I finally got to see the Neuro-otologist up at The National in London last Monday and boy did I go through it! She was really fabulous and after 20 mins discussion said I seemed like a textbook MAV case, and showed me lots of evidence in the form of research papers etc. Then I went for the TESTS. Aaargh! The hearing tests wee ok and nothing wrong with the audio-evoked action potential tests, so auditory cortex ok I guess. But I fell down (LOL) on the balance tests. The Postureography (!) showed a problem and made me a bit nauseous; then I had to sit in a revolving chair in pitch darkness looking at red dots. This was HORRIBLE and I felt like I was going to throw up. It went on forever. Then I joked they were saving the worst till last, eyeing the door with ‘Caloric Testing’ on it. And yes, I was led into that room, shaking like a leaf. After 20 mins of me somewhat hysterically refusing to go thru with it, I agreed. Awful, awful, awful (but I am a wimp I think). The effects induced in the left ear were much worse than the right, and the worst was the hot water in the left ear. Needless to say the whole thing brought on my latest MAV attack from which I am still trying to recover over a week later (not helped by seeing Alice in Wonderland in 3D yesterday).
Well I had a long chat with the doc after the tests and she is going to send my GP (and copy me in) a full report with all the results, but the upshot appears to be I have a significant vestibular mismatch between my two ears. She says this is common in MAV and may be helped with VRT. Plus she’ll try me on different Migraine drugs.
Now this is where I am confused. Has years of untreated MAV caused the vestibular damage or does the vestibular mismatch trigger the MAV or is there another explanation? E.g. are the two unrelated but co-existing? According to Scott’s summary of Dr Baloh’s explanation, he says this:
there is no consistent damage to the inner ear with migraine. This is a chemical thing, with some alteration in the channels of the inner ear. There are “normal” times but other times it’s triggered off and is therefore abnormal. This notion we have of a damaged ear and the brain will compensate is incorrect. It cannot do that. If it’s damaged it’s transient and then goes back to normal and there’s no need to compensate any longer (true for vestibular neuritis but not MAV). Most migraine patients, in-between attacks, are perfectly normal. Vestibular function returns to normal. (My bolding)
Now I used to feel 100% better between MAV attacks but now it appears I have a residual balance problem. This implies to me the MAV has caused the balance problem. According to Baloh, VRT won’t apply/isn’t needed for MAV, but I’ve been told otherwise.
Hence my utter confusion. Apologies if this has already been discussed somewhere here before. I’d really like some answers. I’m thinking of emailing the neuro-otologist with this question but don’t want to sound stupid!
Gosh im going up to london soon would love to PM you some more about this would you mind ?
No, of course I don’t mind! Will be interesting to compare notes.
I have seen a lot of people post who have vestibular damage and MAV. I am far from a doctor, but from what I, maybe the damage can trigger the MAV? I have a little vestibular loss in one ear too.
Thanks Amy 4 your reply. My neuro-otologist (wish there was a shorthand for this - N.O.?) said clonazepam (Klonopin in U.S.) was a good vestibular suppressant, but I also read it can hinder effects of VRT as it ‘masks’ the problem. So more confusion :? ! However, I don’t think I could live a meaningful life without clonazepam - I take it v. rarely but it really helps if I am in the worse MAV bouts. Helps me look after my kids and go to work some days. I don’t need it at all between MAV bouts.
Incidentally, having a really bad day today - following a bad Monday after the 3D Alice in Wonderland business, I felt well enough to work yesterday. Today is my day off and this morning I went for a coffee with a friend (I usually tolerate the occasional cappucino) and she practically had to carry me to my car as the spins started together with a feeling my head was going to burst with the pressure inside. I managed to drive to my chiropractic appointment (oddly feel relatively ok when driving) but she agreed I was too ill for the treatment session, and had to help me walk to my car! Mega-embarrassing :oops: ! Not sure if I’m convinced re. the chiro anyway but thought it was worth a shot.
Now I’m back at home and have had to arrange for friend to pick my girls up from school later as I am in extreme dizziville. I HATE THIS SO MUCH .
Also, have ridiculously stressful things going on at the moment: my work is impossible as we’re understaffed; massive flood in house so currently all our floorboards are up downstairs and we have dehumidifiers trying to dry it all out. They are v. noisy and on 24/7. To top it all we have a rat indoors somewhere - must’ve come in through the holes in our floor. Kitchen units are falling apart, and my husband has decided he can’t make enough dosh from running own business so is looking for a job. I am currently sole bread winner. Plus our main loo (toilet) is seriously out of order, and husband got bitten by spider last night which hurt (thankfully no poisonous spiders in UK - we think!), then I found the spider in our bed this morning :shock: ! Also my contact lens split in my eye and we spent 45 mins trying to retrieve the missing half. No wonder I got the spins big time.
I’m going to go and read the ‘success stories’ section to cheer myself up…
Sorry to rant
Rant away, sometimes you need to I am having a little bit of a bad time myself. I was having about 0 symptoms other than mild tinnitus and yesterday my ear buzzed for a split second, and then the rocking feeling started again. Ugh! This time I did not focus on it, worked out anyway (had a heck of a time on the treadmill) and am trying to ignore it now.
There is a great post on here that says someone talked with a nurse at Dr. Hain’s office who has MAV and she talked about how MAV just feeds on stress, focusing on the symptoms increases them. This is so true. It is very hard not to focus sometimes though.
And caffeine kills me it is a big no no, even when I am completely symptom free it will make me dizzy.