Anyone on Topomax for migraine?
- Thread starter AprilBaby
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elrohwen
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How timely! I just started on it three weeks ago!
It's absolutely worked for me. I was getting headaches every day and taking an excedrin to control them and keep them from turning into full out migraines. It got to the point where the excedrin wasn't getting them to go away anymore (so they were turning into migraines more frequently), and I knew starting a job where I had to look at a computer screen all day would only make things worse, so I finally went to the doctor. I really wanted Prozac, since my mom has been taking it for migraines with huge success, but it seems like only headache specialists are really prescribing SSRIs for headaches and my PCP felt more comfortable starting with Topomax. I do have an appointment with a headache specialist in January, so if this doesn't work long term I'll look into an SSRI then. That could be something else to ask your doctor about.
I started with 25mg per day and was supposed to move up 25mg each week until I reached 100mg. However, I wasn't really having headaches at the 50mg level, so I've stopped there (doctor said this was ok if it worked for me). I hope this level continues to work. I've had some very mild headaches, but they always go away on their own and I haven't felt the need to take any pain meds at all in the 3 weeks I've been on it. It's fantastic! I used to not be able to wear contacts or glasses the entire day because it would give me headaches, but now I'm wearing contacts all day without problems - clearly the problem was the headaches and my sensitivity, not my eyes.
I do get the tingly hands occasionally, mostly in the mornings, or at night right after taking the pills if I don't go to bed immediately. Alcohol seems to make it worse, maybe because it lowers blood pressure. It's been going away the longer I take the pills though. My mom experienced burning in her hands and feet after a few months on Topomax when she tried it, so I'm hoping I don't get that. I also get very tired soon after taking it, but I go to bed right away and I don't feel tired at all the next morning. Luckily I haven't experienced the short term memory loss - that would be bad while starting a new job! Still hoping for some of that weight loss side effect
I wouldn't mind losing 5-10lbs.
Overall, I've been very happy with it. My friend is a pharmacist and she sent me the info she looked up about side effects - I can post it if you'd like. However, most of it is for doses in the 200-400mg range, I think for seizure patients, so it's not that helpful to determine rate of side effects if you're taking a lower dose.
It's absolutely worked for me. I was getting headaches every day and taking an excedrin to control them and keep them from turning into full out migraines. It got to the point where the excedrin wasn't getting them to go away anymore (so they were turning into migraines more frequently), and I knew starting a job where I had to look at a computer screen all day would only make things worse, so I finally went to the doctor. I really wanted Prozac, since my mom has been taking it for migraines with huge success, but it seems like only headache specialists are really prescribing SSRIs for headaches and my PCP felt more comfortable starting with Topomax. I do have an appointment with a headache specialist in January, so if this doesn't work long term I'll look into an SSRI then. That could be something else to ask your doctor about.
I started with 25mg per day and was supposed to move up 25mg each week until I reached 100mg. However, I wasn't really having headaches at the 50mg level, so I've stopped there (doctor said this was ok if it worked for me). I hope this level continues to work. I've had some very mild headaches, but they always go away on their own and I haven't felt the need to take any pain meds at all in the 3 weeks I've been on it. It's fantastic! I used to not be able to wear contacts or glasses the entire day because it would give me headaches, but now I'm wearing contacts all day without problems - clearly the problem was the headaches and my sensitivity, not my eyes.
I do get the tingly hands occasionally, mostly in the mornings, or at night right after taking the pills if I don't go to bed immediately. Alcohol seems to make it worse, maybe because it lowers blood pressure. It's been going away the longer I take the pills though. My mom experienced burning in her hands and feet after a few months on Topomax when she tried it, so I'm hoping I don't get that. I also get very tired soon after taking it, but I go to bed right away and I don't feel tired at all the next morning. Luckily I haven't experienced the short term memory loss - that would be bad while starting a new job! Still hoping for some of that weight loss side effect
I wouldn't mind losing 5-10lbs.Overall, I've been very happy with it. My friend is a pharmacist and she sent me the info she looked up about side effects - I can post it if you'd like. However, most of it is for doses in the 200-400mg range, I think for seizure patients, so it's not that helpful to determine rate of side effects if you're taking a lower dose.
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I am on it, too. It works well, but doesn't completely stop all my headaches. I have to say that it made a major change it my life, though. As for side effects: I get the tingling hands, too. I can never remember my dose. I went from 3 pills to 4. I will have to look it up!
AGBF
AGBF
chiquitapet
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I`m very happy to hear it`s been working well for few of you gals out there. I`m also considering starting topamax. I have been on propranolol as prevention for last couple of years which has worked great for me without any major side effects, but my headaches have been worse in terms of frequency and severity in the last few months. To be honest I am a bit scared starting topamax as I`m generally quite sensitive to medications and can't afford any difficulties with concentration or memory. But the weight loss sure doesn't sound bad.
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chiquitapet said:
I wish I had the luxury of an intact memory! I don't know when I started to lose mine. It may have been when I started a high dose of anti-depressants (an SSRI). It may have been menopause. Topamax may have helped. I feared age might have been involved (see menopause). All I can say is that I know for sure I have not had a TIA or a stroke (another story altogether). I just feel that I lost 30 or 40 points off my IQ and I can never find the word I want, while it used to fly to my mind! This has been going on for about 10 years. Yet I manage to cope. I suspect that any of you will cope, even if Topamax affects your memory! All it does to me (I think) is make it a lot harder for me to retrieve words! Oh! And I should no longer try to join the debating team! I would lose track of all the points I had planned to make, whereas I used to keep them clearly in place in my head. I could probably overcome this obstacle with a piece of paper and a pencil, though!
AGBF
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I am glad to hear good things. I just started it on Monday and Tuesday Diet Coke tasted BLECH! (that was fast!) Tuesday afternoon I got the worst migraine I have had in a while. Today I feel a bit foggy and I am wary of getting a migraine this afternoon. A little tingle in the hands, but not bad. I really want that weight loss thing! Will let you know how it goes! Thanks for the replies!
elrohwen
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Ugh, I just discovered that I can still get a migraine on Topomax! Blech. I spent 4 hours in a room staring a presentation with the lights out. Oh, and my computer on in front of me (though dimmed, which seemed to help). I just can't do the dark room / bright screen thing. It's not a full blown migraine yet, but it's the first real headache I've had since I started the Topomax. Still, one bad headache/migraine in 3 weeks is good for me.
Pandora II
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If you don't get on with Topomax, might be worth trying Lamotrigine - I'm told it can be very good for migraine.
I take it for bipolar disorder and nerve pain and it has almost zero side-effects compared with any of the alternatives - sadly doesn't work for my migraines, but zolmitriptan is great so I just stick to that at the moment.
Oh, no SSRIs ever worked for me sadly...
I take it for bipolar disorder and nerve pain and it has almost zero side-effects compared with any of the alternatives - sadly doesn't work for my migraines, but zolmitriptan is great so I just stick to that at the moment.
Oh, no SSRIs ever worked for me sadly...
aliciagirl
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I've been on Topamax for my migraines for over 2 years. I'm also a pharmacist, if anyone has any questions!
It has helped my migraines immensely! When I was finishing school and starting studying for my board exams, I was getting migraines almost daily - it was unbearable. My doctor put me on Zomig, which helped, but is certainly not something you should be taking daily. Once I started the Topamax, my migraines went from once almost daily to once maybe every 6 months. I still get them occasionally - especially when I'm really stressed. The Topamax caused me to have difficulty finding words for the first probably 6 months - luckily that has passed. I have tingling in my hands and feet on it when I'm not drinking enough water - so if anyone is having that effect, you may want to try lots of water. I can't say that it is related ENTIRELY to the Topamax (because I started the South Beach Diet around the same time) but I lost 25 pounds and kept it off with little effort. I feel like it has decreased my appetite significantly. I had to get used to the taste it gave carbonated drinks and find ones that taste okay on it - I find Sprite Zero and lighter sodas are better than colas.
While it has been my miracle drug, another pharmacist friend of mine happened to be in the rare group of people that gets increased intraocular pressure while taking it - that if it isn't controlled properly could lead to blindness! So as a public service announcement to all taking it, if you notice any blurred vision or eye pain, call your optometrist right away and let him know you're on Topamax.
It has helped my migraines immensely! When I was finishing school and starting studying for my board exams, I was getting migraines almost daily - it was unbearable. My doctor put me on Zomig, which helped, but is certainly not something you should be taking daily. Once I started the Topamax, my migraines went from once almost daily to once maybe every 6 months. I still get them occasionally - especially when I'm really stressed. The Topamax caused me to have difficulty finding words for the first probably 6 months - luckily that has passed. I have tingling in my hands and feet on it when I'm not drinking enough water - so if anyone is having that effect, you may want to try lots of water. I can't say that it is related ENTIRELY to the Topamax (because I started the South Beach Diet around the same time) but I lost 25 pounds and kept it off with little effort. I feel like it has decreased my appetite significantly. I had to get used to the taste it gave carbonated drinks and find ones that taste okay on it - I find Sprite Zero and lighter sodas are better than colas.
While it has been my miracle drug, another pharmacist friend of mine happened to be in the rare group of people that gets increased intraocular pressure while taking it - that if it isn't controlled properly could lead to blindness! So as a public service announcement to all taking it, if you notice any blurred vision or eye pain, call your optometrist right away and let him know you're on Topamax.
elrohwen
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Interesting about the carbonated drinks! I'm not a soda drinker, so maybe I'll have to try one to see if it tastes different. I haven't noticed that food tastes any different, but I have noticed a subtle appetite difference. However, I still tend to put whatever I would normally eat on my plate, then finish it anyway but I find when I do work on eating smaller portions I feel much more full afterwards on that small amount of food than I did before the Topomax.
but I find when I do work on eating smaller portions I feel much more full afterwards on that small amount of food than I did before the Topomax.
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I have been prescribing Topomax for years, for migraine (mostly), bipolar disorder and appetite control in people who have gained weight on other mood stabilizers. Usually, at doses up to 100 mg. the memory loss is not so apparent. At higher doses it may be quite significant (the medication is jokingly called "Dopomax").
I would not recommend Lamotrigine for migraines. More often than not, it may cause a migraine.
Another good medication for migraines is Zonegran - the same group as Topomax, less well known, less memory loss, also an appetite suppressant. Like Topomax, it is a weak mood stabilizer; like Topomax, it has pleasant mood-enhancing effect. Do not take if you are allergic to sulfa drugs.
I would not recommend Lamotrigine for migraines. More often than not, it may cause a migraine.
Another good medication for migraines is Zonegran - the same group as Topomax, less well known, less memory loss, also an appetite suppressant. Like Topomax, it is a weak mood stabilizer; like Topomax, it has pleasant mood-enhancing effect. Do not take if you are allergic to sulfa drugs.
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When your hands get tingly from Topomax, eat a banana. My doctor told me that the drug does something to your potassium and that's what causes the tingly hands. Eating a banana really works to take away the pins and needles feeling.
Gailey
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No, never taken Topomax, but have taken Zomig for years. About 18 months ago I was finding it was less and less effective and coupled with that it left me feeling very lethargic, so I still lost a lot of time at work. Being self employed means I don't get paid when I don't work.
I started having botox shots and although not a rapid improvement, it has helped enormously. I don't know what the long term side effects are of having these shots every 3 months, but I sure as heck function a lot better. I still get the headaches, but I find they are far less frequent and much less intense. Doesn't help that I seem to live in the Migraine capital of the world, but I am moving to Ontario by the end of the year, so we will see if a more even pressure helps.
I started having botox shots and although not a rapid improvement, it has helped enormously. I don't know what the long term side effects are of having these shots every 3 months, but I sure as heck function a lot better. I still get the headaches, but I find they are far less frequent and much less intense. Doesn't help that I seem to live in the Migraine capital of the world, but I am moving to Ontario by the end of the year, so we will see if a more even pressure helps.
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So far I am now on 25 in the morning and 25 at night, no migraine, but slight headache during the day..more like pressure. Could be allergy. No tingle, but when I close my eyes I feel like I would describe what I imagine LSD tripping would be like...kinda weirded out and spacey, like everything is racing and I can't quite catch anything, so I am not sleeping too well. I am definitely not eating much. What does the Dr or the Pharmacist think?
elrohwen
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Have you tried taking both pills at night? My doctor recommend only taking them before bed, as some of those effects will wear off by morning. I find my mental abilities go downhill quickly after taking it (if I'm reading before bed, i get sleepy and have trouble concentrating), but by the time i wake up in the morning I feel refreshed.
aliciagirl
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April - That is very much what I felt like for my first couple of weeks! While I think taking them at night would probably help, I wouldn't recommend changing your dosing without running it by your MD. I would give it at least a few days, maybe a week (unless it is unbearable) to see if that effect wears off at all. I know that for me, it started to wear off around week 2 or 3. They say in the literature for the drug that you don't begin to see cognitive effects until doses around 200 mg - well, as someone who's been there - I think they're full of it!! 
If it is really intolerable or annoying, you may want to let your doctor know right away and look into an alternative - there are too many options out there to be miserable. Good luck!
If it is really intolerable or annoying, you may want to let your doctor know right away and look into an alternative - there are too many options out there to be miserable. Good luck!
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Thanks! I am doing the dosing exactly as prescribed and I won't go up to 75 unless I see him again. My bigger problem is when I go to sleep, not when I am awake. I feel all weird when I close my eyes and try to sleep, so I am not sure if I take 50 at night will make it worse. My RX says 25 morning/25 night. I know it will take a few weeks to work it all out and I am TOTALLY committed to making it work. THANKS for the encouragement!
Lynn B
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As a migraine sufferer for YEARS, I will be watching this thread closely!
I was resistant for YEARS to take something daily as a migraine prophylactic. Somewhat irrational, no doubt, but how I felt. Anyway, i had another (headache) work-up a few months ago with a neurologist I really respect. He convinced me to start Elavil at night, which I have (25mg, a baby dose!) and OH, the difference is amazing! I am SLEEPING WELL AT NIGHT for the first time in YEARS! Wake up feeling so much better, so refreshed! (My doctor says many migraineurs have lousy sleep, I know I sure did). Anyway, I am a convert -- I looooooove the Elavil!!! The only thing I am NOT loving is the few extra pounds I've picked up, and I think it's the Elavil. MD said not real common at such a low dose, but not impossible either.
ANYWAY, with all that in mind, I may switch and try Topamax. I hear possible side effects may actually be weight LOSS. That'd be nice!!
I was resistant for YEARS to take something daily as a migraine prophylactic. Somewhat irrational, no doubt, but how I felt. Anyway, i had another (headache) work-up a few months ago with a neurologist I really respect. He convinced me to start Elavil at night, which I have (25mg, a baby dose!) and OH, the difference is amazing! I am SLEEPING WELL AT NIGHT for the first time in YEARS! Wake up feeling so much better, so refreshed! (My doctor says many migraineurs have lousy sleep, I know I sure did). Anyway, I am a convert -- I looooooove the Elavil!!! The only thing I am NOT loving is the few extra pounds I've picked up, and I think it's the Elavil. MD said not real common at such a low dose, but not impossible either.
ANYWAY, with all that in mind, I may switch and try Topamax. I hear possible side effects may actually be weight LOSS. That'd be nice!!
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