Monday we went to Denver to see my Neuro doc, and he believes I do not have Meniere's disease. So that is the good news. He does feel I have some permanent damage to my vestibular system, and suspects it is from the Labyrinthitis attack I had in December. He thinks I made a good recovery from that initial attack, and that my body compensated for the damage, but then in June, something else happened, we aren't sure what. Another virus or something maybe, but that caused further damage, and sent my brain into major confusion. He said my brain is having trouble interpreting the signals because of the damage in there, but that in many cases, your body learns to compensate. However, it's a long road to that, if it does happen at all. He seemed very optimistic since my symptoms have gotten better than they were in July (which I would consider the peak). So it's kind of a wait and see. We don't really know for sure, but he really seems to think it's not Meniere's since I don't have any measurable hearing loss or ear pressure, just the tinnitus, the dizziness, spinning, motionsickness, and the unbalance. I suspected that as a possibility since I looked on the internet at Meniere's and felt like my situation didn't quite fit the description close enough. So, we are very happy about that part anyway. Meniere's has a rough prognosis, so my prognosis now should be getting better, not worse. The discouraging thing is that he said I will always have trouble with motion now, and that there may be things that happen that cause things to go haywire again, and set off another bout like I had this summer. He said things can trigger it, going to the mall, movies, whatever, which can make the signals messed up again; I assume for a period of time. But, time will tell. What do you all think of this? Does it sound like a plausable explanation? Thanks! Julianne

Hi! I also found out that I didn't have menieres disease which was such a load off! I have been dizzy since July 12. It sounds like we have the same symptoms. I have been doing balance exercises which I got from a balance center in Chicago. I have been avoiding sleepy medicines which is supposed to hinder or stop the compensation. My biggest struggle right now is neck tension and tightness and according to some it is from the imbalance and my neck muscles just are plain worn out! The neck tension is causing me to feel lightheaded. I have been doing some neck exercises and today I feel about as good as I have since this thing hit. It scares me though, to think that certain things can cause it to reoccur. The balance therapist in Chicage said that it could be another 3 months before I feel normal, to not quit the balance exercises (I am faithful) and she did tell me that I could have reoccurences or it could leave me for the rest of my life. Inner ear disorder is sure a mystery!! Yesterday was the best day I have had as far as going to the grocery store. I actually made it through 3 different stores! I was really tired when I got home, but it was definitely better. It is amazing how much you appreciate the little things when you are dealing with something like this! Hope you have a good day!

Hi Julianne
Seems very plausible to me. It is almost exactly what happend to me.
I had Laby in 1999/2000. I fully recovered in about 8 months. At the time the neuro-oto told me that if I had a bad enough infection in my ear I could decompensate.
I had a sinus infection in March and came down with a full blown inner ear mess. It was alot like the first mess but some of the symptoms were very different.
I have still not completely recovered from the second bout of this. Sometimes I get so worked up that I convince myself that it is something totally different because it has not gone away in almost 7 months but no-one can come up with a different approach. I am getting better but very slowly.
I have also been having a lot of trouble with my neck. My symptoms seem to be worse when I am having neck trouble. To rule out anything sinister I am off to an orthopedist.
Hope you soon feel much better.

Mia

Hi Julianne,

That's really good news. Yes it sounds totally plausible, did think the menieres diagnosis sounded a bit off in the first place. I'm in month 13, although was hindered by seeing a couple of rubbish ENT's before finally getting to a neuro oto months in to this. I only started my VRT programme 5 weeks ago and have also been told it can take 3-4 months to feel better. The one thing I would ask is have you been referred for a vestibular rehabilitation programme? I started mine very late in the day. If you start sooner, you can recover faster.

As for the prognosis - always feeling dizzy sometimes from here on in - very hard to say. In all honesty, I don't think the specialists definitely know the answers. The one thing I do know is, keep active, and do the VRT, the more chance you give your brain to relearn how to balance, the greater your chances of staving off the dizzies for good. Learn everything you can about the process of compensation, most importantly how by challenging your vestibular system, you will often feel worse, dizzier, before you feel better, but it's critical you push through this. Do not avoid situations and things that make you dizzy, it feels good in the short term, but if you want long term recovery, it isn't the way to go. Obviously all of this is within reason, everyone needs to rest and pace themselves, but I work at home, and realise now, that I have been avoiding going out. I am now determined to get out and about, even when I hate it, as no way do I want to be stuck with this rubbish for good.

Do a scoot through Sub's posts - if you put his name in search it will bring up many of his posts. There are some excellent links about the compensation process. Fighting this is scarey, but understanding what is going on, and knowing what to do, has really, really helped me.

best,

hbep.

Thanks for the responses. I haven't heard a thing about any sort of therapy yet. I will contact the doctor and ask if he has any plan like that for me. Right now I am functioning fairly normally, but I do get tired faster than I should, and there are some unpleasant disconnected moments in my day. Then of course there is the odd spinning and strange things going on with still objects that just shouldn't be moving. But I do feel much more in control than I did back in July. I was so lost then, I felt like I was at my wits end. Then with this Meniere's diagnosis, I felt such dispair at the idea of having MORE and MORE forever. It has lightened my spirits to know this has some potential to improve. My husband got the news and was ready to enter me in the next marathon! I had to pull in the leash and remind him I still feel the same, lousy. I sure don't want any less "attention" for my ailments just because it's not Meniere's!!!

Interesting that some of you have had similar symptoms. Mia, I was curious about your take on the drugs. I was a bit confused by that. My doctor initially said that taking the vestibular supressants would slow down the recovery process, but then by the end of the visit he prescribed Clonazepam (a valium relative) to take 2x's a day. I took it last night to test how much it would make me sleepy, and it seemed to make me sleepy, surprise! I just can't function on drugs like that during the day. But I also wonder, if it's just for symptomatic relief, and has no healing properties, why bother unless I am having a really bad day? And why take it daily for two months as it was prescribed for me? Won't that make matters take longer to resolve? I am just a bit confused. I think I may call him tomorrow and get his take, but, like most of us here, we are interested in what other's experience has been, since most of our docs haven't actually HAD vestibular disorders, so although they are knowledgable about how the inner ear works, they can't really be in our shoes. They sure don't know what it's like to have two choices all the time, dizzy or wasted.

I hope all of you are well, and that you enjoy continued recovery. Julianne

where's my post? Sometimes I write a lengthy thing, and it doesn't show up. I don't know why. In case it does, I just wanted to add a few things. A correction first, it wasn't Mia that mentioned the vestibular drug issue, it was Dizzy in Missouri, sorry about the confusion. If this make no sense to anyone now, it's because my other post never showed up. Sorry, I will have to repost later. I'll see if it appears tomorrow first. The other things I forgot to mention in my diagnosis were Migraine. My doc was noncommittal, but willing to add that he thought migraine may be playing into this. I don't have migraine headaches, but my Mom does, and her mom does, and her mom, and so on...so I could be having a touch of that as well, I certainly notice my symptoms are worse at certain times in my monthly cycle for what it's worse.

The other part I forgot to mention was the doctors diagnosis of Panic Attacks. I didn't care for that idea, but it makes sense to some extent. He feels that those odd lightheaded attacks where I felt faint and my ears really started ringing and my heart was racing that have come during odd times when I didn't feel particularly stressed (movie theater, driving down from high elevation, another driving episode)were panic attacks. He says it's very common in people with vestibular disorders. Maybe another reason he gave me this Clonazepam script. Just wanted to add that in case anyone has any thoughts. I know Ilia, you mentioned some similar episodes like mine. I wonder if he is right on, or if he is stretching to explain yet another annoying phenomenon of this fun ailment.

Hi Jetiegs

I know what u mean about is this a panic thing or vestibular thing - i have no clue cause like u it can just come on like at odd times. My VRT doc said thats it likely an autonomic response to the vestibular upset - either way I do not like it.

What have they diagnosed you with now that they do not think its meinieres?

I am interested cause we sound similar - what are your symptoms like now on a day to day basis.

Got to dash but look forwrd to hearing.

<<<<My doctor initially said that taking the vestibular supressants would slow down the recovery process, but then by the end of the visit he prescribed Clonazepam (a valium relative) to take 2x's a day.>>>>

I find this interesting too, everything i read on the internet says medications will slow down the process, to just get out there and retrain your brain. My current doctor is "supposedly" the tops in my area, he explained it to me like this that really made sense: using say tennis elbow as an example, if you just get out there and keep playing on it day after day with no medications, its never going to heal and will probably get worse, same with your brain, give some relief (klonopin) in my case, will slow down the process but will heal eventually, As for not functioning well on the klonopin, my initial dose was 1 .5mg tablet at night which did nothing, but i found if i take the .5 at night and then 1/4 of a tablet when i wake up and another 1/4 after lunch, my body has gotten used to it and i don't feel drowsy and actually feel about 90% normal most of the time.

Sorry all for taking so long to reply. We have been out of town for a long weekend.

Let's see if I can remember what to reply to now! I have been diagnosed with vestibular damage, probably as a result of Labyrinthitis and then some other mystery thing which put me over the top. The damage is permanent, and my best hope is that I will learn to compensate. I was also told I may have a touch of the Migraine Associated Vertigo, but that is yet to be determined for certain (migraine runs in my family, but I don't have headaches, which apparently isn't necessary to be diagnosed with MAV).

My symptoms continue, but they vary from day to day. Right now I am a bit disconnected, motion sensitive, and a little sick to my stomach. At night, I have mild vertigo when I lie down. I also feel a bit off balance at times. All in all, it's an improvement over my symptoms back in July when I really couldn't function well. I continue to have yucky days, but at least I can get up and do things.

You all may find this interesting. The doctor warned me of the possibility that things can set me off. I experienced this this weekend in an obvious way. My husband took our kids to the indoor swimming pool at the hotel we stayed at, and I watched from the side. The sound, activity, screaming children, and wavy pool set me off for two days. I felt just awful, and had to take a nap for a little while. Then that night I had to take my Klonopin as I kept feeling I would fall off the bed, and when I did drift off to sleep, I would be suddenly jerked awake over and over again. The next day I felt awful too, and then the following day, I felt pretty good again. Today is mixed. So there is definately something to the idea that I can be set off by certain situations.

The Klonopin (aka Clonazepam) makes me sleepy, there's no doubt about it, but I appreciate the advice on taking small amounts. My doc prescibed .5 mg tabs, split in half. That half tablet knocks me out, so maybe I could try the 1/4 tab and see what the effect is. Thanks for that idea, and also the thoughts on the medication and recovery.

So the saga continues anyway. Hope everyone had an ok weekend. Julianne