Neurologist now says VN, not BPPV or MAV

Went back to the Chicago Dizziness and Hearing Clinic for my follow up. I have seen a bunch of doctors in the Chicago area where I live, but have found that the Dizziness Clinic is far better informed and more sophisticated.

They now think what I have sounds like VN instead of bppv for these reasons:
–It has been 9 months and I did extensive physical therapy for bppv, but the Epleys did not work, and the physical therapists were never able to precisely figure out which canal had the loose crystals (they were pretty much guessing since I had nygstagmus both sides at various times);
–I’ve had just gradual improvement each month in ability to function, no more spinning vertigo, plus I have had general upward progress which suggests that I am compensating;
–tests were normal except 25% hypofunction on left ear during the caloric water test;
–MAV meds like Topamax did not help (had reaction) and I did not have my typical migraines for most of the time I have been dizzy – I only had one short cluster of headaches that have gone away with magnesium supplements;
–VRT seemed to help;
–I am still dizzy with eyes closed but better every month with eyes open, so it seems that some type of compensation is happening.

I am comfortable with this diagnosis, it seems to make sense to me. I just think that I will continue with the low dose valium a few nights a week to help me sleep. I am now able to work a full day and also run 3-4 miles and do light exercise about every other day. Basically I have to wait this thing out, it might be years till I am 100% of my old self, and the dizziness with eyes closed might never go away.

Hi Longshort,

Do you have any light or sound sensitivity? It’'s hard to believe that as a migraineur that if you did have VN that the migraine hasn’t been acting as a complicating co-factor. But then you are making steady progress and VRT has also helped which is great. Really hope you continue to improve and see the end of this. Keep us up to date with your progress.

Best … Scott

Hi Longshort,

Thanks for sharing your experience, as it’s really interesting how your diagnosis has changed. I’m really glad to read you have improved a lot.

It’s all so confusing, as the symptoms in each condition overlap a lot. Did you try other migraine meds apart from topamax?

My experience has been fairly similar to yours with a gradual improvement over time (with one or two blips), but as I’ve been on propranolol and pizotifen, my diagnosis has stayed at MAV (and BPPV). Of course it’s impossible to say whether I would have had the improvement even if I’d not taken anything.

Hope you continue to improve and hopefully make a full recovery.

— Begin quote from “scott”

Hi Longshort,

Do you have any light or sound sensitivity? It’'s hard to believe that as a migraineur that if you did have VN that the migraine hasn’t been acting as a complicating co-factor. But then you are making steady progress and VRT has also helped which is great. Really hope you continue to improve and see the end of this. Keep us up to date with your progress.

Best … Scott

— End quote

Hi Scott,

Yes I have light sensitivity, and in fact I have been wearing the special migraine-relief glasses that were coated at the University of Utah Moran Eye Center. That has been a great thing for me. I have been complaining since I was a kid about lights being too bright.

As for the relation to migraine, at this point I am beginning to wonder if it isn’t all related – infection, migraine, stress, neuritis – to the point where the diagnosis is hard to pinpoint. So yes, I think that migraine is a factor for me, however I have been taking 75mg of atenolol as a migraine preventative for over a decade, and it has typically reduced my migraines to a couple of three-week clusters per year (typically one in Spring and one in Fall).

I have felt pretty good the last few days. I hesistate to write that, since I don’t want to tempt fate!