unfortunately I’m not very well educated in terms of all the MAV meds and how they work etc, but it seems to me that in the long list of meds for MAV, very few are designed PRIMARILY to treat the migraine mechanism - is that right?
Instead, it seems to be: “here, try this anti-convulsant - as it also seems to work for migraine, although we don’t completely understand why”…“here, try this anti-depressant - as it also seems to work for migraine…”, etc, etc!
The only drug I personally know of that seems to have been designed specifically for migraine is Pizotifen. I’m sure there are others, but it just seems that the majority of MAV meds in professionals’ amouries are designed for another purpose, but it has been discovered that they just happen to have an influence on migraine…? Perhaps there’s more migraine-designed meds that I realise - that’d be a nice surprise! But I guess it comes down to economics, in terms of the cost of developing these drugs (why develop a new one, if an existing one that was designed for something else just happens to work for some people, etc?), plus the difficulty in understanding this strange migraine mechanism, etc…? Also, I guess that drugs act ‘globally’, so by their very nature, will affect a variety of conditions…?
HI Tony,
Yes, it’s crazy about these meds. I remember asking Dr. Hain if the drugs that help migraine are the ones for MAV and he said yes. I think the efficacy for the meds working is similiar in percentages of people that get better with them, but they try to use the meds that will help any co-existing conditions. Like if you have high blood pressure, or anxiety/depression etc…that is how most docs will figure what to rx you…Did you read the book “Heal Your Headache”? That was my favorite, most enlightening book.
Considering Migraine seems to affect roughly 10% of people in one form or another, you’d think they’d get this stuff sorted!!
yes, I have the “Heal Your Headache” book - it’s good, isn’t it? I totally agree - so many (millions of) people suffer from this migraneous mechanism that you’d think there were more drugs designed to target migraine specifically, rather than using ones designed primarily for another purpose! As I said, I literally don’t know how many MAV meds from the long list were designed from the ground up with migraine in mind - but it can’t be many, right…? Pizotifen is the only one I personally know of…
I think the problem here might be because migraine itself is still a poorly understood condition, so it’s near impossible to come up with a drug that will treat it if you don’t know exactly what’s going on in the brain at a molecular level that is causing the migraines. If someone could work out a definite answer for how exactly a migraine is caused, and then find a drug that would stop this cascade of events, then they would become very rich indeed…
Hi Tony,
Interesting point.
I think the problem here might be because migraine itself is still a poorly understood condition, so it’s near impossible to come up with a drug that will treat it if you don’t know exactly what’s going on in the brain at a molecular level that is causing the migraines. If someone could work out a definite answer for how exactly a migraine is caused, and then find a drug that would stop this cascade of events, then they would become very rich indeed…
Maybe we should all work on this together?
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Hi beechleaf - one thing’s for sure - nobody would have more incentive to find a drug that works than us!! I can just see us all now - dizzily stumbling around in our white lab coats, spilling liquids and knocking over our electron microscopes!!
But you’re right - just based purely on numbers/economics - there’s so many people suffering from this condition that you’d think enough (cash) incentive existed for the big drug companies to research new and specific migraine drugs, rather than keep using ones designed primarily for other purposes (anti-convulsants, anti-depressants, etc)…? Hope you are keeping well (and that the Pizotifen step-down is going OK)?
Hope you are keeping well (and that the Pizotifen step-down is going OK)?
Tony.
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Um, not great actually. Cut them out entirely, and was ok for a few days. Then I started having a few moments with occasional false motion when sitting still, and then I felt a bit like my balance was a bit ‘off’. But then I decided it was perhaps all in my head and I really wanted to stick it out. But then I started getting problems in the car, with it feeling like it was rolling backwards when I stopped at lights, which was a symptom I had months ago but had completely stopped after a while on the meds. And then my normal migraine headaches started increasing again, so I reluctantly started back on it again. The false movement stuff settled back down within a few days, but I’m still suffering with headaches and a general feeling that my balance isn’t right. But before it took weeks to have the full effect, so I expect it will take a while again.
On the other hand, it could be that my condition just waxes and wanes by itself and actually nothing I am taking is helping, I just happened to be in a good spell for a while? I don’t know how it’s possible to be sure? Certainly before I took any medication I seemed to have spells where I had major improvements. It’s all so confusing. I feel like the medication helps, but I still have ups and downs even when taking it all the time.
I see my consultant at the start of May, so I will see what she thinks about my progress.
How are you doing with the topamax? Have you increased it again yet? Any improvement?
Um, not great actually. Cut them out entirely, and was ok for a few days. Then I started having a few moments with occasional false motion when sitting still, and then I felt a bit like my balance was a bit ‘off’. But then I decided it was perhaps all in my head and I really wanted to stick it out. But then I started getting problems in the car, with it feeling like it was rolling backwards when I stopped at lights, which was a symptom I had months ago but had completely stopped after a while on the meds. And then my normal migraine headaches started increasing again, so I reluctantly started back on it again. The false movement stuff settled back down within a few days, but I’m still suffering with headaches and a general feeling that my balance isn’t right.
How are you doing with the topamax? Have you increased it again yet? Any improvement?
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Hi beechleaf,
sorry to hear that the false motion came back, but great that it’s settled down again now that you’re back on the Pizotifen. I know you have doubts, but it does seem to me that the Pizotifen is doing something to keep the false motion at bay…?
I’m not feeling any benefit from the Topamax as yet. I’m still at 50mg per day, and I won’t have been on that dosage for 3 months until the end of this month. I’m still prepared to give it 4 months (end of May) at 50mg before making any decisions to go higher, but boy, this feels like a long trial!! Wishing you well,
