I’m kind of stuck in “going nowhere fast” mode right now, what with conflicting opinions, a confused doctor (who doesn’t reply to e-mails) and other various problems, so I decided to give in and try the Diamox. Turns out it isn’t the same sulfa derivative as was in Bactrim (the one I reacted to). Reached the full dose in four days, with no apparent SE’s. I’m only doing it because I’ve read some neuro’s use it for MAV…
Anyone here who’s found success on Diamox? Or, any suggestions how long a fair trial would be? I’m willing to give it maybe 3-4 weeks, unless it starts adversely affecting me.
Obviously I’ve revised this post, but today I have a nasty old headache that just won’t die.
I’ve only had it for altitude sickness and all I got were shaking hands and lots of trips to the loo. Oh, and I got a WHACKING huge migraine as well.
I took diamox for a few weeks about 2 1/2 years ago. It was prescribed by a neurologist. I was taken off it by an ENT who said I have benign positional vertigo (WRONG) and any meds would just prolong my illness. I am very med sensitive and from what I recall diamox was easy for me to take. I experienced little to no side effects. I didn’t give it long enough, however, to see any benefit and I often wonder if I would have improved had i stayed on it. Good luck.
I suspect Diamox is not the drug for me. OK, I’ve only been on the full dose for three days, but I don’t really see why it would have much practical use in a very hard-to-manage case of MAV like mine.
I am just wondering… did your doc say he was using Diamox to treat vestibular neuritis? Sorry you are not getting any relief except from the occasional dose of valium.
I don’t know what in the world he’s doing, quite frankly. I think he was initially thinking something more like microvascular compression – he gave me the Diamox Rx after the very first consult, by the way – and then changed his idea over to VN as the #1 idea, but still suggested I start both VRT AND Diamox! (Oh, and if I were to do both – which I most certainly will not – how would I know which was working?!)
He and his assistant are either absent-minded, clueless or disorganized. He almost never responds to e-mails directly. He never said WHAT Dx he was originally giving Diamox for.
Get a load of this, if you want a “laugh,” by the way: His assistant once told me, in person, “For your medical records from our clinic, just give me the permission form. I’ll handle it myself and bypass Medical Records Office. They’re too slow. I’ll fax you the stuff today.” I e-mailed her three weeks later to ask where the documents were. Reply? “Please contact the Medical Records Office with this request.” Sheesh!
Hecox and his assistant are even less organized than Hain and his front-desk staff! It’s like a bad joke!
Yes, this does sound like a comedy of errors… at your expense though. What is the next step for you? Do you follow up with Hecox? I know in previous posts you mentioned possibly seeing Hain again? How are you feeling?
I was on Diamox for almost a year, but it was because of some terrible full body tremors I was having and a family history of episodic ataxia-not because of MAV.
It’s hard to say if it had any effect on my MAV because I have had 2 migraines every day for the last 2 years. The tremors were the main reason I went to Mayo last year. They felt that Dr Hain was on the right track and to keep with his program. The diamox stopped the full body tremors although I still have tremors in my right arm when the migraines are bad. I stopped the Diamox when I started the Topamax.
Speaking of Topamax: I guess it shows how everyone is different and the same doctor (as they should) treats different patients differently and as an individual. At my last appt. I was at 100 mg Topamax and I was surprised that he would like me to slowly (monthly) titrate up to 200 mg of Topamax. My new HA doctor agrees. I am just starting 150 mg today. I told Dr Hain, that the main SE I was concerned about were coginitive. I start a doctorate class tomorrow. I had hoped to be magically “cured” by now!!
Lisa: I’ll only follow up with Hecox to the point that I’ll e-mail him and let him know whether or not this is working. Like I said earlier, at the four-week point (the most time I’m willing to give Diamox), if I’m not better, it’s over with him.
It looks like my parents – mother, yes; father, maybe – are becoming a bit disillusioned with Hecox actually. Which is in my favor. Mom CC’d me on an e-mail she wrote to The Migraine Center (the Keeler Center Migraine Specialists at Ojai Valley Community Hospital) and in part she wrote: “I have a family member that is dealing with what we believe to be [MAV].”
She also then added that “we have used up specialists in Chicago and Wisconsin, to no avail,” but just recently, the folks said basically that they’d try to back off and let me make the choices on my own. So, if I want to go back to Hain – which I definitely DO – then I’m saying “I’m doing it, whether you like him or not.” If I have to, I’ll hop the train and catch a taxi into Chicago by myself.
I’m willing to bet you this Migraine Center (which I’d never survive the airport and flight anyway) thinks of migraines as “bad recurrent headaches” and doesn’t know about MAV.
Oh, and I called Hain’s clinic and spoke to a knowledgeable person who said yes, if I want to mail a folder of updated records and info for Hain / Cherchi to review (in advance of another app’t.), I should feel free to do so. AND, not only can I specifically request HAIN for a follow-up, but I can even request an hour-long instead of a half-hour follow-up. So, my future with his practice is looking up.
That sounds like a very reasonable plan. I am sorry you have to go through all this when in your heart you feel you have MAV. We all have a story as to how we got to the right doctor and the right treatment. It took me over a year to get my diagnosis and to hook up with a doc that specializes in MAV.
If Hain is the closest guy to you who specializes in MAV, then it may make sense to go down the treatment path with him.
I’m not sure how hard it is to get an appt. with Hain, but you may want to set one up with him now if you want to see him in a month… You can always cancel if the Diamox works.
Yeah, when I first saw Hain, the U.S. was in the throes of the recession, so he was quite available, as he himself admitted. I’ll have to check on what the current wait-time is; thanks for reminding me of that.
Hain, I think, I trust more than any other clinic. How many doctors maintain a Web site of literally hundreds of individual pages, the content of which they themselves wrote up? Besides, a specialist in both balance and migraine (and MAV) – a rarity. I’m lucky to be within an hour’s trip of his office.
It’s too bad that I had to get dragged AWAY from MAV and then claw my way back to it. But, I suspect that all the new tests and info I give him (from the time since he last saw me) will actually only give him more evidence for MAV. And, I tried a couple of other (used for MAV) medicines. Maybe I can get that Keppra Rx re-written (I seem to have lost it…); anticonvulsants are the one major drug class I’ve yet to try, and Topamax seems to drive almost everyone crazy.