Sharp Blue: Labyrinthitis comments, page 7

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