So far I’ve seen 3 ENT’s and one neurologist and have gotten nowhere with this other than lo-so diet and a diuretic. No firm diagnosis yet.
Last week I had my annual appt with my PCP and I asked him again who I can see about this and he told me if the four doctors he has sent me to can’t help me then no one can. He says he has lots of patients with vertigo and I just need to live with it. I really like this doctor and am not going to stop seeing him because he is good in every other way but he has no clue about vertigo and when I asked about neurotologists in the area he said, “what’s that?” Just to confirm - there are NO nueurot’s near me. I even sent an email to Dr. Hain and asked him and he came up with nothing. The closest is about 125-150 miles away and financially/emotionally/physically I just can’t do that.
I feel like I am at a total dead end now and the only solution is I just have to live with it for the rest of my life. It’s been about 4-5 months since my last severe vertigo attack so maybe that is getting better, I really don’t know for sure, I could have another one half an hour from now. What I am sure of is the daily motion sick feeling and motion sick headache is not getting better, only worse.
Much as I hate to admit it I am probably complicating any kind of diagnosis because I refuse to take the ENG test. I don’t know what to do now excpet admit defeat and give in to it. I so much want to be able to live like normal people and eat normal food.
Tranquility -
There really isn’t much to my medical records except my own one page neatly typewritten history of my vertigo/diziziness problem and my MRI report and my 2 hearing tests. I’ve had no other testing done. I doubt Dr. Hain would do a phone consult without more testing. The last ENT doctor I saw refused to do anything with me unless I had the ENG and told me I was “wacko” becuase I wouldn’t have it.
Hain doesn’t seem to care much about tests if the symptoms point enough to one disorder, though. You could always email them (info at dizziness-and-balance.com) and ask if what you have is enough to get something out of the whole deal.
If someone has a clear-cut case of MAV, he doesn’t perform any tests at all, I’ve been told by many sources (several of them on this board). I realize your case might not be clear-cut, but with the motion sickness and headache it seems pretty likely to me, as an amateur, from what I’ve read here.
Bookworm, I don’t recall, were your MRI and hearing tests normal?
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Marci - MRI was normal. Hearing tests show some loss of hearing at high end. My test from 15 years ago is pretty close to what it was a year and a half ago. The more recent one was slightly worse than the earlier one in that I was down about 5-10 decibels across the borad but neither left or right ear is better/worse than the other. I was told the high end loss could be normal aging or damage from loud noises, there is really no way to tell what is causing it. One doctor said the important thing it showed is that because it’s high end, not low end, meniere’s may be ruled out. But another doctor said he can’t rule that out.
Hain doesn’t seem to care much about tests if the symptoms point enough to one disorder, though. You could always email them (info at dizziness-and-balance.com) and ask if what you have is enough to get something out of the whole deal.
If someone has a clear-cut case of MAV, he doesn’t perform any tests at all, I’ve been told by many sources (several of them on this board). I realize your case might not be clear-cut, but with the motion sickness and headache it seems pretty likely to me, as an amateur, from what I’ve read here.
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Trainquillity, I didn’t know that Hain doesn’t perform any tests if it is a clear cut case of MAV. That is interesting to know. I so much wish I lived near him. or better yet, if he made house call - haha. Knowing that, maybe I will send an e-mail, at least to get a little info. Thanks!
There are many people on this board that have done a phone consult with Dr Hain. Not as good as a house call, but close. This is actually how they got a diagnoses and a treatment plan to take back to their doctor. From what they say, you have to pay upfront because alot of insurance companies won’t pay for phone consultations. :x Their loss, the potential to save money this way is there. You may want to check into this.
Good point Mikael – no doubt because he has such a good web presence and updates his treatments pages when necessary. But Baloh, Rauch or Adleman, for example, would be just as good I would imagine.
Many neurologists I’ve known are either hugely pompous or (in some cases) so brilliant that they’re completely disconnected from people and from reality.
Hain has an extraordinarily bright mind AND is exceedingly kind and understanding – really listens. When you put those two things together, you have a doctor everybody wants.
Hain is known to do phone consults where the others are not. Baloh would be a great choice, but he doesn’t do phone consults (I tried) - I believe he doesn’t see many patients anymore either, but leaves it to his associates (who are very capable). He mentioned to me he is spending more time doing research than clinical work. His interest lies predominantly in the genetic component of this.
I find it odd that a doctor wouldn’t rule out Menieres with two audiograms 15 years apart being close to each other and hearing loss only being at the high end.
Will your PCP prescribe you migraine meds without a diagnosis? A response to them is considered diagnostic in itself (in the absence of any real tests that can identify MAV for now…)
