I don’t normally post articles on Menieres here as this is a MAV-specific forum, but I was interested
to find this article today:
Hypothesis: could Meniere’s disease be a channelopathy?
blackwell-synergy.com/doi/ab … 05.00891.x
I am particularly interested in the bolded part below:
Meniere’s disease is a clinical syndrome of uncertain aetiology but it is a widespread belief that it is related to endolymphatic hydrops. Clinically, it is a paroxysmal disorder with vertigo and subsequent deafness. It is responsive to acetazolamide and sensitive to the sodium content in the diet, many of the features of the channelopathies. The present paper explores the possibility that it may be related to a channelopathy.
The reason this is interesting is that Acetazolamide is a drug that is often used in strange and hard
to treat migraine syndromes such as Episodic Ataxia Type 1 & 2 (EA1/EA2), Spinocerebellar Ataxia Type 6 (SCA6),
Familial Hemiplegic Migraine (FHM) etc. It is also sometimes used for normal migraine and comes under
the brand name Diamox. It is believed that it works by normalising the function of calcium channels in the brain and inner ear.
I was unaware that Menieres responds to Acetazolamide - but this lends more credibility to the argument that Menieres
and Migraine may be very closely related and may even stem from the same pathophysiologic mechanism.
Its funny that I should read this today. I was going to post a question about why Diamox would be given to mav people. Dr Battista put me on this and I felt worse. My neck, where I feel all the symptoms, was worse in the sensations I get. Plus I had the worst heartburn on this drug.
Whether acetazolamide is widely effective or not in MAV is still a highly debated issue.
This is from Battista’s article:
Prophylactic medical therapy should be used when migraine-associated vertigo occurs several times a month, is continuous over several weeks or months, or has severely affected the patient’s lifestyle. First-line prophylactic medications include calcium channel blockers (verapamil), tricyclic antidepressants (nortriptyline), and beta-blockers (propranolol). Second-line treatment includes methysergide and valproic acid. Acetazolamide has also been reported as an effective treatment by several authors.
I don’t think its often the first thing they try as there are better choices as acetazolamide can be difficult to tolerate.
It’s probably not terribly effective in migraine or MAV but it is certainly very effective in the migraine diseases known to be caused
by calcium channel mutations. The genes causing migraine/MAV have not yet been found (but it sounds like they are close). Dr Baloh even
told one patient that within 5-10 years there would be a surefire way to solve MAV (not sure whether that means a cure, gene therapy or what).
I am actually starting a trial of Acetazolamide this week so I will let you know how it goes. I don’t like my chances of tolerating it, but I will
keep an open mind.
I wondered why I got worse on this med? Maybe one of the side effects is dizziness. I go to an mm board and see many people on this drug. Dr. Battista said he found a bone deshiscence in the semicircular canal of my left ear, but I don’t have the sound induced dizziness that is a symptoms of this. I felt out of all the Drs, he was the most agressive in finding a dx.
Still I feel he is right about his first dx of mav. But I am going to bring my results of an old hearing test to compair it to the one I just had done and see. Oh yes, isn’t this all so fun!!! I get very frustrated with the meds to try and treat this, I am sooo sensitive. I see people take all kinds of meds togeather and no problem.
I read this abstract with much interest. 8)
It’s pretty interesting stuff. Since I had to buy the article I only read the first part of it - you know, the part that gets you ‘in’?
Anyway, I was given and am still on nortriptyline for periphal neuropathy but it did nothing for the Meniere’s/AIED. I’ve lso been given methotrexate and lamotrigine for different reasons. All are used for MAV and MM sufferes. None of them worked on the MM/AIED I have.
I too, get tired of all the medications. The only lucky thing I can see is that the drugs usually given for MM are the same drugs I’ve been given for other autommune disease/disorders I’ve been diagnosed with over the years. So, I’ve been lucky enough to try out many different types of drugs even though they were given for other reasons. Sad, right?
Have any of you had any luck or been prescribed the drugs mentioned and if so, was there any relief?