Sharp Blue: Labyrinthitis comments, page 7

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1. Comment by Anna on August 24, 2006 2:54 AM permalink

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

2. Comment by John on August 24, 2006 6:43 AM permalink

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.

3. Comment by Spanna (I'm called Anna but there is already another one out there!) on August 24, 2006 4:26 PM permalink

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!!

4. Comment by Paul on August 24, 2006 11:46 PM permalink

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!

5. Comment by Karen on August 25, 2006 12:10 AM permalink

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

6. Comment by lisa on August 25, 2006 12:34 PM permalink

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.

7. Comment by on August 25, 2006 8:30 PM permalink

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

8. Comment by Lisa on August 26, 2006 1:13 AM permalink

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

9. Comment by john on August 26, 2006 4:02 AM permalink

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.

10. Comment by Anna on August 27, 2006 9:41 PM permalink

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

11. Comment by Lisa on August 27, 2006 10:26 PM permalink

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.

12. Comment by Lisa on August 27, 2006 11:07 PM permalink

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

13. Comment by on August 28, 2006 6:32 PM permalink

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

14. Comment by lisa on August 29, 2006 3:29 PM permalink

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.

15. Comment by Robin on August 29, 2006 6:46 PM permalink

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

16. Comment by Lisa on August 29, 2006 8:40 PM permalink

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

17. Comment by Karen on August 29, 2006 9:05 PM permalink

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

18. Comment by margaret on August 29, 2006 9:49 PM permalink

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

19. Comment by Lisa on August 29, 2006 11:55 PM permalink

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

20. Comment by john on August 30, 2006 1:14 AM permalink

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.

21. Comment by on August 30, 2006 9:31 AM permalink

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

22. Comment by on August 30, 2006 3:13 PM permalink

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.

23. Comment by Robin on August 31, 2006 12:21 AM permalink

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

24. Comment by CHAD on August 31, 2006 7:31 PM permalink

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

25. Comment by on September 1, 2006 9:13 AM permalink

Chad

What percentage would you say you at? 95%?

Are you doing VRT?

It will go, it wont last forever!

Deus

26. Comment by on September 1, 2006 3:22 PM permalink

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.

27. Comment by Tom on September 2, 2006 5:16 AM permalink

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.

28. Comment by Anna on September 3, 2006 12:11 AM permalink

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).

29. Comment by Tracy on September 4, 2006 12:01 AM permalink

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 :)

30. Comment by Spanna on September 4, 2006 12:33 PM permalink

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

31. Comment by chad on September 4, 2006 5:21 PM permalink

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....

32. Comment by Tracy on September 5, 2006 4:46 PM permalink

Dues,

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

Tracy:)

33. Comment by Lauren on September 5, 2006 8:19 PM permalink

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

34. Comment by Anna on September 5, 2006 11:44 PM permalink

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.

35. Comment by chad on September 6, 2006 2:44 PM permalink

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....

36. Comment by chad on September 6, 2006 3:38 PM permalink

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...

37. Comment by on September 6, 2006 4:01 PM permalink

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

38. Comment by chris on September 7, 2006 9:11 AM permalink

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.

39. Comment by Elizabeth on September 8, 2006 3:28 PM permalink

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

40. Comment by on September 9, 2006 12:22 PM permalink

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

41. Comment by Lauren on September 9, 2006 6:37 PM permalink

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!!!

42. Comment by Frances on September 13, 2006 1:31 PM permalink

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

43. Comment by chad on September 14, 2006 6:38 PM permalink

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????

44. Comment by chad on September 14, 2006 7:23 PM permalink

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

45. Comment by chris on September 14, 2006 9:27 PM permalink

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.

46. Comment by chris on September 14, 2006 9:32 PM permalink

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.

47. Comment by Lisa on September 14, 2006 11:11 PM permalink

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)

48. Comment by chad on September 15, 2006 2:44 PM permalink

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.

49. Comment by chad on September 15, 2006 3:56 PM permalink

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

50. Comment by Anna on September 15, 2006 6:04 PM permalink

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).

51. Comment by Tracy on September 15, 2006 6:56 PM permalink

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

52. Comment by on September 15, 2006 7:09 PM permalink

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

53. Comment by Rich on September 15, 2006 7:24 PM permalink

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.

54. Comment by on September 15, 2006 8:08 PM permalink

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

55. Comment by Frances on September 16, 2006 10:10 AM permalink

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

56. Comment by LVA on September 16, 2006 11:24 PM permalink

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....

57. Comment by megan on September 17, 2006 1:22 AM permalink

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

58. Comment by megan on September 17, 2006 4:36 PM permalink

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

59. Comment by chris on September 17, 2006 10:23 PM permalink

lva

did your tests show anything?

60. Comment by lva on September 18, 2006 2:42 PM permalink

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

61. Comment by Tracy on September 18, 2006 3:32 PM permalink

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

62. Comment by chad on September 18, 2006 4:31 PM permalink

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

63. Comment by chad on September 18, 2006 7:11 PM permalink

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...

64. Comment by lva on September 18, 2006 10:10 PM permalink

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!!

65. Comment by on September 18, 2006 10:24 PM permalink

lva

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

66. Comment by lva on September 18, 2006 11:28 PM permalink

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??

67. Comment by Graeme on September 19, 2006 3:42 AM permalink

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.

68. Comment by Louise on September 19, 2006 4:50 AM permalink

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

69. Comment by on September 19, 2006 5:37 AM permalink

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?

70. Comment by Robin on September 19, 2006 3:07 PM permalink

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.

71. Comment by sarah on September 19, 2006 5:31 PM permalink

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

72. Comment by lva on September 19, 2006 8:06 PM permalink

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.

73. Comment by lva on September 19, 2006 8:13 PM permalink

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.

74. Comment by chad on September 19, 2006 8:22 PM permalink

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....

75. Comment by chad on September 19, 2006 9:08 PM permalink

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...

76. Comment by Tracy on September 19, 2006 9:17 PM permalink

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

77. Comment by Elizabeth on September 20, 2006 6:43 PM permalink

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

78. Comment by on September 21, 2006 5:35 AM permalink

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??

79. Comment by chad on September 21, 2006 4:25 PM permalink

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

80. Comment by on September 21, 2006 11:08 PM permalink

anna

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

81. Comment by chris on September 21, 2006 11:11 PM permalink

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?

82. Comment by Anna on September 22, 2006 10:48 PM permalink

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

83. Comment by Graeme on September 24, 2006 12:50 PM permalink

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

84. Comment by Tracy on September 24, 2006 5:38 PM permalink

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

85. Comment by lva on September 24, 2006 10:26 PM permalink

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?

86. Comment by on September 25, 2006 12:58 AM permalink

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.....

87. Comment by Christina on September 25, 2006 2:24 AM permalink

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.

88. Comment by chad on September 25, 2006 8:07 PM permalink

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....

89. Comment by lva on September 26, 2006 2:03 AM permalink

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?

90. Comment by Anna on September 26, 2006 2:54 AM permalink

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

91. Comment by Graeme on September 26, 2006 11:31 AM permalink

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

92. Comment by Elizabeth on September 26, 2006 3:25 PM permalink

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

93. Comment by Christina on September 27, 2006 2:52 AM permalink

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

94. Comment by Anna on September 27, 2006 10:16 PM permalink

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

95. Comment by lauren on September 28, 2006 2:32 AM permalink

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.

96. Comment by on September 28, 2006 3:38 AM permalink

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.

97. Comment by Mary on September 28, 2006 7:41 AM permalink

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.

98. Comment by Mary on September 28, 2006 7:45 AM permalink

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.

99. Comment by chad on September 28, 2006 1:53 PM permalink

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...??????????

100. Comment by Tracy on September 29, 2006 4:20 PM permalink

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 :)

101. Comment by lva on September 29, 2006 5:27 PM permalink

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!!

102. Comment by Anna on September 29, 2006 10:31 PM permalink

eMs -

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

Anna

103. Comment by lauren on September 30, 2006 10:38 PM permalink

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?

104. Comment by on October 1, 2006 11:15 PM permalink

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?

105. Comment by farah on October 3, 2006 2:56 AM permalink

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

106. Comment by eMs on October 3, 2006 3:38 AM permalink

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.

107. Comment by tiffany on October 3, 2006 11:10 PM permalink

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

108. Comment by Jay on October 5, 2006 4:54 AM permalink

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

109. Comment by Graeme on October 5, 2006 7:12 AM permalink

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

110. Comment by on October 5, 2006 9:55 PM permalink

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

111. Comment by Anna on October 5, 2006 10:42 PM permalink

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

112. Comment by on October 6, 2006 8:47 PM permalink

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!!

113. Comment by Anna on October 8, 2006 3:21 AM permalink

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 sw