Hi Scott

Just to say glad you completed your thesis. Well done! Must have been really tough for you.

Am I right in thinking that you have been dx'd with VN? I have posted before saying that I have been told I have VN too and though I know the outcome is the same and the treatment is the same for VN and Labs I do not think that I have VN. I have never had spinning vertigo with sickness or deafness which I believe are the symptoms of VN. Could you tell me what your symptoms were?

Also, what does the future hold for us sufferers of Labs/VN? Say I reach 100% recovery at some time, do you still decompensate every time you catch cold or something? I was told at the ENT that I was always going to be the same and my life was never going to be the same and yet I have heard elsewhere that it takes appx 2 years for your brain to compensate completely and then you are OK. Who's right? Anyone know?

I am sick of my life being dominated by this illness. Though I have gone back to work this week after 6 weeks decompensation I am still off balance and wonder when it is all going to end.

Take care everyone.

Mac2

Hi Mac2,

Thanks for the congrats!

>>>Am I right in thinking that you have been dx'd with VN?

The doc told me it was labyrinthitis but I cannot see the difference between the two really (labs vs VN). I had no hearing loss.

>>I have never had spinning vertigo with sickness or deafness which I believe are the symptoms of VN. Could you tell me what your symptoms were?

Neither did I. No really hardcore spinning but at its worse, I felt like I had just got off a merry-go-round. So things seemed to be moving around me in a gentle circular sort of way but again not spinning. Sometimes the dizziness felt external (outside my head) and other times it felt like it was right inside my head. It also triggered very bad anxiety - and still can to this day. I still wake in the morning with a shocked feeling, followed by heart palps for about 10 minutes. Then nothing.

>>>what does the future hold for us sufferers of Labs/VN? Say I reach 100% recovery at some time, do you still decompensate every time you catch cold or something?

From what I gather and have experienced, the 100% we'll achieve (depending on the extent of the injury) may never feel like the 100% you used to be. The best analogy comes from Dr Rauch where he compares the new 100% to the level of fluency you have in a second language. The longer you speak that second language the more "normal" and comfortable you feel with it - the same applies to balance. As far as decomp goes, that should be less and less as time goes on to the point where even a cold won't bother you. I am definitely not there yet. Viral illnesses still give me a jolt.

>>>I was told at the ENT that I was always going to be the same and my life was never going to be the same.

ENTs really have a way with words don't they? If they're not trying to dig out your sinuses with some crazed operation, they tell you stuff like that. I think it's like I said above. Think of this like you are in school learning to speak French fluently. Right now your vocabulary is small but growing and your brain is getting better and better at understanding the new language. Probably a good idea to watch Rauch's film clip again on "Vestibular Compensation". He explains this all really well. It's the second one down in the archive.

>>>I am sick of my life being dominated by this illness. Though I have gone back to work this week after 6 weeks decompensation I am still off balance and wonder when it is all going to end.

Don't I know it. I'm just emerging from a 10 week decomp event....and still not back to 97%. I hate this thing too but what else can we do but try and stay active in all aspects of life and keep the chronic compensation phase going until we hit a stable point.

Are you on any meds? Doing any VRT?

Best....Scott :cool:

Scott when you say 'new' 100% does this mean I will never feel completely normal?

Cheers

Thanks Scott, much appreciated input from you as always.

I was on meds in the early days for 2 weeks i.e. Stemetil and for a week or so when I got it really bad last April . Have taken the odd pill now and again when I feel I have needed it but this time (6 weeks decomp) I have not taken anything. I am so proud of myself! I have just soldiered on trying to get better naturally! I have never fancied getting involved with SSRIs or anti depressants though I have been offered them a few times as I too suffered terrible anxiety. I must say that this decompensation period has not resulted in a return of the anxiety so that's good! I would hate to get involved with that again, it is so awful, and I really feel for you.

I do have the VRT exercises from the hospital which include gaze stability exercises but I keep forgetting to do them, very naughty! When I do remember I tend to do the gaze stability ones.

I went for a 5 mile hill walk on Sunday and felt great until I came down the hill! When I went onto flat land again I was really off balance and have felt that way since then. It was really bad yesterday (Monday), and I still feel slightly off today. Over the last 6 weeks I have had a problem walking down streets which are 'ramplike', my legs felt like they would give way I would be so wobbly but that is getting better now!

Dizzyrascal - I think what Scott means is that you get to a point in your life where you can cope with most things quite normally. Over the last 17 months I have been back to work for 6 months, before this 6 week relapse, now back at work again, and though I look perfectly normal to my colleagues and I laugh like I used to, I do not feel normal inside and have never felt 100% recovered. I have always felt slightly off balance for a couple of hours each day and then it passes. Now with the relapse I feel off balance all the time. But I am happy with that and can live like that because it is so much better than when I was living through the 24/7 dizziness, anxiety etc. You give yourself a pat on the back because you have gotten through the day and managed well, you can even completely forget about it at times!

I am always hopeful that there will be an end to this but at times I do still get frightened that it's all back again because I feel so bad. I think the answer is to stay positive and keep active.

Take care x

nowhere does any doctor tell you if you had an inner ear virus that your never going to be the same again. it comes....might stay with you for a while....months and months....but it goes away. no docotr that ive been too...the ones who are trained in it have said its a forever thing. if it was don't you think it would be something more serious and common in lots of people? come on....lets not sit around on this board and say things that just aren't true.

dizzy rascal
your say your around the 7th month mark and reading your posts your alot better than what you were and youw ill continue to get better. im around 7th too and im back playing gigs with my band and doing things that i couldn't do before. it will go away. it just is a bad thing to go through. plus your like me where the initial attack.....since you never had true spinning or an attack it was just bad one day and just felt off. so your initail injury wasn't clearly as bad. its not uncommon for you to feel these feelings for many months. and the proof is that your getting better.

ive been told that the 100% you feel afterwards is better than what you had before because you've been through this and that little things don't bother you as much as they did. which is true. the other day i stubbed my toe really bad and i thought....thats nothing. its a small example but you get the picture.

no one on here is a doctor.....not even me. just look at the facts and know that you get better

Hi Dizzyrascal,

>>>when you say 'new' 100% does this mean I will never feel completely normal?

Yes, I think we will feel normal again, so much so that we won't even think about this illness much or at all. I have already been close to that point where I hardly gave it any thought and was nearly 100%. But for me it feels different. That's not to say it's not as good as before - just different and many have said the same on this board too. But at the end of the day, it's totally subjective too. Subs reckons he feels no different now then he did before he was ill. Sorry if my comment freaked you out - wasn't meant to at all.

C&R - when I say a different 100% that does not equal an old 50%. That's not what I am saying. Watch the video by Dr Rauch who explains this well (vestibular compensation). The language analogy says it all - and he IS a doctor. No one has said anything that is not true. Think about it: if your vestibular system has been hosed, and your brain has to "rewrite" the balance story, there's every chance it may feel different for quite some time but eventually you'll be so used to your new compensated state you'll likely forget all about it anyway.

According to Prof Halmagyi the relatively rapid and apparently complete recovery following unilateral vestibular loss which was once thought to reflect plasticity of the central nervous system only is now known to be false. Vestibular compensation is not a single process that recovers completely at a rapid rate but is made up of a number of subprocesses that recover to *different levels* and at *different rates*. In some subprocesses there is very modest recovery; in other processes there is likely *substitution* of other sensory input for the affected vestibular input. New behavioural strategies also appear to be learned to allow gaze and posture control to operate as if normal. The recovery after an injury is never complete even though the person feels compensated. This probably explains why some, even though they operate normally, feel a little different.

Best...Scott

[QUOTE=comeandrelax]nowhere does any doctor tell you if you had an inner ear virus that your never going to be the same again. it comes....might stay with you for a while....months and months....but it goes away. no docotr that ive been too...the ones who are trained in it have said its a forever thing. if it was don't you think it would be something more serious and common in lots of people? come on....lets not sit around on this board and say things that just aren't true.



Chris,

I do not come onto this board and tell lies about what I have told by my ENT, why would I want to do that, so I think you are being very unfair in your comments. I come here for support from people who know more about this illness than I do and can give me reassurance when I need it. I know that what he told me was a load of rubbish and I have had this illness for long enough and done enough research to know that I will recover fully at some stage. Plenty of people here have had bad experiences with doctors, I am so happy you are not one of them.

Mac2

ok...i didn't say that you came on here telling lies. you can make your comments and i will make mine. no one said anything bad or wrong. sorry if you took what i said wrong i didn't mean anything by it.