I’ve been a sufferer for 13 years now (though just in the past couple of years have I been dx with MAV by Dr. Hain and started trying MAV-type treatments).
I’ve tried the Migraine diet for several months but didn’t notice any benefit. A list of migraine preventatvie meds I’ve tried thus far:
None of which have helped. My next drug will be Topamax and I’m a bit scared after reading about all these horrible side effects. Which brings me to my question. I plan on asking my doc to start off at like 6mg/day and then increase 6mg/day every week to try and head off side effect issues.
-Has anybody else tried this approach and if so, what were the results with regard to side effects-were the lessened?
-What effective dose did it take for you to notice a difference in your MAV symptoms?
-Lastly, after you hit your effective dose, did you have to maintain that dose for 4 months OR do you start counting the 4 months from the time you start tapering the med?
A big thanks to all take the time to weigh in…
I’ve tried many of those same preventatives…found something that worked pretty good in Cymbalta. What are your primary symptoms, and did you get any relief from those meds?
I have read a few threads here where people started super low on Topamax…I’m sure many people get better with it as it is the main rx for migraine prevention these days from most neuros. The odds should be good it will
work for you.
Thanks for the positive words! None of the other preventives I’ve tried worked at all. I’m glad Cymbalta has worked for you. If Topamax fails, I’ll probably try that next. My symptoms are (all 24x7):
off the top of my head (pun intended):
-feels like I’m wearing a helmet (head pressure all around my head)
-rocking sensation in my head
and some others. All testing is normal (hearing is fine, MRI normal, ECOG, blah blah normal). I’ve tried all kinds of therapies and nothing’s worked.
I am hopeful for Topamax (plus I could stand to lose some of the weight I’ve gained while taking Propranolol and Amitriptyline).
Yep, sounds like a perfect case of MAV…even though it’s all different…it’s all the same too somehow. :?
You should do really well on topamax since it is a different class of meds…the anticonvulsants are meant to calm the brain down, so even if topamax doesn’t fix it altogether, there are some other meds in this class that might be good too.
Sometimes realizing which meds don’t work is really a gift…you get to cross it off and get to what will!!
keep us posted!
I answered your post regarding the coffee. I’ve struggled with this condition for 3 long years now. I started Topamax exactly one month ago and have had outstanding results with it thus far. I am extremely sensitive to medications and have tried most of those on your list - many worked great for anxiety/depression, but Topamax is the only one that has been able to gradually eliminate the dizziness thus far. That’s pretty impressive for only one month’s time at a fairly small dose. HOWEVER, this is a powerful medication and you’ve got the right idea in wanting to start low & slow. I insisted that the neurologist give me the smallest available dose of Topamax (my daughter already takes this dosage) which is the 15mg sprinkle cap (often has to be ordered by the pharmacy). You can open the capsules, but I was so desperate for relief from the dizziness, I started off at 15mg. @ night, then in 3-5 days went to twice daily, then 30mg. @ night/15mg daytime, and so forth. My neurologist was quite amused at the tiny dose that I was taking… Anyway, I was pleasantly surprised how the Topamax calmed me down in the evenings, but it wasn’t all that sedating during the day. I am now at 30mg daytime/30mg evening and doing pretty well… It can be quite activating so I take the evening dose at 7-ish to prevent insomnia. There is some adjustment, there are some side effects (many which have already disappeared), and most people do seem to lose weight due to appetite suppression. Hope that’s helpful to you!
Excellent Gail. That’s the exact kind of info I was looking for!
I also read all the horror stories and was afraid of the drug but the dizziness was so disabling that I was willing to try anything. On recommendation from Dr. Cherchi I started out at 25mg for 2 weeks then 50 mg and after 6 weeks my dizziness returned so went to 75 mg where I am today at 4 months. Yes I had some difficult side affects at first but they were not nearly as bad as the dizziness and disequilibrium. It did not rid me of the migraine but did make it manageable. After 4 months the only side affects I really notice is some difficulty in recognizing common words at times (not really a problem) and I seem to tire quickly in busy environments like when shopping. The gabopentin I take has worse side affects! From all the stories I have read there are two kinds of topomax users - those that have bad experience and those that have good experience. Suggestion is to try it and see, it gave me my life back.
Kenny - I’ve been meaning to ask you: do you take the topamax in divided doses, or do you do one 75mg dose??? I couldn’t imagine a one-dose way of taking topamax, but whatever works, right??? Glad you’re doing so well on it, also. I’ve also come to the same conclusion as those on the forum: you either like the med because it works for you, or it’s rather horrible.
I take 25 mg in the morning and 50 mg in the evening. I do have an appointment next week but I cannot imagine that anything will change at this time, all is as well as can be for now.
Kenny - that’s so great to hear. Your story was in my mind when I first tried Topamax knowing that someone else had great success with it. I even raised my dose to 45mg at night hoping to get more benefits with the food trigger stuff but I wasn’t adjusting well yet and figured I’d leave it all alone for now… why fix it if it’s not broken?