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.
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 ...
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.
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 I think I'll stick with my vestibular therapist from now on. At least she listens to what I have t say...
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.
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!! 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.
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
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.
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.