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Need advice – prescribed Trokendi RX

  • By tammay

    Hi,
    I wrote here not long ago that I started seeking treatment for my menstrual migraines. I went about a month ago to a clinic (for sinus infection) and mentioned my menstrual migraines and the doctor there suggested I try naproxin 500 mg. This weekend I had my usual menstrual migraine and took the naproxin but it didn’t really help (just moved the migraine to a different place in my head) and it also caused me extreme nausea.

    This morning, I went to the PCP I was assigned to (first visit) and he gave me samples of Trokendi RX and said I should take it about 2-3 days before I know the migraine will hit and we can see if it helps prevent them.

    I’ve been doing research on Trokendi and to be honest, I’m terrified to death. Other than migraines, I have never had any health issues (I’m the kind of person who goes to the doctor once every 2-3 years for the flu or sinus infection). I’m reading up on the Trokendi all kinds of stuff that is just not sitting well with me. I’m concerned because I also read in a lot of places that topiramate is mostly used for prevention if you have 6 or more migraines episodes a month. I am relatively lucky in that I have 1-2 a month (and if I have the other one, it’s usually a mild migraine that goes away with 1 or 2 Advil). I’m not sure that a prevention med is the way to go and the side effects just terrify me. When a drug has “make sure to tell your doctor if you’ve ever contemplated suicide” as a warning, that doesn’t make me feel all that great.

    I know I’m very lucky in that I have only one big episode a month (though it’s a killer) and that my migraines are very predictable in terms of when they happen and how they will go. But I feel like I need something that’s a little gentler (like the naproxin-type thing) that will help stop the migraine when it begins. I’m not sure what course I can take or what drug I might suggest to the doctor (if he’s open to prescribing it to me at all).

    Any suggestions? I don’t want to sound as if I think I know more than the doctor. But I also know my body and I know what I’m comfortable with.

    I’m also wondering if it’s better to see a neurologist or a specialist that might know more about how to treat menstrual migraines, since they’re specific types of migraines (and, just my luck , supposedly the hardest to treat). Should I ask the PCP for a referral?

    Thank you for your help.

    Tam

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  • By PeterMarwood

    Hi Tam,

    I’ve been on Trokendi RX for several years now. I would get up to one migraine a day, and the Trokendi was bringing it down to one or two a month, sometimes less. Now I am getting maybe one a month, or every other as I am getting Botox.

    As to the side effects, I haven’t noticed anything dramatic. I am probably more forgetful than I was, and not as sharp, but I have still been promoted to a Director of Operations position in that time, and been accepted into a graduate degree program. In terms of mental health side effects, I haven’t noticed any, and I do have a personal and family history of mental health issues.

    I think that there is tendency for people to report the worst on drug side effects because of personal bad experiences, and not report the good outcomes.

    Having said all of that, if you don’t have significant issues I wonder why you would need prophylaxis. There is a new class of migraine prophylaxis out that my neurologist is interested in trying on me just because he doesn’t want me on Trokendi any longer than necessary. I agree with your suggestion that you should get a specialist referral. What could it hurt?

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  • By Nancy Harris Bonk Moderator

    Hi Tam,

    Thank you for the update. I can tell you when we have four or more severe migraine attacks a month it’s time to discuss migraine prevention with the doctor.

    Trokendi is designed to be taken on a daily basis for migraine prevention. I’ve not heard it being prescribed as suggested by your doctor.

    I’m not sure if I mentioned this before, but Frova, a triptan, has been shown to help with menstrual migraine: https://migraine.com/blog/short-term-option-for-migraine-prevention-frova/. If it were me, and I had 2-3 migraine attacks a month, I would start Frova rather that Trokendi.

    Let me know what you think.
    Nancy

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