Topamax?

briislovely

Is anyone taking topamax for migraines? Do you have side effects? I just started taking it today.

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youngmomtaz

I have been offered topamax as well. I am still debating as I don't like the potential side effects but it is kind of my last option. So I will follow along.

briislovely

Same here @youndmomtaz they make me sick and light headed so I'm willing to try anything at this point

JessicaJS23

I took it for about 2 months but it wasn't prescribed to me for migraines.
The weirdest side effect I got was nothing tasted right. Anything carbonated tasted like metal.
I also noticed a lot of hair falling out. When I googled it there were quite a few complaints about that in particular.

Shells918

I've been taking topamax for 10 years for migraines. It literally changed my life as far as getting rid of my almost daily headaches.

But, yes, there were side effects. They kind of suck. But for me, the ends justified the means, and they went away over time.

1. I felt very dopey. The medication's nickname is dopamax for a reason. You will notice it most on the days you increase your dosages. I highly recommend you do this on a Friday night if you're off Saturday and Sunday so you don't need to be fully functional for work. Words will be on the tip of your tongue but you can't get to them.
2. Things taste different like @JessicaJS23 said.
3. You will probably drop some weight. I lost about 20 pounds without even trying.
4. You will lose short term memory. But it comes back. I write everything down.

I took this for 10 years. It just stopped helping. I feel so lucky that I was able to go so long without migraines on a regular basis.

I just got Botox for the first time this month and still getting migraines.

JessicaJS23

Shells918 wrote: »

I've been taking topamax for 10 years for migraines. It literally changed my life as far as getting rid of my almost daily headaches.

But, yes, there were side effects. They kind of suck. But for me, the ends justified the means, and they went away over time.

1. I felt very dopey. The medication's nickname is dopamax for a reason. You will notice it most on the days you increase your dosages. I highly recommend you do this on a Friday night if you're off Saturday and Sunday so you don't need to be fully functional for work. Words will be on the tip of your tongue but you can't get to them.
2. Things taste different like @JessicaJS23 said.
3. You will probably drop some weight. I lost about 20 pounds without even trying.
4. You will lose short term memory. But it comes back. I write everything down.

I took this for 10 years. It just stopped helping. I feel so lucky that I was able to go so long without migraines on a regular basis.

I just got Botox for the first time this month and still getting migraines.

: ( I hope you can find another option to help you. I've only had a few in my life but my best friend suffers with them like you do and I feel so bad for anyone who has to constantly go through that.

Nikkomagic

I took it for several years for seizures, so I was taking a much higher dosage than most migraine suffers would be prescribed. Everything that Shells918 and JessicaJS23 said are absolutly true. I felt as if my head was in a metal tube or a floaty balloon, I couldn't focus, my appetite disappered because food tasted so drastically different, hairloss, OMG the hairloss... I developed an almost constant tingly sensations in my hand and legs. Medication blood levels will need to be checked regularly to make sure it stays within safe levels (but thats only if you are taking a dosage over 100 mg daily). But the good news is once I stopped taking it everything got better but the hairloss.

rps67

I've had migraines for almost 25 years and I use Imitrex when I get a headache. I tried Topomax several years ago and it didn't work for me. I had the tingling in my fingers and my migraine frequency wasn't decreased. I stopped taking it, but have talked to other people that it worked great for. If migraines make you miserable, I think it's worth a try and then stop taking it if it doesn't help.

JessicaJS23

Nikkomagic wrote: »

I took it for several years for seizures, so I was taking a much higher dosage than most migraine suffers would be prescribed. Everything that Shells918 and JessicaJS23 said are absolutly true. I felt as if my head was in a metal tube or a floaty balloon, I couldn't focus, my appetite disappered because food tasted so drastically different, hairloss, OMG the hairloss... I developed an almost constant tingly sensations in my hand and legs. Medication blood levels will need to be checked regularly to make sure it stays within safe levels (but thats only if you are taking a dosage over 100 mg daily). But the good news is once I stopped taking it everything got better but the hairloss.

Yes ... The hair coming out by the handfuls in the shower freaked me out so bad I told my doctor I couldn't take it anymore.
It was a weight loss doctor who prescribed it to take along with phentermine. I guess it was supposed to level off the effects of the phen? Everything has the opposite effect on me.. I was so so sleepy on the phentermine he said that the topomax would help with that if I remember correctly. Luckily I didn't have to depend on it for daily function like some people: (

Lucy1752

rps67 wrote: »

I've had migraines for almost 25 years and I use Imitrex when I get a headache. I tried Topomax several years ago and it didn't work for me. I had the tingling in my fingers and my migraine frequency wasn't decreased. I stopped taking it, but have talked to other people that it worked great for.

Exact same experience. I still use Imitrex.

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cortezgetsfit

I took topamax for over 3 years. It is super hard on your body and I had to stop. The main things that happened were: dramatic weight loss, food tasted like metal, my hair fell out..I mean handfuls at a time, my kidneys eventually started to shut down. I now have to take kidney support for the rest of my life. This drug is super dangerous and I would never take it again. Oh I also had pins and needles and became super dumb. I'm a teacher and literally battled to explain stuff to my 3rd graders.

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usmcmp

cortezgetsfit wrote: »

I took topamax for over 3 years. It is super hard on your body and I had to stop. The main things that happened were: dramatic weight loss, food tasted like metal, my hair fell out..I mean handfuls at a time, my kidneys eventually started to shut down. I now have to take kidney support for the rest of my life. This drug is super dangerous and I would never take it again. Oh I also had pins and needles and became super dumb. I'm a teacher and literally battled to explain stuff to my 3rd graders.

That's interesting. I was on it for over 3 years and didn't experience any of that. Maybe your dose was super high? I tend to be very sensitive to medications, but never had a problem with Topamax.

Shells918

Forgot about the tingling. Still get a tiny bit of that. Hair didn't fall out though.
My kidney functions were fine till last year till they got messed up from another drug last year.

GreenGoddess22

Yes, I was prescribed it for migraines, but I had to stop after a few weeks. For me, the memory loss was the worst. I knew what I wanted to say but I just couldn't get the words out. That was scary! I also was extremely tired and nauseous. I ended up on some different meds, Relpax is the only name I can remember though. I started doing yoga and getting deep tissue massage in my neck/shoulder/head area and it's helped a great deal!

KarlyPPW

Topamax is no joke and I'm shocked that it is being prescribed along with phen purely for weight loss. I take it for migraines but had to stop taking it for a while because of pregnancy/breastfeeding. It is very important that you be on very reliable birth control because of risk of birth defects (cleft palate). For my migraines it is a miracle drug and worth every side effect I experience. I've gone from 4-5 complete monster migraines a week that would send your average Joe to the ER... to having maybe two a month.

I experience a lot of the above - soda tastes vile, tingling in hands and feet, hard time recalling words sometimes, dropped a significant amount of weight especially in the first weeks (that taperered off) and some intense nausea. Oddly enough I think I do still get migraines from time to time but without the headache. For me it is a miracle and I would take all the side effects over how bad my migraines were. There are years of my life I can't get back because I was in bed or on the bathroom floor being sick. That said... it's not without effects and consequences and not everybody can handle them.

megemrj

I took it for a very short period of time my senior senr of college. I had stress migraines very frequently. My Dr prescribed it and very shortly after my 3.8 GPA began to plummet!

I would read the same paragraph over & over and not recall what I had just read...in every subject in my major!! I quit soon after and slowly recovered. Overall my GPA didn't suffer too badly as I was aware and quickly stopped it but man was it rough making up those awful grades.

I had the tingling sensation but no weight loss.

youngmomtaz

I think if my current doc pushes for a trial again I will go for it. The only side effect that I feel will really hurt is the hair loss. The others seem like something I can manage(or at least attempt to live with) but I am scared to lose any more hair. I am already so very thin due to hypothyroid. But 2-3 severe migraines a week is life draining. Much of what I read says that other symptoms should diminish over time while on low doses and my doc stated that we would start low and not go above 50mg/day specifically because of side effects. Thank you everyone for your experiences.

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youngmomtaz

When I spend 2-3 days a week in severe pain or in recovery from a migraine, I am missing work, family time, friend and community commitments and all of that is a problem. For the past 13 years I have basically been a hermit. Work, sleep, attempt to workout, eat. Repeat. My kids are so used to it I think they think it is normal for mothers to get home from work or wake up Saturday morning and tell their kids "there is leftovers in the fridge, fend for yourself, don't kill each other, I don't care how much screen time you get, just please let me sleep". How is that good for any family?? At this point I will try a low dose of absolutely anything to help control them. Believe it or not cutting out gluten has actually reduced my frequency, but even once a week would be too much as far as I am concerned.

cowgoo

Took 400mg for six years. First side effect was tingling in my hands but that went away. Overtime my memory became fuzzy and I thought more slowly. Been off of it for 3 weeks no complaints and will never go on it again. Read a book... can't remember the author but she's a scientist. Been trying her method of 1:2 ratio of sodium: potassium, it really helps. I drink a lot of Propel now. Also take Pentadolex, I won't ever stop taking it because it has helped significantly. Lmk if you have any interest in the book I mentioned. I'll look up the info...game changer.

briislovely

Thanks for all the replies! I'm taking it for a month and then going back to the doctor to see how things are going. Of course if I have any of these side effects I definitely won't continue taking it and hopefully I can find something else!
I go to school at night and it's an hour away from where I live so it's the worst when I get them while I am at school. Trying to drive home while feeling light headed and like I'm going to throw up is horrible

active_niki

The only side effect that I had was weight loss but didn't help with my migraines at all!

lisciousg24

I've been on Topamax for at least 5 years now. It definitely decreased my migraines. Taste definitely changes in the beginning. However, I didn't lose hair like others.
I'd say give it a shot. If you feel it's not working for you, talk to your doctor, I'm sure they'll prescribe you something different

briislovely

Seems like everyone's dosage is higher then mine is, atleast right now. I am only taking 50mg before bed and 50mg when I get up.

lisciousg24

I started on 50mg
Then have maintained on 100mg each night