latest post. I printed it out and showed it to my husband. It was quite convincing to even such a stubborn meat, cheese and salt eater like him (bless his heart). We have been eating normal healthy food for only couple of months and we BOTH can see quite improvements in our bodies. He even became calmer and he does not snore any more - it's for sure. I can see a BIG improvement in my BALANCE with no salt added and no caffeine intake (I was a total physical and emotional wreck just three months ago). OK, guys, less emotions and less agitation are very advisable.... One day at a time... Go to sleep or rest in a dark, quiet room whenever it is possible.

Beatle Mark - you live somewhere in New York City as far as I remember? People like YOU usually take smart decisions.

Brian from UK - after your heart surgery probably you will have to stay some time on certain medications. You cannot stop taking them abruptly. Certainly, good eating habits will BENEFIT you in any case. Consult a GOOD NUTRITIONIST somewhere in the UK. Actually, you can consult Dr. Joel Furhman over the phone - that is at least what he advertise on his webpage. I have not tried consulting Dr.Joel Fuhrman myself - I am way too emotional with my long term dizziness, headaches etc. But even with all my SCEPTISISM - I am absolutely convinced by the FACTS I have learned and I have analyzed from this DOCTOR's book EAT TO LIVE, from his webpage, form the book of Dr. Campbell, PhD - THE CHINA STUDY.

LABS, Mr. DIZZY, Dizzy Monster - call it whatever - be careful every body with IT.

THINK and ANALYZE! Ask questions from your doctors - if you think or (your guts, instinct tell you!), those doctors are jerks - go find other ones. Politely, but firmly...

Happy coming New Year.

Anna from Oklahoma


James

Good news about the stemetil, I am so glad you have decided to get off them. Be prepared for an increase in your dizzines/balance problems as you have been taking these pills for a while and your brain is probably in a permanently 'numb' state. Your brain may have to get used to coping with the dodgy signals from your ears again but this is the only way you are going to fully compensate. Taking pills like this always delays full compensation i.e. your recovery. On the other hand you might be absolutely fine, fingers crossed! Don't forget to keep a couple with you just in case you cannot cope, and don't feel guilty if you do take one or two over the coming weeks, that's not going to harm you, it's the constant taking of them that is delaying your recovery.

Brian, sorry to hear you are suffering with this stupid illness on top of your heart surgery. Your doctor is right, it is a slow recovery process but if you keep your diet good and take gentle exercise you can get through this too.

Anna your are so funny when you talk about your husband but it is good that he is calmer now! Must say that less additives haven't calmed my husband down!

When my daughters were small I had to watch what they were drinking and eating because additives used to send them hyper. Juices which you dilute were a particular problem and also coca cola. Therefore my kids were never allowed fizzy drinks (just as an occasional treat), and I always use organice juices, free from additives.

Well, I wish you all a very Happy and Dizzy Free New Year and hope 2007 is going to be good for you all xx

Sandie


Hello James, Sandie, and Anna I was wondering if James could let us know how you feel after you do not eat chocolate for a while. I have come to the conclusion, in my case that chocolate was the deciding factor that kept my motion sickness/vertigo going on for so long. I also finally to the advice of Beata the flight attendent and found grapefruit tablets(from trader joe's) and I could tell an imediate reaction. I have not been able to test the traveling at hours at a time motion sickness out yet, hovever the ringing in my ears stopped the second day I took one. Meagan I hope you are feeling better. Rhonda


Hi Everyone,

Sandie, been 3 days without pills now and have been able to get through every episode ok, although i had a bad turn last night but just had a couple of beers as was new years eve and this seemed to chill me out, and take away the anxiety which was probably causing the attack in the first place! (which, i think, is the biggest reason for this illness ongoing so long...the anxiety) But heres hoping to a quick recovery pill free.

Rhonda, wish i could tell you how its going without chocolate but someone bought me a box of mars bars for christmas and ive been having a couple a day but doesnt seem to be a problem. To be fair i dont eat chocolate 51 weeks of the year so will keep you posted as from now on as im back to healthy eating after the festive period... salads and fruit here i come.

Hope any balance/dizziness problems didnt ruin anyones new year?


Dear friends with dizziness: IMPORTANT to read, I guess: From http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/dizziness.jsp

“Some medications cause changes in blood pressure or blood flow. These medications can cause dizziness in some people. Prescription medications carry warnings of such side effects, but common drugs, such as caffeine or nicotine, can also cause dizziness. Certain antibiotics can damage the inner ear and cause hearing loss and dizziness. Diet may cause dizziness. The role of diet may be direct, as through alcohol intake. It may be also be indirect, as through arteriosclerosis caused by a high-fat diet. Some people experience a slight dip in blood sugar and mild dizziness if they miss a meal, but this condition is rarely dangerous unless the person is diabetic. Food sensitivities or allergies can also be a cause of dizziness. Chronic conditions, such as heart disease, and serious acute problems, such as seizures and strokes, can cause dizziness. However, such conditions usually exhibit other characteristic symptoms.”

Anna from Oklahoma – 35 years with IT


Well, guys

Everybody's posts just convince me more and more (I have been trying to take THE WHOLE PICTURE from ALL the posts on this site for a couple of years) that all dizzy, vertigenious people have to WATCH CAREFULLY what they eat, or drink, or put in their mouth.

Have this year dizzy-free.

Anna


I have just found a question for me dated December 2006:

"Anna - I felt good yesterday, but after a meal last night which I know must have been high in salt (southern fried chicken with a crumb-type coating on it, garlic bread!!) I don't feel so good in the "head" area today and am having a few slight symptoms - how annoying. Will keep trying to keep salt intake to an absolute minimum and see how it goes. Do you think that having lots of water today will help "flush" it through and the symptoms pass??"

I DO FEEL, that drinking MORE WATER (pure water!) will FLUSH away SALT (sodium, Na plus ions)from your body. Consume as little sodium as possible and drink more water (find sodium-free 0% sodium) in the store, or just drink it from water system, I mean tap water). If you live in UK, USA, or Europe - you should NOT be obsessed by bad micro-organisism. Your tap water is very safe. Better be obsessed by sodium intake - wich is poisonous for your balance (inner ears).

Rich Baker - thanks, thanks, thanks!


Hello, I was diagnosed with labyrinthitis 8 weeks ago and my doctor has just signed me off work for another two weeks. The situation is improving but obviously I am not completely there and as I work on computers she felt it best to see how I feel after another week or so. This is the second attack I have had, the first one was some five or six years ago and only lasted 3 weeks. I am waiting to see the ENT specialist and currently taking Betahistine Hydrochloride which seem to be helping. Anyone else ever taken these and if so did they work for you? Also what is the average length of recovery for this condition, my doctors haven't bee able to give me an answer.

Thanks.


Hi, Dee

Your regular doctor does not know. From my personal experience - check you ears , nose and throat with this ENT person - if everything is OK with those organs - go away from this ENT person. If you are doing fine with betahisitine - it is good. It is quite safe medication. I have heard, that many people were helped by betahistine - Serc. It never helped me personally - but I am a very-very different story.....

Anna (long-term dizzy-sufferer)


Hi Dee,

Sorry to hear you've got labs. Simple answer to how long this condition lasts is... It depends on how fast your body can clear the infection and how long it then takes for your body to compensate from the damage.

I know people who have had an acute attack and cleared up in a matter of weeks then back to normal, but like most the people on here it has been an ongoing problem. I agree with everyone on here that good diet and exercise do wonders over night! also i force myself to do things that cause the attacks as my theory is, if i do them enough my body will get bored of having attacks. Im already seeing more confidence in busy shopping areas etc...

Let me know hoe you get on with the specialist.


Anna Wrote: "Beatle Mark - you live somewhere in New York City as far as I remember? People like YOU usually take smart decisions."

Yes, Anna, I live outside of NYC and commute there everyday for work. Thanks for the vote of confidence in regards to my decision making prowess! I sure hope I am making smart decisions about dealing with this illnes. I am feeling better most of the time now and am so thankful. It's like I am getting my life back but even better than before. I can say with confidence that I will never go back to my old junk food diet and some of my old ways - ever. All I have to do is remember the horrible symptoms and that's all I need to stay on the right path. I'm glad you are feeling better - keep up the good work everyone and always keep the faith.

Beatle Mark


Chocolates are DIFFERENT. It a general name for good and bad things. Milk very sweet and fatty American chocolates are terrible, they are just horrible!!! I have never seen a bar of rather good Mars in Wal Mart supercenter - my husband said, that it is more popular in Europe, than in the USA. Mars is not bad, probably. Bad chocolates are milk chocolates (sweet and very fatty). No wonder that my dear fellows Americans are overweight, dizzy, headachy etc. (sorry for this burstout...).

Love to everybody Anna (born in Russia, live in Oklahoma since 1994, SERIOUS problems with dizziness have begun since 1995)


** This can help you...

Hi. I have been suffering with all the symptoms for 1 year, it all started with a bad cold and a burning ear infection that I did not treat because I was breast feeding my daughter. Anyways I found alot of relief with peroxide in my ears once a day for 5 days. Please read the following URL before trying it, the instructions are here.

http://www.mercola.com/2002/mar/27/hydrogen_peroxide.htm

Hope it can help someone else.. My dizziness went away the next day. Now I am trying to cope with the neck pain and muscle spasms. Take care. Angie


Just wanted to let everyone know that I have had this almost constant for 1 year, I am a healthy 31 year old female, I was a petite 120lb bodybuilder 3 years ago with 11% body fat. I stopped training to have two beautiful babies. My last child was born October 2005. I was never immobile till I got this bad cold and the symptoms started December of 2005. My symptoms progressed till my neck went into a permanent spasm for 2 weeks I was on strong medication, I could not sit or lay down for more than 15 minutes back in September, I was blacking out and had to be brought to the hospital by ambulance, I thought I was having a stroke my face went numb, and I was hyperventilating the room was spinning and flickering like an old fashions movie count down. Once I went to the ER 18 times in 2 months. I may have had about 1 1/2 to 2 months of days in the past year where I actually felt ok, but was still sick and felt dizzy and pressure in my head. I had an attack about 2 months ago and all my symptoms were really bad every day non stop, I spent all of my holidays in bed, dizzy, vomiting, foggy headed, pressure in my face, really bad TMJ, spasms, stiffness and twitching in my neck, back shoulders, night tremors in my spine that was a new symptom 2 months ago, strong sensitivity to noise, chronic fatigue, fainting from the dizziness, anxiety, upper stomach pain (felt like an ulcer), vision disturbances, ear pain, eye pain, facial numbness...the list goes on. My doctor always told me it was a head virus, so I decided to start where the virus started. After putting peroxide drops in my ears (see my post above), the dizziness that I had for 2 months straight went away the next day. I have been dizzy free for 4 days now, I am confident that the peroxide has taken it away. Also my other symptoms are going too! I started running 4 days ago for the first time since being sick, trying to get my temperature up to burn off this virus; I stopped eating sugars, salts, saturated fats, no bread / yeast, just having 4-5 small meals a day. So far my stiff neck and muscle spasms are gone, I feel great, and I only have slight muscle twitching in my neck and back. I have been through this long enough I have decided that this virus does not have me I have it, and I am so done with being sick. I am going to push myself to workout sick or not and will continue on my changed diet, today I feel 85% normal again. I am going to get better so my kids can have a better life. God bless every one who has suffered along with me. Angie


happy new year to all and a better year at that. well i am officially drug free but i tell you what-it was not easy weaning off the klonopin. the weird thing is that after i started to wean, i did experience an increase in my symptoms for a couple days and then i actually started to feel better. the dizziness was less and i was feeling like my old self regarding personality. every stupid doctor (and that's 99% of them out there unfortunately) including a psychiatrist i went to once told me that because i was taking such a low dose and only one time a day that the klonopin would be out of my system daily. NOT SO FOLKS! i guess it took me about 4 weeks to wean off. i allowed myself that much time because bensos are dangerous (xanax, klonopin, valium, attivan). it is now day 5 of being off. like i said, i initially felt better after starting to wean but now i am starting to feel the effects of what the drug was masking. i am not scared though because it is not as bad as it was several months ago. i feel strong mentally and emotionally as i am dealing with this drug free and i know i am going to get through this. i may not ever be normal but i will be able to deal with it. i have changed my lifestyle as i do watch what i put in my mouth. i have been working out a little here and there and kept my heart rate about 130 on purpose. well 2 days ago i decided i was going to get it in the 140's. all was fine until the next day. i paid for it dearly with increased dizziness. i believe the vestibular system has some control over all of the organs in our bodies and that's why we have all the weird symptoms. anyway, for those of you who are on meds just be careful. they do help and they make us feel better but the benzos slow the compensation process. you can only do what you can do like i did. i was on this damn drug for about 6 months and have had this crap for 7 months. stay on them if you need to but wean slowly if you decide to stop. remember the largest employer of drug pushers is not from the streets. best wishes to you all. still dizzy among other things, megan oh p.s. i decided to stop the vrt a couple weeks ago and do it my way. i have felt so much better!!!


Megan, Angie, Bealte Mark, EVERYBODY who are DIZZY etc. Sandie, Beata, Rhonda (powerful women and great observers) James, Tom - canadian artist) - my deep appreciation to all of you

I read your posts carefully. Wow! It is AMAZING and SHOCKING! This horrible so called civilised DIET can make us DIZZY, drugs that doctors so readily prescribe can make us DIZZY. Well, I am doing BETTER step by step (my 86 old smart! mother and 54 year old husband - stubborn but also smart!) with great releif admitted, that my progress is has been quite remarkable (as compared to Thanksgiving 2006 - my worst time of detoxification from my dangerous addiction to painkillers caffeine plus barbiturates). They are so much convinced by the great change in my situation, that my mother started to cook healthy food (!) and my husband started to appreciate the taste of real vegetables without added salt, whole grain no sodium (salt, baking soda) pancakes.

I am still very-very emotional, I get fatigued very easily, I cry easily. But I am on the right way to feeling better. TRUST me...

Angie - my mother has been deaf (for 50 years) on one ear from her 3 operations followed the ear infection in her adolescence (disease of poverty in a poor Russian village). Suprisingly, she has never complained of being DIZZY... I have heard something from her about the peroxide drops. Let me investigate this thing a little more.

Anna (emotional Russian from Oklahoma)


Hi,

Thanks for your responses and good wishes. I will let you know how I get on with the ENT. I seem to be doing OK on the betahistine, however I have noticed that if I am late taking it or forget, (as I have done on two occasions), I have problems. My doctor is not happy with this as she wants me to be able to come off the tablets completely. I had a bad couple of days (4th and 5th) but put that down to too little sleep and trying to do too much. I feel a lot better today and have taken your comments about diet, doing things to make yourself dizzy and the specialist on board. This will certainly help me when I finally get to see him.

Cheers everyone and here's to a better year ahead.

Dee


Hello again, Anna I have a couple of questions for you since you seem to be so knowledgable. Do you think that the effect from chocolate is from the caffine or the cocoa bean. I have accidently tried a no sugar, diabetic chocolate,white chocolate, dark, and milk and it all seems to have the same effect. I also have completely eliminated all forms of caffine and soda I used to drink 7up. And two does peroxide help because it cures the virus or bacteria that is causing the dizziness or does it just stop the dizziness? I am glad to you are feeling better, Meagan. thank you ahead of time Rhonda


Rhonda and Angie -

As for peroxide - it has been known since the beginning of the 20th century that PEROXIDE washes away pus from the outer ear canal. How does pus appaears in the outer ear canal? It appears there only if a person has a MIDDLE ear infection and the a little bit ruptured hearing membrane. If Angie does not have what I explained - Angie, s improved dizziness has probably nothing to do with peroxide drops. Angie started to use peroxide ear drops TOGETHER with DIET things and stopped her medication apparently at the same time.

Rhonda - I have been thinking about chocolates for a long time. I am personally not a chocoholic, so I can live without chocolates of ANY TYPE. I am not a sweet tooth either (have never been since my early childhood. Who knows - maybe - if our bodies know themselves, what is good or bad for us personally. To make you do yourself more resaerch on this theme - use VIKIPEDIA about possible ill effects of raw cocoa beans (UNPROCESSED!). Vikipedia is an excellent source of the MOST MODERN knowledge. I do beleive strongly, that many raw veggies and fruits do not have effects as ILL as them being PROCESSED. Who knows what they put in good natural things during processing?

White sugar is NOT the same as natural sugar in raw fruits.

Anna


Hi everyone

Hope you all had a lovely christmas and new year.

Just an observation over the holiday period. My son has been at home over the festive season and our internet connection has been switched on constantly, also being left on overnight. And guess what, a return of tinnitus and feeling unsteady again. It has been switched off for a couple of days now, and I feel fine again. I don't know if this is coincidence but I have always felt that my ear problems have maybe been caused by - a) living close to pylons and b) having a cordless phone and charger next to my bed for nearly ten years. This added to the way I used to live my life, eating very unhealthy food ALL the time, filling myself full of sugar, led to my downfall with this illness.

All my phones have been switched back to the old fashioned type with a cord and we are moving house next week so we will be away from the pylons!

I sincerely believe that this illness is caused by the amount of radiation etc emitted by all this new technology we have now and also heavily assisted by all the junk we feed ourselves. And, I believe that my recovery has been greatly assisted by moving back to the way we used to live our lives i.e., good food, exercise and keeping away from 'gadgets' such as mobile phones etc. Yes, I do have one but it is very limited use only.

We eat as mcuh organic food as we can get now and supplement with a few vitamins. I am not saying I am an absolute angel and never eat bad things and that I am 100% recovered because I am not but I am so much better.

James - how are you going with the Stemetil? Hope you are still doing well.

Take care

SANDIE


Rich Baker (the owner of this website - you seem to be overloaded with different things including this page. God Bless you for your kindness!

Hey, dizzy people. I am doing a little bit better again - with lots and lots veggies, fruits. Valerian root for NERVOUSNESS which is overwelhming very often. I know, that I am not going to die, on the contrary - I am going to live.... My family is impressed by my "magic", "incredible", "unbeleivable" progress.

Anna ("crazy" Russian lady in Oklahoma)


Sandie and everyone,

Getting on swimmingly (touch wood) with out the Stemetil! I find it easier to control my balance problems and my anxiety has nearly gone. My mental health seems to have improved also. Stemetil ive read is also used to treat schizophrenia so im wondering if being on these pills for 6 months had caused some mental re-wiring or just the effect of the spaced outness of the condition? Im very interested about your point with the electrical radiation, maybe it could be a catalyst...something i havent thought of before, let me know if the lifestyle shift has an effect!

Although im doing 90% ok at the moment we all know not to count our chickens yet, as the next cold or severe pressure change can bring it all back in seconds!

James


hey folks, short and sweet. please respond. do any of you feel like you get better and then you get worse? and then you get better and worse and so on and so on. i have heard that this is typical of vestibular problems but i am so sick of it. every time i get my hopes up by having a decent couple of days in a row, the crappy days come back. by the way both of my inner ears were affected. and how about y'all-both ears or just one? thanks, megan


Hi Anna. I'm not overloaded yet... :)


Hi Megan,

yep, this is the way this stuff goes, up and down, up and down. Your downs will start getting shorter and with less symptoms. And then it continues to get better. The crappy days is when your brain is readjusting and locking in the information from the good days you had, but it is in very small increments. I think if you stay of the meds, your brain with compensate alot faster. It takes time, but dont lose hope. There are people aout there that recovered 100%, but took time to get there. As long as you are seeing improvement that is a great thing!!! Walking during the day and night helped me so much!!!!

Cathy


Hi, everyone

Megan - For me this Dizzy Monster recovery process ALWAYS consists from Good days and Bad days (ups and downs). That is why during my bad days I ALWAYS tell to myself - Anna, patience! - it will be another day tomorrow - It will be BETTER tomorrow, the day after tomorrow... In a long run you have to compare your Good days and BAD days say, one month apart. I found out, that a diary with just short comments on my symptoms

Anna


Hello ,

I wrote a couple of posts a month ago. It's been a year exactly since my labyrinthitis started. The first 3 months were the worst, i was getting better this summer, but in september i had a bad setback for a week and then i felt like i lost all the progess i've made, more bad days then good days... And now for the past 2 weeks it 's not going very well , feel very dizzy all the time , hard to work a full day, there is always that pressure in my head and a do a lot of anxiety because of it , i have problems sleeping , the dizziness keeps waking me and i have to sit in my bed . Seems like it will never get 100 %, I am really desperate about my condition, no neurologist, ENT specialist have given me help, there is not much i can do , i watch what i eat , try to exercice when i can, try to cut stress , but also hard when you always feel like crap and you have difficulty working, i tried ginkgo biloba, all kind of natural products..nothing seems to help really, i feel really frustrated and depressed about all this, it has changed my life so much...for the worst. Sorry to be so negative, but this is the only place where i feel people understand me. I also started to have panic attack in the night, i wake up dizzy suddenly and feel like i cannot breathe , it is very scary and i am afraid to go back to sleep, anyone experience this at night ?

Hope everyone will get much better this year,

Thanks


megan i am having those days...the past few days feel like the old days from hell again...i don't know why though..i enjoyed my winter holidays even with the imblanace i was able to live and have fun...but these past few days just make me want to cry its horrible. i went to school today, took the elevator up to the 8th floor, came out of it and could even balance. i felt like i was bouncing up and down and had to quickly walk to my class and sit down. April will be the 2year mark for me and this monsterous disease and i hate it! as i'm sure the rest of you do...i also keep tellin my self tomorrow will be a better day but sometimes i feel that tomorrow doesn't come...but i guess patience is the key thing...but after 2 years of living with this horrible thing my patience is starting to get the better of me, and i want to be "normal" just like other kids my age :(...

anna - hope ur doing well...u truly inspire me!

xoxo farah


Hello meagan, Yes to everything you said especially the both ears problem, in fact in the begining I think that is part of why we felt even worse after the "manuevers. Even though I feel 99% better I even can fly in constant turbulence again, If I have too much chocolate or alergies, two nights agoe I had vertigo every time I turned around at night after not having a night like that for 4 + months. I felt like crap the next morning but the main differnce is after finding this website I 1) know what the problem is and 2) dont have the fear that it will persist. Try not to dwell on it (Easier said than done) if it got better once it will get better again, even though it is a pain to deel with. Hope this helps, Rhonda


Meagan I forgot to mention the 3)reason It does not bother me so much is that I know if I have to take a mechlazine then I will have almost instant relief from the symptoms, also I recomend the grapefruit (Beatas recomendation) For me I really think it helps whether it is physocological or not I do not care except that it seems to help. Rhonda


thank you all for your posts. i am still scared though thinking that i might be compressing my vestibular artery when i lie down at night and turn my head. i must check into this. today and yesterday have been horrible. i feel so ill. anyone heard of cervical vertigo caused by neck problems (degenerative disc disease, arthritis, stenosis)? i have all that crap in my neck so i was just wondering if this could have caused the ear stuff. thanks again. megan


Farah, Megan, Sandie, James, Rhonda, Cathy -everybody

I am doing a little better - my mother said, that I walk more "vertical". Life seems to be better. Wow. Slowly, but surely. (no - sodium diet at small intervals, vitamins, etc.)

Julie - do not allow a full blown panic attack to carry you away! Full blown panic attacks happened to me several times with this illness. To avoid them you should breath SHALLOW with small portions with as LITTLE oxigen as possible. Breath in a paper bag (more CO2 - your own breath, than oxigen from the air) and to you pleasant surprise this fear and this horrible thought "I am going to die" will pass. It is not just phycological. Too much oxigen in not good with OUR condition and with all our fears (it is many contemporary scientific proofs for this).

Angie - little angel - young athlete - mother of two children - where are you? You are doing absolutely RIGHT with everything, probably except those ear drops... At least, they are not harmful...

Anna (55 year old "scare-crow" - dizziness, headaches due to Meniere's desease and mild head trauma induced by violent VRT exercises)


Farah,

sometimes it is very difficult to distinguish days.... Sometimes the slightest differece can make a day alot better, and although you may think that its probably just easier to deal with, it may in fact be that the dizziness was actually less. Bad Days, good days... they come and go... give it a week and see how you feel.


Hello ,

Thanks Anna for your tips. I was wondering if anybody had experienced ear pain with Lab. I didn't have any pain in my ear the first worst months. My left ear is often blocked and i feel mild pain in the back of my ear lobe from time to time, the dizziness is always with me . But a month ago and last week I had pain in my left ear for about a day or so. I wonder if its an infection or its a part the symptoms of lab, after a year i wonder why my ear starts having pain . i feel it full , warm and swelling when it starts aching, anybody experienced that ear pain after a year ?

Thanks


Doing better in Oklahoma (sodium free diet, no pain-killing drugs, family support - now I can really see HOW they all love me...). AND I am FOLLOWING MY INSTINCTS and I AM LISTENING TO MY BODY.

By the way, I am NOT STRONGER, than any of you - girls and boys... If I have been getting better - why cannot any of YOU do this?

Anna (35 years with IT on and Off).


hi julie, i had panic attacks after i got this crap and i never in my life had them before. i didn't even know why i had trouble breathing, why i was dizzy, and why my throat felt like it was getting tighter. i wasn't even anxious at the time that i felt all this. it came on without any warning. and yes, there were times during the beginning of this that i was dreaming that i had trouble breathing only to wake up and be gasping for breath. i have bits and pieces of the panic attacks now. the most troublesome now is the throat fullness which is worse on the left side as my left ear is worse. i usually get this when i overdo. and it is not really overdoing. my body just won't let me do what i used to do without reacting this way. the breathing difficulty is not so much there anymore but sometimes i feel it lightly. my dizziness was always worse when i was lying down and it still is. i never go to bed without a little anxiety, not from the inner ear, but just the fact that i haven't slept well in over 7 months and i just dread another sleepless night. you can't sleep when you're dizzy. it sucks. so i am feeling your pain. there are times i just want to cry too. i have had 3-4 decent days in a row and now i am going into my bad days. oh well i hope it is just my brain trying to compensate. it's too bad it takes so long. and no, the docs don't know anything or understand. please stay strong. your are doing all of the right things. i guess it's just the way this works. we will all get through this. megan


Hi, I will check on your posts in a month.

Doing a bit stronger every week. Zero sodium diet was the key to me. I am not afraid of anything after dealing with Mr. Dizzy for so long.

Rick Baker - hi, and thanks Hugs - Anna from Oklahoma


Hello Jullie Yes,I felt the exact symptoms you are talking about, no one was ever able to tell me what the cause was.

Anna: I looked into the chocolate it sounds like there is not enough caffine to make a difference and I have not been able to find any negative side effects from cocoa that should cause dizziness. I did discover that theobromine sorry about the spelling has the same effects as caffine and is mistaken for caffine. So far I have not found any answers that I am satisified with yet.Rhonda Has anyone gotton a cold that has not caused the dizziness to come back yet? This is my second cold and I can feel my head wanting to spin but not quite in the evening time.It is only a 1% - 5% of what it used to be but still annoying. Thank you Rhonda


anna, just wondering. what part of oklahoma do you live? i spent much of my childhood there and take care, megan


Hello Megan,Sandie,Anna & everyone else

Just been catching up on the posts. Sorry havent been on since before xmas but needed time to calm myself. I love this site for all the positives but also found that some comments made me more anxious.

Anyway happy new year

Thought I would let you know how I got on with my xmas n ny trip to Tenerife. Yippee, I made it. The flight was approx 4hrs (had a good tail wind). Well I didnt have much going for me but determination on the trip out. The week before xmas came down with the worst cold I have had in 3yrs(the beginning of all this) and also (to the women) it was the start of my period!. Wasnt feeling great, nearly cancelled, I knew everything was worse because of these two things. Fuzzy head, not quite with it but was coping. Was fine on the plane until we hit turbulance about 3 1/2 hrs into flight. Daughter held sick bag (just in case) while I spent the last half hour staring at the same spot like someone demented.(praying for the plane to land) As soon as I got off the plane felt so much better so I know that panic was making me far worse than the problem. After arriving at the hotel it took a couple of days for moving feeling to pass, after that I didnt look back. Felt more relaxed, played table tennis, went on trips and had a great time. Only had propably 2 alcoholic drinks in the whole 2 wks but didnt want to push my luck. Felt very anxious about the plane flight back so the day before I took stemitil. I dont know if I really needed it or not but was fine on the return flight.

Would I do it again, yes in a heartbeat.(just for the sunshine if nothing else)

I am now 6 mths into my rehab excersises and without them I dont think I would have left the house never mind get on a plane!

Yes, each new excersise makes me feel worse but after a few weeks I find I am doing things again without concious effort. I no longer think before moving my head and only occasionally do I now get dizzy. The excersises may not be for everyone but they have helped me, my rehab specialist is also a great listener and keeps me positive without the bullshit.(pardon my french) He helps keep my frustration to a minimum which the husband appreciates (chuckle)

I still have muscle jumping/eye jumping which can make it hard to sleep but not all the time. For me this now happens when I am overdoing it. My energy levels are coming back but still too slowly for me so on good days I do more than I should. I no longer have the migrains/neck pain/fuzzy head every day. I do still feel off when in crowds/ loud noise/supermarkets but at least now I can cope with them.

I feel a bit off today and can feel my neck tensing but I am sure that it has to do with the weather. We are having severe gales today so I have had to rescue the bin rolling round the garden. Have also had a good laugh today, my daughter phoned from work to ask me to keep a lookout for her coat? when she left the house this morning she hung it on her shoulders just to go to the car, a gust of wind took it straight over the garage and fences and into the sky. i'm still chuckling 3 hrs later.

Everyone hang in there (no pun intended) you do get better, it is slow, there are setbacks but always hope. Thanks Anna I do believe that no salt also helps.

Three months ago I thought I would never again do all the things I enjoy but I am resuming them slowly. Have been back to the cinema, shopping and badminton, not every week but i'll get there.

Thinking of you all, remember the glass is half full, there are worse things (really).

Good luck, keep well


Hello Everyone. just thought id share my past 5 months with Labyrinthitus, and ask a couple questions. I'll try to make this short. Im DEFINATELY a lot better now than when this "thing" came over me 5 months ago.No more freak outs in Walmart. constant paranoia of i was about to die. "Id have a litle chest conjestion and think i was having a heart attack, etc.. The cottonball head symptoms seems to be getting clearer, still not 100% but i cant complain from what it was just a short time ago. The symptoms i have are different everyday. Some good some bad, and i have like good half hours and bad half hours. Anyone else experience this? I get 100% feelings of back to normal sometimes but they last only a very short time but enough to remind me that i will be better, and i still know what normal feels like, if only briefly. Does taking Meclizine for a long period of time have negative effects? It seems my heads gotten clearer since i quit taking them. My ENT insists i should have a MRI or Cat scan, whatever its called. But the other doctor that told me she is positive i have labyrinthtus 5 months ago,said i might seem like im going crazy but its in my ears and i will be fine. She doesnt think i should. Doesnt hurt i guess to make sure thats all it is i guess. "as if Laby isnt enough" any suggestions? And one more thing , After about 2 solid weeks of doing good, Work 9-5, hit the gym, HARD ,come home eat, sleep . Start over. I would go out with my friends on the weekend maybe once a month and have some drinks, but whenever i would take the drinking too far, the next week was like starting all over again. So mad at myself for doing it to myself but after a month of stress and worrying from this stuff, I NEEDED a drink, the only reason im telling this is because im trying to say DONT drink too much alcohol. Trial and error, at least for me. any suggestions with the meclizine, cat scan, or any thing else would help. Thank you. Hope you feel better soon.


Hi Cheryl

So nice to see that you had a good hoiday, I am really pleased for you. I know what you mean about pushing your luck with the alcohol. I am slowly having a touch now and again. Had a few on christmas day and felt fine. No return of symptoms. But, I suppose it is better for you not to drink anyway!! It's really great when you start being normal again isn't it? It was tough for me at first not visiting the cinema because I love to go but I am able to go again now and always have my earplugs with me just in case!

I hope you continue to improve and keep the attitude that yes, your glass is always half full!

Rhonda, since having this illness, (I'm at the 21 month mark now) I have had loads of colds, the first three causing major setbacks but each with a shorter recovery time. I have had a couple of colds since November and have been absolutely fine, they don't seem to be affecting me now. I must say though, that I do seem to be more susceptible to catching a cold since I went down with this illness and never seemed to get one before then.

Take care x

Sandie


Just wondering why my last 2 comments and questions on labyrinthitus were not posted?? Can you let me know. thanks. robertcourtneyshannon@hotmail.com


hi everyone, just wanted to share with everyone that Airborne is great stuff buy it and take it three times a day is symptoms are terrible. This is the stuff that took me from feeling almost normal to totally normal. Ingrediants in it are everything you need. Anna glad to hear you are doing better. As for me still doing my grapefruit, veggies fruits staying healthy. I read the book you talked about, was not impressed I read better when I was ill, but sure glad its helping you. This ilness has different strokes for different folks. Keep well


Hi Robert,

I've been a bit busy for the last few days so I haven't had a chance to look at the moderation queue and publish comments. This happens from time to time. However, there was only one earlier unpublished comment by you in the queue. I looked through the last three thousand or so comments in the "spam" queue and you didn't have a second comment in there either.


Hi Everyone,

Hope all is well... I havent taken any Stemetil for 2 weeks now and doing great without it! wonder if thats my brain compensating as have a cold at the moment and no balance problems? I have also gone back to drinking alcohol. For the first 4 months of this illness i couldnt even look at the stuff but now i find it has no effect at all on my condition, which supprises me as so many people here find it aggrivates the symptoms.

Will keep you posted with progress though as everytime you think your getting better, BAM! back to square one!

Take care


hey robert, have a catscan do the mri just to eliminate the very serious stuff. stop taking the meds follow a good diet . I could not drink for about 2 years I now am able to have up to 3 glasses of wine or a couple drinks but that is it.I now went back to one cup of coffee a day and for sweets I do a couple blocks of dark chocolate. exercise a lot helps with anxiety and eat grapefruit. Hope this helps hang in there


Hello Robert, Sandie Sandie thank you for letting me know I have a cold and have only had one bad night and was still nothing compared to the begining. It seemed more like I spent most of the night dreaming that I was dizzy. Robert: I have not had any negative side effects from the meclozine but remember every one has different reactions, glad to hear you are sounding better. Your head might seem more clear from the labrithitits symptoms being supressed from the mechlazine?


Hello Robert Again, Sorry I forgot to mention the some good and some bad days when I was getting over this crap that is exactly how it was, I am begining to believe that as annoying and uncomftorable as it is that is actually a good sign you are begining to recover. Hope this helps Rhonda


Hi I havent posted for a few months. Ive had VL for nearly a year now and I have regularly kept up with all your comments. I went back to work part time (teaching) in Sept after being off for 7 months and its been very up and down. Some days I start to feel a bit better and then I will suddenly feel worse. Im supposed to be going to work today, but ive been up all night as my head keeps pulsating on my pillow and I cant sleep! SO ive just emailed work to say i wont be in (i was also off wed and thurs last week as well). Im sorry to go on about myself, but Im getting so frustrated. Not only have i had to cut my hours in half, my body is still having difficulty. I cant shake the horrible neck symptoms and blocked/ painful ears/ constant tinnitus. I havent had full blown veritgo for a while now and I dont seem to bounce as much when I walk, so there are some positives! Work have been very understanding, but its not good for my students and every time I cant get into work its a bit of a blow for my own moral. I used to be a reliable teacher and now i feel like Im letting everyone down all the time (including myself). I also worry that if things dont get better soon,i may have to consider not working for a while (which isnt really financially viable). Im hoping that you are right Rhonda- Ive noticed good and bad patches for about 5 months now. Im also taking grapefruit seed extract orally. I know it can be used in the ear, but I not sure what the best thing is to mix it with. Has anyone got any ideas? Sorry for the negative vibes, I just needed to vent my feelings with people that I know understand. Sarah


Rich, In NO WAY was my last post asking you about why my comments were not posted in a negative way. I was just worried my computer was not working correctly. Its a twenty year old Mac. Sorry if it sounded rude. I know your super busy. Just wanted to clear that up. It sounded rude when i read it. Thanks for the site. Robert


Sarah,

About Grapefruit Seed Extract. I found it to work way better than any of the other medicines commonly directed toward outer ear infections. It comes in a solution of 2 parts GLYCERINE to 1 part G.S.E. What you do is just mix it with a greater proportion of Glycerine, warm it, and drop it in the ear. With the NutriBiotic brand I think instructions come on a printed page in the box it was bought in. ( I don't think directions for this are given on the actual bottle. )

I used to lay on my side for about 15 minutes with the solution just filling the effected ear nicely. ...... always found it took away the ache after a couple of applications, where as with the uasual drops offered by doctors the condition sometimes would get WORSE.

By the way, I even used Grapefruit Seed Extract to rid myself of a very bad tooth ache a couple of years ago, - even my dentist was impressed as there wasn't a trace of infection left where it was obvious to him there had been a great deal recently! So, I now use G.S.E. as a mouth wash every day as a preventitive.

To everyone: I'm still doing very well on my Grapefruit, fresh Vegetable, Fruit diet. - This after 0ver 20 years of suffering periodic extreme vertigo and perpetual low-level dizziness. I'm not sure if the recovery is irreversible but I'm not going to go back to burgers and shakes in order to find out.

Beata, you referred to a book Anna had recommended and said you weren't impressed. Did you mean Fuhrman's? I find his position pretty air-tight myself. I am pretty surprised if you take exception to anything in there. Please clarify if you can. P.S. thanks for your earlier comments,...I think they helped save my life.

Fond Regards, Tom.


Thanks Tom, I'll give it a go! Feeling a bit depressed today. Symptoms are getting worse and I've also got my period which i know doesnt help. I'm going to see my specialist on Wed, although i know he is doing all he can to help me. He does boost my confidence though. I really want to be rid of this- it plays havoc with your emotions!! I'm hoping to get into work tomorrow. Love to all Sarah x x


I remembered finding this website when I had a grisly reoccurrance of vertigo/spinning/Poseidon Adventure/projectile vomiting in September 2006. Before that was May 2005, the first time. Both times I woke up with it and in both instances I saw the doctor and was diagnosed with viral labyrinthitis. I got the meclizine and nausea meds. Well, at work this afternoon I made an odd discovery. I was turning my head and looking upward at a coworker when I got very dizzy, as though the vertigo was returning. Then I realized that when I scrunch my shoulders up and stick my neck outward the room began to turn on it's side. Same thing if I lower my chin to my chest. Now I'm now wondering if it's really something muscle/nerve related. It would make sense because I'm one of those contorting sleepers and I tend to scrunch my neck and arms all up. Plus, a year before it ever happened I began working out--nautilus equipment, crunches--I wonder if I've done something to myself. Doctors I've seen all latch onto viral labyrinthitis. Maybe it's time for the old CAT scan. I wish I had time now to read all these posts--I'm sure people have unique experiences with this nightmare. Two things I hate most in the world--dizziness and nausea--makes me feel completely defective and like I will never be normal again! People just do NOT understand unless they've had it.


My namw is Donna. I was diagnosed with VL three days ago. I've been in bed since, throwing up and trying not to move my head. Getting to the Doctor was a fete in itself. I threw up in his ofice. How embarrassing! I pride my self on not throwing up for YEARS at a time, but now if I can go three hours, I'm happy. Getting out of bed to go to the bathroom (10 feet from my bed)takes a lot of nerve and a bladder full enough to burst. My husband has to help me walk there. I keep my head tilted at about a 90 degree angle to the floor(simulating laying in bed)and inch along till i can sit. If I turn over in bed I feel like my eyes are going to pop out, they are darting back and forth so fast. My Doc said VL should only last 7 to 10 days, but from everything I've read, I could be in for the long haul. I'd never even heard of this till Monday. Will I be able to drive? I am in school. I'm scared. I can't get out of bed, how can I function? I have kids who need me. I have responsibilities. I feel like I have no purpose now. Help! I feel really hopeless. I hate this feeling of lightheadedness. I hate not being able to move my head!!!! Does anyone know of a medication that helps with vertigo? My Doctor prescribed Meclizine. I take it faithfully. It helps with the naseau, but not the dizziness. Any advice would be soooo appreciated>


donna, hang in there (yeah right). could be vl. you say you've been to a doctor. make sure he/she does bloodwork to rule out bacterial infection of the inner ear. in that case of course you would need antibiotics. i have read thru researching this stuff that a round of steroids might help reduce inflammation of the inner ear and thus damage. i recommend a neurotologist-an inner ear specialist. ent's are not inner ear specialists and i had no luck at all with them. they just simply don't know what to do-at least in my case. keep taking the meclizine for now so you don't become dehydrated from throwing up. call your doctor and see what he/she thinks about a round of steroids. hope this helps. we all here understand. it sucks. megan


Donna,

I have had the same exact symptoms except the throwing up part. I went to the Ent and he gave me the same thing meclizine but I only took it for two days. I felt it was making me worse so I stopped. I have been dealing with this since October 2006 and it is still here now. Its horrible and I would not wish this on anyone but you will need to take it slow for awhile. The key to this is not to dwell on the negative to try to find some positive out of it. Each day try to walk around even when the dizzyness is at its worst sitting around will make the recovery process longer. I kept a log each day to keep track of what I did each day so that when i felt so hopeless I could see that I was accomplishing somthing. I have been out of work since this hit and hopefully be able to return to work by next month. Getting this basiclly crushed me mentally and phyically. I just graduated college over the summer and was supposed to start my carrer as a Police officer but could not attend the Academy because of this. It will be harder for you since you have kids but you will make it through. You have to just keep positive and keep telling yourself its only another obstacle you have to conquer in life. I hope this helps if you have any other questions feel free to email me woodsxtreme@aim.com


Hi Donna

Sorry that you have been diagnosed with VL but most people do actually recover within a couple of weeks so hopefully you will be one of those! In the early stage there is not much you can do except play the waiting game. I don't know where you are but I am in the UK and we use Stemetil for the first couple of weeks to try and combat the nausea and dizziness but it does not work for everyone.

It is an awful illness and in the early days it is very depressing and frightening but you will get better so try and be optimistic. Don't push yourself too hard, give yourself time to get back to normal. Your eyes darting back and forth are one of the symptoms and so is the sickness.

If you are not recovered within the 4 weeks your doctor will probably refer you on to ENT but even then they cannot really help much. Click on the 'inner ear disorder' board at the top of this page and then go in to the sticky at the the top of that page and you will find loads of information as to what is happening to you and the rehabilitation exercises you can do if this lingers on.

And, you will always get support from us on this board.

Good luck x

Sandie


Hi there...

Tired after 5 constant months with dizzys and ear pressure/sore. I am doing VRTs...but getting upset that I am living in this world of being tired, head pressure...and dizzys. Stopped doing the exercises for a break yesterday...and felt better. Got back to the exercises today...and feel like crap...the ear fullness stinks. You all seem to have so much information...I was diagnosed with Vestibular Neuritis...Any advice?


Thanks to those of you who were kind enough to reply. I wrote down all the medications you recommended. I will go to the Doctor tomorrow with a long list and lots of questions. The nausa is a little better lately and I even did some laundry today! There is a lot to be positive about. I keep finding things--even what to a "normal" person would seem stupid--like 1) I'm catching up on all my TV shows, 2) I'm finding all kinds of cool designs on my ceiling, 3) I can still hear out of ONE of my ears, 4) I haven't had to cook a meal in over a week! The list goes on, but you get the idea. I just keep wondering how I'm going to be able to function now. I had to withdraw from my classes this semester, because I've already missed a week, and Thursday was the last day to withdraw without a penalty of some sort. Can someone tell me a few things? First, can you drive, and if so, how? Second, have any of you gotten a handicap tag for your car? My Doctor said if this goes on for awhile, I should think about it, since I can't walk from the car to the building without help. Anyone heard anything about that? Megan, and Sandi, thank you both for being so positive; that really helps a lot. I really appreciate you guys. Tricia, you're right. People who have not dealt with this DON'T understand. The people at my church think I have an ear infection and I'm sure a few of them wonder why I'm making such a big deal of it. oh well. Sometimes you have to live it to understand it. that's why I'm soooooo glad I found this web site. More later.:)


Hi,

I started having problems in July of last year, started with ringing in my ears and then I got dizziness(more like lightheadedness) and face pain.

Since then I have also had problems focussing my eyes (and floaters) and tingling in my legs and arms and a very sore neck. (in the first few months I also had bad anxiety attacks but they seem to have died down a lot)

I feel like I am going crazy.

Luckily I had one of my good days and was well enough for my wedding in September (which was great!)

I have been to the doctors, an ENT doctor and an Neurologist,

The ENT doc doesn't think it has anything to do with him because my dizziness isn't spinning (I feel lightheaded)

I saw a neurologist who said that I didn't have MS (he did some reflex tests and pin prick tests) and that my problems weren't neurological.

My GP(I'm in Scotland) must be sick of the sight of me!

I really need help, I have no one else to talk to about this apart from my wife (who has been great but gets frustrated about it because there is nothing she can do to help)

One of my main worries is that I have MS, my dad has it quite badly and I think an MRI is the only way to identify it.

My other worries is that this will never go away, I cannot stand this, I think that I am getting better and then BAM, back to square one.

I really need help but I don't think my GP, ENT or Neurology will do anything else for me, has anyone got any ideas?


hey jennifer, i know what you mean about the vrt exercises. i feel better when i don't do them and it brings on a lot of anxiety if i do decide to do them. yesterday i was sitting up in my bed reading the newspaper and was just depressing my shoulder a few times as the right side of my neck seemed tight. i was not even moving my head. well after about 4 mins of that i started getting very dizzy, ears got full and so did the muscles in the floor of my mouth. neck also very tense. the whole day was ruined. it was the worst i had felt in weeks, maybe months. so i won't be doing that again. i guess the neck receptors were being stimulated and my inner ears couldn't handle it so all the crappy symptoms appeared. made me very depressed on top of already being depressed. am going to try anti-depressants and counseling. i find no joy in living this way. i feel like a burden to my family. maybe at least those meds will help me deal with this better. has anyone heard from Chad lately? i hope he is doing ok and i hope all of you are having a decent day. megan


Hi again all, Just thought I might add my latest episode of dizzy trials and tribulations.

Had an appointment with my consultant last september, but sadly my consultant is very ill and can't work, so I received a letter from my ent hospital telling me that the only option was to discharge me! I phoned my consultants secretary and asked how on earth can I be discharged when I don't even have a diagnosis for what I am going through? she said she would put me down for an appontment with someone else.

The someone else turned out to be a professor no less! I had that apointment today and he told me that there is nothing they can do for me as I have tried all the tablets man has made for this sort of condition and nothing has worked, he went on to tell me, after a discussion with someone else, that I apparently have some damage to the nerves in my vestibular system and it was too deep or too small to see, even with my mri scan and all they could do was to discharge me and to get back to them if things changed for the worse.

He said that due to me having a cholesteatoma which led to having a radical mastoid operation to remove it and then the labyrinthitis did even more damage to the nerves in my inner ear.

so now I am baffled to say the least, I went very quiet when I was told there was nothing that could be done for me now, still I will do my best with this monster and somehow get to grips with all of this and come out better for it I am sure.

Many, many thanks to rich for this site, you are a saint rich, and many thanks to all of you dizzies for the help and hope you provide, may your god bles you.

Mick.


Megan..thanks for your response. I too get more ear fullness when I complete my vrts or exercise. I get tired of the constant feeling of fullness, woozy, foggy head crap. Is it getting better...yes...just seems so slow in leaving. Also, sudden moment of feeling decent...then, all comes back. What is up with that?


jennifer, you did ask for advice but i kind of went off on my own problems. sorry. regarding the exercises-modify them. for example: if one of your exercises is to look up and then back to midline, don't look up all the way. just go halfway. i don't believe we are to go full steam ahead to the point that the exercises make us sick. obviously, that cannot be good for our ears or our brains. or you might try going very slowly when doing a movement as opposed to fast. so when you get to a point where the slower version causes no symptoms, then just speed it up A LITTLE. if it makes you feel like crap, it was still too fast. the exercises they say are supposed to invoke dizziness but not to the point where we can hardly funtion the next day. so i hope that helps. mick i am so sorry for your despair, but thank you because i need your spirit right now to keep me going. take care all. megan


i'm sure y'all must think i have nothing better to do but post on this website. but please, i need your advice. i am thinking about going on anti-depressants and cognitive behavioral therapy. i would like to know what anti-depressants worked for you and which ones did not or made things worse. i'm just a mess right now. thanks for listening. megan


Megan, Whichever antidepressants you decide to try, I suggest you check for as much info as you can before you take any, with a lot of them the side effects include dizziness! I was on paxil for quite a while, almost two years I think, and the side effects are frightening, both starting them, taking them and also coming off them too, check out as much as you possibly can first, I was a wreck coming off them, loads of different withdrawal symptoms it was awful.

I settled down after a couple of months or so and tried a herbal thing called kalms for a few weeks they were helpful to a degree and non addictive, no panics for about two years now :o) I also tried some relaxation tapes, they didn't help at first but I stuck with them and they really helped me through, so much so that I started to fall asleep when I was listening to them! the only drug thing that helps me in any way now is serc.

This dizzy thing, whatever it may be caused by is so lousy to live with but it does get easier to cope with when you find the things that help you, all of us are different for many reasons, be they lifestyle, or whatever but keep going, don't overdo it and it will gradually start to fall into place, and sometimes you will seem to be going backwards but that is all part of this horrible thing we have to suffer.

Good luck to you Megan and all of you, have faith and you will get well bit by little bit.

best wishes to all dizzies and I wish you all good dizzy free health soon. Mick


Hi,

I was just wondering if anyone had any advice or positive words about my previous post?

I am so down, can't take much more of this.

Thanks


Hello, Sparky Sorry to hear about your problems I had the soar neck, and ringing,(still Have occasionally) daily for a very short period. I did not have the eye floating or face pain, but it seems like everyones symptoms vary to some degree. I did find a very good physical therapist who specializes in dizziness and balence problems (michelle Ramirez)I am not sure what state you are in but here is a website with dizziness/ balence specialistshttp://www.onbalance.com/patient_info/BalanceSpecialistsDetail.aspx?id=All+States I think mine was on there they are located in Los Osos CA. Hope you are haveing more good than bad days. It took me three years to get to the point of not have dizziness/ lightheadness on a reagular basis, but again everyone is differnt. Mine settled down after my neck got straightned out, however I still had problems with motion sickness then I accidently figured out sugar was a major factor. A change in diet seems to be a regular cure. (less salt, sugar,)If you look back on a lot of the posts you will find them mentioned also you might try grapefruit. I tried taking grapefruit extract pills from trader joes and that also seems to help. If I have a very bad day which is a percent of what it used to be I take mechlazine which was what my doctor and therapist told me to do. Hope This helps, Good luck keep us posted on how you are feeling.


Hello Sparky, I forgot to mention that allergies, was and still is a big contributor to my problem as well. Rhonda


Hello everyone,

it's been a year for me on february 1, I almost can't believe it. One year and I still struggle with the dizziness everyday and every morning I wake up and before I open my eyes I pray that the dizzy sensation is gone...but it seems to want to stay with me. It's still really hard to work I never know if I will have a medium day or a bad day, i cannot rely on myself..I went to see my ENT specialist again, but i think it's a waste of time, he cannot do anything for me. I am starting to find it very hard emotionally, I can't even believe that i have deal with this for a year, i think i have made my time and i would like to enjoy life again like i use too, i don't go out much anymore, feel too dizzy and i start getting anxiety, try to avoid the crowd.. it has changed my life a lot, but as soon as i can get my life back I will live it to the fullest, life is too short !

Have a good weekend !Thanks !


Dear Mick and Sparky, Mick: thank you for the advice about anti-depressants. i decided not to go on them as i seem to only feel like i need them on the "bad" days. on the "ok" days i deal with this crap pretty well. thank you so much for your response as that is why so many of us post-to get answers.

Sparky, mine started in june of last year. like you, i really didn't get any answers. they thought i had ms too. unfortunately doctors do not understand the vestibular system very well. i went to 2 ent's and it was totally useless. they didn't know what to do. i recommend you see a neurotologist-not a neurologist but an inner ear specialist as it does sound that you have a vestibular disorder. yes, i am still dizzy but it varies day to day. yes, this has affected my family as i am sure they are tired of listening to how crappy i feel sometimes. the vestibular system affects many of our organs including the heart, muscles, skin, blood vessels, adrenal glands (fight or flight), other glands (i sweat now and i just never really sweated), and so many more that i know i have missed. that is why so many doctors don't get it with all the weird symptoms. go see the neurotologist even if it means traveling. your symptoms are real and we all understand.

to everyone (including me): if someone posts a question on this site, if we think we can help then we need to post something in reply. remember, this is where so many of us find comfort and answers.

stay tough, megan


hey all, i have something i would like to pass on. because i am an occupational therapist i get lots of brochures in the mail on a multitude of topics to further my education. there is one course that may be of interest to you. it is called vestibular rehabilitation: evaluation and management of individuals with dizziness and balance disorders. the course is given by Dr. richard clendaniel who is a physical therapist/PhD at duke university who has done extensive research in this area. the course is designed to educate not diagnose. i plan to attend in dallas on february 23-25. it covers topics such as anatomy and function of the vestibular system, bppv,abnormal vestibular function and how it impacts normal function, peripheral and central lesions, tests, etc. i am going to the course for information to help me in my recovery. it's about $200 a day (3 days). you can go 1 day or all 3. he will also be in st. petersburg, florida; chicago, illinois; staten island, new york; wilkes-barre, pennsylvania; and wellingford, connecticut. if any of you are interested let me know and i will give you the dates or a number you can call. i just wanted to pass this along to help any way i can.


Hi Megan, that sounds great about the seminar! Can I get the dates and number for the one in Chicago.

Overall, Anna is right, this "THING" gradually goes away. January seemed to be my stepping stone, where I have had many normal and almost symptoms free days. Now its feb, my 11th month...my symptoms come up occasionally throughout the day, but doesnt last long. The one thing I did continue was my exercises for my eyes. And they have helped a great deal. I walk alot day and night and make sure I am always moving around.

For the longest time I would not go to a store, restaurant and so on....I had to force myself when my family came into town because they wanted to do the whole tourist thing in socal. Even though i couldnt tell them truely how I felt, I went and that was the best thing for me. My brain still has some blips it needs to work out, but I know its doing its thing! It is one step foward, two steps back, two steps foward and one step back, three steps forward and one step back, four steps forward and two steps back....thats the was this junk works!!!

cathy


Hi Everyone - I'm at about 7 wks with labs and it makes me nuts/furious/ upset, all the fun stuff you have all encountered. In the first few weeks of this - I had almost no relief. Now - I seem to have 1 good day out of each week. This makes me hopeful that I may be in some sort of SLOW RECOVERY stage - what do you think? For those of you who have recovered- is that how it happens? Very gradually or do you just wake up normal again one day?


Hello Jennifer and Meagan, I was reading your comments about tensing your neck or moving it the wrong way. It made me think about how mine went from an annoyance to an issue. I had been suffering from just BVP for quite a while before I got diagnosed and new what it was since it only affected me at night I tolerated it. I was actually getting massages once every two weeks or so becuase my neck was getting more sore as the dizziness continued. But what I think you might find interesting is that when I was getting a message is when I had dizziness that went from 20 to 40 seconds when I turned over at night to 20 or 30 minutes that day when the massage therapist was working on my neck. I have never been sure if it was from the pressure I that particular muscle or because I turned over that started my dizziness which was actually initially an up and down movement instead of an around movement. I still think mine is from a combination of reasons but, I thought I would mention this since you brought up the soar neck. Cant wait to hear about the information you bring back from the seminar. Thank you Rhonda


Thanks so much Megan,

I was just wondering where you are, in the UK or US?

if you are in the UK, can you tell me who your neurotologist is or how to find one!

does anyone else feel like they are becoming a hypochondriac, I seem to worry about every little ache and pain that I get!

I am really quite sad because we didn't get to go away on our honeymoon because of work commitments and now I'm not even sure that I could get on a plane without my head swimming.

This is really difficult and the fact that my eyes can't seem to focus correctly all the time is making work really tiring (I'm a computer programmer!)

Hope everyone is doing ok,

Sparky


Hi, my dizzy friends

Good wishes to you from Anna (Stillwater, home of Oklahoma State University).

I was literally dying from dizzyness, headaches, panics, depression, blurred vision, extreme noise and light sensitivity, fatigue, etc. I could not work, drive, I just could not stay around moving and sounding objects (including my own family). I was absolutely housebound for almost three years of my fifths bout of IT. Frankly speaking - I DID NOT WANT TO LIVE in such horrible condition..... My family was absolutely devastated.

Now I am doing INCREDIBLY better after I have started (only three months ago) ZERO SODIUM ADDED, no caffeine and no refind sugar diet. Besides - I threw away ALL headaches medications (I had been on barbiturates with caffeine for about three years!), anti-depressant Paxil. I eat LOTS and LOTS of greens, raw and cooked vegetables, raw, frozen and dried fruits, very little chiken and fish, vegetable oils, nuts, beans, lentils. I do NOT eat dairy products (I could never tolerate them well anyway - it is my personal intolerance because my liver condition - hepatatis infection). I eat smaller amounts of food at regular intervals, I drink a lot of fluids (herbal teas, juices with no sugar added half dilued with drinking water).

I walk at any weather in our safe and quiet neigborhood. When I feel tired and get unsteady - I have a short break sitting on a bench and relaxing all my muscles. Usually it helps a lot and I can continue my trip.

Ladies and gentlemen - I am coming back to life!!! I get still very tired in the evening, I can easily become very emotional and frustrated with just about anything. When it happens - I take VALERIAN ROOT capsules, two at a time. It makes me a little calmer.

Beata, Tom, Rhonda, Megan, Cheryl, Mick Gossling, Sandie, Cathy - everybody else - I love you all. You support each other through this website. You have been a GREAT support for me as well at the hardest moments of my life. I am still pulling myself from the ruins with my family and this support group help. Thanks!

BEATA - you have mentions something called Airborne. Has it really helped you personaly?

Hugs, Anna ("crazy" Russian born from Oklahoma)


hi cathy, the one in chicago is may 4-7 and the number to call is 800-487-6530 and the company is education resources, inc.

amelia, it seems that for most of us recovery is very slow with lots of ups and downs. if you did recover spontaneously i would think that you were one of the lucky ones who did not have any permanent damage to your vestibular system. stay away from the anti-anxiety drugs as they slow compensation. i can attest to that. i am completely off of them and i have actually had 5 ok days in a row. i am 8 months post labs/vn or whatever happened to me.

rhonda, i want a massage so bad but i am terrified i will go into dizziness. i can put pressure on my neck in certain areas and i feel briefly weird so i know i will get dizzy. and i know i am not compressing my veins or arteries when i do it. but for some of us, this thing really gets our neck. i guess it's all the thousands of receptors in the neck that tell our brains where our head is. also just fyi, i went back to my neurotologist in houston 2 weeks ago and would you believe i had bppv in both ears!!! i knew something wasn't right as i still was experiencing worse dizziness when i got up in the morning and when i lie down at night. he did the epley on my right and told me to come back in a couple of weeks to do the left. i am a little better so maybe the epley worked. it's a 4 hour drive from dallas but i just don't trust anyone else. he did the epley a different way without extending my head. he said that that was just not necessary. but something keeps giving me recurrent bppv. could be labyrinth damage, Meniere's, or some other autoimmune disorder that keeps attacking my inner ear. i just don't know. i hate not having definitive answers!!!! i do wonder if not moving my neck like i used to has something to do with it (cervicogenic dizziness) as immobilization can also cause bppv. i do try to keep my neck moving in all planes but with that stupid bppv it is hard to even want to.

take care all, megan


Hello Amelia, Yes to your comments that is exactly how I began to recover. Dont get discouraged if you seem to have to start over a few times, the symptoms seem to come back to a lesser degree then very gradually dissapates completly. Has any one been suffering from ongoing motion sickness durring the dizziness or after the dizziness? Thank you Rhonda


Thanks Megan for the info! That would explain your morning dizzies. I was the same way when I had BPPV. Once I had the epley down then my compensation starting taking off. BPPV can hinder you brain from relearning. Megan, you'll start feeling better once you get the epley on the other ear. Also, when you go back, have the doc do the epley on the ear you just had done to make sure it took. It can take a few times like me. Good luck!

Anna-It is so great to hear that you are beating this thing once and for all!!!! We are all behind you!!!!! Just think what another 3 more months will bring you!!!!!!!!!!!!!!!!!! Everyone here on this site is a great support system.

cathy


hey folks, a slight faux pas on my part. i do not think that the course i told you about is designed for anyone except medical professionals. so after i go i will pass on the information especially anything new that i have not seen in any of our posts. i am sorry but i thought about this in the middle of the night and called the course sponsor this morning. i guess i had a senior moment. megan


Hello Anna Airborne marketing theme is that is was developed by a school teacher because she was tired of getting colds. Three years agoe or so I used to get colds for three or four weeks at time and of course every time I did it made my symptoms increase.http://www.airborne-cold-remedy-formula-medicine.com/ I looked this sight up on the web and it looks like it had some helpful information on it. I have been taking airborne since it came out. I only get colds about once a year or maybe twice now like a normal person. The last cold I had last month only lasted a week and did not bring any symptoms on. This is the third cold I have had without any symptoms. I take airborne when you start to get that tickle in your throat and usually it will go away or at least decrease the time of the cold. hope this helps Rhonda, stay well


Thank you Meagan, my neck is still has an ongoing soar muscle I am sure you know the one. I was wondering if it is partially caused by tensing up when we get dizzy or possibly from sleeping at a 45 degree. May be a couple of questions for you to ask at the seminar. I can not remember if my neck got soar before or after I started getting vetigo. however when I was getting vertigo once in a while I did notice that my neck muscle was soar before I got the vertigo as well as durring and after. I finally got it to a point where it does not hurt all of the time. I am also wondering if mine was soar from the vertabrae trying to bend to the left. That seems like it could be reasonable to assume. Thanks again, Rhonda Ps. I am still afraid to go back to get a message, I am sure it is physcological, but I am sure you understand why I am.


Anna, I am really glad to hear you are doing so well now, your recovery is a great comfort to us all, maybe there is something out there that could help almost all of us, Just a case of searching and finding it.

I have tried all the low salt thing and sadly for me it didn't work, I think my ears have been attacked by so many infections over the years they may be damaged for good, no matter, I will keep on going till the end whatever the outcome, I am lucky that my wife has helped me through all of this dizzy madness, she has given me encouragement and understanding through all of my 30+ years of dizzy illness and my spirit is stronger lately.

To all of you who are still suffering with this dizzy thing, keep looking for the answer to your illness, keep fighting with all the strength you can find and you too will feel better, it might take longer than you hope but don't give in, you might not think so, but there are worse ilnesses out there.

I wish you all the best of health.


Hello Sparky, I had the same symptoms as up even worse. They all though I had MS I had an MRI and a Catscan and I did not. They could not figure out what I had because I was not dizzy the room did not spin but I always felt like a cat with one wisker I felt off. Like I was going to pass out and I actually did twice. The anxiety was sooooo great because I am a flight attendant and was always afraid of passing out on the plane or in the hotel room were I was alone and I would just die. I also thout I was going crazy like I need to go to the crazy people ward at the hospital. Here is what you need to do, Stop what you are doing now, Start eating healthy NO sugar, NO white flour No alcohol NO caffinne no nicotine. Grapefruit really helped in the beginning not pills the real stuff, here is what you do. Take a grapefruit wash the skin do not peel it but cut it stick it in the juicer and juice the grapefruit with the skin on it 3 times a day. It's gross but if you are as bad as I was you will drink it. Three times a day eat about 3 cloves. Yes whole cloves they are antibacterial very good for you. Drink water not regular water but DISTILLED water very important. Very high antioxident therapy. Fruits like kiwi pomagranite(very very good) however just about out of season drink the juice. Make salads your number one meal and fruit and if you are still hungery eat the rest remember no sugar white flour and all the rest. Eat lots of garlic I used a little canning jar cut about one whole garlic and cover it with honey wait untill the garlic goes to the bottom about 24hours and take 1 teaspoon three times a day. Take Airborne 3 times a day. This will take time by the way I started running start with just minutes and work up to minutes more per week. This will help you with anxiety. This will take time about weeks but you should feel better in about days I think. Good Luck I will check the web site for you just in case you have questions.

Anna yes airborne helped me it took me from those little spins to no spins. If I feel bad I take in times a day.


Mick,

When you say you've tried "....all the low salt thing and it didn't work for me" do you mean that you cut out salt only, or does "the whole thing " mean fresh fruits and vegetables etc.? I'm asking because like you I had this episodes of vertigo for a couple of decades and was sure I was going to die with it until about June last year when I started really revolutionizing my diet. It's basically the same diet that Anna describes and I found that the more of those items I introduced as added nutrition, the better I began to feel.

I've now gone totally over to the "Fuhrman Diet" and I am essentially symptom free! I have not had anything remotely like a vertigo attack and my head is so clear compared to what it used to be it's like a miracle. I no longer have ear aches which were absolutelt chronic with me.

I would say the four things that helped me most in my recovery were Ginkgo (in the beginning), Walking as much as possible, Grapefruit (fresh and extract) and in the end most importantly Fuhrmans recommended diet, ie; lots of fruit and vegetables,low sugar intake, low salt, no caffeine , etc.

Maybe there were FIVE things, the fifth being support and suggestions on this site. Thanks to all and especially you Rich. It's given me my life back and I hope that others can see the light too.

..with more appreciation than I can express, Tom.


Mick and everybody, thanks!

My emotions are too strong this evening. But my family is a great support for me. My 86 year old mother is so overprotective, though.

But I have read all the posts anyway.

We will see what three next months of this low salt no caffeine diet will bring me.

Yours, Anna


I actually wrote way back when on this board when I lab. in July of 2006. It's now Feb. 2007 and I woke up with it again! This time I went right to the doc and he gave me Antivert. Took it one day and was still dizzy, the next, I woke up and I'm not as dizzy so much as feeling a bit "off". I wonder if this thing will ever go away completely or if the unlucky few, like myself, will continue to have random days like this. I had a fever of 99 so they did think it was labryrinthitis again. I can't imagine that this would go on all the time. Is it because I have sensative ears? I also got ear infections when I was little. I got my adenoids taken out and tubes put in my ear. Maybe, and this is just a theory, they did so much damage to my ears as a child that everytime I get a viral infection (or most of the time at least), it attacks the ears first. AARGHHH!!! I sure do hate it. I wish there was something we could do to make it stop!


I wanted to know if anyone else experienced this before they got an attack of Labyrinthitis. Each time I got this terrible thing, the night before I had a short dizzy spell. Last time, I was making tea and I suddently got really dizzy. I had to go lay down for a minute and it passed. The rest of the night I was fine, no issues at all. The next morning I woke up with labs! This happened last time as well. I was doing my hair and suddenly got dizzy. I thought it was the heat generating from the straightening iron. Went to dinner and was totally fine. Next morning woke up with labs! Does this happen to anyone else?


Hello all

I was diagnosed with Labyrinthitis on 4 December 2006. The symptoms started on 29 November when I woke in the morning and my head just didnt feel right as though I was slightly tipsy. Throughout the day my neck started to feel a little stiff and achey. 1 December was the worst of the symptoms where my head felt foggy and I had the tipsy feeling also these feelings tended to just come and go in waves throughout the day Id feel fine for a while, and not-so-good for a while etc. And it was like I could feel something in my head I was conscious of the lower back part of my head as though there was something there that I could reach in and take out and Id feel better.

By 3 December, I was feeling so stressed about what was wrong with me that I started to get heart palpitations and thought I was having a panic attack!! I very rarely get sick I havent had the flu since 1995, I havent vomited since 2002 so feeling even a slight bit unwell was really distressing for me as I convinced myself that I must be dying! :P I thought I had either MS or a brain tumour! So, needless to say, I needed a diagnosis so I went to the doctor on 4 December and he asked my symptoms, did a few little tests (ie. Got me to close my eyes, put out my hands, hed touch one of my fingers and Id have to tell him which finger on which hand he was touching, walk in a straight line etc), just to check that my brain was still functioning properly and that my symptoms werent the result of something sinister. Then I was diagnosed with labyrinthitis the relief I felt was incredible!!! After this time, I still felt the tipsy feelings and the fogginess from time to time but my anxiety almost disappeared.

Over the next few weeks, the symptoms subsided until I forgot Id even had labyrinthitis at all!

Then, on 14 January 2007 I went to the cinemas to see a movie with my partner, during which I felt the familiar twinge in my neck and the tipsiness in my head. Not again!! I thought I would just have a short bout of labyrinthitis and then be back to good health (which I was for a few weeks) but now, alas, it is back again.

I have four questions to ask: 1. Has anyone else had labs, had it then disappear, and then reappear again only weeks later? It seems most people on this list have it sort of stay constantly in one form or degree or other, or it disappears for months/years and then comes back. 2. Could watching the movie at the cinemas (big screen, dark room, moving my eyes to watch the movie) perhaps have triggered it at all?? 3. Does stress or nerves lead to an attack/relapse, say on a big day like a wedding day, or a job interview? 4. Does anyone know what effect pregnancy has on triggering labs?

Cheers!

Melli :]


Hi again all, Tom, I have had so many diseases in my ears now, especially my left ear, that the professor I saw has told me there is obviously some nerve damage but to what degree it is impossible to know as the inner ear is too small to see with ct, mri etc, the only reason for such tests is to eradicate other reasons for vertigo like tumors etc.

I was told by a consultant I saw around 12 years ago that salt was a bad factor for people with dizzy problems and I cut out salt as much as I could and ate much healthier but no improvement for me sadly.

I have had, over the last 11 years, possible meniere's desease, a cholesteatoma? a radical mastoidectomy, which left me feeling much worse after having the operation and then this wonderful kick in the teeth from nature called labyrinthitis 4 times in a 5 month period.

I have now been diagnosed with chronic peripheral vestibular disorder! which is a term used by the ent profession when they have done all the tests etc and run out of other ideas. Lets be honest, doctors know so little about this really and are just now beginning to understand that vestibular disorders cause all kinds of other problems apart from just the dizziness/vertigo so there is some hope for the future maybe.

But I am doing ok, it's normal now for me to struggle sometimes and it does get easier when you accept that this is your lot, the best help I have found is on sites such as this where other sufferers help each other better than most doctors who can't possibly understand what this dizzy stuff does to us.

good health to you all very soon, take care.....Mick.


Melli -

Has anyone in your family ever been diagnosed with migraines?


Hi again everyone,

I just wanted to let you all know that I have passed the 2 year mark but feel considerably better these days. I still feel off balance a bit but most of the dizziness is gone - well the bad stuff anyway. It is still day to day with me but I feel better most of the time now - which I am very thankful for. The tinnitus has diminished for the most part and so has the neck pain/tightness. My ears are a lot less clogged too.

When I do feel bad, I am beginning to gain confidence that I will be better the next day and therefore I don't have as much anxiety as I used to.

1. Low sodium diet/no alcohol/no caffeine/low sugar 2. Vitamins (especially B) 3. Neck and shoulder exercises (important to me) 4. Relaxation techniques (deep breathing, etc.) 5. Plenty of sleep/rest/relax

I just wanted to let everyone know that I had a particularly bad case of this and it is going away slowly. I feel ok most of the time now - at least good enough to do most of what I want to do.

You will get better too.


Hello Melli, Yes to the first three of your questions, I do not know about the fourth, but it would not surprise me if pregnancy effected labs, since hormones get out of control. Hello, Ravyn I used to get vertigo when I washed my hair, but I assumed it was because you are turning your head alot or looking up and down to blow dry. Maybe the noise of the hair dryer also. I dont remember if I got a short turn of vertigo one evening and then had it the next day. However I would usually feel crappy the next day, now I am pretty sure it was from motion sickness caused by the vertigo from the night before. I hope this helps.Hope you feel better soon. Rhonda


I have been reading the posts since October. If this posts I have a lot more to say! First question-Does any get really dizzy after washing thoer hair?


Thanks guys, that's a few questions answered :] My case sounds quite mild compared to some. Here is a list of my symptoms - has anyone else had these? One thing I haven't had all this time is tinnitus or anything wrong with my ears at all, which is why I was surprised to be told I had an inner ear disorder:

head fogginess/ "cottonwool head" (where I feel my head is full of cottonwool and I have to try to concentrate 'through' it!)

tipsiness (just like I've had a few drinks) vision looks 'sweltering' (like when you look at a hot road and it is kind of hazy) irregular heartbeat (when this happens I find I need to breathe deeply) pain in neck/upper back (I think this has a lot to do with the irregular heartbeat) sort of 'tightness' in chest/upper back (same as above...and only when my heart is playing up) fatigue waves of nausea (this has only happened a few times, but I havent been actually physically sick) difficult to concentrate (the thought of concentrating a great deal is overwhelming and would require a great deal of effort, of which I do not have in this state! :P )

So, those are my symptoms and they suck!! Some days I have some, some days I have others, some days I have all!! Its boo :[

I do wish it would go away completely though - it's 6 weeks today since I got it for a second time and I'm trying to lead a normal life but it's hard :[ I'm only 25 and I feel like an old lady!

Kim, nobody in my family has ever had migraines. And nobody else I know has ever had labyrinthitis :\

I hope everyone is doing well!


Hi Melli

Just to let you know that I get some of your symptoms! Like you I get some of them on their own or all at once!

I am at a good stage now after having this for appx 22 mths. Most days are not too bad. Like you I do not really have 'ear' problems such as deafness, though I do have low level tinnitus which doesn't bother me at all. I have the cottonwool head at times, and also I have started having palpitations though I think this might be to do with my age(46). Lucky me, I'm getting over the dizziness, balance problems etc and I might be starting to be pre-menopausal, yippee, just what I need!

Beatle Mark, glad to hear you are so much better. I totally agree with you about being more confident when you do start to feel dizzy/off balance, you know now that it is not going to last and it certainly takes the anxiety away!

My life is pretty good at the minute, I work part-time, and don't always feel great but I just get on with it. So many people are much worse off then me. I sincerely think that the answer is to slow down in life and to treat your body with respect. I am not saying I am a picture of health but I do take much better care of myself now than I ever did as this illness has given me a real shock and probably a perfectly timed wake up call. I do a lot of walking now and have cut down drastically on sugar and salt in my diet and take vitamins, more fruit and veg. I can honestly say I hadn't had a piece of fruit in years before I was ill!

If I had done this a couple of years ago I might not be in this situation now, as looking back I was very run down at the time I caught this dreaded illness.

Take care

Sandie


Hello everyone!!!

Well, I have just sat here for the past three hours reading about everyone's symptoms of VL. I was told I had VL on Monday January 29th and knew absolutely nothing about the diagnosis - just that I was horribly afraid of the hole idea of what was going on. As a child, I could never go on any rides that made me feel dizzy as I couldn't handle the feeling at all. By Wednesday January 31, I was back on the telephone with the GP, crying that I could not handle living this way and that he had to help me. You see I have my own business, two young children and I have a part time job that I go to 3 nights a week. He told me that I had to give everything up for 6 weeks - no working, no driving, no stress - Yeah right??? There is no way that I can do this. Anyway.....now that I have suffered with this for 3 weeks I feel refreshed to read all of the emails from those who unfortunately are suffering through this as well. I HATE IT!!!!!

I can't figure out how I got this and I don't even care at this point, I just want it to go away. How do you just live with this??? Unless you have experienced it, no one understands!!! I love my husband dearly however every now and again he will crack a joke like "Have you been in any mazes lately?" I try to hide my condition from my family as best as I can because I figure why should they suffer this with me??

I went back to my GP about 10 days ago and he asked me if I felt that my condition was getting better....I answered by saying that I wasn't sure if I was getting better or if I was just tolerating the situation better??? I can't tell, all I know is that I have learned how to avoid the dizziness as best as I can. I find that keeping my head level at 90 degrees to the floor usually helps. I have found however that the cold weather up here in Canada right now is reaking havoc on my ears and my dizziness is brutal when I go outside.

I could go on forever about my experiences but I look forward to getting some serious answers on Friday of this week. I have an appointment with an ENT and I feel that I have read enough about VL to talk intelligently with him about where I go from here.

Thanks for listening....look forward to others updates.

Here's hoping we ALL get well again, Kim


Hi, dear friends

Just an update of my case. I am doing a little BETTER again in Oklahoma. My diet is very similar of what Beatle Mark has been doing for some time (look up his posts).

I am very bored of staying at home. Sometimes it makes me a little crazy. Maybe, it is partly because I have to take care of my 86-year old mother (Bless her heart, but her panics make my recovery harder).

Still it IS recovery...

I will let you all know about my further progress.

New people on this site - listen to those who are more experienced with IT.

Take care.

Hugs, Anna from Oklahoma


Hello Melli, Yes to all of your symptoms except two differnces, I did not have the hear increase however I did have the cold feeling, then hot back and forth till I recovered. Like getting the flue symptoms. It almost feels like a hangover at least as far as I can guess,I dont drink much. Glad to hear Anna is feeling better. Rhonda


Just a question to any one, Just a thought but when everyone comments about neck soarness (including me) have you noticed whether it is soar on the side of your bad ear? I have noticed that when I had both ears affected my entire neck was soar more on my right than left. Now I am only soar on my right side and it seems only when I am affected by my ear. In fact I think I can tell I am going to get motion sickness by when my neck gets soar. In the begining I thought the muscle was soar from my neck wanting to curve to left or from flying in the right seat with my neck turned to the left. However now it seems only to be soar on days I am not feeling 100% even if it is only 99%. Does any one have any thoughts about this. Thank you Rhonda


New here...

On my 6th month...diagnosed with VN about 5 months ago. Still dealing with visual problems. My balance seems so much better, doing VRT. However, now I seem to feel head fullness and just head dizzy (if that make sense). I don't think I am going to fall over...I just feel out of it. Like my eyes are still causing a feeling of being "off" "woozy"...

Does this make sense? I would love some feedback. Thanks!


Hi Jennifer, those visual problems are the last to go. It may take another 6 months for them to go away, but everyone is different. I think mine is at its last straw. Went to Best Buy today, felt fine. Every month that goes by I see a huge improvement. By the way, are you on the Healthboards too??? You sound like someone I write to. Just a thought!

Hope everyone feels well soon.


Cathy,

I am on the healthboards...would love to know who you are...I get so much support on there! Thanks so much for your feedback. I have had a few bad days...they shook me. Some days I need just some support..I do get frightened.....


Hi, everybody

To answer the question of Jennifer. Your eyes problems should be gone, like mine - they are gone completely.

Just an update of my situation. I still feel weather changes, I am still very-very emotional. But my balance is much-much better. I walk, walk and walk. I try to restrict my computer time to the very minimum. Sorry, that I cannot spend more time with you on this site.

I will get an update on my situation in a while.

Keep strong.

Anna from Oklahoma (very-very tired with the struggle with this illness)


Thanks Anna...

How long did it take for the visuals to go? Can you tell me what visual issues you had? Thanks so much Anna...I have read lots of your posts!!


Hi Jennifer, my name in the healthboards is jaxzilla....and yours??????


Jax...its Charlotte here...great you are here...


Hey jennifer!!!!

email me!!!...cklenske@hotmail.com...I thought it was you!!!! I could tell by your writings!!!

Cathy

Hey Megan-did you go to the vestibular seminar?? If so, how was it???


Does this sound like BPPV?

Should I be worried about another occurrence of this terrible thing? Can I say that if the medication works I probably won't have another incident?

I should mention that I have one other worrisome symptom. I thought this was unrelated but it might not be. In October (two weeks before I got married), I started having light flashes in my right eye. The flashes would appear in the corner of my eye and stay for a few hours and go away. Now I still have these light flashes but only on some days when I look to the right I see three quick flashes of light. I told my doctor and he seemed unconcerned. Back in Oct. I went to the eye doc. and she told me my eyes were 100% healthy with no problems and that it was either an ocular migraine or a pressure phosphene. Now that I have the vertigo, I'm worried that there is something in my head pressing on both something in my ear and my optic nerve causing flashes in the eye and vertigo. I should mention that the flashes and the vertigo never happen at the same time. In fact, since I've gotten the vertigo the flashes were absent until today when I still feel a little vertigo but only when I bend my head a certain way. The light flashes when moving my eye came back today but very faintly. Should I insist that the doctor give me an MRI? Does this sound like something that could be related to each other?


Ravyn - You should by all means see a neurologist for an MRI, etc. just to rule out the bad stuff, but in the mean time you might want to check out the Migraine associated vertigo forum (MAV). Its a great site, lots of good info, and I'd just about bet you'll identify with alot of the people there. I too was diagnosed with Labs exactly one year ago, but since have discovered that most all of my lingering symptoms are migraine related. Through strict diet and medication (and lots and lots of research) I'm doing really great now. Check it out - http://www.mvertigo.org/ Kim


Hello everyone,

I have posted a couple of times here, it's been 14 months for me suffering from labyrinthitis, the first 4 months were really hard, but after that i am stuck with constant dizziness , head pressure, ear blocking and ear pain and a lot of anxiety, the worst is the dizziness somedays i cannot function because of it and it has been really hard socialy and financialy.I have seen a loy of doctors and had a lot of test done, but nothing and nobody seem to help. Lately i have had a lot more ear pain in my left ear, the one that has been damaged, i am just wondering why after 14 months i start having more frequent ear pain ?? i am going to see my ENT in 2 months i will ask her, but in the meantime is there anyone who has experience frequent on and off ear pain after a year or so ???? i am concerned and wondering what is causing this pain .....

Thanks everyone,

Julie


Hello Jullie, I suffered from some ear pain also, My worst ear was the right ear. It helps if you sleep with the worst ear down. My husband thinks the ear pain is from pressure, it was the worst when the barometric pressure changed drammatically overnight. It still bothers me when that happens but not as much. They were also oversensitive if I go water in them for a while, fortunantly that went a way completly. Hope you feel better and this helps a little Rhonda


Thanks Rhonda,

It helps to know that others have ear pain also even after a couple of months, i was worried that it could be an infection , but I also think it could be pressure , I found an article on the web that explained that when the eustachian tube is blocked, the pressure in the middle ear can't be equalized. The air that's already there is absorbed and, without an incoming supply, a vacuum occurs in the middle ear, sucking the eardrum inward and stretching it painfully taut.Sometimes milder intermittent earache can occur and this may be due to eustachian tube blockage without actual infection.

Thanks

Julie


hi folks, i did go to the vestibular seminar and it was great. i wanted to have the speaker all to myself for those 3 days however i knew he was there to educate and not be bombarded by all my questions. he and i did decide that the vice feeling that i get on the left side of my head, deep in my ear, and neck is probably a vestibular migraine. he told me to follow the regular migraine diet which i have done and have not had one since. the last 2 i had were preceded by strong coffee and red wine. he talked a lot about bppv and cervical vertigo which i am sure i do not have now. but now i'm not sure what is going on. if there is a vestibular loss in one ear whether complete or not, the other ear should compensate within 2-3 months i have learned. i have something wrong with both ears. lots of pressure and ringing which comes and goes along with varying dizziness. my balance is great. i sometimes get a burning feeling like inflammation deep in my ears and under the jaw where the eustachian tubes lead. it comes and goes so i am beginning to believe that i have some sort of autoimmune thing going on which keeps attacking my eustachian tubes and possibly my inner or middle ears. i have researched until i am blue in the face and nothing else makes sense. he talked about menniere's disease and endolymph hydrops. i researched that malfunctioning eustachian tubes can cause severe pressure in the ears, tinnitis, pain, and dysequilibrium. the speaker was very knowlegable with his information and knew all the various manual tests to rule out fistulas, central nervous system vs. peripheral diziness/nystagmus, cervical vertigo, etc. i told him of my symptoms and that i thought i might have some kind of autoimmunity thing going on. honestly, i could not identify with any of the topics discussed regarding my symptoms. don't let any of this scare you all as i am just talking about me. right now i am in some sort of flare up of my symptoms. i am going to a neurotologist who is closer to home next week and discuss this with him. what do you all think? once a person gets better, why should there be all these bad days followed by a few ok days and then more bad days? my right ear has actually gotten worse since all this started 9 months ago and that was my good ear. megan


Hello Meagan, I wish we could figure out why it goes and comes I think if that question gets answered this condition would be a lot easier to deal with. I have not had any dizziness for a very long while and two nights agoe I had a night where my head wanted to spin every time I turned over. I am hoping that it is not allergy related but I have a feeling it is. Thank you For all of your information. Julie also Meagan I also used to get that burning feeling you are talking about fortantly that has been nonexistant for a long while. However I still get the ringing in my ears. Not as much but it is still there.


Hello Everyone,

I am the Sam that posted a while back about decomps and even further back as 2 years ago. I have been dealing with this on and off... It seems Just when I think I beat it, I get shoved back down the pits. I just came off a 2.5 month period of feeling about 99%. However, I now have an ear infection (middle ear).... The first one I have ever had.. likely contracted from my daughters recent viral illness. Great... I am on anti-b's but my left ear is completely clogged... feels terrible and the hearing is muffled.

Anyone here have any experience with Mid Ear Infections? If so, what are the symptoms??? Dizziness?? Clogged ear, when does that go? etc etc... Also, if you have had one with your labs, has it triggered a decomp?

Sam


Hey Sam, I remember you!!! That is awesome that you are 99% recovered. Your body will start compensating better everytime you get sick...and it will be shorter periods of time and less servere...If you read Sandi's posts, she would always have a decomp when she would get sick, she not last time...if you havent decomped with this ear infection that is great news!!! Take some decongestions for your ear, it will help dry out the fluid. Double it up!!!!

Glad you feel great!! Cathy


Hi everyone, it's me again!!!

I have had dizziness since last summer!

I am getting pretty scared, last week I started to have problems with my legs/feet and my hands. I was getting a sort of weird rushing feeling, like I could feel my blood going through my veins, particularly at the back of my legs behind my knee. Since then, it really hasn't got better (my hands feel a little less weird but my legs are almost twitching)It feels like the muscles in my legs are fluttering, contracting lightly like I am going to get cramp but then just easing off repeatedly.

It is really strange, I am so worried that I have MS


Hi, all!

A friend at work recommended this site, and I'm so glad she did! I've had BPPV twice before and always after a cold or flu, and it went away both times. I had the flu last month and, like some horrible relative, BPPV showed up again when I could least cope with it. This time, however, I went to an ENT who did not look as me as if I sprouted two heads. This doctor even told me vertigo was common and there were Epley (sp?) manuvers that supposedly have a 90% cure rate. I have an appointment next month to get the Epley manuvers - I'll let you know how they work.

My poor father has suffered from vertigo for decades. He was a dentist in the Navy and woke up one morning with the room spinning. The Navy tried to kick him out and deny him benefits, but Dad prevailed against them. I wonder if perhaps the shape of the semicircular canals (which could be inherited)has something to do with the tendency for vertigo after colds? Anyway, I'm glad I found this place - isn't it great that Rich's comment about his illness on his web place ended up to be a means of emotional support and common sense help for so many?


Katie said:

isn't it great that Rich's comment about his illness on his web place ended up to be a means of emotional support and common sense help for so many?

I've often though so. It's often been a source of wonder and amazement to me. Not many weblog writers have been lucky enough to provide a group of people with such a resource.

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