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Damage and migraine

#1

On my last visit to an otolaryngologist the doctor said it won’t be known until I die and an autopsy is done what caused my vertigo problem. I have bilateral vestibular loss. He said it would probably show migraine or Menieres disease I have no hearing loss but do have tinnitus on the left side. I have only seen a little information about one 70 year old man that lost his balance from migraine. This doesn’t seem to be the rule of thumb that migraine can wipe out ones balance system. Also a friend of mine is suffering and she is wondering if a person can have continuious migraine. I told her about the book by the B guy that wrote a popular book. I had the name for her at the time I can’t spell now. How really common is is to have a continuous migraine or for migraine to damage the ear system. It seems to me if a person has migraine bad enough to damage the ear it would happpen in other places on the brain also. Why would it just happen to the ear. I guess I can’t picture the brain or ear and what is happening to understand how this could just locate itself there and no where else in the brain. I get migraines about once a month now and they last 2-3 days and use to get the aura more often than I do now. I have neck problems with buldging disc and degenreration I think this is a big contributor to my migraines. Any comments on this.

Linda

1 Like
#2

Hi Linda

There is a very rare variant of migraine called Familial Migraine with Bilateral Vestibulopathy. Dr Baloh (the expert in this area)
describes it as follows:


Familial Migraine With Bilateral Vestibulopathy.–In 1994, we reported three families with multiple members who experienced migraine headaches and brief episodes of vertigo (minutes), followed in later years by progressive loss of peripheral vestibular function. The episodes of vertigo were dramatically responsive to acetazolamide. In the late stages, when vertigo attacks had stopped, the patients noted imbalance and oscillopsia due to the bilateral vestibular loss. We have also ruled out linkage to the 19p locus of the FHM and EA-2 gene in these families. We suspect a mutation in a calcium-channel subunit that is expressed selectively in the vestibular hair cells to explain the episodic vertigo and progressive bilateral vestibulopathy with normal hearing. This probably represents an inner ear equivalent to EA-2 where episodes of vertigo and ataxia lead to a persistent ataxia, loss of cerebellar neurons, and cerebellar atrophy.


As above, if their suspicions are correct that migrainous vertigo is a channelopathy, it may simply mean that ion channels in both your brain
and inner ear become dysfunctional at the same time. As he’s mentioned above, the best treatment for all neurological channelopathies
is a drug called acetazolamide (Diamox). Has anyone tried you on that? If you have complete bilateral loss, it is unlikely to help with that,
but may assist greatly with other migraine symptoms. Some of the documents on the front page of this site have reference to benign recurrent
vertigo, and mention that some sufferers end up with bilateral vestibular loss from it (after the vertigo begins to subside). BRV, MAV, migrainous
vertigo all mean the same thing - but perhaps they also consider bilateral loss such as yours just another thing under the umbrella term of
migraine. I think one of the articles there also makes mention that Acetazoalmide is effective in 70% of sufferers.

It isn’t that common for migraine to become chronic, but it certainly can - I am amongst those who can say they are light sensitive on a daily
basis, with daily headaches, dizziness and visual auras. I constantly see shadows around objects and lines floating in my vision. I think the name
you are referring to is Heal Your Headache by Bucholz. How old is your friend who is also suffering - MAV is most common in women in their 30’s
but can occur in anyone at any age. I think the book you pointed her to is a step in the right direction - it also has advice on preventative meds
which may help her out.

Adam

2 Likes
#3

Hey Adam, thats all very interesting. Sure wish I had the resources to persue all that and find out what has been going on. I did have one nueor doctor say its probably genetic and the ear degenerates at a certain age for someone with that type of problem He may have meant what you wrote but didn’t explain it to me. I don’t have anyone else in my family with anything close to what I have. My mom did have migraines in her younger years. The 123 book is the one I told my friend about she is in her early 40s. But had dizziness for 15 years or so. Just never migraines until this year. I haven’t been prescribe diamox. I beleive my ear doctor brought it up once but said it was for those with ocillopsia. I was tested for that and didn’t have big problem with it. At least that day I didn’t. I make appts go see him and somedays don’t make it because of focusing eye problems or dizziness and then will have a better day. He says he thinks mine is a fluctuating situation so on the days I can see him maybe my vestibular system is kicking in better that day and then the testing isn’t showing the whole picture. Thanks for the information. I know what you mean about shadows. I always say I have halos around things. Take care Lindam

#4

Very interesting Adam. This would explain the total set of symptoms for those that seem to have developed VM without any trauma. But it seems Diamox has not remained as a go to drug for MAV?

#5

Well it woukd be perhaps if I could really understand his poiint. I’ve heard of this rare familial Migraine with Bilateral Vestibulopathy before but surely this bilateral loss is detectable on testing some how? I’m sure I’ve read although it wouldn’t cause people to lose balance totally permanently (as one would imagine),because the brain can and does compensate, people would still be left disabled by it and not respond to preventative type drugs?

Whatever does this mean?

Years ago I had doctors mention both ‘benign recurrent vertigo’ and ‘migrainous vertigo’ in connection to my own case and assumed that MAV is just the latest name for the same thing. Helen