Topamax for migraines

B

brainsgirl

Active Member
Does any one have any experience with taking this drug to prevent migraines? I got a sample from my dr. yesterday, but after researching it on the internet, I'm kind of afraid to take it! Very few good reports...mostly bad side effects...hair loss, being "out of it", not feeling like your self. I've never really given so much thought to taking a RX, but the fact that it works by affecting your brain scares me. Mindi
 
My DH, who is also an MD, takes Topamax for migraine headaches and has never had a problem with it. You have to take what you read on the internet with a grain of salt. If you have concerns you should address them with your doctor -- that's what s/he is there for! You could also talk to your pharmacist. As for the side effects -- all meds have them, even Tylenol. The good news is, side effects from Topamax, if you have any, are completely reversible, so if you experience anything untoward simply stop taking it. I hope you get relief from your migraines. I know how horrible they can be.

ETA that you might want to try and figure out what triggers your migraines. Often you can avoid them all together by eliminating the triggers, like certain foods and aromas (perfumes give me migraines without fail, as does cigarette smoke). Have you been evaluated by a neurologist?
 
My mother has taken every migraine medicine on the planet, including antiseizure and antidepressent meds that people have reported helped with their migraines. Topomax did not cause her to lose any hair, but it definitely made her feel spacey and not herself. It was severe enough to stop taking it, and the symptoms went away quickly. She would be the first one to tell you to go ahead and give it a try (cause what if it gets rid of your migraines!), and keep an eye out for any unpleasantness. Like the above poster pointed out, it's not permanent.

HTH!

Kelly

ETA: My mother found the book "Heal Your Headaches" very eye-opening as far as figuring out triggers. MSG, chocolate, and aged cheeses turned out to be pretty significant for her, as well as those she already knew of, like strong smells and (sadly) aerobic exercise.
 
Michele, you have set my mind at ease knowing that your husband takes Topamax. My dr. duggested that I remain at the starting dose of 25 mg. for 2 weeks before moving up to 50 mg. taken as one dose in the evening. Can I ask how much your husband takes? has he not had any side effects? How long has he been on it? I am comcerned with what I have read about getting off of it if you have adverse effects. if I'm only taking 25 mg. (the lowest dose) , how am I expcected to wean myself off of it? Somehting else to discuss with my doctor.

I do know some of my triggers....choc. when eaten with peanuts, too much peanut butter, aged cheeses, alcohol, cigarette smoke, and too much caffieine. I limit all of these things if not stay completely away from them. Then there are the menstrual migraines...and not a lot helps those!
I have never been to a neurologist, but will definately consider it if Topamax doesn't work out. Mindi
 
my mom has severe headaches from blood pressure medacine she takes. could this natural supplement help her?

laura
 
Hi Mindi,

I've just recently started taking Topamax for migraines. My neurologist started me on 25mg twice a day for - I think - 2 weeks and then bumped me to 100mg. I did feel kind of funny (spacey) but I wasn't sure if it was the Topamax or just imagined since I had read about it so I asked if I could take the entire dose at night (I wondered if it was just b/c it was making me tired) and he said yes. Once I started doing that I was totally fine. And I've actually been sleeping better than I have in years. :) The only side effect I've noticed is that I have a lot of tingling but I read that I might have that side effect and I've talked to my doctor so he's aware. He's been seeing me every few weeks as he gets me going on this stuff. I actually get really tingly when I'm working out - in my fingers especially and in my toes. It's very strange. :) I think I've been on it for about a month or 6 weeks. He told me it would be 6-8 more weeks before it would start to work. Unfortunately I have not seen any weight loss with it (darn!) but I have experienced "nothing sounds good anymore" as far as what to eat and I also seem to feel kind of sick to my stomach when I eat very much so I am eating less so I guess if that continues I may experience some weight loss. As for hair loss, I have a ton of hair, so I probably wouldn't notice.

My neurologist says they've had great success with this drug. I inherited migraines from my dad. I also have triggers like caffeine, but I can't track mine to many other things. So I'm keeping my fingers crossed that Topamax will work. I hope the same for you! Keep me posted. Feel free to e-mail me or PM me as I'd love to hear if it works for you. Good luck!

Suz

"Until one has loved an animal, a part of one's soul remains unawakened." - Anatole France

http://www.picturetrail.com/dogs2birds
 
Hey Michele!

Did your DH experience any weight loss? That was the ONE side effect I really wanted. :p I wonder if working out so much just makes us too hungry. You know, all that cardio. Oh wait, you do know cardio, don't you? I heard through the grapevine that you discovered Cardio Coach and that you actually LIKE cardio now? What's that all about??? I LOVE Cardio Coach! :)

I'm comforted to know that your DH takes Topamax, being an MD. Obviously they know more about drugs than us average Joes do so if he's willing to try it that's a good thing.

Suz

"Until one has loved an animal, a part of one's soul remains unawakened." - Anatole France

http://www.picturetrail.com/dogs2birds
 
Have you ever had your thyroid checked? If your thyroid is off, it could be a reason why you are getting migraines. My cousin always had horrible migraines. She had her thyroid checked (problems run in the family) and hers was off the chart bad. Your levels should be around 3.0, but each persons "comfort zone" is different. Hers was 8.8. She was having alot of other symptoms as well and her family physican said that her numbers were o-kay. My cousin said there is something wrong and went to see an Endocrinologist and he said her numbers were so bad that she would soon start to loose her hair. She since has gotten it regulated, her migraines have subsided almost completely. Just a thought.

Kim
 
My DH takes Topamax not for migraines, but for chronic pain issues with his back. He initially experiences weight loss, but it was only temporary. He's never had any issues with hair loss or spacey-ness!!!

DH's best friend's girlfriend was also recently changed from Lyrica to Topamax, but she's just started, so I don't think that she's had any issues with it yet.
 
Kim, thanks for the thought. I do have hypothyroidism and take synthroid for it. After being diagnosed in '99 (with hypo.), my migraines never changed one way or another. Mindi
 
Mindi-
I have migraines too and think Michele and others have given you good advice.

Awhile back, I took Topamax and found it helpful. I have tried a lot of other medicine too: Imitrex, Frova, the whole gamut of that type.

Ultimately, I have had a lot of good luck managing triggers through food & diet. But if that stops working, Topamax is something I'd consider going back on. I do take Imitrex now once inwhile but if that stops working and I need a medicine on board daily, I thought Topamax was good. I didn't have hair loss. My appetite went down--I stayed on a very low dose and it helped headaches!

The food triggers you mention are also ones for me: nuts, aged cheese, red wine--less so chocolate. I also found a good effect from cutting out dairy.

I also think headaches, even if occurring regulary, can be different, e.g. the way to manage the "cyclical" menstrual migraine might be different (more stubborn) than others.

Good luck!!
-Barb
:)
 
Hi. I used this medication for 6 months. I found that it didn't really prevent my migraines and it caused my toes to feel like they were being shocked throughout the day and night. But, everybody is different and you may want to try it for yourself. Best wishes!

Michelle
 
Mindi--
unfortunately I cannot remember what that low dose was....it was about 4-5 years ago. I'm sure I was never taking more than the lowest starting dose. I am very sensitive to medication in general. It helped my headaches, but...........

I stopped for 2 reasons:
--because I felt a little foggy on it with my short-term memory (not an area of super strength for me anyway)
---and also, I was having some difficulty with my HR spiking during workouts. It did elevate my HR by about 10-15 bpm. The dr. I was seeing thought I should stay on it, but I wasn't comfortable with being in an anaerobic range for me while doing what should have been a steady state workout. (This is just my body and one person's experience. It's not something I've heard a lot about)

This said, though, I would still try it again if my homeopathic measures I'm trying now with diet and exercise fail. I work really hard, maybe too hard, at getting triggers under control prophylactically (sp??)

But Migraines are really not livable especially when they happen frequently. There is so much time lost from life.
And there's only so much home-management a person can do without driving themselves crazy over. If I get a bad headache, now, like I did last weekend, I'm taking Imitrex or Frova (which I like a bit better, less sedating.)

So if your doc is recommending it, and you're up for trying it, I'd say give it a go. That's really the only way to know if it might work for you.

You can simultaneously work on other strategies -- observing food triggers, sleep, light, etc. and see if it helps.

Good luck!!

Barb:)
 
I suffer from very frequent, very debilitating migraines, too. Like, ridiculously frequently (usually 3-4 times per week at a minimum). I kept a journal for 6 months, and I determined my triggers are: lack of sleep, stress, periods, and cigarette smoke (obviously not a lot I can do about most of those). My doctors have been trying to find a prophylactic migraine treatment for me, and I've gone thru everything from calcium channel blockers to beta blockers to antidepressants with no relief... lucky me. At least the abortive medications (stuff you take to STOP the migraine once it's already started) work really well for me... I take Zomig and Maxalt. But again, I have to take them nearly daily.

My word of caution on Topamax (topamirate): it's been known to cause unintended pregnancy if you're on oral birth control. I can't remember why exactly, but something about the medication interferes with the pill, so if this is an area of concern for you, be very careful. For me, that was a big enough red flag for me to stop taking it. That, and the "dazes" and the violent carsickness (I have a 3-hour roundtrip commute daily). Anyway... good luck. I hope it works for you if you decide to take it!

Megan
 
I have been on Topomax for migraines for almost two years now. At first, I had the same comcerns after reading the information on the internet, especially the part about not being able to sweat since I work out so hard every morning. However, I could not be more pleased with the results, and have had no side effects other than the initial getting used to the tiredness (which goes away after the first 4 weeks). My neurologist keeps telling me that I should be the poster child for Topomax. I hope this helps. Good luck!
 
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