Sharp Blue: Labyrinthitis comments, page 6

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1. Comment by Lisa on March 25, 2006 7:43 PM permalink

Hi Frances, I can only share with you the source of my inner peace which I am convinced can work for everyone. Mine comes from my belief in my creator and my trust in him. Read Isaih 12:2& 26:3. But don't forget it is in your belief and developing a relationship with him. A relationship does not come through a one time meeting, but through a continual fellowship. Believe me, it does work.

2. Comment by on March 26, 2006 6:47 PM permalink

Was du redest ist Pappe!!

What will really WORK is VRT combined with a positive attitude and nerves of steel.

Religion spielt keine Rolle!!

Rollo aus Wien

3. Comment by Lisa on March 26, 2006 11:01 PM permalink

Sorry if my comment offended anyone. She asked about a source of inner peace. I never intended to suggest that medicine or therapy would not work for physical ailments. Take it for what its worth to you. It works for me.

4. Comment by Anna on March 27, 2006 2:05 AM permalink

Hi, everybody

Rollo - sorry that I do not speak German. I wish I did.I am an American born in Russia. Whoever we are - we are all fighting this Dizzy Monster and we DO have nerves of steel.

Tomorrow, I am going to drive myself for two doctors appointments - to a neurologist and to an ENT. Just a ten minutes drive - but it will be quite a challenge for me, because I have not been driving for more, than 8 months now. I am sure, that I can handle this short distance without putting my, or somebodyelse's life at risk. I need to be seen by the doctors for the RECORDS (not for a treatment, of course) - as FOLLOW -UP VISITS required by both Social Security and my insurance company for filing long-term disability claims. Long-term disability - it sounds awful. But it is an ONLY CHANCE for me to REST, RELAX and finally - TO RECOVER.

Stay strong, be patient, do not "rush and push" your recovery.

Very tired, but NOT DEFEATED, on the 28th months of my 5th bout of an inner ear disorder

Anna

5. Comment by Frances on March 27, 2006 9:14 AM permalink

Hi everyone

Thanks for your help Lisa and I'm happy that you've found a way to cope. As for me...........still struggling but I think acceptance is the key. Once I've mastered that I think I'll be able to move forward. I'm seeing a new specialist tomorrow and I hope he'll be able to give me some peace of mind.

6. Comment by Anna on March 27, 2006 6:34 PM permalink

Hi, friends

Lisa, Frances - I agree, that ACCEPTANCE and COPING are the key words for living with IT.

Frances - good luck with the new specialist. Inform us what he said.

Hugs, Anna

7. Comment by on March 28, 2006 8:44 AM permalink

Hi all

Anyone tried SSRI or st johns wort and had any luck with it?

Have u experienced any side effects??

Thanks!

dee

8. Comment by Tim on March 28, 2006 3:45 PM permalink

Anna -

I am so sorry to hear about your long long battle with this. But it also worries me for selfish reasons! Have you had FIVE bouts with this..? I mean, you recovered and had many months of being fine, and then it hit again? Full force? Or was it less and less?

Dear oh dear that makes me depressed to think it might happen to me too. After two months I have finally had two weeks of feeling almost normal. And have been thinking I am getting better once and for all. But what are the odds of it coming back?

tim

9. Comment by Anna on March 28, 2006 10:22 PM permalink

Hi, everybody

Tim – I completely understand your worries about IT possibly coming back. First of all – my case is not a NORMAL one. My experienced ENT doctor, who is quite familiar with the problem of dizziness and who has visited some balance clinics and training conferences on dizziness and vertigo, told me recently, that I AM ABSOLUTELY THE WORST CASE he had ever seen. So, you, Tim and the vast majority of the guys who are going through the first attack of labyrinthitis should look on statistics which show, that in 80-90% the FIRST attack will be the LAST one. These numbers, of course, are questionable and they vary from one source to another but the odds of getting IT again are not higher, than 20%.

I have my own statistics which I am constantly correcting while listening to other people’s stories around me – my relatives, friends, friends of relatives, colleagues, etc. I have names of many real people who at ANY age got it once in their lives for several months (actually, from 4 to 15), recovered completely and never had IT back. They all admitted that IT was a NIGHTMARE and actually the worst experience in their lives and that they readily FORGOT about IT when everything was over. These people were very sincere and quite relaxed talking about their DIZZY NIGHTMARE with such a person like myself – they knew my situation. The fact is – the vast majority of those people RECOVERED completely.

Tim – you are getting better and better which is the MOST important thing now. Do not think WHAT IF …. (the dizziness will never go away, or return back some day). As well you can allow yourself to think WHAT IF … (I will be hit by a car, I will get cancer….or any other BAD THOUGHT). Relax!!!!! TIME will do the job.

About me – despite the apparently bad scenario of my illness – I achieved A LOT in my life. And it is not because I am so strong – not stronger, than any of you, guys. It is just because none of us, human beings, never-ever plan bad scenarios for our own future when we FEEL HEALTHY. This illness has given me dizzy-free years of remittances – completely dizzy free years!!! I have always taken full advantage of these happy years.

Hugs, Anna

10. Comment by Frances on March 29, 2006 10:13 AM permalink

Hello everyone

Well I visited the new consultant yesterday and he certainly lived up to my expectations. He knew exactly what he was talking about and I came home with renewed hope. I'm 6 months into this illness now and he promised me a complete 100% recovery. He aims to get me back to work (part time to being with) in the next 6-8 weeks, all being well. He completely understood ALL my symptoms which range from the head down to my feet. His oldest patient was 93 and she made a complete recovery. I've now got a tailormade exercise programme which he wants me to do for 5 minutes, 5 times a day. Apparently, any longer wouldn't be beneficial to me. I've been going about things in completely the wrong way but it wasn't my fault. Without proper guidance and help how are we supposed to know the right things to do? My neck problems are causing some degree of dizziness as the blood supply to my brain is restricted and my levels of anxiety are also adding to the problem. All the horrible feelings I have in my limbs, e.g. numbness/pins and needles/feelings of electric shocks/altered sensations are ALL coming from the pressure pads in various parts of the body which are activated by the balance mechanism. I've woken up today with a much more positive attitude. I hope this gives you all some comfort too.

Frances x

11. Comment by chad on March 29, 2006 4:52 PM permalink

14 month for me and i feel pretty good...i run on the treadmill, party, etc....im still spacey head feeling though which has been the lingering part....when i drink the next day its alittle worse but im getting better......if the spacey head feeling went away i would be 100 percent

12. Comment by lauren on March 29, 2006 5:34 PM permalink

That's wonderful new Frances! This doctor wouldn't happen to be located near Dallas, Tx would he! ;) My hollistic doctor has been doing neck stretches w/ me and massage around the back of my head which I think is helping a little. good luck w/ everything. I really hope that it is true that we will all recover to 100%.....lately I have been really doubting that it will happen.

13. Comment by Anna on March 29, 2006 6:39 PM permalink

Hi, everyone

Frances - good news!!!! Frances - you are in the UK, aren't you?

It's a shame, that your wonderful consultant is located far from my state of Oklahoma, USA.

Lauren - your dear Dallas, TX is not far away from my Stillwater, OK. If you find somebody who can help you - share the information with me, please.

Everybody - stay strong and continue live your lives - one day at a time.....

Rich - the owner of the page - thank you for letting us talk to each other!

Anna

14. Comment by Rich on March 29, 2006 6:41 PM permalink

As ever, you're very welcome, Anna.

15. Comment by matt on March 29, 2006 7:58 PM permalink

Frances, That's excellent news to hear. I myself will be visiting an inner ear specialist in Austin TX (Lauren I'll keep you posted) in April and I expect some of the same news that you were given. It's encouraging to know that the numbness/tingling/electric pulses I feel in various parts of the body are related to the balance issues and not something more. Anxiety makes it worse.

Lisa, I have to agree with your outlook on things and your source of peace. (James 1:2-4 ; Romans 8:18) Email me if you get a chance, I'm excited to hear about what God is doing in your life. (cwdr0105@yahoo.com)

Blessings to all.

Matt TX

16. Comment by on March 30, 2006 12:27 AM permalink

Hey All

Frances it's excellent to hear you are feeling alot more positive. I myself am feeling alot better about my future even though I had to give up my wonderful job as a West End (london's equivalent to Broadway) performer. It was very sad, but my doctor (and Anna) said that the loud noise is what makes my symptoms worse. Now I can concentrate on getting better (even though i'm a jobless bum!!) and that makes me feel more positive. I am also glad to know about the numbness and tingles is down to balances issues as i have just started to notice that i have that feeling in my arms and legs quite alot recently.

Anyway the main thing is to Keep strong and always remember to stay postive, WE CAN ALL BEAT THIS.

Thank you Anna for your advice on loud enviroments, it helped me, ALOT!!!

Stay Blessed

Annie

17. Comment by on March 30, 2006 8:33 AM permalink

Hey Annie -

What show were you in?? I am in london too.. I am impressed you even managed to go to work with this thing! MOst times I am too tired!

Frances - If you are in the UK - is this specialist you saw in London??

Recovery to all!

deee

18. Comment by Frances on March 30, 2006 9:46 AM permalink

I'm so, so happy that I've been able to bring some encouragement and hope to you all. I mentioned this site to the consultant and it made him very sad that so many people are suffering unnecessarily, mainly due to the lack of EARLY treatment and understanding of all the various problems the inner ear has on the rest of the body. I'll certainly keep you all posted on my progress. I've just done my exercises and I'm really dizzy but at least it hasn't induced a panic attack because he talked me through the relationship of panic and dizziness. He said it would take a while to re-train my brain into thinking nothing bad is going to happen to me when I panic and the attacks will gradually subside as the dizziness decreases.

Just for the record, I live in the UK in the county of Surrey.

Frances x

19. Comment by Robin on March 30, 2006 2:58 PM permalink

Hello Fellow Labbies, This is my second bout with VL, while it's not as intense, I still wake up dizzy most mornings and fatiqued. I appetite is pretty much gone and I've lost a bunch of weight. I haven't gone back to the doctors, because there really wasn't any constructive advice they were able to offer the first time. I know I'll get better, and I've been going to work every day. Today, I had cramps in both my calves. Does this sounf familiar to anyone? I've had some good days too and I'm taking Xanax for the really bad days. I'm about 3 months into this episode. I am trying to stay positive, it went away intirely last time. But, today, I'm having a particularly bad day. Maybe I should try more vitamins, I just don't know. Any suggestions?

20. Comment by on March 30, 2006 8:26 PM permalink

which town in Surrey?

Deus

21. Comment by on March 30, 2006 9:46 PM permalink

Hey Dee,

Its was a motown show called "dancing in the streets" at the cambridge theatre, in covent garden. I'm very sad that i had to leave, but I have been feeling very positive about getting better and in a way know it's for the best. Frances, One of the hardest things I'm doing is convicing my self nothing bad is going to happen, I have gone so far, I have found it hard to leave the house, but the day comes when you start believeing that nothing bad is going to happen and it feels FANTASTIC, so hang in there and keep telling yourself nothing bad is going to happen.

Try not to worry,

In the words of the late Sam Cooke " it's been a long time coming, but a change gone come."

Peace

Annie

22. Comment by on March 31, 2006 8:56 AM permalink

Hey frances,

Im south UK / london too, please could u post what hospital/balance centre that you saw this specialist/ and his Initials, so that i may try be referred if i dont get answers soon ??

Yip annie, thats cool, these things happen for a reason,... One door might be shutting but its because we maybe had to redirect our lives a bit before another door opens..

dee

23. Comment by Kim on April 1, 2006 5:32 AM permalink

Hi all-

I'm scheduled for an MRI on Monday morning, and my problem is, I'm extremely claustrophobic. I was able to have them schedule an "open MRI", supposedly not quite as tight quarters as an ordinary one.

I know that many of you have had this done already, and I'm wondering if anyone might be able to give me a little encouragement. I really need to have this done, and I don't want to take a sedative (they offered). The thought of being enclosed, dizzy, and fighting off a panic attack is almost too much.

Anybody have any pointers on how I can get through this thing?

Thanks much- Kim

24. Comment by on April 1, 2006 1:55 PM permalink

Kim

Have a shot of brandy-it calmes the nerves and will make you relax.

Deus

25. Comment by Tim on April 1, 2006 5:43 PM permalink

Kim-

I am claustrophobic too and had an MRI 6 weeks ago. I was absolutely fine. They give you a little buzzar to hold onto while u are inside, so if u get panicky they will slide u out right away.

Also, I had headphones on with music and every so often the technician would cut in and ask how I was. Tehre is also a little window abopve your head with a mirror which caes the technicians and part of the room so I really felt as though I was safe and could see people.

So, don't worry...I was in for almsot half an hour and the experience was quite alright!

Good luck with it all.

tim

26. Comment by Anna on April 1, 2006 11:58 PM permalink

Hi, everybody

Kim - I just recently had MRI of both brain and neck - two times longer, than just a brain MRI. It took them a whole one hour to make everything done. Being in the tube - lying flat on my back - of course it made me more dizzy than I usually is. But I relaxed all my muscles, closed my eyes and tried to visualize something pleasant - sea shore with big waves, or nice wood with wind blowing, mountains covered with snow. It worked for me really well. You will also be fine, Kim!

Annie - I also lost my job because of the disease - I was a well paid high professional - engineer and researcher. It was a real "knock down". I was holding the job as long as possible and my employer and my co-workers were very-very supportive. But one day I started naturally collapsing at work from complete exhaustion. None of us should let the things deteriorate to such a degree! I have sworn to my family and to myself, that I will never-ever be so cruel to my health. It is NOT GIVING UP to the illness - it is about being WISE and CAREFUL.

Anna

27. Comment by Kim on April 2, 2006 5:28 AM permalink

Thanks - for your support and suggestions concerning my up-coming MRI.

Deus- a few months ago, I may have considered your suggestion of a shot of brandy - but not these days......... :)

Tim and Anna - thanks for sharing your experiences. Having a "panic button" in my hand, and hopefully headphones on my ears should help. Visualization is a great suggestion, I will definitely be doing it!

Anna, I know I will be fine (yikes), but its nice to hear it from someone else. Thank you.

I appreciate you all-

Kim

28. Comment by Sarah on April 3, 2006 1:38 PM permalink

Hi all Ive been suffering from what I am told is VL and BPPV for 8 weeks. This is nothing in comparison to some of you. I am a teacher, and have already missed half a term as i feel too unwell to work. I have had no advice from my GP, just that it will "go away in its own time"! On of the most troublesome symtoms for me is this heavy head I often experience. It feels like my head has a brick in it!! I have trouble holding my head up and feel that all I can do is sleep to try to relieve it.It seems to get worse when I go out for a walk. The symptoms get so bad I have to go home. I then get really depressed because i cannot do "normal things" Does anyone else have this? Also, im not sure how long i should wait before I should ask to see a specialist- any advice? Frances- Im really pleased for you- it does sometimes feel as if a 100% recovery will not happen. Your story gives me some encouragement! Rich- its great to know that I am not alone - carry on the good work! Sas x

29. Comment by Lisa on April 3, 2006 7:53 PM permalink

Frances you're welcome. I hope the Dr. will be able to help you. But if he/she doesn't remember there is another option. My prayers are with you!

Matt TX, I will share soon.

Many blessings to all

Lisa

30. Comment by Alan on April 4, 2006 12:02 AM permalink

Sara I am also a teacher who has been diagnosed with VL. I missed half a term too and have suffered for 4 months with the same symptoms. I get heavy, tingly head, and can feel awful when out, and nauseous. Sometimes I have slight tremor in my hands and even teeth. My vision feels strained and even bit sore at times. Doctors just say it will go in time. I am trying Gingko and taking little else. I find walking good therapy, even though when out it may feelworse. The body has to re learn things and realise its ok. I have got a lot better recently, and have had good days. Crowded places, noisy places, stress all trigger that unwell feeling. I am however more positive than I was, things do settle down a bit eventually. What I need to know is will flying cause me problems? Does anyone fly with Labyrinthitis? All thwe best. Alan.

31. Comment by Kim on April 4, 2006 3:24 AM permalink

Hi all-

Well, I made it through my MRI today, only to be told 3 hours later by my GP, that I have to RE-DO it again tomorrow(no kidding).

I can't tell you how hard it was for me to get through the first one, I don't how I'm gonna do it again.

They were very vague in explaining why, which is very frightening. They said something showed, but they didn't think it was related to my dizziness problem, and they want to do it again with contrast. (I didn't have contrast with this first one.)

It doesn't make sense to me at all. Has anyone ever had to re-do an MRI and have it come back ok? I'm terrified. I can't stand being in that machine, and now I'm terrified of what they're finding !

I'm supposed to hand-carry the results into a neurologist that I've never seen before on Wed.

Sorry if I sound like I'm whining - I'm not. I just am so frightened by this whole process.

Kim

32. Comment by chad on April 4, 2006 9:24 PM permalink

1 year and 2 months....back to my normal lifestyle but not normal life.....drinking on weekends, running on treadmill etc.....But But doing this all with the spacey head feeling....and way more tired than i used to be........but after so long i just thing u get sooooo used to it nothing bothers u not even the anxiety......

33. Comment by Anna on April 4, 2006 9:39 PM permalink

Hi, all

Kim – this RE-Do happened to me several times with my mammograms 10 years ago and 2 years ago. They usually first do so-called screening mammogram which is always questionable because the contrast of the image is not enough to see much detail. If they see even the slightest sign of something – they send women to RE-DO on equipment that has more contrast. Both times I was scared to death by their “findings”. In fact both times – there were NO FINDINGS – just not enough contrast imaging. Both times re-dos showed that everything was OK. Kim - With your MRI - first of all I have a reasonable question – why did not they make your first MRI both without and WITH the contrast. Usually they do it both at the same procedure one after the other, because contrast imaging gives much more information. Maybe – they just forgot? Also – this is the first MRI in your life (it looks like that), so they really do not have any of your brain image to compare with (for example – your MRI taken several years earlier). It is really hard for them to tell what is NORMAL and what IS ABNORMAL from the first impression. Brain images of even absolutely healthy people can VARY significantly. Also technicians who did your MRI could screw up something performing the procedure – this happens VERY OFTEN (they will never tell you about it!) I worked as a scientist-researcher in medical imaging field. I know that there are a lot of things that prevent getting the RIGHT image and the RIGHT diagnosis form the first attempt. Kim – the best thing is to TRY STOP WORRYING for now – they did NOT tell you something horrible. I completely understand your anger and frustration. You really have to put all of your strength and go get the image with the contrast. It should be shorter, I guess. If you could survive your first MRI – you will survive the second. Best luck – and keep us informed. I am myself awaiting the results of my third MRI imaging (1995, 2004, three days ago). It must be a special doctor – radiologist who “decipher” your brain images in many slices. It takes two to three working days to get the results from such a specialist. Kim – you said that they send you to RE-Do the MRI after 3 hours. I strongly suspect, that it was their TECHNICAL MISTAKE, not “something wrong” in your brain.

Everybody, keep strong

Anna

34. Comment by Tim on April 5, 2006 2:50 AM permalink

Hi all -

Chad - tiredness is my main complaint now too. More tired than ever! But better than feeling like falling down.

Hopefully it eventually goes away.

Anna, thanks for all your advice on this website. It has meant alot.

tim

35. Comment by Sarah on April 5, 2006 10:51 AM permalink

Hi Alan- thanks for your help. i will try to walk more often. After having some bad experiences whilst out it is hard. Its also helpful to know that im not the only one with a stupid head! I am taking Prochloperazine. Have you found the Gingko helpful? cant help with the flying issue- sorry. I hope you are feeling better soon. Kim - sorry to hear about your MRI. Im sure that it will be fine. I felt very claustrophobic when i had mine. I agree with Anna. If you survived one, you will make it through another. You are a strong person. Anyone who suffers from what we have has to be right? Keep strong everyone, your words are helping me to do so. Sarah x x x

36. Comment by Frances on April 5, 2006 12:29 PM permalink

Dee/Annie

I'm attending the Mayday Balance Clinic in Croydon and seeing Mr Woods. He's absolutely fantastic!. Hope this helps if you don't get any joy with your own hospital/GP.

Well it's been a week since I started my new VRT exercises and I'm really dizzy and sick. I'm much more positive though and I know that in the long run it's going to make me better by inducing the symptoms. I haven't had a panic attack for a week now and I'm not so anxious. I keep thinking of what the specialist said to me and it's a case of mind over matter.

Deus - I'm in Woodmansterne, Surrey

Hope you all have a good week.

Frances x

37. Comment by Alan on April 5, 2006 8:59 PM permalink

Sara thanks for the reply, gingko seems to have been found helpfull in polish trials as it improves blood flow. get specialist advice as soon as possible as GP's know little. My GP said yesterday I should be over VL after a few weeks..yet look at all the comments here!Also depression and anxiety seem to be the worst part of all this esp if you have to go somewhere busy or noisy. Does anyone else have slight tremor? is it anxiety or what? Also have funny vision at times like painful when move eyes about, even slight shocks, other days feel nearly normal.

38. Comment by Anna on April 5, 2006 10:06 PM permalink

Hi, everybody

Sarah, Alan - some people on this webpage tried Gingko Biloba on a regular basis for a long time. It is not a "cure" but some people see improvement with time. As for me - I just told myself one day: "Go get it and take it. It won't hurt". I am still slo-o-ooly improving.

Chad - I have been watching your struggle during all those months. I think you still have a great potential for further improvement! Look - your life has ALMOST returned to its previous quality, you are not worried any more, and you really enjoy you life again. That is exactly what the word "recovery" means!!!

Frances - I got my long-term Social Security Disability pension. I stood for my rights and I got JUSTICE. Not happy about my illness and about being "disabled" but at least I am bringing a little money in the family budget.

Hugs,

Anna

39. Comment by Anna on April 6, 2006 12:03 AM permalink

Robin - somehow I missed your post about the second bout of labs after complete recovery from the first one. I remember your struggle through it. Keep my fingers crossed - that this second round will be shorter.... At least in my case, the second bout was somewhat shorter, than the first one, and both ended up in complete recovery. Why does IT come back????!!!! This is the question I asked myself millions times, I searched everywhere, I thought, analyzed scientific information, analyzed my own and other people's experience. Dormant virus sitting somewhere in nerve cells? Possible. Decompensation i.e. our brain - recovered (compensated) after the first bout of the illness - "foregets" how to work with the impaired inner ear (decompensates)? Does not look like a serious theory. Some new virus which attacks "the weakest point" in our bodies - the inner ear? This looks like a true. If viruses are most likely the cause of our sufferings and recurrences - we have to keep our bodies as strong as possible in everybody's unique situation. Robin - you are right - vitamins, healthy diet with A LOT of vegetables and fruit, eating small meals in short intervals, of course - fats, sweets, salt - in restricted amounts, exercises -not to the point of exaustion, PLENTY of fluids -it prevents muscle cramps.

Everybody knows these healthy lifestyle advises -not all of us follow them in our dayly routine.

Anna

40. Comment by Beata on April 6, 2006 2:12 AM permalink

allan i am a flight attendant I have had this for three years now. Flying does not make it worse for me no symptoms on the plane. when I get off the plane I have this full ears feeling and full head. I still have this off balance feeling and I am more tired than ever before does anyone know why ? I am soooooo over this just a few days ago i just cried I just want to be normal again. In fact I found out that one of our flight attendents had this she committed suicide and left two little kids behind. How much of this up and down can one person take?

41. Comment by Kim on April 6, 2006 5:39 AM permalink

Hi-

Well, I made it through my 2nd MRI and met with the neurologist today. The MRI came back ok.

Anna - Thank you for your post explaining the reasons sometimes a second one is necessary. You were ABSOLUTELY right, the first one just didn't show enough, and the contrast made the difference. I believe my GP should have ordered contrast to begin with, but thank you, your post gave me the courage I needed.

The neuro gave me VRT exercises to do 2x day, he said I had some "jumpiness" in my eyes. He also started me on a low-dose of inderal for my migraine problems (said it will also lower my blood pressure, which has been up since all of this started.)

Tonight, my left ear is sore to the touch, exactly how it was the week before all of this started - anybody else have painful ears ?

Take Care- Kim

42. Comment by Alan on April 6, 2006 8:35 PM permalink

Beata hope you soon feel better again, dont let depression get you, try to keep going and chat to friends as much as possible. I went out today felt wobbly and nauseous but hey was glad to get out and see things and go places. Guess your still working so thats good too, all the best. my docs say should get over it some time. Alan

43. Comment by on April 6, 2006 8:54 PM permalink

Hi All

Sadly I see quite a few new faces.Labrynthitis sure seems to be getting around.

Well my update so far:

8 months into this.Have been 98% for the majority of march until I got a terrible headcold, blocked ears, head , nose the works and it has knocked the back out of me and naturally has made my dizziness worse which is sooo annnoying as i start back to work on monday.Sure hope I have recompensated by then...I really have been feeling preety good till then.Lets hope I dont get Labs in the other ear!!!

So my situation is much better than it was 3 months ago.I only started to see some light in month 6...so people who havent reached that point dont worry....improvement will come.

Its really annoying I cant make 100% for just one day...I hope in 4 months, by which time it would have been a year I can post a full recovery!! I find my main syptom now is vibrating vision when I focus hard on something.I heard this is one of the last symptoms to go.Anna is this true?

Also Anna how did your bouts finally end??

....did they end without you noticing.I am really curious now how to recognise the final phase of this junk which i do think I am close to.

Good to see some people are making progress Frances, Allan , Anna etc

Chad I noticed you posted again and it still hasnt gone....youve been here for ages!! I think this year will be the year it gradually goes away.Atleast it has IMPROVED for you and you are LIVING a normal life.Thats all good fella and the way it should be.I am sure you will be fine.We should all try and enjoy life and make the most of it otherwise you just start getting depressed and wonder where all the time has gone.Remember always that this thing is not life threatning and does end.Hope and perserverance will get that.Keep up the exercise, VRT etc ....its all conducive to a faster recovery.

A fast recovery to all

Deus

44. Comment by Anna on April 6, 2006 10:05 PM permalink

Beata - You asked: "How much of this up and down can one person take?" One person can take A LOT!!! I have been having IT since I was 20 years old (relapses/remittances pattern, 5 major bouts), and I am 54 now. 34 years with IT.

Everybody - NEVER-EVER, please, think about hurting yourself! I have to admit, that I DID have suicidal thoughts at the worst times of IT. Remember - I was bedridden for several months at a time and I had to resign from my great job in December, 2005. I always tried hard: to CALM DOWN as much as possible, to ACCEPT my limitations and to BE PROUD OF MYSELF for being STRONG. I am still getting better - unbeleivably slowly, though. It is a big heavy thunderstorm coming to our area in Oklahoma, with tornado warning. And I am not in the bed dying from headaches and ear pressure, only slightly off balance!!! For the first time in 28 months! (touching wood)! I am tearful...

Anna

45. Comment by Sam on April 7, 2006 1:22 AM permalink

Chad,

In my experience Drinking only makes this thing linger for longer. Just stop the drinking for a little while man and see how it affects you.

46. Comment by Anna on April 7, 2006 4:43 AM permalink

Deus - I had 4 full (100%) recoveries in the past. I am on the 28th months of my fifth relapse (bout) of a complicated recurrent inner ear disorder. Although I am FA-A-A-R from normal - I am HAPPY, that IT IS STILL GETTING BETTER!!!! I can talk to my children on the phone for 10-15 minutes without head and ear aches, I can work on the computer for 20 minutes at a time without spinning of the room or "floating" of the screen. I still cannot stand crowds and noisy places. I am off balance -like I am drunk - most of the time, I move rather slowly keeping my head in one position and looking down, my eyes are half closed when I feel tired (and I feel tired almost all the time except early in the morning - after a good night sleep).

It FEELS SO GOOD being in the end of this horrifying tunnel. Looking back I cannot believe, that I have made this way..... That has been the hardest ordeal in my life....

Wish you all - PATIENCE.

Hugs, Anna

47. Comment by Tim on April 7, 2006 3:54 PM permalink

Anna -

I feels o bad for you. I truly hope this gets better once and for all. Makes my little ole 2 month episode seem like a breeze. Buit of course it hasn't been.

I think we all realize how strong we really are having gone thru this.

Chad - I agree about drinking not helping. A glass or two of something is fine for me, but if I go out and try and have a couple martinis and copious quantities of wine with friends I notice I wake up feeling a bit dizzy and off balance the next day.

tim

48. Comment by chad on April 7, 2006 3:57 PM permalink

constant internal shaking is one of my biggest symptoms...im always shaking....i also read that on the main page...anyone else feel this???

49. Comment by Emily on April 7, 2006 10:59 PM permalink

hi my name is emily and im 18. for the past 5 months i have felt like complete crap. i have ringing in my ears that WONT go away i feel as if i am dizzy basically almost 24/7 when i move i feel as if something is shifting. im scared of everything and it's so hard for me to leave my house! i also get body twitching tingling, eye pain, head pain, jaw pain. everything! i also constantly see black dots floating and purple dots in the distance. another thign is a get this really bad pain in my head that comes and last foor a couple of seconds and than goes away again. it's so frustrating i can't take it anymore. i have been in and out of doctors offices all they do is tell me to get a therapist. i don't know what to do. i feel like i've lose my-self! i don't know who i am anymore! i just want the old me back!

50. Comment by chris on April 8, 2006 2:35 AM permalink

hey all

im 7 months into this and im starting to notice that my bed and the floor does not move nearly as much. laying down in bed is so relaxing now. i also just did a 4 hour show with my band on saturday and made it all the way through and slept good that night. the next day my ears felt weird and my throat hurt but that was normal even before i got this ear thing.

51. Comment by on April 8, 2006 2:36 AM permalink

anna-what were the last symptoms you had? how long did they take to feel 100%

chris

52. Comment by Frances on April 8, 2006 11:38 AM permalink

Hi everyone, well I'm just past the 6 months with this now and since starting the tailormade VRT exercises just 10 days ago, I'm now starting to feel a difference. The nystagmus (eye jumping)is pretty much under control now for most of the day and when I look around me everything is still. I think once my neck starts to loosen up I'll feel a whole lot better. The sickness is starting to subside too as my balance is improving. It's the turning exercises which are really making the biggest difference to me I think. I'd been doing my own version of VRT for quite a few months, whilst waiting for proper advice from a Specialist but none of it really worked for me until I saw my new Specialist 10 days ago. I only wish I'd seen him months ago, I might not have had to suffer for so long.

Deus, I'm really happy for you and I hope I continue to progress in the right direction as you have.

Anna, you certainly have come a long way on this very painful journey. You are in my thoughts.

Frances x

53. Comment by Sarah on April 8, 2006 12:58 PM permalink

Having a crap day today. Just when you think things are improving, you wake up feeling dizzy and heavy headed. I am trying to be positive, but I find that as time is going on it gets harder. I have decided to go part time in my teaching job. I dont think the huge work load that I have has helped me. Who knows whether stress is a casual factor. All I know is that I have had this twice in the past 3 years ( since I have worked in my current college!). I think I am improving overall- some better days followed by a couple of rubbish ones etc, etc. I really want to go back to work and be normal again, but until I feel better I just dont think I could drive or deal with large groups of students!! Still have constant tinnitus which is really annoying. Will this go as I improve? Hope everyone is ok. Sorry to moan, but I cant keep taking it out on my boyfriend!!! Emily- I really understand your frustration. It is very hard to stay positive. Remember that life will improve and that you will get better. The first time I had it I thought it would never go and it did eventually (about 3 months). DONT GIVE UP. Just think of how good you will feel when it has gone. As difficult as it is I always remember the words of my doctor- "positivity aids recovery". I did want to punch him initially when he said this, but I later realised that he was right.Have your down time- shout, cry- whatever helps, and then pick yourself up again. You will appreciate life again and feel healthy. Mine has returned ( 2 months so far), and I do feel really depressed sometimes, but I know it will go and how much more you appreciate life when it has. Much Love Sarah xxxxxx

54. Comment by Garry on April 8, 2006 2:31 PM permalink

I've recently been told by an ENT he suspects that I have Labyrinthitis.

I'm 31 years old, and consider myself to be in good health otherwise, recently stopped smoking (Jan1st), although can go through about 5 bottles of wine a week My story.

Early Jan 2006. Feeling unbalanced, groggy, strange feeling of falling when going to sleep, after a days, I woke up in the morning with a fuzzy feeling in my head, when I opened my eyes the room was spinning, I attempted to get up and get some water, but could not walk without holding the wall due to the dizziness. After getting the water I got back to bed (still spinning) and managed to get back to sleep. When I woke up the spinning had stopped although my eyesight was slightly off.

I have not felt the same since.

My symptoms.

Lightheadedness, especially in the morning. Mild fatigue. Mild pain in right ear which sometimes feels as though it’s vibrating. Constant feeling of being unbalanced, various degrees of severity. Have started wearing reading glasses all day. Muscle spasms / Twitching especially in right thumb (could be RSI - Due to constant computer use over years) Random pains all over like a single pin being inserted, pain only lasts for a few seconds. Walk has changed, like limping without pain, ENT said this is due to the balance problem. Short term memory problems Short concentration span. Anxiety and anxiety related symptoms.

I've recently had relaxation acupuncture and massage, it seemed to help, have also started reading a book on reflexology.

If anyones intrested, I've setup a forum (without any annoying adverts) for labs and inner ear disorders)

http://forums.v-menu.net

55. Comment by on April 8, 2006 8:20 PM permalink

Hi Frances

Good to hear about your exercises and they are making you better.Mine arent tailored to me , but I have a programm of 25 exercises I am meant to follow until each one doesnt make me dizzy.So I guess they are tailored in a way....

I recently caught a cold and have dropped to like 50% from my 98%, but I am sure I will get better again.Just annoying as Im back to work on monday!Great timing!

What exercises do you have?Any good ones for gaze stabilization?

Cheers

Deus

56. Comment by Chris O. on April 8, 2006 11:55 PM permalink

Deus.

I am having trouble with my eyes as well. Can you describe your exercises?

Thanks

57. Comment by on April 9, 2006 2:33 PM permalink

Chris

Hold a card in front of your face at arms length and move you head left and right or up and down without taking focus of the card.This is what I do.

Deus

58. Comment by Anna on April 9, 2006 5:41 PM permalink

Hi, everybody

Chris - Wow! 4 hour show! You are doing quite a progress!!! As far as I remember, the last symptom to disappear in my first relapse was blurred vision - especially while reading. This feeling was long and stubborn, and it made me crazy - I was a college student at that time.

Chad, Garry, and other young guys who mentioned DRINKING as a good thing to relax, or just a pleasant habit. I strongly disagree!!! Keep in mind - ALCOHOL of any type is TOXIC to delicate inner ear structures - it is a PROVEN SCIENTIFIC FACT. I, personally, like a glass of good wine during remittances (ocasionally). But NEVER during relapses - it is a big NO because even a couple sips of wine send me rocking and nausea.

Frances and everyone - thank you for THINKING about me. I am trying hard to gain my remaining BALANCE (whatever is left). I am tired of the struggle, but I do not have any other choice except - KEEP ON GOING.

Deus - what kind of exercises do you do? Where did you get them - on-line?

Anna

59. Comment by on April 9, 2006 6:02 PM permalink

Anna

Your ENT or Specialist prescribes them to you. . I seriously suggest that if you have not got any, go and see your balance doctor and get doing the exercises.They will speed up your recovery and shorten your struggle.

Deus

60. Comment by chris on April 10, 2006 1:58 AM permalink

hey everyone

i caught a cold and im not too happy about it. though i know its normal to this thing and its making me feel better knowing people do get over this and its a temp problem. i do know im making progress and that 4 hour show proved it. i can't wait to get my life back. i am starting to realize that im learing alot and growing alot through this illness though it stinks now.

61. Comment by kim on April 10, 2006 7:21 AM permalink

Hi everyone -

I have a list of balance and eye exercises my neurologist gave me to do 2x day. They are all very simple, and yes, they do stir up the dizziness, but thats all the more reason to do them.

I'd be happy to post them if anyone is interested.

Kim

62. Comment by Frances on April 10, 2006 11:26 AM permalink

Deus/Chris

Here are the gaze stabilization exercises for you both and anyone else who has a problem with vision. By the way, nystagmus is the last symptom to go, apparently.

GAZE STABILIZATION

-To be carried out 4 times a day in a safe envoironment, in a standing position, with the target at arms length.

-Each exercise should be carried out 20 times, at a speed that ensures the target remains in focus at all times.

1. Hold target in front of eyes and move from side to side without moving head.

2. Hold target in front of eyes and move up and down without moving head

3. Hold target in front of eyes and move towards and away from nose

4. Hold target still in front of eyes and move head from side to side, without moving the target but maintaining gaze on target

5. Hold target still in front of eyes and move head up and down, without moving the target but maintaining gaze on the target

You are supposed to do this every day, there should be an improvement after a few weeks. Don't worry if it takes longer, it was 5 months for me.

My 'tailormade' VRT exercises are mainly lots of bending and turning which really does bring on the dizziness. It's vitally important that you spend at least a couple of minutes loosening up your neck before doing ANY exercises. Here are just a few:

TURNING EXERCISES

Sit down, then stand and turn round and sit down again. Repeat in the opposite direction.

Whilst standing, turn round on the spot and then in the opposite direction. First with eyes open, then shut.

Whilst standing, bend forwards from the waist and then straighten.

Whilst standing, bend forwards from the waist and then turn the upper body to look behind you, both directions.

Whilst standing, link arms with someone, or use maybe an umbrella, and make a wide circle, then in the opposite direction.

Each exercise should be done 5 times and for just 4 times a day. It wouldn't be beneficial to do them any more often.

I've been battling for 6 months now but since getting these VRT exercises, just 10 days ago, I'm certainly improving and I hope you all do too.

Frances x

63. Comment by Beatle Mark on April 10, 2006 4:15 PM permalink

Hi all.

I'm writing this to give all hope. I was a terrible mess when this started 14 months ago and stayed that way for about 11 of those months. Then the symptoms began to gradually subside (and I mean gradually). I am feeling very, very good today and have many good days mixed in with some bad periods. But not nearly as bad as last year. It is a long and gradual recovery but it will happen.

Try to cope and try to find someone who will support you through this.

64. Comment by Alan on April 10, 2006 9:23 PM permalink

Chad that shaking is one of my last to go symptoms. I feel shaky inside and my fingers tremor even my teeth a little! docs want me to see neurologists so they may not know people with this can get shakes? My other problem seems to be wobbly balance, but lots of other nasty symptoms much less after 4 months. all the best.

65. Comment by Anna on April 10, 2006 10:01 PM permalink

Frances - thank you for posting the exercises. Gaze stabilization exercises - that is what I am doing now. May be I have to be more diligent and persistant with them.

About turning the head, or bending over - In my case - I have to be really careful, because I have a recurrent perilymph fistula (PLF) which opens up with violent, fast or sharp movements. Active PLF brings symptoms similar but even more severe than those of initial viral labs.

Deus - thanks for the advice about looking for VRT tailored for me. The problem is, that any awkward movement can bring the PLF (actually - tear in the oval and round windows membrane) back - and... I am at the BOTTOM again.....

Anna

66. Comment by alan on April 11, 2006 11:21 AM permalink

Anyone else feel very tired and wobbly shaky and lacking energy especially in the mornings? I feel depressed about my lack of energy. I am 4 months into this. Doc says do all the physical things I can. The good thing is the eyes have gone back to near normal, so should be more grateful.

67. Comment by Sarah on April 11, 2006 6:08 PM permalink

Frances- thanks for the exercises. I am due to see a neurologist soon, but I will try some of these until then. I drove my car today. Only up the road and back, but it felt like such an achievement. Still having probs though and have been getting very frustrated recently. Want to go back to work, but still struggling too much! Someone mentioned painful ears. I get this particularly when sleeping at the mo. They are painful to the touch for fairly long periods of time. Not sure if its a sypmtom or not. I would just like to say that although I dont leave many mssages i frequently read all your messages. Your words certainly give me encouragement and hope. Thanks!!!! Sarah x x x x

68. Comment by Anna on April 11, 2006 10:06 PM permalink

Hi, guys

I drove my car to and from my neurologist today! My mother sat next to me and looked to the right when I looked to the left (while yielding). We made it safely together. I was proud of my acheivement and reported it to my neurologist. He said, that my MRI - the third one since 1995 was normal, and blood tests for Lyme disease (viral) and another (autoimmune) disease - myasthenia gravis - were both negative. Poor Anna!!!!.... The same old thing again and again - my DISABLING ENEMY IS INVISIBLE, INDETECTABLE (by tests) and thus.... INCURABLE. I am not even sure any more, that negative tests mean good news.... On the other hand - I DROVE MY CAR for 10 minutes! I have not done this from July 2005! No, definitely, I should not complain.

We will ALL have better days.

Hugs, Anna

69. Comment by Tim on April 12, 2006 1:39 AM permalink

Alan -

Yes, I am extremely tired most of the time and I am into my 3rd month. But I am 80-90% better with all my other symptoms, so i am not complaing. But I think I am MORE tired now than I was when in the thick of the labs/bppv/

Am told it should wane though like everythign else. Just praying I dont have a relapse of other symptoms.

tim

70. Comment by on April 13, 2006 2:49 PM permalink

8 1/2 months....was doing well until I caught a cold whcih has set me back for a few weeks.Hopeully gradually recompensating.Thought I might beat it in a year.Unfortunately looks like it could be up to 2 or 3 years.Urgghh.

Deus

71. Comment by Sharon on April 13, 2006 3:37 PM permalink

Hi all, I first had an attack on VL after flying from South Africa to the UK in 1997 - it has recurred at intervals, with no-one in the medical profession here (ENT, Physican, Homeopath) really offering much hope - time is what I usually get told, but I find the whole experience very debilitating - thank goodness my husband and I work from home, so don't have to drive to work ... but some days I really can't function. I have been reading your comments and although I don't have vision problems often, I can't watch anything on tv that flickers or has lots of movement when I am having an 'attack' .... generally after 9 years of this on and off it would be good to find a 'cure'!! I will try Ginko Biloba and walking! Hope someone finds a cure soon - there seem to be so many of us with this problem. All the best! Sharon

72. Comment by Emily on April 13, 2006 6:23 PM permalink

thanks so much sarah. i just feel as if i will never recover and feel like my old self again and it's really hard for me to think possitive.

73. Comment by chris on April 13, 2006 7:32 PM permalink

deus

the cold set you back and that seems to be normal....i just had one too and it really made me feel so off and bad. i was doing better too. now after the cold is gone im starting to do better again.....i honestly don't think your going to have to go through 2 or 3 years of this. time is what it takes but that doesn't mean you will have it for years and years. like me....anxiety is a huge thing and can keep you from getting better faster... anxiety being thigns like thinking your going to have it for years. i constanly worry if maybe the docs overlooked something. i know its not true and i know whats wrong but i can't help it.

74. Comment by molly on April 14, 2006 2:12 AM permalink

Hi folks, I am new to the post and have spent days reading everyone's stories starting from page 1. It feels like I know Anna, Frances, Chris, Deus, Chad, so well. Thanks for sharing your lives, I have really learned a lot from you. Amazing that so many people suffer with this. On April 24th it will be 6 months. I pray like everyone else that I will wake up one morning and be free to live again. I know, it sounds melodramatic, but all I wish is for my life back again. I have been using Ginko Biloba for about 2 weeks. I was severely depressed for months, but have reached a stage where I want to try and enjoy life as much as possible. I have been using Ginko Biloba for 2 weeks. I can't say that I notice a difference, but I've heard it can take 8 weeks to have an effect. Even though I can't tell a difference, oddly enough, it is something else to put on my list of things that I have tried...in some weird way I feel like this gives me some control. I have had tests like so many others, MRI, ENG, Cat Scan, etc. and told that it could be Labs but will eventually go away...that was in November 2005.

75. Comment by on April 14, 2006 4:05 AM permalink

Hi everyone, I've been reading your posts for sometime now and finally decided to join in. My story goes: Tuesday,August 31,2004, came home from working the night shift feeling fine when all of the sudden I got a loud roar in my right ear and then some ringing and then my ear went dead. I mean zero hearing! At first I thought it had just plugged up as the weekend before I had caught a slight cold which I took some Claritin D for. I've struggled with sinus problems since having a hysterectomy about 16 years ago. I had a sinus surgery 2 years prior to going deaf. Can't help but think all this is somehow related. The deafness continued all day so when my husband came home we agreed I should probably see the dr. They got me right in and all she said was that I had alot of fluid in my ear and that it was probably an ear infection. She gave me an antibiotic and said I'd feel better in a couple of days. I wasn't experiencing any other symptoms at that time so I believed her and finished out my work week taking her pills believing I would indeed get better. We had planned a trip to Reno, NV that next weekend and I didn't feel sick so we decided to go. BIG MISTAKE! Arrived in Reno on Friday and I was feeling kinda funny- sort of off is the only way I could describe it. Saturday morning we decided to go to Carson City to do some antiqueing. The elevation there is considerably lower than Reno and the minute I got out of the car my whole world starting spinning out of control. I couldn't look at anything. This was at about noon. We went directly back to our hotel. I managed to keep from vomiting until about 6:00pm and continued to get sick until 9:00pm when my husband figured I needed to go to the er. They let me sit in a wheelchair in the waiting room until 3:00am. ( I was competing with drug overdoses and a stabbing due to the burning man festival being held that weekend.) Tried to do a catscan - couldn't stop vomiting so they gave me a shot of something and then finally was able to do the scan. Nothing showed up so the er dr. said it was probably labrynthitis and when I got home I should see my dr. immediately about my hearing loss. Gave me phenergan for my nausea and meclizine for the vertigo. Worked well enough to get me home. Went to my dr. and she then decided that she didn't treat me correctly so she sent me to a hearing center. Pretty much a total loss. Sent me to the ent who did my sinus surgery and he confirmed that my hearing in my right year was gone. He said I had no excess fluid and that it was not Mienier's disease and was sure it was labs. Had an MRI and it came back fine. He prescribed 80 mgs predisone for 2 weeks to see if it would reduce the inflammation and get my ear to work again but no luck. Went on a medical leave from work (no pay) for six months and tried to get better but after struggling with the balance issues, brain fog, pressure in my ear,and not being able to drive, let alone having single sided deafness, I gave up the job and decided to stay home and take care of me. It has been 19 months since all this happened and not much but the constant vertigo has changed. I am getting used to it I think. The only time I have a dizzy is if I move too abruptly. I take antihistamines and decongestants almost daily and it seems to help. These terrible weather systems that keep pounding the Northwest aren't helping much and I'm really looking forward to summer. It seems as though my symptoms aren't as bad when the barometric pressure is up. Thanks to all of you for sharing your experiences with this beast. I felt very alone with this as I and no one I knew had ever heard of this before. Keep positive thoughts that we will get better. All my best, Lauren from Washington State

76. Comment by deeee on April 14, 2006 10:30 AM permalink

Hi Lauren from Washington State,

Welcome!

We will all get through this!

Have a good easter weekend all

dee xx

77. Comment by chad on April 14, 2006 4:13 PM permalink

WHAT DOES EVERYONE THINK I SHOULD DO,,,,I HAVE BEEN TO THE ENT I RAN THROUGH ALL THE TESTS THEY TOLD ME MY RIGHT HERE IS DAMAGED ETC....ITS BEEN LIKE 1 YEAR AND I WAS THINKING IF I SHOULD CALL BACK OR NOT...ALL THEY USUALLY DO IS SEND ME TO VRT.....AND I RUN AND DO EXERCISES BY MYSELF ANYWAY.......ANY ADVICE

78. Comment by on April 14, 2006 5:32 PM permalink

Chad

When I hit one year (which will be in 3 1/2 months) unbelievable!!! I am going to ask my doctor if I have Migraine associated Vertigo as I get a lot of headaches with this crap.Its worth just exploring other options- it wont hurt.

Although to be fair it could just be normal labs, it can take up to 2 years or more to clear....

Deus

79. Comment by Anna on April 14, 2006 8:11 PM permalink

Hi, everybody

Molly, Sarah, Lauren from Washington State, Alan, other newcomers - sorry that you are on this website being ILL. But it is GOOD and COMFORTING that we are able to SHARE our sad stories with those who really understand. There is a Russian proverb that in my poor translation sounds something like this: "A shared grief is half the grief."

I like what Molly said: "I have reached a stage where I want to try and enjoy life as much as possible." Just want to add from myself - Do NOT wait for your PREVIOUS life to return. Most likely, it WILL come back - only not as soon as you expect. No matter how dizzy and unstable you are - ENJOY your CURRENT life as much as possible.

Have a good weekend.

Anna

80. Comment by Tom on April 15, 2006 3:52 AM permalink

Hello again everybody,

I've been too busy to keep on top of things on this board for a couple of months now, but last night I did a thorough read through all I've missed. Wow! there's a lot in there and it was a bit of a challenge to get through 2 months all in one go. ( not that it wasn't interesting; it was, - just the woozy head thing )

Anyway, I noticed something that I've just got to comment on. About a month ago Beata, an airline attendant, wrote in to say that she thought she may have cleared up an attack of Labs. with GRAPEFRUIT. This I think is very significant. I haven't yet actually ingested a lot of this stuff as it's ( like she said ) really foul tasting BUT this may change real soon! What I've been doing is using G.S.E. ( Grapefruit Seed Extract ) topically in various ways, and as a mouth wash.

I've found it to be REALLY, UNEQUIVICALLY EFFECTIVE. I'm a very logical person, not easily swayed by the promise of ' wonder cures ' but this one deserves our attention.

O.K.; - it's been discussed that having infected teeth pulled might be of some benefit to our condition, as the near proximity of all this bacteria to the balance centres would suggest this be done. I totally agree. I've found that tooth aches will lead to sore throat and even coughs as the infection can migrate easily from the mouth. It is very unlikely that these same bacteria would not climb the pressure compensation tubes that lead to the middle ears. I know what some of you are saying: " not bacterial, not bacterial !" Amigos, let's face it; we don't know what the hell is the root cause of this. I'm thinking: " Bacteria very likely, Bacteria possible ". I had a very bad toothache way down in Mexico last year and someone suggested that I try their Grapefruit seed extract. I put 10 drops in 8 ounces of water and held and swished for about 20 minutes for 4 days in succession. I then went on a road trip to find a dentist and she was absolutely amazed that I had not a TRACE of infection in my mouth despite the mess that my tooth was obviously in! She forth-with yanked the tooth and didn't even give me an antibiotic as a follow-up. My throat cleared up and a cough I'd developed disappeared. So I became intrigued with G.S.E. ..............

On the bottle it gave directions for mixing solutions to apply to the ear canals to clear up ear ache. One was several drops in half an ounce of alchohol and the other was the same amount in glycerine. I often develop an ache deep in my left ear so the next time that happened I tried the alchohol mix in the ear canal. It stung way too much and I don't recommend it. I found the glycerine mix to be an excellent treatment. I've often used drops in the past that were prescribed by doctors for ear aches, that seemed to have little or no effect on my ears. In fact, they sometimes seemed to make things worse! This G.S.E. concoction WORKS and never seems to exacerbate the problem. I have no idea how infection which disturbs the balance centres in the middle ear can be treated by an anti-bacterial in the outer ear canal. It just works and I'm passing it on to anybody else who may have balance problems AND dull aches in the ears.

People use this for intestinal complaints, cuts, decontaminating cutting boards, .......... all kinds of stuff. Can it be used internally for clearing up an attack of Labs.? I'm assuming that the extract I'm used to is going to have a similar action to the whole grapefruit put through the juicer which was recommended by Beata. I am trying it internally and started the first course of treatment this morning. ( 10 drops in 8 ounces of water, - twice daily ) The drops I'm using are made by ' Nutri Biotic' and come in a 4 oz. squeeze bottle.

By the way, I'm still a bit dizzy but haven't had an attack of vertigo since early last summer. Ear aches come and go as usual but I'm controlling them pretty effectively with G.S.E. Also I avoid cold winds and take Ginkgo regularly. I'll let you know how the grapefruit experiment goes. Fond regards, Tom

81. Comment by Anna on April 15, 2006 7:21 PM permalink

Good morning, everybody

Tom - good to hear from you. This thing about grape fruit juice - It also grabbed my attention when I read Beata's post. I think - if it helped Beata - it can help some of us. I am also going to try it - the same amount of GSE as Tom advised twice a day. Alongside with Ginkgo which I have been taking for about a year now.

Anna

82. Comment by CO on April 15, 2006 9:24 PM permalink

what is GSE?

83. Comment by Anna on April 16, 2006 12:12 AM permalink

G.S.E. - Grapefruit seed extract

84. Comment by Robin on April 16, 2006 8:17 PM permalink

Hello Fellow Labbies,

This is my second bout with the labs, I had about a year and a half when I was fully recovered and it's been back since Jan. Although it is not as bad as the first time, it is none the less, pretty constant. I have been having a bad few weeks, but the worst has been the dizzies I am feeling at night when I'm laying down. I don't exactly sleep, kind of pass out and have very vivid dreams. I have a hard time getting up in the morning and getting to work. My appetite is gone and I've lost a lot of weight. I have no energy and I'm feeling so depressed. This bout didn't start with a cold or any health issue. I'm resistant to go back to the doctors, for more of the same. "you just have to wait it out". Do this symtoms sound familiar to anyone?

85. Comment by Molly on April 16, 2006 10:44 PM permalink

Tom, like Anna, you have peaked my interest about the GSE. I myself am going to look into adding that to my daily regimen. I have heard, however, that grapefruit/grapefruit juice can minimize the effect of certain prescription medicines (essentially making the medicines not work), has anyone else heard that?

Robin, sorry to hear about your latest symptoms. While I have gone through severe depression at times and am always exhausted, that has had the opposite effect for me, I have gained weight because I don't go exercise as often as I used to. Hope you feel better, Molly.

86. Comment by Molly on April 17, 2006 3:54 AM permalink

Hi Anna, you stated you have taken Ginko for a year. Do you see any effect? I am now on week 3 of using it...I do feel like I have improved since this wicked thing started October 2005, but since I am only on week 3 I don't know how much Ginko has helped. Thanks for your support, Molly.

87. Comment by Anna on April 17, 2006 5:37 PM permalink

Hi, labbies

Robin - everything that you described about your current night sleep pattern is similar to mine. At the worst of my labs I could not sleep flat at all because of dizziness, sometimes I walked back and forth in the house all night long and was absolutely exhausted in the morning. When I managed to get to sleep from a sleeping pill (Ambien) - it was short and indeed looked more like fainting. Often I would have weird and/or vivid dreams and I would wake up sweating with my heart pounding. Sometimes, often very early in the morning, I would get grave cold with terrible fear: Am I able to get out of the bed and walk? I am better with my night sleep now, but I still have to take the Ambien tablet. I tried to switch to Lunesta - but it did not work for me at all. Robin - what I really know about myself and many other inner ear disorders sufferers - GOOD NIGHT SLEEP IS ESSENTIAL for our recovery and everyday functioning. Night is the only time when our brain and all our senses can have full sufficient REST. Of course, if you have an additional possibility to have a nap during the day -it is great. Robin - when I had very bad night sleep - I also did not have any appetite and lost weight. Currently, on the contrary - I am eating very well and I have gained wieght, because I cannot exercise as I used to do. Molly - I have been taking Ginkgo Biloba and I have been improving slowly - in fact extremely slowly. It is really hard to say, what is working for me - just TIME and QUIET (I cannot tolerate sounds - many of them send me spinning) lifestyle - or Gingko Biloba taken on a regular basis. I think, that the COMPLEX of the above works for my improvement. By the way - Gingko Biloba was already mentioned as an "herbal remedy of choice" for chronic dizziness by a serious specialist in The Consumers Handbook on dizziness and vertigo (published in 2005, edited by Dennis Poe, MD)

Anna

88. Comment by on April 17, 2006 6:03 PM permalink

Hey Deus--

Let me know what they say or advise you - for MAV - if you ask....

I also get loads of headaches

deeee

89. Comment by Lauren on April 17, 2006 8:23 PM permalink

I don't so much get headaches as I do head pressure. Is this what you guys feel as well? Always worse at night and just like everythings shifting around in my head and bad pressure....and not that ache in the forhead like w/ regular headaches...but tighness all through my scalp. I can't wait to feel a clear head....I will be at one year the end of May. I have been putting so much stock in the year mark and that I need to be better by then...I need to realize that may not happen. Hope everyone is doing well!

90. Comment by Kim on April 17, 2006 8:58 PM permalink

Deeee, Deus (and everyone else)-

There is a great site on Migraine Associated Vertigo run by a guy named Adam. I believe he posted here some, a very long time back.

Anyway, the web address is: http:/www.mvertigo.org/

There you can find links to alot of very informative articles on MAV, as well as post questions, etc.. Most likely Adam will answer any questions you have, as he is very well informed on this subject, and very helpful as well.

I have for the past several weeks been researching MAV, because my migraines intensified at the very same time I was told I had Labs, and I'm convinced there is somehow a connection. (By the way, although, I do get headaches, not ALL people do with migraine). My headaches are relatively minor compared to some of the other symptoms I experience.(many of which I was blaming on LABS.)

Anyway, hope it helps.

Kim

91. Comment by Renee on April 18, 2006 1:55 AM permalink

Yet another 'newby' joining the discussion - My name is Renee & I live in North Queensland in Australia.

For me, the overwhelming fatigue is the worst symptom. I have a 2 year old son, and wanting to be there for him as I always have has been incredibly hard over the past few months. He goes to daycare every day, as I don't have the energy to care for him at home - and I desperately miss the 'mummy/son' interactions we had until the horrible illness struck.

Like many of you, I dread going to bed at night, as I know I will wake continuously from vivid dreams and not be able to go back to sleep from about 4am....no wonder I feel so exhausted by 9am - I have already been awake for 5 hrs!!! Sometimes I lie in bed in the early hours of the morning, my body aching with fatigue and I desperately want to sleep - but just can't

I have heard that tricyclic anti-depressant medication can assist the sleep cycle (not to mention the feelings of utter despair). Anyone had any luck with using anti-depressants to assist with sleep???

Mostly, I grieve for the dreams I had - my husband and I were trying for another baby when the illness struck, I had just gotten a promotion at work that I had to knock back (given I'm not even going to work at the moment it would have been very hard to justify the promotion :)), missing invaluable moments in my son's development because I am in bed desperately trying to get a bit of sleep to ward off the constant fatigue. I guess I now have to find some different dreams to work towards....maybe feeling well enough to even stay up long enough to have a 1/2 hour conversation with my husband when our son goes to sleep.

I know my story is not special or unique, but - as you all know very well - it helps just to get it out. For that I thank you all.

92. Comment by Sarah on April 18, 2006 9:04 AM permalink

Robin- you could be describing me! My symptoms are exactly the same.its also my second bout. My first was 2 years ago, This time it has lasted longer! I feel really depressed sometimes. its hard to not constantly wonder when the symptoms will go and you will get your life back. I havent been to work for 9 weeks now ( Im a teacher). I also have really vivid dreams and worry about bedtime as my dizzies are worse then. I do get headaches, but my complaint is more about pressure in the head and neck.My neck has also swollen slightly (poss glands). Has anyone else had this? I am being referred to a specialist, but I may go private due to stupidly long waiting lists! Renee- welcome! Konw exactly how you feel, although I dont have any children yet. That must be tough. How long have you suffered? I am in month 3. Have you been to a specialist yet? I too have terrible trouble with fatigue, along with terrible tinnitus and hearing loss, particularly in my left ear. I do feel somewhat possessed!!! I have been prescribed prochloperazine (stemetil) and although I dont want to rely on them, they do make you very drowsy, so I try to take them before bedtime. My only concern is that I dont want to have it as long as some of you guys have. I know that sounds selfish- I dont mean it to. Im desperate to go back to work and live my 'normal' life again. At the mo, walking to the local post box ( about 5 min walk) makes me feel sick and spinny!!!

93. Comment by beata on April 18, 2006 2:12 PM permalink

hi everyone i just wanted to update you on my progress. i am feeling so much better now. i just went to another ent he said that labs only lasts for six weeks and that there is no way that this could go on for 3 years like i have it. i said thank you paid my copay and thought that he was so full of crap. i am done with doctors. i am truley convinced that they really dont know half of the stuff. however i read a book called natural cures they dont want you to know about and i found it very interesting. the guy is extremehowever i implemented some of the things he talks about and it made a huge difference. I went back to grapefruit juicing it really works but i have to mentally prepare myself to drink the stuff 2 times a day. its terrible it tastes gross, but it works. i also stared juicing 4 carrots 2 apples and 2 slices of ginger in the morning. in the afternoon i juice carrots celery parsley kale and a shot of wheat grass. the wheat grass is great it makes you go to the bathroom and it gets rid of all toxins. i stopped all meds not even an advil. i stopped using flouride toothpaste and drink 8 oz of distilled water everyday. this thing is almost gone i cant believe it even the anxiety its all gone. i also take 2000mg of vit c and 2 garlic pills a day. it made a huge difference. i walk a hour everyday and get a message once a month.i feel very stable i dont know if it has been 3 years and its finally going away or if the natural stuff helps. good luck read the book take from it what is possible for you to do if i wanted to do everything that he did i would need to live in a bottle but some of the stuff is really helpful.

94. Comment by matt on April 18, 2006 6:57 PM permalink

Saw and ear specialist here in Austin. He confirmed that I have Labyrinthitis (which he described as damage to the inner ear). He also stated that I have Endolymphatic Hydrops (not Meniere's Disease). I don't know if anyone else has been diagnosed with this but he said that it's an imbalance of fluid in the inner ears that causes the "off" feeling. He also stated common symptoms are stuffy ears, tinnitus, imbalance, feeling like a vice is squeezing your head, vision problems, etc. He stated that it goes in cycles and that anxiety/depression is very common with this as well. He states that textbook says this will not go away, but he has seen numerous occasions where patients are able to function after. He prescribed me with a mild diuretic (to help drain the excess fluid), potassium pills (as the diuretic depletes it) and VRT exercises. He expects that I should be OK in several months.

I can't help but thinking about what my department physician told me when I told her that I had an imbalance of fluid of the inner ear. She said "Aaawww, you're a baby." She said this because baby's have this and that is why when they start walking they fall and lose their balance easily. This kind of gave me hope because eventually, the child can balance themselves. My 1 year old is still having trouble but I guess that is why the docs say it could take up to 18 months for full recovery, that's about how long it takes a child to balance themselves fully. Just a thought.

Blessings all.

Matt, TX

95. Comment by Tim on April 19, 2006 1:44 AM permalink

SArah -

Dont get too down. I have come thru this and so far no setbacks. I did find the Gravol "non drowsy" tablets worth trying as they do not make u drowsy or sleepy and no side effects. They are based on ginger which is a known anti nausea and movement corrector. Give em a try! U never know.

IT will get better and u may never get it again. I am hopeful I will not but at least I will knwo there is hope for a full recovery even if it isnt after the first bout.

Good luck! tim

96. Comment by Frances on April 19, 2006 11:34 AM permalink

Hi everyone

I went to a balance self help group meeting last night which was set up by my neurotologist Mr Woods. So glad I made the effort (it was the first time I've been out in the evening for nearly 7 months). I was very nervous walking into a room full of dizzies (about 30 I guess) but everyone made me feel very welcome. Mr Woods was also there and gave a really good speech on labs/neuritis/BPPV/MAV, then mingled with the crowd and we were able to ask him all sorts of questions in a relaxed atmosphere. I'd been told this man went 'above and beyond' the call of duty and he sure did do that. We tended to sit in groups but moved around to join in others conversations. There were people there on crutches, still too wobbly to walk unaided but others were nearing the end of there ordeal. They were the ones I got the most inspiration from and they explained they'd been as bad as me!!! I'm struggling at the moment with the VRT and feeling terribly sick all the time. Mr Woods said I'm doing incredibly well and he expected me to feel like this, which is a GOOD thing. He's coming to my house tomorrow armed with lots more VRT exercises for me to add to those I'm already doing. He explained why I'm feeling so dreadful but promises the cotton wool feeling, pressure, pain and umpteen other problems will go as the VRT starts to 'kick in'. Seeing lots of people worse off than myself made me realise what a long way I've come since last October. I was really proud of myself and managed to stay the distance of 2 whole hours!! Remember everyone, you will recover.

Frances

97. Comment by Anna on April 19, 2006 9:37 PM permalink

Hi, everyone

Frances - this Dr. Woods and his group are AMAZING!!! You are lucky to have them in your hometown. Sometimes, I am ready to cry - alone in the whole world. I am trying hard to educate others (sometimes including the doctors!!!)about my condition. But, my God, I wish I could find somebody who would EDUCATE ME! Frances - keep us informed about your progress.

Everybody - keep strong!

Anna

98. Comment by Anna on April 19, 2006 9:45 PM permalink

Frances - what is Dr. Woods first name and what is the name of his clinic?

Thanks, Anna

99. Comment by Tom on April 20, 2006 11:03 AM permalink

Beata,

Thanks for the info. regarding natural remedies. I used to be a meat and potatoes man but I'm beginning to see the light. My wife and I are now strict vegetarians and have seen great improvement in our general health for having made the switch. We'll get a copy of the book you mentioned " Natural Cures They Don't Want You to Know About", by Kevin Trudeau, on our return to Canada (we're in Mexico) in about 6 weeks. I'm currently choking down grapefruit seed extract twice daily. I'm on day 5 and haven't noticed much so far but of course it's still way too early to see results. I found I had a hard time drifting off to sleep for a couple of nights when I started taking it. - side effect or random I can't say. I'm sleeping pretty well now though.

100. Comment by Frances on April 20, 2006 12:04 PM permalink

Anna

His full name is Christopher Woods and he works at the Balance Clinic at Mayday Hospital in Croydon, Surrey. I'm seeing him today actually. He's got a lot more VRT exercises for me!! Things are quite difficult at the moment but at least I am now getting the encouragement to carry on with the exercises and improvement is a promise. Hope you are having a better day.

Love Frances x

101. Comment by sarah on April 20, 2006 1:37 PM permalink

Tim- thanks for your helpful comments. You know how it is. you go from feeling confident that it will go, to thinking that you are cursed for life. Recently my symptoms have got worse again. Does anyone have any idea of how to treat tinnitus/ stuffly ears? Sarah

102. Comment by on April 20, 2006 7:29 PM permalink

whats up with the dizzy lounge....its like you need to be a v.i.p to get in.

103. Comment by Tim on April 20, 2006 8:45 PM permalink

Hi everyone -

I am continuing to check into this site every so often as it was SO helpful to me when I was in the thick of it.

I was just as bad as many of you..I could hardly leave the hosue for two months..couldn't turn my head sideways in bed. Had to sleep on my back. The room spun, I was nauseas, dizzy, and a headache that didn't quit, my right ear was full.

But all fo the sudden it began to lift...a would have one good day...and then two good days...and one day after about nine weeks I felt 95% better and I have stayed thatw ay.

I know many of you will have it longer; some a lesser time. But just hold onto the knowledge that you WILL get better.

Hope this helps. Thinking of you all...

tim

104. Comment by Anna on April 20, 2006 10:00 PM permalink

Renee – I actually have been on a tri-cyclic antidepressant – amitriptylene (Elavil) in 1995 during the third outburst of my complicated inner ear disorder. Actually, it did not do anything to the dizziness, but it definitely reduced related to the dizziness headaches, anxiety and panics, and insomnia. It did not have any side effects for me. I quit taking Elavil by gradually reducing the dose – no side effects with quitting for me. During the current bout – I am taking one of serotonin inhibitors – SSRI’s – Paxil. I do not see any side effects and it works well for my headaches, anxiety, panics, and insomnia (not for dizziness, imbalance, or positional spinning). It is not a quick process of those medications to kick in – it takes time. To my mind – it is better to start earlier – they will HELP you to calm down, to have significantly less headaches, to sleep better: in other words - it will help to SURVIVE your terrible ordeal!!!

Somebody asked about “The dizzylounge”. It has changed its appearance and some options. The nice lady in charge is Jill. I was a member before the changes. Somehow, I managed to get in the FORUM and even to post a new thread on the board (despite my poor computer skills).

I have ordered Grapefruit Seed Extract from Nutri Biotic (4 oz bottle). I am going to give it a try on top of my usual long time Ginkgo Biloba. (Tom – I am watching your progress and I will inform you on mine).

Beata – I am sure, that your fresh juices are BETTER, than any of dried leaves, or extracts. I really do not know what prevent all of us from doing the same - instead of swallowing ready pills. Maybe we are just lazy?!.....

Deus – I remember that you were going to start working. How is it going?

Matt, TX – I think, there is a big-big difference between babies and us – inner ear disorders victims. I remember my children when they were babies and had just started sitting and walking – they were HAPPY in their attempts of the new amazing activities and they were not much afraid of falling. We are definitely NOT like those babies – we are so FATIGUED, DEPRESSED and UNHAPPY while re-learning to do the simplest movements and tasks….. And we are in physical pain and psychological distress.

Anna

105. Comment by Molly on April 21, 2006 3:58 AM permalink

Anna, look at your last e-mail on April 20th, you have helped SO MANY of us! I do wish that there was someone that could educate you, but I hope you know how much we appreciate your kind words and advice which helps keeps us going. God has definitely given you a gift for helping others make it through, I'm just sorry that your experience is the root of your knowledge.

Beata, thanks for keeping us updated. It struck me when you said that you stopped taken all meds. When I first started this horrible journey, I had been taking sudafed, tylenol sinus, sniffed Afrin 3x a day, ibuprofen etc. (I have horrible sinus problems). The problem was I did this EVERYDAY. I resigned myself that no matter how difficult it was to stop all meds. for a month. I did, and the first time I got a miserable migraine headache a month and a half later, I took 2 generic over the counter migraine tablets and it was gone in a half hour!! Before it would take tons of medicine to get over a migraine. The point of my rambling is that, once you cleanse your body of all meds. and then take one dose of something, it becomes effective again. Take care, and continue to keep us updated.

106. Comment by Tom on April 21, 2006 9:23 AM permalink

Anna,

You're right about pill-taking. Laziness is part of it but we're generally pretty conditioned to do the acceptible, the traditional; - at root it's whatever behaviour we consider to be the "fashionable" thing in any given situation. Popping pills is highly sanctioned behaviour and as in all other things it's monkey see, monkey do all the way. Juicers automatically look like 'wackos' with all their 'queer' ideas, ............ I'm sure you follow what I'm getting at. It looks to me like we all might benefit from thinking more 'outside the box'.

I'm going to look a lot closer at the whole thing. I realise I don't actually KNOW much about alternate diets.

Thanks all you thoughtful people. I appreciate you mega mega. Tom

107. Comment by Frances on April 21, 2006 9:54 AM permalink

I thought you might like to have some more info from Neurotologist after yesterday’s meeting. We sat chatting about all the friends I’ve made on this site and he was interested to know about you all and your experiences. He told me he has 25 new patients referred to him each week, just from his Health Authority alone and yet his clinic is frequently threatened with closure due to lack of funds and he has to constantly justify the need for his job!. He reckons the problem with most ENT specialists is the fact that they are just that, ear, nose AND throat and don’t specialise thoroughly is any one, hence, the lack of understanding. I gave him some questions and here are his answers which I diligently wrote down. I realise it’s like teaching grandma to suck eggs for some of the veterans and don’t wish to sound patronising.

Best way to relieve pressure/full up feeling in the ear is to buy a proper steam inhaler that fits over the nose NOT a bowl and towel. Use eucalyptus oil or crystals but avoid anything that will aggrevate the follicles in the nose, due to the constant use. Don’t only use it when the ear pressure/full feeling is present. This procedure should be done every day for 1 month.

Ginko Biloba can help relieve tinnitus (ringing in the ears) but will take between 4-6 weeks to work.

Muscle and joint problems brought on by the loss of balance will benefit from Magnesium and B Complex as they help to repair the damaged nerves. Again, these will take between 4-6 weeks to work but will only aid recovery.

Strange feelings in the body, i.e. pins and needles, tightness in muscles, hot and cold feelings in limbs are all due to the balance mechanism not working properly.

Hopi candles can help if a middle ear infection is present but will not help inner ear problems.

To relieve sickness buy sea bands and keep them on 24/7 whilst nausea is present. Once VRT starts to work it will abate but expect it to occur again when more challenging exercises are added to your programme.

If flying, also wear sea bands and use steam inhaler night before flight. Don’t take any alcohol and if you have any, have just one Stematil before the flight. This won’t make you decompensate and will also help with the anxiety!!!

Always make sure at least 5 mins of neck exercises and shoulder shrugging is done before any exercises.

If palpitations are a problem keep ice cubes in the freezer and when the heart starts playing up put some in a glass of water and sip slowly.

Avoid any deep tissue massages as this can aggrevate dizziness. Soft tissue massages are more soothing.

Insist on getting a referral to a balance specialist as the longer it takes to get VRT the longer it will be before a complete recovery is made.

It is highly unlikely (but not impossible) that viral labyrinthitis can be caught again because it is a virus that the body builds up an immunity to. The likely cause of a relapse is decompensation, usually due to extreme stress, i.e. house move, loss of loved one, change in job or other illness. The anxiety of ‘getting it again’ will make the next recovery harder and a vicious cycle occurs.

Remember that the brain does make mistakes when we are fit and healthy, WITHOUT labyrinthitis, i.e. we have days when we are clumsy or can’t type without making spelling mistakes, we forget what we are about to say and we misplace things. When we should be sombre or silent we have uncontrollable giggles and words can come out of our mouths that we really don’t want to say!!! Therefore, it stands to reason that sometimes our brains have ‘off days’ after making a full recovery from labyrinthitis. This doesn’t mean you have it again and a few VRT exercises usually do the trick.

An interesting fact is that in all the years he has been researching and treating patients with balance problems the statistics have remained the same: 70% women and 30% men. As the majority of women are 45+ it suggests a strong link with falling hormones due to the menopause. Likewise, women who are of menstruating years will find the symptoms worsen before and sometimes during their periods but it is not due to decompensation. Things usually calm down again once the period is over. (Important – once a full recovery is made there will be NO more problems).

Finally, if 100% damage is done to both balance mechanisms a full recovery is STILL possible.

I really do hope I’ve helped some of you.

Love Frances xxx

108. Comment by on April 21, 2006 11:02 AM permalink

Anna

Work is going surprisingly well,I find it occupies my mind and I dont think about being dizzy that much.In fact after my last relapse due to a cold...which im still getting rid off I have gone back to feeling 98% most of the time and one day 99%.I havent reached 100% yet due to a few visual problems and tiredness from work etc.However all in all Im doing quite well...maybe im coming to the end of it??

I even had 3 glasses of red wine on wednesday and woke up feeling fine!!Increadible.

Well lets just see if it lasts until my next decomp

Current time status: 8 1/2 months.Got labs on August 4 2005.

And yes it does get better everyone!

Anna I hope you are keeping well

Deus

109. Comment by matt on April 21, 2006 1:25 PM permalink

Anna,

I agree with your comment and in no way was I trying to compare us to babies. I was simply pointing out that the condition is similar. Yes we are all fatigued,depressed & unhappy because we are trying to re-learn things that we were so capable of doing for so long and are now in a tailspin because our lives have been turned upside down and are at times afraid that it may never go back to normal. I empathize believe me. But like you said, your children were happy because they were learning new experiences, we are unhappy because we can't do what we did months, and for some, years ago and it is frustrating.

I understand the physical pain and psycological distress, I'm there. I understand the concept of not knowing what today might bring, the anticipation of another panic attack, brought on by the room spinning, in which I'm afraid that I'll never see my family again for fear of dying. But those are things I'm working through and able to overcome. I was simply offering up a thought. Please believe me that in no way am I trying to downplay the situations we all face.

The beautiful thing about what has happened to me, is that I have learned to appreciate certain things in my life more since this put me on my behind 6 months ago. Therefore I am grateful that I was able to experience this. Even though this has landed me in the ER twice, numerous doctor's offices and counseling, I am still grateful and will press on. I'm sure you know where my faith lies and where my joy & strength come from. Not by my strength, but His. With that,

God Bless you all.

Matt, TX

PS: James 1:2-4,12 http://bibleresources.bible.com/passagesearchresults.php?passage1=James+1&version1=31

110. Comment by beata on April 21, 2006 10:04 PM permalink

hey frances thanks so much for writting all that it really helped infact i had an older ent on a flight one day he is now retired he said almost the same thing. Just when I was feeling very good i came home after my trip today I went on a short flight dallas to chicago i got off the plane and I thought I was going to pass out. But like the doctor said our bodies have bad days for me it's that time of the month and its really much worse and I have been up since 2am and home situation is very stressful now. I guess that explains it. It really does get worse with stress and hormones. you all feel goood

111. Comment by shaukat nadeem on April 22, 2006 3:59 PM permalink

Hi everyone,

I'mm a 34 year old male from uk..i've been diagnosed with labrynthitis recently by my doctor. My first feeling of it came on Good friday night about 4am...my whole bedoroom seemd to be spinning around me..i felt as i will wall off my bed.I've never been so frighttened in my whole life.It was also accompanied with nausia, vommitingand general dizziness and lack of balance throughout the whole day. I went to the hospital and was precscibed Stemetil which did seem to stop the vommiitng but the other symptoms have remained although not as iontense as before. I'm afraid of it causing permament damage to my hearing and general balancig ability etc. Is there anything else that i can do or take such as herbal or alternative therapies that would help?. I never want to go though this experience again..it was so frightening. At the moment i have some of the sypmtoms on a adaily basis but its worse at night and i find it hard to get any sleep..thank god the vertigo spinning seems to have gone.I hope someone can suggest some ideas of how to get myself back to normal. Thanks for reading this post. I'm sure it does help to know that that your not alone sufferign lke this.

112. Comment by chris on April 23, 2006 8:55 PM permalink

dues

hey! thats awesome that your doing well again. i know in the middle of a decomp its hard to keep your hopes up. i had a cold that made me feel spacey and weird all week and the last couple of days ive been playing football...running around with my brother and doing stuff i wish i could have done a couple months ago. i still feel weird on and off but for the most part im in good spirits. i guess the docs were right in saying.....it goes away....just takes time. never thought it would take this long. but its ok.

hope you stay doing well

i got mine on sept 18th 2005. its like a new holiday. i can't wait for my recovery holiday

113. Comment by Lynn on April 23, 2006 9:35 PM permalink

Hello Everyone, I last posted in February, about 6 weeks after my Labyrinthitis began. At that time I was dizzy and had lost hearing in one ear. That same ear had tinnitus. Since then the dizziness has gone (thank goodness) but I still can't hear from one ear and the noise in that ear is like a water faucet turned on full force. My oto-neurotologist said that tests show damage to the nerves in the inner ear and the hearing may not return. Has anyone had a similar experience? I would really welcome any comments. Thanks, Lynn

114. Comment by Anna on April 24, 2006 4:07 AM permalink

Hi, dizzy friends

Molly and others – Thank you. I am trying my best to help all the people who come on this webpage, because I UNDERSTAND completely how all of you are feeling. I have been passing the hardest way of pain, learning, frustration, depression, anxiety, disbelief, etc.etc. – for several times in my life. I was basically ALONE and very much ISOLATED during those hardest times. You can ask me – what about my family? To tell you the truth - I was fearful to tell them ALL I was going through – I spared their feelings – I always tried to HIDE (as much as I could!) my symptoms. There were no Internet support groups 34, 25, or even11 years ago. In 1995, when I first found VEDA (Vestibular Disorders Association) webpage on my computer, and they sent me for free their booklet “BALANCING ACT” and I read the short introduction under the title “What Is Happening To Me” – I cried, and cried, and cried. Tears were streaming down my face, I was sobbing and laughing at the same time (and I am not a person who cries easily). Because I found MYSELF described in the booklet!!!!! I learned then, that my trouble, my curse – IT HAS ITS NAME. There are others in the same boat! Since then I have had both BAD and GOOD periods, but I have never been ALONE. I have learned to explain my complicated condition, and I have learned to make others RESPECT my sufferings. I have always been extremely grateful to people around me for any kind words, or any support they offered. When I see somebody ill, alone, isolated, scared to death, with no help – my heart gets broken, as I imagine – it is ME being tortured……

Frances – so nice, that you have found your doctor. It’s a pity, that his practice can be closed or even diminished. A day WILL come when he WILL BE RECOGNISED. It is a GOOD doctor specializing in balance disorders in the USA – Dr.Rauch from Harvard Medical School. His webpage is: http://www.meei.harvard.edu/shared/oto/rauch.php It is another GOOD one in the USA – Dr. Timothy Hain from North Eastern University in Chicago. http: