Sharp Blue: Labyrinthitis comments, page 2

My earlier entry, "Labyrinthitis; or The Missing Week", has proven unexpectedly popular. Indeed, the comments there seem to have become a support group with extremely valuable information and general support posted by a number of regular visitors. Because that page has now become very long, I've decided to close comments there and to divert people who wish to comment to this page. (When this page reaches a similar length, I'll start a third page!)

1. Comment by Nikki on October 30, 2004 11:56 PM permalink

Good going Rich! Thanks for providing this space for Lab sufferers.

I'm not sure I fit into that catergory now tho. I went to the Neurologist last Tuesday who put some eyeball-measuring goggles on me and pushed and pulled me around, and made me do some balance exercises. His diagnosis was that I HAD BPPV and have gotten over it and the residual dizziness is because of anxiety brought on by the BPPV. He wrote me a referral to a psychologist and is sending me for an MRI scan in a couple of weeks as a precaution. I didnt quite know what to think of this. Embarrassed mostly. He seemed very ppositive about the whole thing. I have tried to adjust my attitude, started doing relaxation tapes and tried not to be so worried of what might happen as it's only BPPV. He said if it happened again to go see him and he would show me some manouver to fix it. Well just this morning after I had just woken up, I turned my head quickly and the room spun. Only for a few secs, but definitely spun. I tried to provoke it again a few times but bothing happened. Now if I ring him (less than a week after I have seen him), is he going to tell me I imagined it?

2. Comment by Nikki on October 31, 2004 12:01 AM permalink

BTW I have been to Labyrinthitis.org.uk before too, but found the hot pink background and the moving objects to be very disturbing!!

3. Comment by on October 31, 2004 9:42 AM permalink

what is the difference between BPPV and VL?

4. Comment by Jill on November 1, 2004 8:41 PM permalink

Hi I have been given this website address recently and have found it an enormous comfort. I got labyrinthitis at the end of January following a long plane journey and it has been the bane of my life ever since.

My symptoms were at first horrific, I could hardly stand up and kept shaking and feeling sick. I struggled so much to get my doctors to take me seriously but finally an on-call doctor I visited in hospital diagnosed me with an inner ear infection and gave me stematil. My life was unbearable for about two months, I carried on going to work but constantly felt awful, always struggling to balance and it felt as though a weight was pressing down on my head.

Since then it comes and goes. Just when I think it is gone forever it comes back with a vengance. Nobody can seem to offer me a solution, even the ear specialist says it will just "go away eventually" even though it has been nearly a year. My last severe attack was in September when it felt like the floor was soaring downwards, I just felt terrible.

It is so hard to have to live your life around the "gremlin" as I call it, never knowing when it will strike again but I am determined to get on with my life even though sometimes I feel so uncomfortable and so afraid that it will never go away.

I do try and be positive around my friends and family who struggle to understand and I suspect may think I'm putting it on a bit but it has been such a comfort to find others in the same boat.

Good luck to all of you

Jill x

5. Comment by Anna on November 1, 2004 11:08 PM permalink

Somebody asked what the difference between labyrinthitis and BPPV was. The following description is it quite accurate, I think: _______________________________________________________________________________ What is Labyrinthitis? Labyrinthitis is an inner ear infection, that can be either viral or bacterial. The norm for Labyrinthitis is to last between 3 and 8 weeks and then disappear without so much of a trace. For a fair number however this does not happen and long after the doctor has said "You'll be fine in a few weeks" such people have noticed no improvement, let alone a recovery.

What is BPPV...? BPPV - BENIGN PAROXYSMAL POSITIONAL VERTIGO. BPPV can sometimes occur following a bout of viral Labyrinthitis. Signs and Symptoms... Usually BPPV is characterised by short and very intense bursts of vertigo that are related to certain positions. Quite often people will experience vertigo when they lie down, turn over in bed, rise from bed, lean forward or look up. Generally the vertigo is brief - lasting under a minute and is often accompanied by nausea and a classic nystagmus (eye movements). Benign paroxysmal positional vertigo (BPPV) is a peripheral vestibular (inner ear) disorder in which patients typically report attacks of vertigo with position changes. The exact cause of BPPV is still not completely understood. Although some controversy exists, the most widely excepted theory is that BPPV is caused by otoconia (calcium particles) that are shed from the utricular macula (which responds to linear motion) migrating to the posterior semi-circular canal (which responds to rotational motion). When the otoconia particles have dislodged, they either may settle into the sensory organ cupula of the posterior semi-circular canal (cupulolithiasis) or they may continue to free float within the endolymph of the posterior canal itself (canalithiasis). In either case, their presence alters the dynamic response of the posterior semi-circular canal to head movement, causing vertigo. This may occur for several reasons e.g. whiplash injury, falls, head injury, even high-impact exercises and sometimes as a consequence of viral Labyrinthitis. In certain cases people who have had prolonged periods of inactivity, such as confinement to a bed, may also develop BPPV because of the settling of the otoconia particles. _ _______________________________________________________________ Nikki : These two problems (labs/BPPV) come one after another in any order, and sometimes they just exist together, at least in my case. Maneuvers with moving the crystals (calcium particles) in your inner ear help to many people. But be careful: move your head and body slowly and gently – do not damage your labyrinth! I had a very bad experience with so-called Brand-Daroff exercises (they should be done several times a day). They brought on horrible, scary and lengthy symptoms in me. Epley maneuver is much better, because it is done only once, or twice, if necessary.

Anna

6. Comment by Garry on November 4, 2004 10:02 AM permalink

I suffer from labrynthitits on a regular basis. the worst was a couple of years ago on boxing day, I thought I had food poisoning because I kept vomitting, and felt dizzy. I called the Doctor out who diagnosed labrynthitis, and gave me stemetil tablets. I still get the dizziness, especially when I turn my head in bed, or during the day if I move my head from the upright position. I have learned to live with the condition, and find I suffer more when there are lots of colds and flu like symptoms about. Does anyone know of anything that I can take to help ease the condition? I read that Ginko Phytosone helps, any suggestions?

Thanks. Garry

7. Comment by on November 4, 2004 12:37 PM permalink

Hi everyone, I hope that you are all continuing to get better. I'm feeling a little down today. I've now had this for 15 weeks and on monday I tried to go into work for a couple of hours (I am a teacher). Monday felt good although I was extremely tired but on a high because I felt like normal life was getting closer. However when I went in on Tuesday, I felt really unwell and had to come home. I tried again on wed but I have had to accept that I can not cope and the doctor has signed me off for another month. I feel so down and scared that I will never recover and be able to cope with my old life. I'm sorry to be negative but I really need some support. My doctor now wants to refer me to a neurologist even though both my MRI and CT scans were normal. What do you think? Love Ruth

8. Comment by Anna on November 4, 2004 8:02 PM permalink

Hello, everyone who is trying to cope with this cruel thing,

Garry, some of the guys who visit this site are taking Ginkgo Biloba on the regular basis. Me too. I am taking 120 mg in the morning and 120 mg in the evening. I can not say that it is something magic, but it would not hurt, at least. Maybe, it will eventually help to restore some of your impaired balance. Somebody found the following information, which looks quite convincing: ------------------------------------------------------------------------------------------------------------ GinkgoBiloba For example, researchers in Poland have recently found that vertigo induced by vestibular receptor impairment (called vestibular organ peripheral lesion syndrome) can be reduced by administering ginkgo biloba extract. According to their study, almost all of the 45 patients who received 120 mg twice daily of ginkgo biloba extract for 30 days showed a significantly increased ability to compensate for vestibular lesions and subsequently experienced fewer outbreaks of vertigo (Orendorz-Fraczkowska et al. 2002). These results confirmed the earlier work performed by researchers at the University of Sassari (Italy), who found that patients who received ginkgo biloba extract at 80 mg twice daily had their vertigo and dizziness reduced by as much as 65% (Cesarani et al. 1998). Dear Ruth, I am very-very sorry for you being so frustrated for not coping with a 2 hour work day at school. But let me tell you something: I expected something like that from your beginning. School is an extremely tough place for people even with very healthy heads (I know this - my mother was a school teacher, and I have my own kids). Forget about that first failed attempt to start “normal life”. You just have not recovered yet! You will be stronger in a month and you will try once again. It is OK to complain, to be negative, to be angry and frustrated, OK to cry (for women). But not for too long, please. Ruth, your doctor seems to be a good guy, he probably feels that he is absolutely helpless (which is true!). So, he referred you to a neurologist, who in turn will feel helpless (if he is knowledgeable and honest to you and to himself). I am not pessimistic, just realistic. Ruth, maybe my example will make you feel a little better, because you are not alone in your struggle. About myself. Although I work a full day, I am not “normal” yet. I adopted many coping techniques which help me make it through the day. I have to take frequent breaks from looking on the computer screen, which often makes me dizzy (just closing the eyes for several minutes helps). When I have to go in a production building to talk to other engineers and technicians, I put bulky protective earphones on my head, and look like an alien in them. I just can not stand a whistling high pitch sound of high frequency power supplies and monotonous low frequency noise of compressors and other equipment. These sounds make me dizzy and unstable - they did not bother me at all before my illness. I absolutely can not stand still while talking to people and turning my head to them, and looking in their eyes and smiling, and laughing. It seems to me, that the next moment I would faint. So, I never stay still, if I have a chair to sit down. As well as I never sit with my head upright if I have a chance to lie down and relax even for a short period (do not have this privilege at work, of course). I still avoid big crowds, go grocery shopping only escorted by my mom and grabbing tightly on a shopping cart, we turn down invitations for parties because of me, do not go to restaurants and concerts. But, hey, I am alive!

I have been too talkative, I suppose….

Anna

9. Comment by on November 5, 2004 1:12 PM permalink

Thank you so much Anna, I really appreciate your help. I have a neurologist appointment for 25th Nov so I'll report back. I saw my GP this morning who has made me feel a bit negative because she suggested I may have to look for a new career. I love teaching, it is a big part of who I am although I have only been working for 4 years! I really do not know how I would cope never mind what else I would do. I am supposed to be getting married in July 2005 but it seems that even this will have to go on hold. Hopefully I will have some more positive news next time! Out of interest, my GP says I have a scar on my ear drum and was wondering if I know how I got it, I do not. Do you think this is significant? Love Ruth

10. Comment by Alhan on November 5, 2004 10:36 PM permalink

I have been diagnosed with labyrinthitis 10 days ago, I still can't raise my head up from the pillow and get up not even to the bathroom. My GP has not helped me at all and an emergency doctor had to come and see me. I currently take Serc 3 times a day but do not find it to be effective. Can someone please offer me some advice on how to reduce the diziness for me to at least be able to get up and not feel like i'm gona fall off a cliff?

11. Comment by Garry on November 6, 2004 10:02 AM permalink

Thanks Anna for recommending Ginko Biloba. I have heard that Ginko is aslo taken to ease Reynauds (which I also suffer from!) so I will give it a go. I will keep you posted.

12. Comment by Anna on November 6, 2004 3:32 PM permalink

Hi, sufferers,

Alhan, many people mentioned such prescription medicine as Stemetil, that supresses vestibular function and helps to get through the worst vertigo. Call your doctor and ask him about Stemetil. In order to help your impaired inner ear to return to its normal function, you can immediately start taking Ginkgo Biloba 120 mg in the morning and 120 mg in the evening. You can buy Ginkgo Biloba at any drug store. Many labyrinthitis sufferers found it to be hepful, if you take it on a regular basis.

Hold on, everybody!

Anna

13. Comment by Alhan on November 7, 2004 8:42 PM permalink

Many thanks Anna for you advice, I will try to get hold of my GP and ask him to give me Stemetil and I will also try taking Ginkgo Biloba and see how it goes. I really need to get better soon because I have to take care of my 12 year old son and his 24/7 demanding needs. I will keep you all posted on how it's going. Also I would appreciate more tips and advice from you or anyone else on what and what not to do to help me get better faster. Thanks again :-)

14. Comment by Carolyn on November 8, 2004 10:50 AM permalink

Visited the Labyrinthitis.org.uk website, and while the bright pink was hard on the eyes, the suggestion of Vestibular Rehabilitation Therapy sounds very promising. I'm going to chase it up with my GP because this is driving me mad - I need physical help not just someone to talk to as I want my life back.

15. Comment by Em on November 8, 2004 12:47 PM permalink

Hi all. Have been directed here after someone has signed our guestbk saying they found out about our site via this...

Am chuckling at the "bright pink background" comments - I chose it because it stands out and is my favourite colour! I realise it may not be best for v v dizzy people but the site is generally for people suffering from labyrinthitis for years - and GENERALLY by this time their dizziness is bad though not horrific. Sorry if its made viewing the site tricky for some. The problem is it'll take a lot of effort to change it but I may think about doing so!!!

Im glad people have found the website helpful. As a 2yr Labyrinthitis sufferer - I know only too well the horrors of the illness - so my thoughts are with you all.

I hope our site helps others in the future.

Emma xx

16. Comment by Anna on November 9, 2004 3:19 AM permalink

Hello, everyone who suffer and struggle with labs,

Emma, I was very much impressed with your site Labyrinthitis.org.uk. I read yours and Illia’s personal stories very attentively finding a lot of similarities with my story of this disease (recurrent labs/BPPV for many years, on and off). I learned some new coping techniques from your site, which I think are very valuable. Also, I learned, that not only I have hardships with explaining to my loved ones how I feel being dizzy 24/7 while looking absolutely fine from the outside. Your site, as well as this site, started by Rich (thank you, Rich!) are extremely helpful for all people with this inner ear disorder, no matter how long they have been sick. For people, who are disturbed by bright colors, or moving objects on the computer screen, I can share my little secret (maybe, some of you use it also). When I see some interesting information in the length of more, than three-four sentences, I just print it out in quite big letters (font 12-14, black on white background). It is much-much easier to read a text from a piece of paper, than from a computer screen. Carolyn, I am 100 % sure, that physical activity and Vestibular Rehabilitation Therapy is essential to full recovery. Unfortunately, in our small town qualified VRT is not available. So, I try to substitute it by walking as much as possible around the house, carefully walking upstairs to the second floor of our house, I started doing laundry, bending down, making a bed. In the evening I usually ask my husband to go for a rather slow walk in the neighborhood. At any time when I start feeling really unsteady and tired, I stop all physical activity and go to lie down and relax in a silent room. I understand, though, that VRT designed specifically for my needs could work better and faster. Anna

17. Comment by Valerie on November 10, 2004 9:29 AM permalink

This letter was sent to my Rotary club. I think people with balance problems will find it interesting as it mentions places in England where help may be obtained.

Dear Rotary

Firstly let me apologize now for my forwardness in contacting you in this way, as I can appreciate how busy you must be. However, I thought this might be of interest to you and wondered if you had ever come across it before. Let me stress from the outset that I am not trying to sell you anything nor do I want anything from you in return (except five minutes of your time to read this). I am merely trying to raise awareness of a debilitating and often unknown condition called Mal de Debarquement Syndrome.

Basically, with this condition it is an imbalance or rocking sensation that occurs after getting off a boat or "debarking" (debarquement).Other forms of motion have been known to trigger it. Once back on dry land the traveller continues to feel "all at sea", unable to get their land legs back. Although alot of travellers can identify with this feeling and do actually experience it temporarily after disembarking, unfortunately in the case of MdDS sufferers it can persist for many months, even years afterwards.The symptoms are with you constantly, they never leave, nor can they be alleviated by any anti-motion sickness drugs. "Like trying to constantly walk on a mattress or trampoline" is a good description of the main symptom, not to mention the others, nausea, gaze instability/visual distrubance, constant tinnitus, I could go on.

As you will have gathered by now I am one such sufferer (over three years and counting) ever since I stepped off a boat in Spain. I'll not bore you with all the details,but it took me over six months to discover just what I had, my GP and ENT Consultant ( and neurologist) were baffled, MRI scans, numerous hearing tests/balance tests etc proved negative,no anti-motion sickness drugs work (stemitil, Serc etc).So just when I thought I was really going mad, I got a reply to an email I had sent to a large vestibular disorder association (VEDA)in America. They told me that although rare, there was infact a name for my symptoms, imagine my relief in discovering about MdDS. Now I had to set about being diagnosed "professionally". Eventually I came across the neuro-otology department at the NHNN in London who had actually seen cases of MdDS. I was finally referred to them in September of 2002, and my "treatment" there is still ongoing,(Cawthorne-Cooksey exercises) although no improvement to date. More recently I have been to the Leicester Balance Centre their treatment is in contrast to the Neurological Hospital. Who is right, what is effective, who knows?

Anyway, what I find most distressing in all of this and what I would love to see change, is the lack of knowledge of the condition here in the UK and, moreover, the lack of research. There is slightly more in America (a dedicated web-site, www.nhffoundations.net/mdds, and one doctors limited research) but again not enough. I understand that it is not life threatening, but it certainly is life debilitating and limiting, and I believe that there must be a great many people out there,wondering around either, at best being misdiagnosed (vertigo, menieres, BPV, etc) or, worse, not having any hope of finding out what is wrong with them.

Probably because of my determined "doggedness" I am one of the few lucky ones who has actually been diagnosed.As there is no miracle cure, raising awareness is crucial in helping suffers know that it "isn't all in their head". For me it just helps to feel that I am doing something positive by "spreading the word" and raising it's profile. Last summer and at the beginning of this year I had a couple of articles about MdDS printed in women's magazines, and more recently my local BBC News ran a feature; so far(sadly) I have had quite a lot of feedback, ranging from wanting to know more about the condition to one lady who appears to have had it, undiagnosed, for seven years! Surely this shouldn't happen in today's medically enlightened world? One audiologist in Cambridge told me they see at least one patient a month with MdDS, which makes me question just how "rare" it is.

Finally I am sincerely sorry for my direct approach especially if you are already aware of MdDS, and I have therefore wasted your time, but take heart in knowing that there are very few who do! It's just that ideally I wouldn't want people to go through what I had to before being diagnosed.Anyway thankyou for taking the time and trouble to read this. It is certainly not sympathy that I am after but, and sorry to keep harping on about it, awareness of this horrible condition and ultimately a cure.

Mrs. J Houghton

Cheshire

18. Comment by on November 10, 2004 1:46 PM permalink

Hi guys, I am just wondering if anyine out there has fully recovered from VL? If there is someone, please let us know! How long did it take to be fully reovered? Did you just wake up better? I ask this because I have yet to find an entry on various websites which is from a fully recovered person. Perhaps those of us who visit here should make a pact to post an entry when we are fully recovered. This would be a tremendous boost to those of us still fighting! Thank you.

19. Comment by Em on November 10, 2004 2:02 PM permalink

Hi - Ilia on my website is now at 98%. Which I'd be happy with (www.labyrinthitis.org.uk). People most def do recover.

20. Comment by Rich on November 10, 2004 2:21 PM permalink

I think it's fair to say that I have fully recovered.

21. Comment by Anna on November 10, 2004 11:00 PM permalink

The vast majority of people will recover completely with no trace. It will take them from several weeks to several months, very rarely years to get rid of their trouble. I know personally at least five of them. Only those recovered people do not visit such sites as this one. There is no need any more to vent, to ask for an advice, to share and to reassure each other. These people just want to forget their terrible experience, which is quite understandable. I am still visiting this site, because I am from that “bad statistics”. Very sad, bur I have a lot of experience in dealing with labs, which is hard for me, bur may be helpful for others.

Anna

22. Comment by on November 11, 2004 10:02 AM permalink

Thanks everyone, it's reasurring to know that there is light at the end of this tunnel! I think it is disheartning when doctors say 'it just takes time' so to hear people do recover helps. Rich, how long did your full recovery take?

23. Comment by Rich on November 11, 2004 10:13 AM permalink

It took me about a month to recover fully, but from about two weeks after the onset of the serious symptoms described in my post I was capable of resuming something approximating normal life.

24. Comment by Em on November 11, 2004 11:28 AM permalink

Recovery from lab/vn falls into two categories - the sime cases whereby you recover in 6 weeks or the complicated cases (about 40%) where it can go beyond the year mark.

25. Comment by Em on November 11, 2004 11:28 AM permalink

Recovery from lab/vn falls into two categories - the simple cases whereby you recover in 6 weeks or the complicated cases (about 40%) where it can go beyond the year mark.

26. Comment by Robin on November 12, 2004 5:41 PM permalink

Hello Everyone,

I am happy to announce that I am 98% recovered from VL. If that's what I had. I think there is a difference between VL and vestibular neuronitis. I think I had the latter. I noticed if I get fatiqued, it brings on some tingling and staying hydrated at all times very important. Barometer changes still effect me, but not as much. So, after almost 4 months I believe I am really close to well. I think the ginkgo does help. It has been a hellish experience, but, I believe, I am on the last leg of this viris.

27. Comment by Anna on November 12, 2004 9:12 PM permalink

Hi, everybody,

Robin, it is so nice to learn about your success story (I am knocking on wood, though).

Some new information. One of my colleagues at work started to have ringing in her ear. She was advised by her ENT doctor to take a complex of different vitamins called Lipo-Flavonoid. It is over-the - counter food supplement, which, like it was written on the enclosed leaflet, “helps to improve blood circulation in the inner ear”. Whether it is true, or not, I am going to start taking this Lipo-Flavonoid, not forgetting about Ginkgo Biloba, physical activity and rest. Will keep you posted.

Anna

28. Comment by on November 13, 2004 11:17 AM permalink

It's great to hear stories of people recovering. Please add others as it really helps thouse of us who still suffer badly!

29. Comment by Kevin Savage on November 14, 2004 12:09 AM permalink

Hi Everyone,

Just to keep you all posted, as I haven't added to the board for a couple of weeks, I think I am on the road to recovery. Its been over 4 months now and whilst not 100% I'm having more normal days now. One thing I have learnt is not to be complacent as just when you think your better something weird happens. It can be a long road to recovery. I stopped taking Ginkgo about 2 weeks ago as I started to get bad skin, one of the side effects I understand. I'm sure they have helped so will give it another week or so and start again for another few weeks. Some recent things that have been happening are twitches on the side of my head, like pulsating veins and probably the most notable is blurred vision in my one eye. this comes and goes, all the doctor advised was to get an eye test at a high street optician, what a help. Also on several occasions i found that my vision skipped forward a bit like someone cut a few frames from a film, very weird. All in all some scary stuff! I still get the drunken feeling, amazingly drinking has had the opposite effect and made me feel sober. But i wouldn't recommend drinking alcohol.

Has anyone else had these sort of weird accounts?

30. Comment by Anna on November 15, 2004 11:10 PM permalink

Hi, everybody,

It has been exactly one year as my latest bout of BPPV/labyrinthitis/vestibular neuronitis (call it whatever, I think I had all the symptoms possible, except hearing loss)started. I think I am close to 80% of the full recovery from this current bout. Hope to feel better and better with time running. Kevin, vision problems will go away, they will not be permanent, I experinced some of them, but not anymore. I used to like a glass of good wine, or dark beer when I was symptom-free. But now, just a single sip of alcohol knocks me down immediately. I think I will return to good wine drinking when I feel totally recovered. Good wishes to all of you. Anna

31. Comment by on November 17, 2004 1:01 PM permalink

A strange symptom that I have is a tingling sensation in my body, almost as if my blood is being stirred! Has anyone else had this? I also sleep badly.

32. Comment by mary on November 17, 2004 6:35 PM permalink

I am now in my fourth month and have had similar experiences as many of you. Just when I think that I may be over it, it comes back strong. I just had more than a week of being in a complete fog -- many times, I felt like I was going to pass out but never did. It was very, very difficult to concentrate, even just having conversations with people was hard. I have not had twitches in my head as someone else mentioned but I have had a serious pulsating in my head (hard to tell if it is around my ears or what) from time to time. I also have had tingling sensations off and on throughout this whole ordeal. They have been in my face, arms and legs. Last week, I had an episode where the sensation very quickly spread from my neck, upper back and through my arms. It was very strange and freaked me out. The bad spins have gone but my equilibrium is totally off most of the time -- if I stand still, my body rotates on its own. I have also found that even elevators and escalators through my off and aggravate my symptoms. Does this sound familiar to anyone???

I think that Anna once wrote that she has had many scary symptoms throughout her bouts. That has been my experience, too. In the midst of them, I just try to remind myself that my MRIs, etc. all came out normal, and, therefore, the chances are good that I am not going to keel over!!!

Hang in there everyone -- we will improve with time.

33. Comment by on November 18, 2004 11:53 AM permalink

Mary, I am also in the 4th month of this and my symptoms sound quite similar to yours now. I saw my doctor about the pulsating in my head and it turns out that my blood pressure was high and this was the cause. Have you had yours tested recently? I now have some tablets which have helped. Ruth

34. Comment by Jackie Hunt on November 18, 2004 12:02 PM permalink

Hello everyone, Last week, after thinking that I suffered with meniers syndrome for the past 20 years or so,(ten of which I have not bothered to see a doctor because they never seemed to help) I went to my doctor's surgery, I saw a locum doctor who said that this bout of dizzyness was called Labyrinthitis! and that I probably had never suffered with meniers, just repete bouts of Lab. He prescribed antibiotics and a nasal spray for my blocked sinuses. Well one week on I feel much better, well compared to last week I do, now I have found this really helpfull site, thanks rich, you see, for so long now people just look at me as though I'm completly mad, and because I look ok they think I'm just 'making it up', any one who suffers with this horrible problem will probably understand me. Today I am feeling much more positive knowing that I am not alone, I am very lucky because I have a wonderful supportive husband and family who help me through the difficult times, and I am going to try ginko biloba and arnica gel today. In the past I have use a motion sickness pill called Aviomine which helped more than stemitil or serc. Also can anyone tell me if ginger helps. Thanks everyone this is definatly going to one of my favourite sites.

35. Comment by on November 18, 2004 12:07 PM permalink

36. Comment by Kevin Savage on November 18, 2004 12:44 PM permalink

Just when I thought I was getting better... last posted on the 14th, I have a turn for the worst. All the usual crap. I'm still thinking positive, but god its hard sometimes. I started drinking Green Tea... suppose to be really good and it is very calming... at thiss stage I'll try anything.

37. Comment by Kevin Savage on November 18, 2004 12:47 PM permalink

38. Comment by Mary on November 18, 2004 5:41 PM permalink

Thanks for the info, Ruth. I wish that you were not having similar symptoms but it is good to know that we are not alone! My blood pressure has always been in the normal range (at my appointments, at least) but I will have it checked the next time the pulsating feeling comes back. I don't think that I have actually been at the doctor's when that symptom was occurring.

Mary

39. Comment by Mary on November 18, 2004 5:43 PM permalink

Mary

40. Comment by Bruno on November 21, 2004 4:49 AM permalink

I wrote earlier and thought I'd give a follow up to my condition which hit me on Oct, 7 - 8...

I went to emerg. two more times since then and met an out-of-town doctor who explained the whole thng to me and the results of tests I've had so far; I live in a remote Northern community. He told me that I was taking the Serc wrong. That instead of taking them as prescribed by the first doctor; "only as needed." He told me to take them 3 times day for a week. The Serc seemed to start working after about the 5th day although I wasn't entirely symptom free, the episodes were less severe and less frequent. On a follow up visit to the same out of town doc. He explained that a lot of the other symptoms I was describing were likely due to the anxiety associated with the attacks. I have been nearly symptom free for the past 3 days, that makes six weeks of dizziness. Last week was my first full week back at work but I'm being very careful about not moving my head quickly. I have one more appntmnt for a specialized blood test and then I'm off to the neurologist next month. I'd like to think I'm over this but I've been there before only to have it come back when I was wrestling with my dog.

I've been drinking lots of green tea, haven't had a cup of coffee in the last 6 weeks, and have avoided all sugary drinks. I have been able to start eating again an am trying to put back some of the 12lbs I've lost.

It's hard to be calm when these attacks hit but I think that's key. But the biggest help for me was the support and reasurance of friends, family, and people like you. Thanks!

41. Comment by on November 22, 2004 8:50 AM permalink

Hi everyone, I need some advice. Has anyone had to see their dentist for a filling while suffering from this? I am a little worried because after 4 months I feel like I'm getting better but I think I need a filling. I am not in pain. I really would like to know how this will affect me. Thank you so much. Ruth

42. Comment by Anna on November 23, 2004 3:42 AM permalink

Hello, everybody,

Ruth - asked for an advice if it is OK to go to a dentist for a filling. Because I have been suffering from labs/BPPV for long months in a row, I did go to my dentist for usual twice a year cleaning and for fillings as well. Actually, these visits never reversed my slow-slow progress to recovery in every bout of this illness. I let my dentist know, that he should recline his dentist chair very slowly, because I have dizziness problems especially when changing the position of my head in respect to gravitation. My dentist was very attentive to how I was feeling at any time of my visits to him (very good guy!).

Kevin, you said: “Just when I thought I was getting better... last posted on the 14th, I have a turn for the worst”. It is exactly how it happened many times with me during recovery process. “Ups” and “downs” even during one day. But the recovery does happening! It is extremely slow, with these upsetting “downs” after encouraging “ups”. I found one very useful advice from a person whose recovery was also very slow. I started a diary of my disease: very brief description of my symptoms, possible triggers, how I felt, what I managed to do this day, other health problems, if they happens. It takes me only 10-15 minutes in the evening to write this information into the diary. Now, when I look at my notes from four-five months ago, I can see, that I have made a remarkable progress since then. It helps to stay positive, believe me!

Green tea feels and sounds very calming! Thank you for the idea, guys.

Robin , I think it is OK to go scuba diving only when you are completely, with no doubts, 100% symptom-free for at least couple months. I went scuba diving for the first time in my life about two years ago, after being completely symptom free for three years. (even forgot about my long time trouble at that time). It did not have any bad effect on me and I was very proud of myself (actually, I am a little claustrophobic).

Everybody, stay positive, at least try to!

Anna

43. Comment by robin on November 23, 2004 7:10 AM permalink

Hello Fellow labbies. Everytine I think i feel I have recovered - I have four or five good days - and then i have break / or just bad day, No matter how I try to will myself to wellness, it just doesn't want to go away. I am destressed. I'm tired of working at only 60%. I was a smart, funny, articulate, conpentent, woman befor this virus and good looking too,,, And Damn it I all want her back, It's been four months aleardy. Some one here. make it fo awat,pray it away if. you think it wii work, I'm even ready to try some witchcraft. Anyone know any.?

44. Comment by Rich on November 24, 2004 11:13 AM permalink

I have posted before and just wanted to provide an update. I had my first bout with vl on 3/4/04. It has been 8 months and I am still not 100% I am having a lot more good days than bad days. I can actually drink a cup of coffee now with no bad effects. However, I just had a cold and that brought on back some of the dizzy symptoms. Not as bad as before. The Ginko worked for me. The Arnica gel helped (sore neck from trying to hold head stiff so not get dizzy) Now if I start getting symtoms I recognize it as time to chill for a bit. I am pusing myself and need to take a break. Cured I am not, coping I am. Rich

45. Comment by Anna on November 29, 2004 6:05 PM permalink

Hello, everybody, Hope, all of you had good holidays. Am I right, that Rich, who just updated on Nov.24, is not that Rich, who started this site and who is absolutely symptom free? Thanks God, if somebody got rid of this disaster! My holidays were busy with too much talking, eating and noisy activities. My head hurts of all this. On usual working days I have more time to rest and relax in silence. My balance is getting better, though. Wish you all the best.

Anna

46. Comment by Rich on November 29, 2004 7:57 PM permalink

You are right that that Rich is not this Rich; and I am the owner of the weblog and absolutely symptom free.

47. Comment by Mary on December 4, 2004 2:14 AM permalink

Hi again:

After four months of this, you would think that I would get stronger, mentally, if not physically. However, the last few weeks have been overwhelming. For one week, I had the absolute worst brain fog on a daily basis along with complete equilibrium problems where my body was moving on its own if I stood still. The next week I felt much, much better and thought that I was out of the woods. Then, this week was another bad one with brain fog, etc., etc. I almost feel as bad as I did in the beginning. Sorry to be so down but this illness is almost more than I can take -- it is the sacriest thing that has ever happened to me.

I'm wondering how many of you (if you have time to respond) experience this brain fog --- is it common or should I be worried that something else is going on in my brain? I find it very scary -- it seems to happen most often when I am trying to concentrate and talk with someone face to face or even on the phone. It feels like my brain is overloaded and I can barely respond to the person I am talking with. Is this familiar to anyone? And if so, any advice on how to deal with it? Will Ginko help?

Thanks for any comments.

Mary

48. Comment by anna on December 4, 2004 9:39 PM permalink

Hi, everybody,

Mary - "brain fog", "poor concentration" are symptoms, that are very common for labs.

These are just a few complains of lab sufferers, which I randomly found on this site: _______________________________________________ "Today I have the usual foggy head, slight imbalance".... ___________________________________________ "I think I could say I had 3 really good, almost normal days but alas Sunday afternoon I got really foggy" _______________________________________________ "i guess a list of my total symptoms would be

constantly unbalanced brain fog fatigue feel like im lookin thru someone elses glasses fullness in right ear fullness in right temple with in the last 2 weeks my jaw, neck, and upper arm are starting to have soreness i honestly feel like my head is bogged down i forget things ... all our bills were at least a week late this past month... i put the orange juice in the cabinet instead of the fridge on more than one occasion...."

____________________________________________

I would have found many more similar complains, but it is really unpleasant for my eyes and head to scroll through the site (it makes me dizzy).

As for me, now, I feel more stable while walking, or standing still, but I really feel kind of “sleepy”, or “drowsy”, or “foggy”, or “drunk” pretty much of the day time. When sometimes I take a look at myself in the mirror, I see a drowsy person with the eyes almost half closed, no sparkle. I still think it will go away eventually, and my head will feel more and more clear (from my previous experience).

Bye, Anna

49. Comment by Mary on December 5, 2004 2:21 AM permalink

Thanks for the reassurance, Anna. I don't know what I would do without this site and support from people like you. Thanks for looking through the site even though it makes you sick (it makes me dizzy and queasy, too).

I read on another web site that this can lower your immunity. Have you found that to be the case? Since the beginning of August, I have had two bad colds, one week of an awful flu, and a slight flu bug that hit me this morning. This is unusual for me over the span of four months.

Mary

50. Comment by Nikki on December 5, 2004 9:46 AM permalink

Hi All,

I went to see the Neurologist on Friday. They did all sorts of hearing and ear tests which all came up fine.

My MRI scan was fine too, so the Dr has concluded that I probably had BPPV initially, but there is no remaining physical cause for any continuing dizziness I may be experiencing, and that the cause is probably psychological. I.e. the vertigo triggered some excessive anxiety and after the BPPV resolved, I became super-aware of any signs of dizziness, which in turn caused my anxiety levels to shoot up and amplify the dizzy feelings (it's a bit of a chicken and egg situation). The feelings of lightheadedness, disembodiment, near-fainting etc. are all anxiety related.

I am inclined to agree with him on some points because I was extremely anxious. I thought that at any moment the world might suddenly spin out of control and I would fall down in front of a passing car, or be helpless, or that the condition would be permanent.

I still have higher than normal anxiety levels which I am trying to fix using relaxation tapes and the like.

I still tend to feel dizzy sometimes but it is mostly at work. So if the Dr is right, it's probably becasue I am not home and "safe". But I have another theory as well. I work in a library in a room with lots and lots of dusty old books. Most of the people in the same room have been experiencing a lot of sneezing, sinus problems or are prone to respiratory infections. So I think that maybe we might have a bit of a problem with the air quality in our room. I have done a bit of study on the internet and found that bad air quality can cause a lot of problems, including dizziness.

So maybe its physical, maybe its mental, and maybe it's somewhere in between.

Food for thought anyway...

51. Comment by Kevin on December 5, 2004 9:59 PM permalink

Hi Labbies...

I must say that over the last 2 weeks I have been feeling a bit better... Last week I went for 5 days without many symptoms... then it came back... dizzy, feeling drunk... until today and now I'm feeling good again... seems that 5 months on I am having better days and whats great is they are starting to continue for days at a time.... fingers crossed. I do have a question, has anyone had Acupuncture to relieve the symptoms? I'm thinking of going to have a course and see what happens... I'll keep you all posted.

On another note we had the comapny Christmas party on Friday. I wasn't 100% so didn't drink all night. First time I've seen all my staff drunk through a clearish head... apart from the Labs that is.... to be honest I wish i had stayed at home.

52. Comment by Anna on December 6, 2004 4:41 AM permalink

Hi, dizzyfighters,

Nikki, no wonder, you have higher, than normal level of anxiety. Who wouldn't? But I am absolutely sure, that it is opposite to what your doctor said: your "unexplained" dizziness, that has been lasting for so long brings those symptoms of worries, anxiety and finally, depression to a certain extent (like in all people who have to deal with a chronic illness). It looks like when doctors do not have anything more to say, they just attribute your dizziness to your nerves. Probably, what you are right about: fresh air, not dusty air in the library, will make you feel better. As for me, I get out of my laboratory at work for five-seven minutes every one or two hours. The air is rather stuffy in the laboratory, also we have some nasty chemicals. I feel better outside, in the fresh air. Still, I do not believe, that this dusty air is a real cause of your occasional dizziness. Most likely, you are having some aftermaths of the labs (they will be gone, no doubts). Kevin, I had Acupuncture from a Chinese doctor five times (once a month for five months, the doctor comes only once a month to our small university town). People say, that those were too rare sessions to see any improvements quickly. So, frankly speaking, I do not know if those sessions really helped on my way to recovery. I am definitely much better, than, say, 6 months ago. Acupuncture, among other advantages, can help to strengthen your immune systems, so, you can give it a try.

Mary, you said, that you had troubles recently with other health issues. It looks like your immune system got weaker, than it used to be. I strongly believe, that both Ginkgo Biloba and multi-vitamins can support your body. I quit acupuncture a month ago, but I am still taking Ginkgo Biloba and Lipo-Flavonoid (a complex of different vitamins). Lipo-Flavonoid is an over-the - counter food supplement, which, like it is written in the enclosed leaflet, “helps to improve blood circulation in the inner ear”). Both Ginkgo Biloba and Lipo-Flavonoid are very safe to take for long time.

Wish you all a good week.

Anna

53. Comment by Anna on December 6, 2004 4:46 AM permalink

Hi, dizzyfighters,

Wish you all a good week.

Anna

54. Comment by Tajj on December 10, 2004 5:52 AM permalink

Hi everyone - I had a bout of VL last January and it took about 4 -6 weeks for me to be able to resume daily activities with any confidence...although "foggyness" has been a companion off and on (particularly when I'm stressed)...I came down with another bout of VL last week...I don't think it's as bad as the first bout and I have actually had a few periods of time when in the last week and a half when I've felt pretty normal - then I have a day (or part of a day) when it's really acting up again...I do know that it is the nature of the beast, but what a drag...I was wondering if anyone else finds that bright lights sets of the dizzies...surprisingly, experiencing a sudden bright light can make me feel like I've just crested a roller-coaster!

Tajj

55. Comment by on December 10, 2004 5:42 PM permalink

Hi everyone, I hope you are having a good day. I'm just wondering if anyone has any experience of train travel while suffering from this labyrinthitis? I'm keen to know how it affected you while travelling as well as after. I'm considering visiting friends but it takes 90 mins by train (3 hours by car). If the journey will cause problems I may make other plans. Thanks very much!

56. Comment by on December 10, 2004 5:45 PM permalink

57. Comment by Anna on December 10, 2004 8:11 PM permalink

Hi, dizzies,

Extremely useful to know!!! Read the following information attentively. I bet, you will find most of your own symptoms on the following List:

___________________________________________ List of possible symptoms of inner ear disorders

The symptoms of an inner ear or vestibular disorder can vary in severity from person to person. The list of symptoms that is listed below are the most commonly mentioned complaints from the members who visit The Dizzy Lounge Message Boards.

Dizziness

Some members describe their dizziness as a feeling of being either off balance, feeling faint, a rocking sensation, a sensation that they are moving when they're not, or true vertigo (where the room or objects spin around them). Many also complain of a feeling that they are suddenly pushed either backwards or forwards, and at times feel a strong sudden pull towards the ground.

Hearing

Hearing loss either slight or severe is very common with an inner ear disorder. Often if hearing loss is not present at the onset of this disorder it may develop later on. Ear noises such as ringing in the ear known as tinnitus or other sounds such as cracking, popping, clicking, or humming sounds are very common. You may also feel a lot of pressure and sometimes pain in your ears. Most have an intolerance to loud noises or the stereo effect where noise is either in front and behind them or to each side at the same time.

Vision Disturbance

You may experience double or blurry vision along with a sensitivity to bright lights or flashing objects. Some people also have jumping or bouncing vision, poor depth perception, and an increase in their dizziness if they look up or down. Any visual stimulation such as watching TV, moving traffic or reading can also be a trigger for the dizziness. Dark rooms, carpets with alot of pattern, and open spaces are also a very common complaint.

Muscle & Joint Pain

Headaches, neck pain, and leg stiffness often along with a tingling sensation on the top of their heads, face, arms and sometimes legs.

Emotional

Anxiety and panic often go hand in hand with this disorder sometimes however it can also lead to depression, so if you are feeling very tired, frustrated, sad, easily cry, and have either lost interest in things you once enjoyed or you just don't think you can handle feeling this way any longer, please seek professional help.

Other Symptoms

Other complaints from people living with this disorder are, Nausea, motion sickness, forgetfulness, confusion, heat and cold intolerance, slurred speech, flu like symptoms vivid dreams, fatigue, tremors, and clumsiness. -------------------------------------------------- If you are not too afraid to read a lot of "horror stories", you can visit this: The Dizzy Lounge Message Boards (very informative site!). You can post any of your questions there, and they will respond to the best of their knowledge and experience. You will get good advice (much better, than the majority of doctors), very inventive and helpfull coping techniques, and a lot of compassion from people like you, from the dizzies.

I am a big fan of that website.

Love you all,

Anna

58. Comment by Ron on December 11, 2004 11:39 PM permalink

Hi all, I'm another with this Labyrinthitis. I was first thought to have Meniere's but my specialist sayn it Labyrintitis. I started getting dizzy spells about April 2004 and had a big attack in July 2004. Ever since my head feels like it is being compressed in a vice form the outside yet dizzy and light on the inside. I feel my brain has become detached from the inside of my head. I have had basicaly six months of pain, sickness and feeling rotten. I work with computers and at the end of every day I feel like my head is going to explode. I trip, stumble and fall and make so many mistakes it's sad. I hate it. Cheers.

59. Comment by Ron on December 11, 2004 11:42 PM permalink

60. Comment by on December 13, 2004 2:50 PM permalink

Ron, try to keep positive, you will get better it just takes time. We can all sympathise with how you are feeling, take comfort that you are not alone. Go back to your doctor and ask to be referred to see a physioherapist for vestibular rehibilitation training(VRT). Alternatively do a search for Cawthorne Cooksey exercises which are basically the same as VRT. I have found these exercises very helpful, in a way it is easier for me to be proactive with this illness rather that just sitting at home letting it control me. I would also suggest that you explain to your work mates how you feel, most people are very understanding! Keep smiling and keep in touch. L

61. Comment by Eddie on December 13, 2004 2:58 PM permalink

Thank goodnes I've found your site and hello to all - I'm sitting heare with a foggy head and even more foggy eyes - having spent the morning in bed feeling awful, made myself get up and check out all possible info online and tripped over this site by chance.

Have had VL now on and off for 6 months - luckily it is relatively copeable with but at less than good efficiency.

The question I ask - being a heavy wine drinker, is what effect does alocohol have on this disease - Anna has mentioned it a couple of times but not many of you - is it a good odea to give it up completely until fully recovered ( I keep on almost getting better and then Wham - back to the beginning - it ought to be called snakes and ladders disease ) - so comments please - and I'll start on the Green Tea and the multi Vits and am already taking Gingko but will up the dose to 120 - thanks all - Eddie

62. Comment by MARY on December 13, 2004 7:15 PM permalink

Hi all -- Eddie, I wanted to get back to you. I have had this for over four months now -- same symptoms as most everyone else. After the first month, I had a few days where I thought that I was over it, so I had a few sips of wine when out for dinner one night. It made me feel completely ill -- brought back the symptoms and I had to leave the restaurant. So, I haven't touched any alcohol since. From everything that I have read, it's a good idea to stay away from alcohol and any food or drink that has caffeine in it. I had a bad experience with coffee in the beginning, too, before I knew exactly what illness I had -- it brought on a horrible vertigo episode. I can't believe that I haven't had a glass of wine in over four months -- but I've learned that you have to do anything and everything to reduce the intensity of these symptoms.

Hope this helps -- hang in there!

Mary

63. Comment by on December 13, 2004 11:06 PM permalink

Dear labbies,

No alcohol please! It is toxic for your inner ears. You have them already disturbed, why should you add up to your problem?

I used to enjoy a glass of good wine, with good friends, and nice food. Now, just a single sip of wine, or beer makes me so dizzy and sick to my stomach, that I completely excluded alcohol from my life (at least, until my full recovery). I still like good food with good friends in a quiet environment (no noisy restaurants, I can not handle noise at all). But no alcohol! I still drink coffee (just a very poor habit). I have to cut on it. Everybody’s experience shows: coffee in not right for the inner ear. I promise to quit.

Continue to struggle, Anna

64. Comment by Kevin on December 14, 2004 3:32 PM permalink

Hi All,

Haven't posted for a couple of weeks but thought I'd share my progress. It's at least 5 months now and things are deffinately better. I've had a string of good days althouh the last 2 haven't been brilliant, but I think thats due to a very stressful situation I am currently going through... family issues. I've learnt that the dizziness can come back at any time so when I feel good, I just relax and love every minute of it. Whilst the symtoms are still there they do not seem as bad as the first few months. I'm off any supplements, Gingko was giving me bad skin, but instead just eat as healthily as possible, fresh veg and fruit. I also drink at least one cup of Green Tea everyday, it tastes awful so its got to be good , right?

Alcohol is a big no no in my book. You just don't need it! It's toxic, period. Although a glass of Champaign is ok for a special occassion ;-)

Another AMAZING relief, perhaps even a cure, is to press on the middle of your forehead just above the eyes with your index finger. Believe me this does work, although you end up with a red mark or dent on your forehead so suggest not doing it in public for long periods. I discovered this on a journey home, my partner was driving and after about 40 mins I actually felt fantastic! I was almost symptom free for the next few days!

Maybe I'm just being mad but I'm sure it works. Try it and let me know how you get on.

Seasons Greeting fellow labbies !

65. Comment by Anna on December 14, 2004 4:29 PM permalink

Hi, everyone

Kevin, did I understand you correctly, that you have to press your finger for about 40 min on your forehead?

Maybe, you are not mad at all. What I know about myself, a very tight band around my ears, or forehead somehow works for me very well. It seems like my unsteadiness diminishes. Actually, I wear these tight bands almost all the time, even at work. My co-workers and the boss know about my problem, and they do not mind. I will try Kevin’s method and will post the results.

Anna

66. Comment by Kevin on December 14, 2004 11:31 PM permalink

Hi Anna,

That's right, pressure to the forehead, in particular just above the eyes seems to focus the mind and has the effect of regaining balance and relieving the brain fog.

I had considered wearing a baseball cap with an object under the rim to apply pressure but I never wear caps, they don't suit me ;-)

Let me know progress Anna ;-)

67. Comment by Jill Colton on December 18, 2004 11:17 AM permalink

Can I just ask everybody - how many of you got this condition after being on a flight?

I have heard via word of mouth of several cases where these symptoms have occured after a flight and I am looking into this further as my condition started after a long flight nearly a year ago.

Thanks in advance

Jill x

68. Comment by Kevin on December 18, 2004 11:54 AM permalink

Hi Jill,

Mine was a week after a flight. However I put it down to catching an inner ear infection from a swimming pool whilst on vacation. But i may be wrong.

Kevin

69. Comment by Ann on December 20, 2004 4:44 PM permalink

Hi, everybody,

To answer Jill - The symptoms of my fifths bout of labs appeared right after a long flight from Japan to USA. But the first, second, third and fourth bouts were not connected to any airplane flights. Each of these bouts was from 6 to 13 months long and many symptom-free years apart. Now I am recovering from that fifth bout of labs, which was triggered by the long flight from Japan. I think, when your inner ear is already damaged by something (infection, small trauma, weakness of immune system, or previous trouble with inner ears) anything can be a trigger. Air pressure changes in the airplane can definitely add up to the problems listed above.

Anna

70. Comment by Em on December 20, 2004 5:57 PM permalink

Hi all

About the flight thing...if your dizziness starts directly after a flight - and it is a motion related dizzziness (rocking etc) it is most prob not labs but MDDs - do a search for this.

BUT if you already had labyrinthitis and went on a flight months/years later, the flight can make you decompensate as the prologed motion is too much for an already sensitive inner ear.

Merry Christmas to all xxx

71. Comment by Robin on December 20, 2004 6:25 PM permalink

Hello fellow Labbies,

I have recently found a Doctor who is a Dizzy Specialist, one of the four in New Jersey who is associated with VEDA. She has informed me that I probably have Menier's Disease as opposed to Labrythitis. I am still trying to figure out the difference. I don't seem to have the hearing loss or the "drop down" attacts. I am on month 5 of this problem and I am having more better days, but I still have problems with headaches, dizzy episodes, fatique and brain fog. She told me that Labrythitis is a general term of all the inner ear problems. Can anyone tell me how these differ? Is there an end of Menier's? Lab seems to eventually go away. Is this also true of Meniere's?

72. Comment by Jill on December 20, 2004 7:16 PM permalink

Thank you all for your comments re flights - was just curious of how common it was as a cause of labs as I seem to be hearing of it a lot. Your comments were very interesting - obviously it is not necessarily always a cause but can often be a trigger.

Robin try the site www.menieres.org.uk - to find out about menieres.

Merry Christmas to you all Jill x

73. Comment by Hugh on December 20, 2004 8:40 PM permalink

Hello fellow dizzy sufferers. I've been diagnosed with the dreaded labs and have had the symptoms for about 5 weeks now. I feel I'm getting better although it does seem a very very slow process.Recovery seems to feel like 2 steps forward, one back. I was interested in peoples comments about long haul flights. Mine came on 2 days after a long haul flight from London to Hong Kong and have read other peoples experinces who got this after a long haul flight. I think its more likely that the air pressure just exacerbates an existing problem? Guess I'm just trying to find answers like everyone here but it does seem an interesting coincidence.

Now for the most part I just feel a bit light headed and only seem to get dizzy spells once in every 3 days. Hopefully a sign I'm starting to recover. When I get the dizzy spells I also feel like I'm going to faint and just start to panic as I am sure you'll all understand. I've started to forget how feeling normal is. Anyway it is a comfort, although rather selfish, to know that other people are suffering the same as me. I hope you all get well soon.

Merry Christmas!!!

Hugh

74. Comment by Em on December 20, 2004 11:28 PM permalink

Robin - it is partially true that labyrinthitis can be used for general ear problems though not by professional specialists. Labyrinthitis is damage or inflammation to the inner ear. Menieres is entirely different - it is caused by fluctuating inner ear fluid - they have no idea why - it is incurable but can be managed by diet etc. Its symptoms are entirely different to labs. Menieres occurs with attacks of vertigo along with tinnitus and hearing loss. Labs is constant and after the inital attack, does not consist of spinning vertigo.

So, in summary, by GP's labyrinthitis can be an umbrella term for any unknown dizziness but this is just bad practice as labyrinthitis is a condition in itself and quite different to many other dizzy syndromes.

75. Comment by Anna on December 21, 2004 4:22 AM permalink

Hi, everybody,

Robin, from all the information, that I read, I totally agree with Emma on the differences in labs and Menieres. It seems, that even for a non-specialist it is not extremely hard to distingish one from another. "Menieres occurs with attacks of vertigo along with tinnitus and hearing loss." Exactly! Robin, do you have tinnitus and hearing loss? It looks like you don't. I am not sure, that this "dizzy specialist" is qualified enough. Just my opinion.

Wish you good holidays.

Anna

76. Comment by Robin on December 23, 2004 3:10 AM permalink

Dear Emma & Anna,

I have never had tinnitus or any apparent hearing loss. I am having many more good days than bad and my dizzy spells are becoming just "light headedness". I don't have any real attacts of vertigo anymore. I am still affected by barometric changes, but less now. I think am recovering from Lab, in part, because the cold whether is killing many of the molds and pollens I'm allergic to and the inflamation is going away. I am now going back to the gym and taking my life back from this disease. The doctors have making this ordeal worse. No more drs. I can't get a straight answer anywhere, except here. Thanks to both of you from my heart.

Happy Holidays

xxx Robin

77. Comment by Em on December 23, 2004 9:48 PM permalink

Robin - have you looked at my site www.labyrinthitis.org.uk - maybe (I hope) it'll help you? From what you say, it sounds like labyrinthitis. Good on you for getting your life back. Keep fighting. You'll get there.

xxx

78. Comment by Kay on December 23, 2004 10:45 PM permalink

Just stumbled across this site whilst looking for info in Labs and feel like crying with the immense relief.I have had these symptoms which have now been diagnosed as Labs since beginning of November but it seems like much longer. I am not able to leave the house currently due to the feeling of faintness and sometimes the dizziness. I find the main symptoms seem to alternate. Sometimes I am just so weak and nauseous that I think 'if only the dizziness would come back I could cope with just that' but when it does and the nausea returns its the same.i am currently using 'betashistine' . for me they do not shift the dizziness completely. I worked full time before this and now am so fed up being in the house all day every day.it feels like life is passing me by. I was not aware of this condition before this and was overjoyed that all of you had felt you wanted to contribute to this site as it showed me that I have not been 'imagining' these ailments and that this horrible illness has affected many of you as it has me. I certainly not glad you are all suffering too but its nice to know you are not alone. Thank you to you all for making me see a light at the end of the tunnel. Much appreciated. Kay.

79. Comment by Anna on December 25, 2004 1:54 AM permalink

Hi, everybody,

Just want to say Happy Holidays for everyone who are still fighting this cruel illness and to their families.

Wish all of you more patience, patience and patience. One beautiful day you will be absolutely symptom free, your life will come back and you will be proud of yourselves, that you could get through such a dreadful time.

Love you all, Anna

80. Comment by Michele Costello on January 2, 2005 5:15 PM permalink

Have just been diagnosed with Lab. I have been feeling really bad for about 6 months and I been to the doctor on numerious occasions- with no diagnosis. Fuzzy head, dizziness, nausea and now a spinning room sensation when I turn over in bed. My doctor has been next to useless but has recently prescribed prochlorpazine- this is working and my dizzy days are better, although I do get room spin a little at night still!!

I am relieved to know that it is called something as I thought I was going mad!! I am an assistant head teacher in a secondary school and have not had any tme off of work. Some days are really difficult to cope with and I get really down at times. The worst thing is not knowing when it will go away!!

My friend has exactly the same symptoms as me and she has had these symptoms for around 5 months. Can lab be passed on from one person to another???

Thanks

Michele

81. Comment by Bruno on January 3, 2005 3:55 PM permalink

Happy 2005, We made it! It's -26c out side this morning and although that seems very cold it's still warmer than yesterday's low which was -38c. Needless to say it's hard to get outside when it gets that cold and staying indoors starts to wear on me after a few hours, up until Oct. 8th I was a very active outdoors kind of person.

I went to my neurologist's appnmnt on Dec. 19 as a follow up to numerous doctors visits and tests. Although I have been relatively free of the dizziness I still get episodes of intense anxiety and what Mary described as brain fog when I do get an attack of dizziness. The neurologist assures me that "lab" and all these symptoms go hand in hand. He said that even though I may be over the VL I am probably suffering from the after effects of the disease called BPPV which leaves small particles in the vestibular canal and can bring on quick episodes of dizziness. I was doing alright up to that point and then my mother passed away just after Christmas and I'm not handling my recovery very well anymore. The neurologist said that in the inner ear it takes the body a long time to breakdown and absorb the particles left over from the virus. That in some cases symptoms can last for years but you WILL get better.

In MY case, the anxiety, the brain fog, and now the depression have all been magnified by the initial illness. This thing DOES go away eventually, hang in there and don't do anything stupid.

As an answer to the question about drinking wine; through experience I have found that even a half glass of wine or half a can of beer will affect me for one to three days afterwards. It's just not worth it.

Good luck to all, Happy 2005.

82. Comment by mary on January 3, 2005 10:27 PM permalink

Bruno, so sorry about your mother -- hang in there -- you will make it through everything. Try to stay positive although I know that it is very difficult at times.

I have a couple of questions for anyone out there with time to respond -- I have these moments when I am lying flat trying to fall asleep where I feel like I (or my brain) am going to "float" away or my brain is short-circuiting or spinning out or something. It is hard to describe -- it is not the vertigo sensation of spinning around but happens when my eyes are closed and I am about to drift off. Has anyone experienced anything like this? I know it sounds bizarre.

Also, after five months, I still have problems walking very far -- I just feel unstable like I may not be able to make it back home if I am by myself. Not the spins, but a little off-balance and my legs feel weak and wobbly. Familiar to anyone?

That said, I feel completely out of shape with weak muscles -- is it a good idea to try to exercise a little? I was thinking of lifting weights -- light weights while standing or sitting in place. Has anyone tried any light exercise when having a good day?

Any info would be appeciated. Happy New Year to everyone!

Mary

83. Comment by Kevin Savage on January 3, 2005 11:03 PM permalink

Happy New Year All,

Mary, the sensation you describe, floating when you are lying down, sounds very similar to what i am finding. I now have good days and not as good days, 6 months on from my first Vertigo attack. Last night I had a terible night sleep, felt like I was paralyzed everytime I kept waking. Quite scary. Almost like my body was floating several inches off the bed. I also had puslating, twitching on the one side of my head. All in all very freaky and worrying. However I am determind to fight and starting training in my gym every other day. I feel great after exercising... but I am well aware of my condition and make sure I don't over do it. My advise is push yourself but listen to your body and mind and don't over do it!

Kevin

84. Comment by Stuart Clarke on January 4, 2005 12:52 PM permalink

Happy new year to all.

I have been suffering from labs for 5 weeks now. Went tp pick up my wife from work and starting feeling very dizzy ended up in ENT went home that night. my dizzyness has almost gone but I am feeling the foggy head thing.

My head feels heavy I get pains in the back of my neck and I get a pressure feeling around my head espically the top of my head, and my right temple gets sore from time to time. which is very worrying, is this common with labs?

someone please let me know if anybody gets the head pain/pressure thing.

reguards Stuart

85. Comment by Kevin Savage on January 4, 2005 2:24 PM permalink

Hi Stuart,

Don't worry too much. Sounds just like the symptoms I have on and off. They are quite worrying, anything with the brain and head is a cause for concern but 6 months on I appreciate that I'm not going to drop down dead or collapse in the street. Try head and neck massage. I found this really helps, I also find that pressing with your thumb on your forehead, just between the eyebrows, can help relieve the symptoms too.

Hang in there your not alone.

Kev

86. Comment by Em on January 4, 2005 6:22 PM permalink

Michele - yes labs can be contagious at the start...but the spinning you describe when turing in bed sounds like BPPV to me - you may have developed this as a result.

Bruno - yes labs can cause BPPV - but it was odd for your specialist to say about the particles dissolving as this is true yet BPPV can be cured by the Epley Maneouver which saves simply "waiting".

xxx

87. Comment by emily on January 4, 2005 10:51 PM permalink

http://www.thedizzylounge.com/

http://p084.ezboard.com/bdizzylounge

Here are some web sites for ppl suffering from dizzies.

88. Comment by Stuart on January 5, 2005 9:02 AM permalink

Hello everybody

My dizzyness is almost gone but I seem to have a ache in my head which seems to move around my head at different points does anybody else get this.

reguards Stuart

89. Comment by Michele on January 5, 2005 5:37 PM permalink

Hi Stuart

Recently I too have developed a really bad ache at the back of my head and it often goes down my neck. It feels like I have been hit in the head with something! Hope this is a symptom and nothing else!

Michele

90. Comment by Anna on January 5, 2005 9:18 PM permalink

Hi, everybody, Stuart, you are a new lab sufferer and you asked about headaches. Headaches are one the most common signs of labs. Most of us, lab sufferers, experience headaches and feeling of pressure on, or inside the head even when dizziness is not that severe, or even when it is gone. Sometimes I feel like my head is so heavy that I cannot carry it around. All kinds of pains, aches and pressures are moving from one spot of my poor head to another. Two MRI tests back in 1995 (after severe bout of labs/BPPV) and in 2004 (severe labs/BPPV bout again) were absolutely normal. Michele is right saying about headaches: "...this is a symptom and nothing else". This is a very tough symptom, so I tried all kinds of pain killing medicine just to get through days, going to weeks, turning into long and long months. But, basically, yes, it is just a symptom.

Wish you all to get rid of at least this one symptom.

Mary - you said, that you feel completely out of shape. I think that is a great idea to start to exercise little by little. Only do not push yourself too hard: take it easy. Stop whenever you feel tired. Do not walk far away from your house. Remember, that you will have to return back....

Anna

91. Comment by Antoinette on January 5, 2005 9:22 PM permalink

Hi Everyone,

I first posted in March 04. My VL has improved after 10 months. Air pressure changes seem to bring back balance problems.

I too thought it would never get better. Be patient. I gave up wine with dinner, even though it was once a month. What about chocolate? Does it bother anyone because of the sugar or caffeine?

Thanks for all your support! God Bless Us Everyone!

Antoinette

92. Comment by stuart on January 6, 2005 3:08 PM permalink

hello everyone

Hi Anna

Thanks for your reply you have cheered me up today, I was thinking about getting a scan done as I thought I was going mad, my headache, it is a slight ache which moves around my head at different points and that along with the pressure in my head as if my brain was swelling was sending me crazy.

I also get extreamely tired at times too.

Anna does the head pressure and the aches ease as time goes by.

reguards Stuart

93. Comment by mary on January 6, 2005 6:22 PM permalink

Thanks everyone for your comments and advice. I'll let you know how the exercising goes -- I haven't started yet. I have had three days in a row where my symptoms have improved -- maybe things are easing up a bit after just passing the five month mark.

I started taking ginko (in the morning and at night) and a B-complex vitamin every night about a month or so ago -- I think that it has helped and would definitely recommend it as a lot of you already have. Also, when I feel like I may be coming down with something or when my kids are sick -- I take extra vitamin C off and on throughout the day -- that seems to help my immune system which is a good thing since an illness (especially a cold/sore throat) just makes all the lab symptoms worse.

Also, I have found that the severity of my foggy-head/spaciness/lightheaded/about to faint problem is pretty related to how much my body sways on its own when I am standing still -- the last few days my body has not swayed as much and I have felt better. Probably sounds completely strange -- but I now use it as my test to see how my day may go -- although even if I start out the day better sometimes things get worse without much notice.

Stay strong everyone -- we will get better!

Mary

94. Comment by Emily on January 7, 2005 2:57 PM permalink

Hello one and all.

I am emily 27 from the mid-west and I have been suffering from this since 8/11/04. 4 hours after I steped off of a plaine home from a vacation to Cancun took a shower and ended up in the er. Next day went to Dr. He gave me a MRI which came back negative and a ultrasound of heart and stress test. I called my doctor and had him fax me the results and confirmed with my eyes that they were negative. For the first 2 weeks I could not work or stop spinning. Oh and another really scary thing was my vision was tilted, things I knew were in a horzontal positon were in a tilted vision. Was given Meclizine which only succeeded in making me sleep, so weather it worked or not I dont know. Dr then gave me Allegra which like Meclizine is an antihistimine but not as powerful it has helped me since then and I can tell when I do not take it. Well then was sent to my first ENT. He sent me to get a ENG and caloric test. My hearing was perfect but the Caloric test had some results. The only way to describe it was when the put the hot and cold air in my left ear it was like I was in a hurican. In my right ear it was like a slight beeze. Come to find out the damage was in my right ear the tornado response was the correct response. Well my first ENT said that the amount of damage done was not enout to make me feel bad (LOL) and that I was uncurable gave me a pat on the head and sent me on my way. Needless to say I was not happy with this response. So I went to a second ENT. He listend (wow that is great). Looked at all of my test results and said well there is no way to 100% diagnose anyting. All we can do is take what we are told and the test resuts and put together the best picture for a diagnosis. But the way you described things leads me to belive you had a viral infection in your ear and it has cleard up but you are for some reason having a hard time dealing with the damage. At last a good doctor not a nut job. So I am not cutting back on the Allegra it seems that medications you take to make you less dizzy actually can make it longer for you to recover. Your mind just has to find a way to deal with the damage. Not ignor the problem. He also sent me to get VRT (vestibular rehab) My rephab theripist has been very helpful beacue my sympotms are so mild now that I can get on with my day and no one can tell I am sick. But my mind and body still feels the pull to the right side (the side of my damaged ear). After the 4th month the brain fog seemed to clear but was replace with twitching muscles on my legs (anxiety) and pins and needles shooting througout my whole body. That is now clearing up. I have had the depression. Anxiety. Spend most of christmas in room crying. But also seem to have a in general more realistic and mature attitude about life. And appreciate the little things more. That is my story for now. I am glad I found this sit. It makes me feel less alone. It is expecally nice to hear the symptoms of ofthers beacue it lets me know I am not crazy and the successes big or small beacue they give me hope. Thanks to one and all.

95. Comment by Anna on January 7, 2005 5:58 PM permalink

Hello, dizzifighters,

Stuart - Headaches and dizziness go together hand by hand. As the dizziness subsides with time – so the headaches also do. Another question: how much time will it take to completely get rid of headaches after the dizziness has gone. There is no rules, no time frames, it varies from person to person. My headaches are now less frequent and not as severe, as in March 2004, when I had the worst of my dizziness and imbalance. Also, I learned all the triggers of my headaches. In my case the worst triggers are: noises (I hate motors of all kinds, noisy restaurants, super-markets, etc. I have to ware earphones Bose, Inc. almost all the time) and lack of sleep. My advise to you – learn to recognize the triggers of your headaches to make them at least less frequent and severe. You will, probably still have “heavy head” for some time. But it will go away eventually (very slow and gradual process with ups and downs). I was absolutely 100% back to normal (no dizziness, no imbalance, no headaches,) after 11 months of labs/ BPPV back in 1995. Look, guys, Antoinette is on her way to recovery – this is a good news. Good luck, Antoinette! Emily, I read your post very attentively. I have a great compassion to your feelings, as all others on this site, because we are in the same boat. Frankly speaking, I have a lot of bitterness towards many doctors whom I dealt with during re-bouts of my labs. I do not trust them any more. So, I try to search every bit of information available to help myself. What was the most interesting in Emily’s description for me: “My hearing was perfect but the Caloric test had some results. The only way to describe it was when the put the hot and cold air in my left ear it was like I was in a hurican. In my right ear it was like a slight breeze.” This is exactly what happened to me on my latest tests in April 2004. And in the same ears. Emily writes further: “Come to find out the damage was in my right ear the tornado response was the correct response. Well my first ENT said that the amount of damage done was not enough to make me feel bad (LOL) and that I was incurable”. And this is exactly, that I heard from my jerk “specialist”-doctor.

Emily, based on some of my research, I have a suspicion, what damage could be both in yours and mine left ears. But before that I have some “strange” questions to you: 1. Does the sound of your own voice bother you (makes you dizzy, bring headaches)? 2. Do other sounds bother you? 3. Do atmospheric pressure and weather changes strongly affect you?

Everybody,

Chins up.

Anna

96. Comment by Emily on January 7, 2005 8:40 PM permalink

Hello to one and all.

Anna I know what you mean I have lost some respect for doctors. My general doctor was never mean but he just did not understand. He even admitted that once he did the MRI and Heart check that he was at the extent of his experience in this area and recommended me to my 1st ent.

Now that guy who was supposed to be a specialist was a joke. No comport or understanding just "incurable" as a diagnosis. To all of you who are not happy with your ENT's opinion I recommend to get a 2nd, 3rd, 4th, or 5th until you find someone who you are comphortable with. I was luck that my 2nd doctor thought there is no magic pill that will help me, he takes my calls, makes appts periodically for me just so I can come in and talk about progress and see how doing. Makes me feel better about what is going on though he cannot help me.

Anna I have read all of the posts and I am greatly impressed by the responses you give to almost everyone who posts I am sure it has made a difference to many who are going thru this. Makes me feel go to get a response from someone who know really knows what I am going thru.

To answer your questions. 1. No my voice does not really bother me. but 2. Sometimes outside sounds bother me. I get startled a lot easier than before and sometimes even my son just talking to me makes my eyes want to pop out. A small theory I have on this would be if you think on it. The course of the original infection must have only lasted regular 6-8 weeks doctors say that it takes to get rid of this. But for some unlucky few of us, the after effects of this do not want to go away. I wonder if the damage to our vestibular system was more of a permanent un-healing damage so we have to learn to compensate for the damage while other heal 100% so they do not have to compensate only deal with the infection while it is happening. We with permanent damage have to spend weeks then months sometimes years re teaching our brains to balance our bodies.

3 I have also been paying attention to things like humidity and the barometric pressure. I have noticed days that were good when they were up, down, one up one down. That seems to play as far as I have observed little to no role. What I have noticed was the worst days I have are not when it is stuck at a particular up or down. But when the humidity or barometric pressure is making a significant change, such as raining for days the when it starts to quit and the humidity is going down I am tiltier. Or the barometric pressure is rising and I am tiltier. Seems like it is worse when it changes maybe I feel better when it is steady weather but when it changes the pressure changes and I have to compensate all over again. If that is the case as all of my thoughts are just that thought then I live in the wrong place for a disorder like this.

Anna I would greatly like to hear your answers to your questions because that would give me some insight to the way you are feeling. You did have a point on the caloric test. Do you have hearing loss. Was that the only test that had any results for you. Well maybe not official results but you definitely noticed a difference. Oh and do you have any or much nystagmus that is how the doctors base the caloric test results I think and after the first month I had little to no nystagmus anymore but what I felt on the results was defiantly a difference.

I am not meaning to exclude anyone else. If anyone else has answers to the questions or had a ENG caloric test with results (and if you have not you should call you ENT about getting one) fill me in on your results. I have made this a personal hobby since I seem to be in the thick of it and would love to hear about your experiences. To another day of dizzies/tilties/jerkies/fuzzies and foggies.

Emily

97. Comment by Em on January 7, 2005 10:43 PM permalink

Hi Emily - my website is the labyrinthitis.org.uk one and too have inner ear dysfunction frm labyrinthitis - my caloric test showed left inner ear damage, no hearing loss.

Im glad you are improving - thanks for your post - I know only too well the horrors of vestibular problems - it has totally changed my life - but now that im under a good specialist (you are right you have to search) I feel more supported and confident of a recovery. Am doing VRT and am due to have CBT.

98. Comment by Em on January 7, 2005 11:57 PM permalink

PS) Thanks rich for putting the external link on! :-)

99. Comment by Rich on January 8, 2005 9:10 AM permalink

You're welcome. By the way, that's the first boxed external link anywhere on Sharp Blue!

I think I shall have to make a third comments page soon, or maybe even add a whole labyrinthitis weblog.

100. Comment by Kevin Savage on January 8, 2005 11:37 AM permalink

Hello,

Just thought I'd drop a quick post for those who have been following my progress. I've been suffering for 6 months now and had many more good days, almost 100% normal. However I still haven't had a complete week without symptoms. Most unfortuantely last night was not a good night. Here in the UK we are experiencing a strong weather front with wind speeds up to 90mph. This is deffinately effecting my head, I can feel the difference in air pressure. I started feeling very spaced out last night and got very anxious as i thought I was about to start spinning out again, this time unlike the last few months, it felt quite bad. Therefore i didn't sleep particularly well and this morning have bad brain fog. I would expect most suffers can relate to this, I'm posting the experinces because I know it will help many other people, like the posts that have gone before have helped me so much.

Thanks x

101. Comment by Em on January 8, 2005 12:53 PM permalink

I feel priviledged Rich!!!

Yep re:making a new page - unfortunately there are loads out there suffering this cruel disorder...

102. Comment by Linda on January 10, 2005 10:27 PM permalink

I am so happy to have found this site today. I blew my nose trying to clear out a bad cold, sinitus which I had been suffering from for over a week, when I suddenly went deaf in the left ear, then lost my balance, then started vomiting. I spent over 2 days in the hospital with the room spinning. Couldnt stand the TV stations like CNN with that banner that moves at the bottom of the screen. I spent 3 wks in bed mostly, with brief moments to try to cook, etc. What a Christmas. I was able to go back to work 1/3, but still experience many of the symptoms I see here. I too am foggy, have an out of body type feeling when walking and dont feel secure walking across a parking lot or around crowds of people. I am into the 5th week now. My hearing has gradually come back, but I still have tinnitus. I am also very tired and want to go to bed as soon as possible every night. No amount of rest seems to make me feel like my old self. I am so glad to read of everyone's experiences. The doctors wont tell me much, just that it will take time. Thank you Rich for this site.

103. Comment by Gabi on January 11, 2005 12:14 AM permalink

Hi, Thank you to all for the information on this dizzy condition, I am learning even more than I knew before. What a road we have to travel, I never would have thought. Gabi

104. Comment by Anna on January 11, 2005 12:16 AM permalink

Hi, everybody,

Somehow, I am in a positive spirit today. Because, like Bruno said, “this thing DOES go away eventually”. After more, than 14 months of my fifth bout of labs/BPPV, or whatever it is, I started feeling kind of my old self. Not normal yet, not yet, but “kind of”. Also, I read, that Kevin is doing almost OK after 6 months of fighting the disease (isn’t it great?).

Emma (I am sure, that you will not be angry with me if I quote the update of her progress from her website labyrinthitis.org.uk:

UPDATE (24th December 2004). Emma has finally seen a Neurotologist - diagnosed with left inner ear damage - same as Ilia! She is on their VRT programme and is scheduled to have CBT. They suspect the anxiety/depression (although not too severe) has hindered Emma's recovery but also clearly said that dysfunction from Labyrinthitis can indeed go on for a long time and they don't know why people recover at different rates. Ilia recovered at the 3yr mark so Emma is not there yet! She's hoping 2005 will see big improvements for her. In the meantime, she plods on through the "Labyrinthitis journey" - determined to beat it in the end.

Antoinette admitted, her VL has improved after 10 months, although she too thought it would never get better. Others are in the progress and fighting. As for Linda. Linda, you are probably suffering from perilymphatic (perylimph fistula) on your left ear. Your symptoms are so obvious and so typical for this disorder, that I just wonder: why did not doctors immediately provide you with the right diagnoses? The good thing is, that fistulas caused by so called Valsalva manouvers (for example, blowing the nose) usually heals by themselves with time and rest. You should not bend down, not carry heavy things, avoid fast movements, giving the fistula a chance to heal. You better read yourself the link http://www.dizziness-and-balance.com/disorders/unilat/fistula.html Just a brief abstract from this article, written by a very renowned specialist in this area Dr. T. Hain: Patients with fistula should avoid · Lifting · Straining · Bending over · Popping the ears · Forceful nose blowing · Air pressure changes such as due to air travel · High speed elevators · Scuba diving · Loud noises (such as your own singing or a musical instrument)

Emily, somehow I suspect fistulas in your left ear and in my left ear. I do not have time right now to explain, why I think so, but I will do it later tonight, or tomorrow. The difference with Linda, that for both of us (Emily and Anna) we did not have hearing loss in the left ear, but Linda did (it restored). Fistulas can be without and with hearing loss. Anna’s and Emily’s fistula could be caused by VL plus changes in ear pressure while airplane travel (Emily) or vigorous exercises (Brandt-Daroff exercises to remove ear rocks from labyrinth). In Anna’s case

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