Hi
Is there anyone out there who has had months of dizziness and then recovered completely? It really is helping to read the experiences of other people who are going through what I'm going through, but it would be great to read a success story!

I wish I could be one of them! http://www.healthboards.com/ubb/smile.gif

[This message has been edited by MPaiement (edited 01-28-2003).]

i started thinking i might have recovered after seven years....finially was so happy i could put my head in the sink of the hair salon...but a month after i did...whammm i woke up again with the room spinning and back to the beginning of another bout of labrynthitis.... reading here makes me feel better as we have so much in common... so frustrating.... ive been feeling better as long as i dont accidently roll over on my left side..or lay flat on my back... but i have days when im really tired and feel spacey.... feel real uncomfortable driving when im feeling this way....i forced myself to go back to work after a week of bedridden...but that was three months ago and i still "feel out of it" this is tough ..im the single mother of two kids..i have a big job as a recreation director.... and some days like today im really frustrated that i havent "fully recovered" will we ever?? and when we do /.... must i anticipate its return....ive had this happen to me three times the past twenty years..... and no it doenst get easier .....cause older i get ...less energy i have ... does anyone else have a sore neck and upper back with thier symptoms??? anyway ....sorry about my rambling.... having a bad day...

Lysa

When you say you've had it three times in 20 years, how long did each episode last? Are you saying that you had a seven year break and now it's back?

hi Jen.yes twenty years ago i woke up early am and i suddenly found the room spinning around me ..well more like the bed was coming up and i was flipping over...horrible nitemare... hmmmm for a few days i was out of it and id say the first episode lasted only a few weeks..... but then twelve years later id say.... again i was woken up by spinning horrible spinning..... this time it lasted much longer..... after the horrible spinning...you get that off balance sensation for a few weeks or so....but i was left with a positional thing...if i accidently put my head in wrong position it would jolt me.... i had mri..ect... drs said labrythitis/ benign positional vertigo....but no dr. offered me any suggestions for recovery.. i learned to live with and fight symptoms.....it took eight years before i finially had the freedom to put my head in the sink at the beauty salon recently and whammmmmmmmm this past oct i woke up agian ..room spinning..... same deal.... scarey though cause this time i am single divorced not married ....i took a week off from work..probaly could have used two months ....but im a fighter...and i really dont run to the doctors....im getting better but i have days where i jsut feel lousy..my neck and upper back really bother me..... and i still dont lay on my right side or flat on my back..the other day i got a massage and the therapist convinced me to attempt laying flat on my back..i did and ended up getting a hit of vertigo....then sick to my stomach for the next few days...so ...this sweet thing we have shows its ugly face now and then and most people dont understand it so i seldom discuss with anyone... i keep my head out of certain positions.... but when im tired i dont like driving...i feel spacey.... i find eating healthy ..exercising..... and drinking alot of water to be very important.... ps reading from this site has given me enormous comfort... thanks all.. most important for me is to fight it...keep fighting it ...and get plenty of rest...

Oh well, no success stories yet!
After 12 days of relative stability I've just had 4 days of hell. I experienced for the first time being pulled to one side, like you Mpaiement. That has stopped, but I'm so disoriented and depressed. Amazing how a few bad days can take away all the positive thoughts about getting better.... Lysa, I don't think I have what you have, the positional vertigo that is. I think I have vestibular neuritis as I have only ever felt dizzy with no other symptoms. It flares up and dies down all the time. Going on to 5 months now...

Jen,
I know just how you feel. Last week I was really starting to get much better days, then since Sunday have gone through some really bad days again. When I had this two years ago (not as severe as this time) I gradually got longer spells of feeling better. At first it would be a few good days followed by a few bad days. I would then be back at work for a week or two, then have to be off for a few days again. The good times gradually got longer, but for months I would get the odd couple of bad days on and off. It was really hard mentally too, as I started to wonder if I was making a fuss about nothing. People find it hard to believe that you can keep feeling like this for so long, so you do feel very alone with it. The one thing that has kept me going this time is that I know I got rid of it before. I feel it will take longer this time, as it has generally been worse - but am trying to stay positive that in time it will get better. I think the worst thing is that you are up and down - you're convinced that you're getting better - and then - wham! - back to square one again. For me, that is what makes it harder to cope with as it gets you so down. I just keep telling myself how great I am going to feel when this is all over!

Ruth
xxx

Lysa,

The symptoms you describe seem more like BPPV. If it's that your lucky. It's one of the most treatable vestibular disorder. Did you ever had the Epley maneuver done on you? Some people are cured only after one treatment.

I know what you mean when you say you get discouraged when you go back down. Every time I have good periods I hope that I'm getting better, but then after a few weeks I feel myself gradually getting worse again. That is so depressing. I want to go back to work. I'm now just asking myself if I can work during my worst periods. It would be nice if I could find a job working from home, but I just moved in a small town and jobs are not as easy to find. Do you know what's the most frustrating, I had to let go of a great, good paying, good benefits etc job!!!!!! Couldn't get long term dissability because I couldn't prove I was sick!!!! My bosses were sorry to see me go, but I couldn't see myself keep missing work because of my condition. I didn't want to do that to them, it was stressful just thinking about taking the bus, running all day at work, coming back home, taking care of my 3 kids etc. Again, I'm venting!!! Sorry!!

Firstly, we all need to vent so go ahead MPaiement. I agree with everyone in that this thing really drains me mentally. It is very difficult to keep positive and not get down when you can't go to the shops without feeling "dizzy"! Everything is an effort.

Also know what you mean about the good and bad days. I also keep thinking about how happy I am going to be when this is over Ruth!

I do think, as someone else has said on here, it is important to acceept we have it and that it will take a while to go and to be patient with ourselves. It can only help us fight it.

Ruth
So glad to hear that someone has had this before and that it actually goes away!!! And yes, my 'good' days are now longer than the 'bad' days, so i assume I'm on the road to recovery. When you had it the first time, how many months did it last?

hi guys...well no i never did have the epley manuever done but will consider..ive been reading about it...but...it all started as labrynthitis....and the symptons u all describe i also have just add to that the positional thing....uckk im sick of it..but lets face it..WE ARE GETTING BETTER.... right!!! im nto sure how ive held onto my job..perhaps becuse i lvie so close to work..... and i have this great office i can close the door and pretend to be working....

MPAIMENT..... My heart goes out to you for all you have been through... with work disablity ect.... problay my biggest fear as a single mom.... well my little one calls me so i have to run... keep your heads up guys... this too shall pass... only making us stronger perhaps.... if any of you want to talk directly u can email me at lysa246@aol.com thanks

Jen,
The first time I got this was the beginning of January 2001. Feb-May were quite hard - I was seriously thinking about giving up my job as I was having so many odd days off work and felt guilty about it. I would say from May onwards I was 95% free of the dizziness - just the odd day here and there. Then it just sort of went. So, probably about 5-6 months. However, since then I've noticed that if I am feeling really tired I tend to feel a bit dizzy and disorientated. Then I got it again in November 02 (and am still suffering!) and as soon as it started I knew what it was straight away - and thought PLEASE NOT AGAIN!!!
Emsybobs, one positive thing is that during my 18 months in between these two periods of labyrinthitis I had two colds, neither of which caused me any dizziness whatsoever - so hopefully once you have really got over this properly, hopefully future colds won't necessarily mean more dizziness.

Ruth
xxx

Thanks Ruth for that comment...I hope you are right and do feel it is perhaps because I am not yet recovered. Was having quite a good day today, managed shopping which did make me feel dizzy but I coped - but now I am home, am feeling dizzy! Does anyone notice that shopping places and crowded places really worsen the feelings? I find that if I look down at the ground and then up I feel v dizzy.

Am going to a different GP on Mon - will see if she is willing to take this seriously! Will report back.

xxx

Ruth
Thanks for that. Hopefully mine is also a 5 -6 month episode. I am in my 5th month now. Just had a very bad seven days after 12 days of feeling pretty good. I've just got back from the shops and felt absolutely terrible while I was there. Busy places and lots of visual stimuli definitely make me feel worse.
I can imagine your distress when it all came back. I hope yours clears up soon. Would you like to exchange email addresses? We seem to be going through exactly the same thing.
Jen

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[This message has been edited by moderator2 (edited 02-05-2003).]

Hello Jen ... my e-mail is [removed.com. If anybody wants to contact me, feel free.

Ruth
xxx

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[This message has been edited by moderator2 (edited 02-05-2003).]

Thanks Ruth...My symptoms sound similar also to yours Jen - crowded places make me feel v odd. Almost lightheaded but more like I have flung myself round and round for a while.

Woul like to add that I have begun to take magnesium a lot as read it elsewhere that it can bring the inflammation of the nerves down and I do think it is helping. xxx

Emsybob, where do you get magnesium?

I also get dizzier and more unsteady in a crowed room.

For those who are interested my e-mail is [removed].com.

[Please read and follow the board posting guidelines.
Email addresses are not allowed to be posted here.]

[This message has been edited by moderator2 (edited 02-05-2003).]

Loads of shops sell magnesium in the UK. Can you buy vitamins over the counter in Canada? If not, do a search on the internet, loads of companies will ship vitamins/minerals to you.

No problem getting vitamins here.

Oh Ok, then look for absorbable magnesium - let me know if is helps you.

Hi Everyone,

I had viral lab just over a year ago. I had 2 episodes about 7 weeks apart. Completely out of the blue I woke up with vertigo - the spinning room etc. which was one of the most horrible things I have ever experienced - I can understand people who end up in ER as you have no idea what is happening.

I had all the tests, but of course with VL it's pointless - there is nothing to see! They did find out I had the Epstein Barr virus which I have read can cause VL.

I was given SERCs to take - can't say for sure whether they had any effect or not - it's so difficult to tell.

I would say I have recovered 80%, but still have lapses when I feel dizzy. But I haven't had any vertigo, which I suppose is something to feel grateful for. I also suffer from excess phlem, and I am always bunged up (I blow my nose constantly!) and it's most my right ear that gives me problems.

I think it is important to actually identify your particular type of problem. Viral lab normally starts with a violent bout of vertigo that can last for hours - very frightening, but not a lot you can do about it. You are left with impaired balance and varying degrees of dizziness/off balance.

Some people have the positional one, which can sometimes be cured by special manipulation.

There are also some people who display the symtoms of Meneires - tinitus etc.

How long it lasts, as far as I can see, is totally individual. Some people never have another episode, and some have repeat episodes after a long period of time.

I think one thing is certain, it is never a short process.

I do know that sitting still in one position is not recommended (very easy to say when you have to sit behind a computer all day at work)!

Good luck to everybody suffering with this and please feel free to ask me any questions.

Hi Monkey, when you say 80% recovered, are you still off balance? Do you think people are often left with an unbalanced sensation even after the L'itis has gone? Or do you mean normally you have sever vertigo, followed by an off balanceness for several mths? I think what we have proved on ths message board is that L'its doesnt always begin with severe vertigo, mine started gradually, but it is still L'itis.

It seems L'itis is reoccurring and can take a long time to get out of the system. How long did it take for you to feel OK? Was your 2nd bout after a cold? As that is what has happened to me.

Hi Bobs,

I pulled this off the net, which I also posted on another thread about VL - this is exactly what happened to me so I guess I experienced the text book symtoms:

"Vestibular neuronitis, we believe, is due to inflammation in the ear's balance organ. Another theory is that it is caused by an interruption of the blood supply to one branch of the vestibular nerve that goes the labyrinth. It is hard to find anything on a laboratory test or x-ray, though there may be definite abnormalities on the ENG test discussed elsewhere. There is nothing to be seen in the ear. Most of the time there is no hearing loss. It can occur after a cold or virus infection and usually goes away and is forgotten about. Some doctors may call it a viral labyrinthitis, indicating some vague inflammation of the nerve or labyrinth. You may feel fine, then the problem appears out of the blue with frightening suddenness. A person with this entity gets so sick so fast that most of the time they end up in the Emergency room. There is severe vertigo with vomiting and unsteadiness. Vertigo always comes on when you change position but at first it may be so bad that even if you are still you will feel you are whirling. Eventually the problem may happen only when you move or turn or only when you are in a certain position. Then it may cause unsteadiness for a while and go away, perhaps even be forgotten. But you can still attack of full blown vertigo years later. What we can do is treat the more serious problem when there is an attack or recurrence. There should not be any sequelae or permanent damage. That's why it's also considered "benign" or not life-threatening or serious. This is not to minimize the discomfort from the problem. Sometimes the vertigo will degenerate into a less explicitly vertiginous more constant imbalance or lack of sure-footedness."

This is what happened to me - I had 2 terrible bouts of vertigo 7 weeks apart and after that just general dizziness and lightheadiness.

I can't recall I had a cold with any of the 2 bouts - but as I said I am constantly bunged up, my nose is like a tap most of the time and my ears feel like they need clearing out, combined with the Epstein Barr virus I didn't know I had, probably all contributed.

The point is your brain and inner ear mechanism need to recover and get in sync with each other - with some people this recovery period is longer than others. And as it is mentioned in the report above, some people never have a recurrence of the full blown vertigo, and some people do. But I suppose if you have never had the violet bout of vertigo which is the first indication for most people with VL - it is difficult to track your rate of recovery.

After the vertigo you feel sick and generally ill - it then takes a long time to get back to feeling relatively normal. As I said when I get tired or if I'm watching TV for long periods of time, I sometimes feel dizzy and disorientated - but all in all it's a lot better than it was, and I do think the longer you go without an attack the better you feel.

Trying to explain to people who haven't experienced this is sometimes impossible. You either don't talk about it, or just skim over the details, because you end up boring people. I read the best thing to do is put somebody on a office chair, spin them around for a minute and tell them to walk, and then say I have to live with that most of the time ...

Anyway hope this has been of some use to you.

All the best

Thank you for that. I liked the bit you said about twirling someone round in an office chair. Are you saying that you sometimes feel disorientated etc but generally the symptoms are no longer there?

I hate this Labrynthitis! Mine reccurs with colds and will do for a year they say so it is all so annoying!

Lastly, do you feel odd in crowds or out shopping?

Thanks for your help
xxx

Hi Emsybobs,

Yup, definitely feel much worse in crowds and out shopping. I'm better than I was, but supermarkets used to be a nightmare and are still difficult. I was put in touch with a friend of a friend who has had laby for a year - although great news is he is much better now. He told me that the shops and crowds problem is to do with too much stimulus. Your brain is trying to relearn how to balance. If you give it a lot to take in, it starts to work over time, hence the dizziness. Although you shouldn't avoid going out - it just prolongs the problem. I know this is easier said than done when walking around a supermarket makes you want to lie down/puke it's hardly an incentive to go there LOL. Do you feel better in environments that are familiar, especially your own home? He said this is because your brain is used to them, so it doesn't cause it as much stress.

That was interesting about what you said. Do you think the thing with spermarkets will disappear eventually? A year is a long time! But it does seem usual for Labrynthitis.

Yeh I do feel better in my own home - that's interesting.

Have you any coping strategies? What's happened to your dizziness if you have had a cold?

Hello there

Just got back from my first ENT appointment. I made the appointment so long ago and was dubious about going but thought I'd go anyway just to cross that off my list. I am SO UNIMPRESSED. He took no time at all to listen to what I had to say. Told me I had a "balance disorder" (yeah, like I didn't know that) and sent me off for a hearing test (which is completely normal). He has referred me to have an MRI. From what I've read from all of you, this is going to be an expensive waste of time. The ENT even said he expects it to come back normal! So what do you all think, should I cancel???? The only comforting bit of information he had was that five months of dizziness is not excessive for these 'balance disorders' (in fact it's quite minimal). He says he pretty much expects it to taper off and go away. These things apparently last from a few days to a few years... hmmm, having just typed that, not so sure if I feel comforted any more http://www.healthboards.com/ubb/smile.gif I think I'll stick with my vestibular therapist from now on. At least she listens to what I have t say...

hbep,

What you said about crowds, and the fact that you feel better at home is very interesting. Spinning people in a chair is also interesting. http://www.healthboards.com/ubb/smile.gif

Jen, I know exactly how you feel.

Don't you feel sometimes that doctors don't know anything about vestibular disorders. I saw 2 ENT's and I felt like they didn't know what I was talking about and didn't know exactly what to do. Isn't that their specialty!!!!

About the MRI, if it will give you a little bit more peace of mind, go for it. Is your insurance paying for it? It stupid to say, and people said that I was crazy, but I was a little dissapointed when they didn't find anything. I wanted them to find something that was treatable though!! http://www.healthboards.com/ubb/smile.gif Then afterwards you hear comments like : Well now you know you don't have anything serious, you are not dying, so stop complaining and get on with it!! Easier said that done!!!

Hi Jen ... when you go to an ENT specialist you expect them to really know their stuff, but many people have not had the most positive experiences! The ENT I saw was fine - and am grateful that he said vestibular therapy would be helpful for me - but it was like he had this list of questions he fired off - and I felt I wasn't really given the space to put across fully what had been happening to me. Like you, he suggested I have the MRI (he said it was just precautionary as he was pretty sure I have had viral lab) and I did go and have it (not had result yet). It's up to you, but like mpaiement, I think it is a good idea, just for peace of mind. Do you have to pay for it? Although I paid privately to see the specialist, I had the MRI done on the NHS, as he said it wasn't urgent and would cost me a lot of money if I went private. So am grateful to him for that.
I agree mpaiement... you get the feeling that there are very few people out there, specialists included, who know anything about vestibular problems. It's like they only know the basic textbook stuff.

Hi there

I will get the MRI through Medicare, the equivalent of the NHS but I will still have half the cost for my account...not quite as good as the NHS http://www.healthboards.com/ubb/smile.gif
I am toying with the idea of not going because I feel pretty good at the moment. If it flares up again, I'm sure I'll decide to go for the MRI. My appt is in 6 weeks time so I have plenty of time to make a decision.
Had a migraine on Friday which scared the hell out of me, but I get them anyway so shouldn't try and link the two! Dizziness didn't get worse with it. Thanks for the advice everyone.

Hello,
This is the first time I've realised that there a lot of us out there. I've had Labrynthitus for nearly 2 years now, and it doesn't seem to be getting any better.Not for lack of trying though. Medication hasn't done anything, so at the moment I am trying homeopathy. Has anybody else developed anxiety and panic attacks because of this? I can't go out on my own anymore or go into buildings, and crowds are a big no no! What i'd give to go shopping again!!
Anyway, enough of my moaning.
Bye.

Hello Sasha,

I know how you feel. I've been dizzy for nearly 1 1/2 years now and I don't feel I'm any closer to being better. I have better period than others but I get very dissapointed when I go back down, like right now. Only very recently a doctor diagnosed me with L. It started so gradually that no doctor diagnosed me with L. I tried many things, accupuncture, severe diet, etc. so far, like you, nothing has worked.

I know that a lot of people get anxiety with the dizziness. A lot of doctors blames the dizziness on anxiety and not the other way around. I went through all that with my doctor. I even saw a psychiatrist to prove her wrong. But I know that if I get a new symptom (feel more dizzy) I feel the panic and anxiety. I'm always afraid of it getting worse. Is your fear going shopping due to your dizziness or your anxiety and panic attacks. If it is because of your anxiety do something about it right now. Read about it, talk to your doctor about it. I know what anxiety is, I had it in the past. I took control over it very fast by learning about it. It gets to a point that it is the fear of the fear itself. I hardly have any anxiety anymore, I will always be prone to it, but I learned how to control it.



[This message has been edited by MPaiement (edited 02-17-2003).]

Hi,
Thanks for that. I don't go out really because of the dizziness. My main thing is that if I get too dizzy, I'm afraid I'd pass out.The likelyhood of it actually happening is virtually nil, but try telling me that when I'm out!!! I force myself to do it though, or i'll end up staying in forever. My doctor diagnosed this about 2 years ago, but in reality, I've had it for about 3 and a half years. Nobody knew what it was until i changed doctors. Hopefully one day this will go and I won't even realise it's gone!!
It's just very annoying. I used to be so independent, now I'm not allowed to drive, unable to work and dependent on my boyfriend,who by the way, is a godsend!
Anyway, must dash.
Bye all.

Has your ENT said it is Ok/normal to last this long?

They weren't much help!!! All they said was yes, it's labyrinthitus, nothing more we can do. My doctor says it's ok though, i see her every month.

sorry Jenn...no success story here..;( Ive been dizzy for almost 3 yrs...I was dizzy free for 2 months..Oct/nov..& thought this is great!...Maybe the Celexa was all I needed?...WRONG!
Its back & worse,,Ive had hearing tests..c scans. 3 MRI's. Ive seen an ENT & a Neurologist,,he said I had an Inner ear problem,,,,duh! BUT,,,why cant they put a name to it??
Im so fed up...now im getting dizzy at the malls, supermarket,,when I walk its like Im on a suspended bridge,,& its being shaken..kinda wobbly on my feet,,,it never lasts long,,,I dont vomit,,,but am VERY nauseated. http://www.healthboards.com/ubb/frown.gif
I have a "fullness in my left ear, then it rings,,& fizzes. It happens at home alot, it is set off (i think),,by visual stimuli..& im thinking a change in positions.
Last week I had my third MRI,,,b/c the last 2 were "inconclusive"...huh???

I am on the cancelation waiting list to see my neurologist...I hope I can get some answers. In the meantime,,,Its somewhat comforting to know im not alone in this dizzy nitemare...
~~Hang in there

Sasha, You said you've had L for the past 31/2 years. Have your symptoms always stayed about the same or are they getting better or worse.

I know what you mean when you say that you were independent and that you now have to depend on your boyfriend. I had to quit my job. We have three children, and this situation is putting a lot of strain on us financially. I feel so guilty and inadequate. I feel like I'm in a straight jacket, I feel so powerless. I get soooo angry. I WANT MY OLD LIFE BACK!!!

Hey Mpaiment,

Hope I don't sound like I'm butting my nose in, but wondered if there is any history of migraine at all in your family? I know I have mentioned this before, and I only mention it now again because before finding this site I used to go to another dizzy site a lot. The people on it mostly tend to have been dizzy for a year or more. On there, there was a woman called Hannah. The reason why I ask is because she was dizzy 24/7 for around the same length of time as you. She also had no specific ear symptoms. Other people on the site also have it who are also dizzy 24/7. I push this point because with the right medication MAV can be alleviated. Hannah got totally better once she found the right meds. Basically, when you have unrelenting dizziness for a long time, with no hearing loss, or major ear symptoms, then it can be MAV. You don't always have to have a family history of migraine, but it's one indicator. Another indicator if you have been dizzy for a long time is the ENG and caloric test. Generally if it isn't MAV but l'tis or VN related it will probably (although not always) show up some damage to your vestibular nerves. I can't remember if you had a virus prior to getting dizzy, also another sign that it's more likely to be VN.

Sorry if I sound like I am strangely banging on about this. It's just I read your most recent mail, you've been unrelentingly dizzy so long, which must be so frustrating, so I thought if there was any info I have that might help you get your old un dizzy life back, I ought to put it out there. Also I remember you saying you are going to a dizzy clinic soon - sometimes it helps, as you know, to be armed with info and suggestions before you arrive. Big apologies if you know all about this already - I know like all of us you trawl the net looking for info - so you may be totally informed about this anyway.

Hi Hbep
What does MAV stand for?

Hi Jen

MAV is migraine assisted vertigo

MAD is migraine assisted dizziness.

Mpaiement,
Since I've had L.tus it has basically been the same. A few good days here and there. If I stay in the house (which isn't a good thing, I know!!), it's not so bad because everything is familiar I suppose. I know what you mean on the financial side of things too. If I was able to work, our problems would be sorted and then I get very angry with myself, but luckily as I said before, my boyfriend is brilliant about it. Unfortunately, the longer I have L.tus, the worse my anxiety gets. It's a catch 22 situation. We've (the professionals and myself) have come to the conclusion that when the L.tus goes away so will the anxiety hopefully!
Anyway bye all.

hbep, I don't mind you butting your nose. That's why I'm here. http://www.healthboards.com/ubb/smile.gif mmmmmm, never thought about MAD. You said the other person "Hannah" didn't have any other symptoms than dizziness 24/7?

There is no history of migraine in my family. I didn't get a virus or cold before starting to feel dizzy and all my tests were normal, including ENG. Wouldn't an MRI show signs of MAD?

Mpaiement

Hello again. Not sure about the MRI - as far as I remember I don't think it necessarily would show. I've dropped a quick line to the people I know with this on the other site, asked them what symptoms/factors other than the ones I've mentioned might indicate MAV. Hopefully they will post me an answer. Thought it would be useful not just for you but anyone else reading who may have as yet unexplained dizziness. I guess the other possiblity for you is what they call uncompensated vestibular neuritis/labyrinthitis. For some reason it takes some people's brains a long, long time to compensate for the trauma the original virus has caused. If this is the case then the correct vestibular rehab exercises for you will undoubtedly help, especially if you are showing some signs of recovery and your ENG showed no damage.

Whilst trawling around I read a really heartening thing. It was posted by a balance/dizzy specialist who runs a vestibular rehab clinic. He said in most cases it was possible to find a solution for people who have the dizzies. He said people remain dizzy for a number of reasons - not getting the right help/seeing the right specialists. He has spoken before about how important it is to see super specialists in this field when someone has a long term dizzy problem as opposed to just general ENT docs, which is why it's great you are finally getting to go this clinic in April. The other reasons he quoted are agrophobia/depression/anxiety - I think you're pretty clear those aren't the cause of your problem. He also mentioned people who have other serious health issues alongside their dizziness, which makes it harder to treat the dizzies -that doesn't sound like you either.

I guess what I'm saying is there's a really good chance that with the right help you will beat this thing. I know how important it's been for me going through this to be able to believe that's a possibility.

Hbep, thank you VERY much for your words of encouragment. They mean a lot.

Let's hope that the clinic will finally be able to give me some answers and help me.

Hi Hbep
Your words encourged me too! I went to see a Vestibular therapist last month and have been doing my exercises religiously 3 times a day. She is the only therapist in the whole of Australia (I had to fly from Melbourne to Adelaide to see her) so I hope she is on the right track. Her opinion of my dizziness is that it is uncompensated vestibular neuritis. I have absolutely no other symptoms other than dizziness and never have had. I am in month 6 now and I suppose if I look back over the past 6 months I am definitely better. Of course none of us will be happy with 'better', we want to be cured! She said it would take months for me to get better but to persevere. I have to keep encouraging myself and trying to stay positive. Hang in there Mpaiement. I think you're on the right track now with the therapist.

By the way, I started to investigate MAV on some websites as I am a migraine and headache sufferer. This stressed me out somewhat and I am going to stick with the vestibular neuritis diagnosis. My gut feel is that it's not migraine related, as my symptoms and history seem to point away from it e.g. I've never felt car sick or seasick etc etc... I've had headaches all my life and they have never intefered with my life even when they are bad. The magic of headaches is that you take some painkillers and they go away! Oh for those days of living with headaches only... http://www.healthboards.com/ubb/smile.gif
Cheers
Jen

Dear Mpaiement and Jen,

Here's one of the answers I recieved from the other dizzy board - general info from Tom Boisner who runs a balance centre and has had yrs of experience with dizziness.

"The bottom line is that many folks never find out WHY they 'caught' dizziness. At some point they have to move on to the 'what can I do about it' stage. For 24/7 symptoms VRT is often the best approach. If VRT doesn't help, look for and treat interfering factors (headache, anxiety, other medical conditions) then try VRT again. If still no help, consider a good trial (at least 3 months) of migraine preventative medications."

Thomas E. Boismier, MPH
Director of the Balance Care Center.

It seems Jen that your therapist is on the right track as you're improving with the VRT exercises. As you've said she's very experienced and I'm sure she knows what she's doing. I'm pretty sure it's not unusual to have uncompensated VN and for there to be no connection to migraine attacks. I think MAV would only become relevant for you if the VRT didn't clear things up.

MPaiement - it seems that you should have been given the right VRT exercises to do. It's so scandalous how uninformed ENT departments are - how many people's suffering do they prolong by not handing out the right treatment a.s.a.p. Fantastic that you are off to this clinic in April, I'm sure this will set you on the road to recovery.

For anyone who is considering a MAV diagnosis I picked up a bit more info, it seems you can have headaches - migraine or otherwise, but not necessarily. If you do get them they don't have to precede a dizzy attack and can happen after or independently of the dizzy attack. I spoke to one woman who was entirely cured of over a year of 24/7 dizzies with migraine meds. She had, had migraine in her teens, but not since. An ENG can both show damage or not, depending on if the vest migraine has damaged your nerves. The other symptoms you may have, but again not necessarily, that might point to a MAV diagnosis are the usual migraine symptoms that go along with the headaches - visual aura - light/noise sensitivity, numbness, tingling, etc... I guess if anyone thinks this may be relevant to their dizzies they should do a search on migraine symptoms.

I'll shut up about this now - the only reason I thought I'd mention it is because I've read quite a bit about it and ENT docs can be so uninformed and rubbish. The more info people have about dizzy disorders the better chance they have of making doctors look in to every avenue and therefore finding a cure. Dizziness is such a horrible thing, now that I've experienced it I hate the thought of anyone suffering with it due to lack of information.

Agreed ... I hate to think other people are going through this. Have just been driven to the other side of town to see my work colleague who also has labyrinthitis - we compared notes! - and must admit that it is really hard talking to someone for an hour and focussing on them all that time whilst having a conversation. Feel like I'm not quite there - floaty/surreal. I know that this is definitely the physical symptoms - but it does make me really anxious, which in turn makes me feel worse. Keep telling myself to remain calm - nothing terrible is going to happen, etc... but would appreciate advice on controlling the anxiety. Anybody got any 'mental' exercises that help? Feel so up and down lately - some points in the day are much better (get really positive) then in a short space of time symptoms become worse (get mad!!!). I HATE IT!!!!! I am not an aggressive person, but sometimes feel like I could demolish the room! HELP!!!

Ruth

hello,
any input would be much appreciated. i woke up 10 days ago off balance and spinning(vertigo)
to a point where i was nauseous. doc told me i had labrynthitis and would be at least 10 days off work.
i drive trains and am in a very safety sensitive position so i need to be 100%.anyways here it is 10 days later and my balance is slightly off as well my visual perception.although much better than first few days.
could this go on for long time?
i was in a serious crossing accident almost 2 years
and about 4 days after accident i experienced same sort of thing(vertigo lasted about 2-3 weeks)..they did many tests and concluded some sort of mild concussion from the violent impact.could this be related?
one more thing..i have read vl can be an autoimmune disorder..i have had chronic hives for 10 months(also possibly autoimmune)
i have seen so many docs specialists..so many guesses!
frustrated and dont know what to do. thanks!

Hi railrider,

Sorry to hear that you are not feeling well, but here we undersand how you feel.

I'm not a doctor but by all the reading and research I've been doing since I got sick (17 months) I may be able to help you a little. Most of us here are finding out that doctors don't know too much when in comes to dizziness problems, even ENT (ear,nose and throat)specialists. Many things can cause dizziness/vertigo. It's possible by your symptoms that you have Labyrinthitis. L can last 10 days up to a year and in rarer cases maybe more than a year (that what I was told I had but since it's been so long I'm not sure). Usually people with L get better very gradually. There are vestibular exercices that you can do to help speed up recovery - search for Cawthorn-Cooksey Exercises. It is possible to have L more than once. Another possibility is that your accident could have caused you to dislodge little crystals in your ear. When these little crystals go where they are not suppose to be, it causes vertigo. This condition is called Benigh Paroxysmal Positional Vertigo (BPPV) and it is treatable. There is a document on the net that is called "Dizziness Explained". I would like to give you the address but I think we are not allowed. Try to find it. It should help answer most of your questions.

Good luck.

hi mpaiement,

thanks so much for your help..take care!

Hmm..has anyone else heard of L'itis being an autoimmune thing? Bit concerned by that!

Hi everyone

Just had the most depressing weekend. I've been so dizzy and as a result really depressed. I feel as though I'm mourning or grieving my old self. Sorry to complain...having a really bad few days after the absolute high of thinking I was better less than 2 weeks ago. Normally I'm a very active person - a dancer - and have not done any exercise in over 5 months now... this does not add to the morale. Sigh.

Jen

Hi Jen and all,

Hmmm, I know what you mean about the five steps forwards three steps back. I had the most active weekend I've had in months - out and about shopping with a friend, cinema etc... Last night I had just finished writing a mail to MSG saying how the worst of the dizzies seemed to have cleared up, went to bed and was hit by dizziness. Have woken up this morning foggy eyed (new symptom), dreadful foggy head, bad ears and dizzy.

I, like you, am getting pretty depressed. Even though I was happy that the worst of the dizzies seemed to be gone, I have, going in to month seven, started to find the foggy head very difficult to deal with psychologically. I write for a living, having a foggy head and not being able to think as clearly as I used to makes it very hard. (Although at least getting this has made me realise how sloppy my spelling's become without a spell check facility!) I am currently avoiding starting another project, I guess I keep hoping this will go soon. I'm also tired of not being able to engage in conversations with my friends like I used to. I get so far and then my brain fogs over. I can't stand feeling or seeming stupid. I do think the depression is a kind of grief for the things you've lost, and the fear that you won't get them back.

I see the consultant in 3 weeks, I'm not holding out great hope for a definite diagnosis, but you never know.

Jen, Hbep, sorry to hear that you are not feeling as good lately. We all know how that feels #@*!*@#!! When this happens I try to encourage myself by knowing that I will go back to periods where I feel better. Not great, but better.

Add me to the Positional vertigo (aka:Meniere's disease ) list of suffere's.

I first began getting vertigo last summer.
I got up in the middle of the night to go potty , came back to bed , laid down on my left side and as soon as my head it the pillow The room began to spin wildly as if I had passed out and we coming out of being unconcsious. The whole day and for afew after , I was spinning no matter what I did. The instant nauses and vomiting is horrible.
Ya bend over to throw up and the bath room spins.

2 weeks ago I got out of bed , fell into the dresser , backwards on to the bed , had to crawl to the bathroom to stand up , fell off the toilet Because My vertigo hit me on the right ear side. Then it was instant nausea and vomiting.

Went to the doctor , he looked in my ears and said the right one has fluid in back of the ear drum.
He told me taking a diuretic(sp?) water pill can reduce water amounts (including in the inner ear )
and that can help with Vertigo. But you have to uriniate all day then , into the night.
Which complicates my lack of sleep problem.

To my knowledge there is Nothing that can be done for us Vertigo suffere's. We have to put up with it till it gets so bad they have to try to operate to fix the problem.
But that surgery carries risks too.

Vertigo is HORRIBLE* The spinning sensation is whicked. For those of us with this condition , I hope we have a safe day and and easy spot to land if we fall.


Glenda

Hi Jen ... sorry you're not feeling good. For me, too, 2 weeks ago things really seemed to be improving and I was starting to think about going back to work. Then last week had a really terrible time with dizziness, feeling disorientated. It gets you so down. You feel like you are in a hole and just as you think you might have climbed to the top, someone goes and chucks a pile of *~"! on top of you and you slip right back down. I think each setback becomes harder mentally. You just feel like you've used up all the positive thinking you have and there is none left. Friday I was so down I must have cried about six times throughout the day. I agree, I think it is the frustration and everything of not being your old self/feeling like you are missing out on stuff.
My mum said to me yesterday that she thinks I have been brilliant coping with this, and that really meant a lot to me as I thought I was not coping very well at all!
Hope you feel better soon - am having a better day today and am trying to enjoy it without thinking about what tomorrow might bring!

Ruth
xxx

Hi hbep... sorry you're feeling bad too. Yes, it's 5 steps forward 3 steps back then 1 step forward 2 steps back..... Agree about having conversations with friends .. 2 friends came to visit me and stayed 2 hours - after about an hour I just wanted them to go as I really couldn't concentrate any more, which is awful, as I love talking(!) and normally could happily talk for hours!
Then you start thinking about all the stuff you've missed doing over the months and that gets you down as you can't imagine getting back to that level of activity again. But I'm sure we will - it will just be very gradual.

Thought you all might like a joke to cheer you up:

A guy walks into a doctor's office. He has a sausage coming out of his ear, a waffle coming out of his nose, and bacon coming out of his other ear. He says worriedly, "Doc, what's wrong with me?!?" The doctor replies, "You're not eating properly."

Sorry, terrible joke, but for some reason it really made me laugh!

Ruth
xxx

Oh go on, just one more joke!

A BRIEF HISTORY OF MEDICINE

I have an earache.

2000 BC - Here, eat this root.
1000 AD - That root is heathen, say this prayer.
1850 AD - That prayer is superstition, drink this potion.
1940 AD - That potion is snake oil, swallow this pill.
1985 AD - That pill is ineffective, take this antibiotic.
2003 AD - That antibiotic is artificial. Here, eat this root.

Sound familiar?!!!

Hey Ruth,

Loved the jokes - especially the 'you're not eating properly,' laughed out loud. Thanks for that, it did cheer me up.

Also Ruth,

A thought that made me laugh. If someone said on here that morris dancing was proven to rapidly cure ear disorders, how many of us do you think would take it up? I know I, for one, would be out on a village green somewhere sharpish, shaking my stick with bells on, kicking my heels in the air and shouting hey.

Absolutely! Hee hee! I would even morris dance in the town centre on my own if it would help!

Love your sense of humour. Count me in for the dance!!

And me!

Ruth
Good jokes! I needed a smile!
Have had yet another terrible day. My eyelids are so heavy I can hardly keep them open and not to mention the aching! I think my eyes take real strain trying to keep me on the straight and narrow if you know what I mean.
Do you find that the type of dizziness has changed with time? Each time I go through a bad patch (bearing in mind that the dizziness is 24/7, it's just the severity that differs) I seem to experience a different type of dizziness. Last time I had this rather horrible pulling to the left, this time I feel absolutely fine when driving the car but as soon as I stop at the traffic lights things start moving around me. In the past I've felt fine when sitting still and bad when moving; ok when moving and bad when sitting still. There just doesn't seem to be any consistency! I've been monitoring myself for this foggy-head feeling that everyone describes but I honestly don't think I feel it; just dizziness, disorientation and heavy eyelids. Of course I feel completely out of it most of the day when the dizziness is bad, but I blame it on the dizziness, not a foggy head. What are your experiences with this?
Cheers
Jen

Hi Jen
Absolutely. It's nearly always there, but the dizziness fluctuates so much and changes. At the very beginning I felt like I was being bounced on a bungee rope (really horrible, makes you feel sick) and couldn't move around much at all. At this point I felt like I was walking on marshmallows - I felt very unsure of where the ground was. That is the one thing I don't get at all any more - the ground is very stable now, thankfully. I then got the 'roundabout' sensation which is truly horrible; a lot of the time I feel like I am being pulled backwards and slightly to the right - sometimes it is only slight, other times it is a strong pulling sensation.
Like you say, in the early weeks, I definitely felt better for keeping dead still. And still getting days like that now where moving my head at all is really disorienting. But when it is sort of medium level keeping still can actually drive me mad - as it is constantly there. Agreed, there is no consistency and I feel this is what makes it so hard to explain to people.
Am not feeling too happy today - just feel like everything's on top of me - feel like everybody expects me to be feeling better by now - like they find it hard to believe I'm still off work, etc...
Just feeling sorry for myself, I guess.

Ruth
xxx

Don't worry Ruth...also feel like that. I hate having to tell people I am still feeling ill! It's been 4 mths! I get so downbeat where as normally I am always pretty happy. Have been so much more emotional... I feel I am losing out on so much and can't imagine what it feels like to feel not dizzy again!

xxx

Thanks Emsybobs ... 'emotional' should be my middle name at the moment! Am trying to be positive - it will go eventually.
Don't think it helped last night when I went to get into the passenger seat of the car and cracked my head - completely misjudged the doorframe! Ouch! Now today feel like I've done ten rounds with Mike Tyson! Was hoping that it might have knocked some sense into my brain!

Ow! Hope you are OK Ruth. We should all get together once we are all back to normal health! One huge massive paaaarrrrttttyyy!

xxx

Hey guys,
sorry to hear you are all feeling so dizzy. On another dizzy board, people are having some luck with acyclovair, an anti-herpes med. They started the beginning of Feb. with mixed results. I sort of think its all the same disease, it just affects people differently, I am lucky to not have the dizzies like that. I saw an ENT today, asked how to distinguish meniere's, He said it was the violent vertigo and spinning which made it so. Otherwise he did ask me specifically about head trauma, which may relate to railrider41's difficulties. He then told me my BRAINFOG was pshychosomatic. Wish I had a rash to show THE DOCTORS.

I can join you in feeling sorry for myself. I've been mega down this week and landed up on the study floor at midnight last night in front of my husband crying my eyes out. Meant to tell you that I started going to accupuncture on Tuesday. I was told that he's treated this many times before and I should see results in 3 to 4 weeks. I felt nothing when he told me that. I don't think I'll believe anything anyone tells me about this dizziness. If it works then great; I'm prepared to spend the money. I'd stand on my head and sing if I had to....

Hi all,
Sorry to hear people are having bad days. I've had 1 good day this week (which I LOVED!!), today, not so good. Still trying homeopathy to see if it does anything. First couple of weeks were ok. The first day or so I had such an energy rush!!! I don't know if it was just coincidence though,I'm quite sceptical. The good day was brilliant, went to the shops!! Not on my own mind you, that's a LONG way down the line yet!! Retail therapy is a wonderful thing!! My boyfriend doesn't agree with me for some reason!!
Anyway, I hope you all feel a little less dizzy soon, and to change the subject completely:
Q: Who discovered you get milk from a cow, and what was he doing at the time???

This past year I've cried enough to last me a lifetime. One time I even started crying (loudly) while trying to tell my "new boss" that I couldn't come back to work (after having gone back to work for a few days). I felt sooooo ashamed.

I totally understand. I find myself crying at little things. I am SO FED UP of being dizzy. I am so tired too, this L'itis has made me energyless.

xxx

Hi Jen, Emsybobs, Ruth,

Really sorry to hear you're all feeling so down. Add my name to the cried over this list.

MSG,

Sorry to hear your ENT thinks the brainfog is psychosomatic. Seems to me he had a problem with his ears - he wasn't listening properly.

I totally agree! Most Docs dont listen properly when the dreaded ears/dizziness are concerned.

Has anyone else found their immune system has been greatly reduced by this damn L'itis?

For the past 3 months of been taking some natural products to combat viruses. I don't know if it's working but I haven't caught anything so far. Hope opening by big mouth won't make me sick. Evertime I do something happens to prove me otherwise http://www.healthboards.com/ubb/smile.gif

What have you been taking?

Got to go to a wedding tomorrow, v. close friends. Have been dreading it for weeks - am going to have to do a whole lunch chatting to people who don't know me. What can I say? Sorry, I used to be able to engage in interesting conversation but now I'm a moron. I am so sick of not looking forward to anything social because I wander around in a haze, distressed by the brainfog, just wanting to escape back home.

Made the BIG mistake of doing a little too much research on the internet, got scared by how long people seem to get stuck with brainfog. Sorry, don't mean to make anyone else morbid with this load of old self pitying babble but sometimes you just have to let off steam with people who understand.

I go and see the ENT in 2 weeks, from other people's experiences I am fully anticipating a shrug of the shoulder, dunno reaction. Or that old favourite, an anxiety diagnosis - with this much ear pain/problems, if he tries that I'll tell him where he can shove it.

Sorry, big apologies for this unbelievably morbid rant-just can't believe that what would, in the past, have been a fun event tomorrow is now going to be an ordeal.

Self pityingly,

Hbep - She of the soupey brain and rubbish, badly behaved, good for nothing ears.

TOTALLY know what you mean about not looking forward to social events anymore. It's horrible. I want to be sociable and miss that all so much yet do I have the energy? No. Just standing in a room is an ordeal in itself.

Good Luck tomorrow.

Thanks Emsybobs, it's amazing how helpful it is to know other people understand what I'm going through.

Guess I just got despondent when I realised that I had been having to focus on getting through the event, as opposed to looking forward to it. This constant struggle to do ordinary things gets exhausting.

Hbep, hope it was at least a little fun today. Ever hear the one about the heart, lungs, brain, etc, having an argument about who was the most important? I'll cut right to the punchline, I now know of course know its the Ears. Anyway, heres what else the ENT said to me: Wanted me to have a hearing test, to check for hearing loss of course. I get the impression Menieres is hearing loss, and the violent vertigo. I guess L is everything else. I personally believe its the same thing, just a difference in severity. Said the tinnitus is a mystery, may have to do with the small hairs or something in the ears. Ok mine has really subsided, so it Does go away. He didn't seem to wanna hear it wasn't the tinnitus that was bothering me, and went on to blather about putting a radio between the stations to get to sleep at night. I waited two hours to see this guy, and got I think almost a whole 5 minutes of his time. The upshot was that since he couldn't see anything in my ears, I must be making it up. I think we're totally on our own on this thing, which is why I am so curious about everyones symtoms, to infer whether or not its the same illness, and what medicines people have taken that have helped. Although honestly, if you don't take any medicine, while it may just go away on its own, it may not either.(notwithstanding advice to allow the brain to re-adjust)

I never go to social gatherings anymore. I remember on by birthday last year, my parents wanted me to go up to the pub which they run( which i'm the licensee but never go in!). TOTAL nightmare. I thought about it for the few days running up to it and got myself in such a state thinking about being in there with this "thing", I point blank refused to go. It is good to know it's not just me, I'm not going mad!! Even though it feels it sometimes. Does anybody else have problems remembering things more now? My concentration has gone right down.
Better be off
Bye

Hi MSG,

Sorry about your ENT visit,the getting five minutes after weeks of waiting thing seems to be a common problem. I have read and was told by the consultant I saw once, that people with Menieres have v. violent spinning vertigo normally accompanied by drop attacks. They literally collide with the floor. Although it is possible for the attacks to lessen in severity, I think if you had menieres you would have experienced these symptoms at some point. You would also have hearing loss. There are also different physical reasons for experiencing Menieres to L/vestibular neuritis (interchangeable terms) I can't remember exactly what is happening in the body with menieres but it's different to what has happened (a virus) to people with L or VN.

I don't believe I have a virus caused ear disorder on account of the lack of L type dizzy symptoms - being pulled to one side, vertigo etc... My dizziness, which, although severe, always presented as debilitating light headedness. On account of the blocked ears/pressure/tinnitus/ear pain I think I have eustachian tube dysfunction. This is caused by inflammation/fluid retention in the eustachian tubes. From what I have read of some other people with this it also causes the v. unpleasant cognitive symptoms.

Sorry if you know all this already but you said you were keen to differentiate btwn different symptoms, this is how I've come to the conclusions about what I think I have.

Yep Menieres is to do with fluid behind the ear drum. You would know if you had it. It occurs in SPELLS.

I have also had the lightheadiness you describe, not true vertigo. But hbep, l'itis CAN be like this so my ENT says, it just means we have it less severely.

BUT I havent had ear pain or much fullness (a bit of blockage at the onset) but am not congested in any way so that's why I know it's not ETD. But, just to say, don't let the non vertigo symptoms make you rule out L'itis.

Hope this helps xxx

Hi there

Mine was explained as vestibular neuritis as a result of a bout of labyrinthitis. Basically my symptoms have consisted of vertigo initially with 24/7 dizziness since then, with absoltuely no other symptoms. Came on gradually, on and off, for a month before becoming constant.

Just got through the worst 8 days, with a drop (but by no means gone) in dizziness today, thank goodness. Such a relief. Starting to think I'm going to be like this forever.....

Jen

Hi Emsybobs,

Thanks for your reply. I did ponder the whole l'tis, ETD thing for a while. I forgot to say my gut feel about an ETD diagnosis for me is also because I don't get any of that dizziness with head movements stuff that you and other L'tis sufferers get. Also, I had a yr and a half of chronic nasal inflammation without congestion a few years ago. They didn't know why, but aside from the brainfog and the dizzies with the ear problems, my ears feel very much the same as my nose did then. This makes me think the inflammation problem has simply shifted to my ears/ eustachian tubes. It was treated with a steroid nose spray, and an anti histamine nose spray. I have started using the steroid spray again in the hope that it makes it to my eustachian tubes, I think it may have helped a little.

One other thing, on top of the regular tinnitus, I also got pulsatile tinnitus for about 2 months - wooshing sound in time with my pulse in right ear. This can also point to an ETD diagnosis.

Sorry for the long winded explanation, just thought it might be helpful to anyone else who is looking for clues as to a diagnosis.

Hi,

I too get the whooshing sound in my right ear (i also have tinnitus) it normally lasts for 1 to 2 weeks but i always wondered why it appeared then dissapeared for no apparent reason.

Ive been using the steriod nasal spray for 2 weeks now, the bunged up feeling in my nose (especially the right nostril) has not improved yet. However just before i started using the spray i have entered quite a good spell, not as many headaches, off balance not as bad and the foggy head is much less. So i cant say the spray is helping that lol!

Ive given up trying to give myself a diagnosis at the moment theres too many things going on in my head! Im just grateful for having a good spell presently. How long it lasts god knows!!

Yeh the whooshing sound doesnt sound like L'itis. Generally with L'itis there is a bit of a blocked ear sensation sometimes but no pain and no congestion really and yeh, the dizziness with head movements is a key symptom.

Have resumed doing my exercises again Jen after not doing so for a long while. Only on day 2 but alreay feel a bit better...found a few articles ont he web about how the compensation process has to be speeded up by vestibular exercises so realised they were essential to do. Am religiously sticking to them!

My condition started with a feeling of being slightly pulled to one side. After about a week of that the dizziness 24/7 started (no vertigo but sometimes just borderline). I'm in my 17 months right now. I have periods when I'm better than others but the dizziness never goes away. When I'm at my worse, I feel more unbalanced and feel numbness in my head (brain) when I move my head or move around and a fuzzier vision. This sensation makes me feel dizzier but things aren't necessarily moving more. I sometimes get pressure/blocking in my ears or very light tinnitus, but these are far and few between, and can last just a few seconds.

All the tests I had done came back negative (MRI, CTscan, ENG, blood tests (even was tested for Lupus). The last doctor that I saw (neurologist) told me that I probably have a virus, which at this time I am not too certain is the right diagosis. In April I'm going to a clinic that specializes in vestibular disorders, we will see what they have to say. I hope they can come up with an answer,but the ENT that is sending me there doubts it.

Emysbob,

The natural products I'm using are:

By the company Bioplex

V.R.U.S. forumla: mix of echinacea root, hibiscus flower and goldenseal herb, mixed with a solution of purified water, vegetable glycerin, apple cider vinegar and grapefruit seed extract. (Liquid - Tastes good)

Bio-Phyllus: Good bacterial cultures (capsules)

Hey- Thanks all. That is all very interesting to me. Some have the balance/dizzy, some have tinnitus. I remeber my docs being interested whether it was pulsatile Tiinitus or steady. They also wanted to know if the dizziness was related to position. I wonder why they wanted to know. Jen & Mpaeiment- that sounds absolutely awful. I did the grapefruit seed extract- got a liquid which was quite powerful- and the acidouphoulus. I was on a C. albicans thing for a while- that can really cause some trouble. Grapefruit seed helps kill that. There is a new peptide discovered which kills C albicans 99.4 %. When it is available, I'm sure we'll hear about it.
Hbep- the inflamation thing is interesting-you have a hx with it- did you think of tryng arthritis meds? Just a thought (celebrex is like a super aspirin.) The ENT also cleaned my ears- that was interesting-(turns out he's a surgeon-it showed) he and told me to avoid caffiene and chocolate to help the ringing. Also said aspirin causes ringing. I think we knew that. I quit coffee for months, and now drinks gallons each AM, just don't think thats it.

My dizziness started with a severe bout in my early 20s, then another in 1990/91, and then the latest, current bout(No tinnitus, no hearing loss) - I seem to get a regular bout every ten years which eventually completely disappears. Luckily for me my vertigo is very mild - but is enough to be really annoying. Mainly the room spins when I lie down or get up from lying down - once I'm upright it seems to be OK. When I lie down, even if I close my eyes the spinning continues then eventually stops.

I've also found that a herb, Ginko Biloba, helps quite a bit (often apparently helps tinnitus too). My guess is viral labyrinthitis but should probably have it checked out. Anyone know any vestibular specialists in Adelaide (Oz?)?

Thanks

Hello, I had read all the messages on this thread and I must admit I'm quite scared, I expected this to be over in 3 days never imagined it could be a lifelong thing. Now I am not sure exactly what my problem is I woke up one day with the room spinning and then vomited all day (diarrhea too) but then I just got stuck with the vertigo since then. I have gotten a bit better and I was given some pills for Meniere sindrome which seem to work well but I centaintly didn't expect to have to take them for long.
I haven't had a physical checkup since I thought this was just a virus like a flu and would simply go away.

How long should I wait before going to the doctor and what kind of doctor am I looking for? I dont have any aches anywhere, apart from the dizziness I'm OK, hearing seems fine too. I don't think I have Tinnitus, certainly not a load ringing but I'm not sure as I do hear a high tone if I press my hands against ears.

I'm planning on a 2 week trip in one month which means long plane and train rides and crowds I guess, any tips?

CathB
THE Vestibular Therapist in Australia is in Adelaide!! I flew from Melbourne to Adelaide to see her. Look up Doctor Margie Sharpe of the Dizziness and Balance Disorder Centre (or something like that) in the White Pages. Let me know if you can't find her number. She is definitely worth seeing.
Jen

Jen and all,

Thanks very mmuch for that - will look up Dr Sharpe. Good to hear there was someone who could help you - this mild dizziness is really frustrating.

alonsoac - for what its worth, I've lived with this dizziness on and off for some years and while frustrating I never allow it to interfere with anything I want to do - I still socialise, walk, jog (sort of),play tennis, swim etc. I've got to the stage where I live with it as sort of a background to my life and a characteristic of me - bit like my hair colour. So I'm not diminishing the symptoms you are experiencing, rather reassuring you that I have learnt to live successfully with mine - I control it as much as possible rather than have it control me. I try and get in and out of cars, up and down off chairs or move my head just slightly more slowly and 'gracefully'! (Well thats my story anyway and I'm sticking to it!)

Mind you, having said that, I am going to ensure I get a correctt diagnosis if I can - so I'll be off to the Vestibular Specialist, thanks to Jen, now she has let me know there is one here in Australia. Is there someone who specialises in vestibular disorders in Costa Rica - that might be a good place to start.

So yes this stuff can hang around a long time, on and off, (hopefully more off than on) - but ifyour lucky enough for it to be fairly mild lke mine than you can live with it successfully. I'm SOOOO grateful I don't have this dizziness in a severe form and really feel for other people who do.

All the best.

Hi Cath, sorry if I've missed a post from you, but what have they diagnosed you with? Has your dizziness got better with time? Have you had periods with no dizziness at all? xxx

Hi emsybobs,

Sorry I haven't been back in touch for a while.

The only diagnosis I have at the moment is a vague one from a GP of 'mild labyrinthitis' from many years ago -I still need to get to a vestibular therapist.

The trouble is that at the moment my dizziness has gone again, so it will be a bit difficult to demonstrate it to a vestibular therapist at this stage. About 2 or 3 months ago it suddenly disappeared - during or after a trip to the UK and Europe. So I like to think the long plane flight (or was it the Italian red wine?) had something to do with it - and so have a great excuse for more trips OS - but somehow I don't think thats it - suspect its a latent viral infection of some sort that flares up even now and then

So yes my dizziness is very mild and has got milder over time - and yes I have periods, sometimes years - when I am free from it - like I am now. So fingers crossed it doesn't come back at all this time. (But I will cope with it if it does).

Its a real relief to have these dizzy-free times as they provide some relief from it - and I really feel for those of you who are constantly dizzy.

So there is hope that you can go 'into remission' like I have - and I hope it happens for you too. All the best.

My first bout with the virus infection in my inner ear was 9 years ago. It took about a year before I didn't notice any "weird" feelings when I would go into a store like Walmart. Went nine years before it hit again. I am beginning my fourth month with the second bout but am beginning to feel more normal each day! There is hope!!!!

Hi dizzyinmissouri,

It was good to read your post as I was wondering if I was a bit odd with this really mild labyrinthitis which comes and goes with often many years between attacks - I had my first severe attack in my early 20s when I was bedridden for three or four days and not able to move. I then had another very mild bout in the early 90's which lasted for a few months then disappeared. Then the bout this year which completely disappeared again a couple of months ago - hence my guestimate that this is viral. I just hope it eventually disappears for good. So yes there is hope -always hope that it will disappear for good - and good to know I'm not alone in this odd pattern of the mild dizzies. All the best to you and I hope your dizzies continue to get less as mine have - and maybe even depart for both of us for good.

And maybe if all else fails try a long plane trip - preferably to Italy with plenty of great Italian red wine! I like to think thats what did the trick for me! All the best.

Hi All

Well is both scary and refreshing to read all your experiences.

I have been suffering with dizzyness since June 2002 so whats that about 15 months. I have it 24/7 but it isn't spinning vertigo most of the time. The most frustating symptom I have found is the distorted vision. Everything looks wrong but it is so hard to discribe. I also have a balance problem - I feel as though I go up and down all the time. I have constant fullness/ noises in the right ear.

I have seen almost every doctor possible. I have seen GP's, ENT's (total of 3), Neurologists, Opthamologists, Vestibular Therapist. Had all the tests (MRI, ENG etc) I have had a diagnosis - in fact I've had many different ones depending on who you talk to! They include Labrynthitis, Vestibular Neuronitis, Menieres Disease, Otis Media AND THE LIST CONTINUES!!!!!!!!!

Basically all the doctors have been able to tell me that I probably have a balance disorder. Surprise surprise!! Have seen Margie Sharpe (Aussie girls) and I wasn't very impressed with her. I have become very anti-doctors - have been told by one doctor that i just over-exagerate because i'm a girl!

On the upside after suffering anxiety and depression as a result, I decided that I love life and try to get pleasure where I can find it. I used to always be in a hurry, now I don't work and don't have a huge social life but find happiness in other places. Now I have a pretty good mental outlook and although wish I was well everyday, still find happiness in my life.

IH Guys... some days I read the posts and think wow this is great I'm gonna get better and then I read of those of you who have had it for years and I begin to panic... (my heart goes out to all of you!) I know what's it like, I'm a really independant person, I've had to move back home just so I can get driven around as I haven't driven since June. I've never gone anywhere on my own, always with someone so I generally do ok, supermarkets and shops were a big no no at first, which is bad cos I love shopping! Getting better slowly but I tend to spend hours htinkin gI'm gonna be fine and drag myself around, suffer big time later. My therapist told me do one hour and one hour only! I guess I'm learning fast! I'm managing to work part time, really really hard as my job is all computer orientated, can't handle meetings visual stimuli overload!!!! thats really kind of tricky. I also need to fly overseas for my work and can't do that right now. It's all so frustrating... I@m due to start a job in the states in January, frustrates my boss cos I can't plan anything and can say if I'll be 100% well! I really hate this thing too! I'm only young and feel like I am 90!