Does anyone take Topamax for migraines?

Babs0512 · Dec 5, 2008

I just took my first dose of Topamax for headaches and I am really nervous. Do you really feel "stupid"? I feel like I have a lot of trouble concentrating and trouble word finding because my head is pounding all day every day. Are the side effects worth it? This is the only side effect I am truly concerned about. Help please

Yep, very common feelings with Topamax. For some people, the feeling goes away as they become use to it. For me, I couldn't put a coherent sentence together - and I never got use to it. So I stopped taking it.

Good luck

Faith2012, ASN, BSN, RN · Dec 7, 2011

I know im late, but topamax gave me insominia. So it didnt work. I didnt find that it helped me much though. I still had headaches i just couldnt sleep. My doctor switched me/

xtxrn, ASN, RN · Dec 7, 2011

Made me brain dead.... neighbor said I couldn't put two words together...wasn't sure how I got to the store without driving off the road. After I got off of it, I was amazed at how "dulled" I'd been....

Imafloat, BSN, RN · Dec 7, 2011

I was on it for migraines. It stopped the migraines, but I had to go off of it. My side effects were that I felt like I was starving all the time, numb/tingling hands and feet, mental dullness, and I couldn't find all of my words when I needed them. At that time I was in the NICU and I was so stupid I had to go off. I admitted a baby with an imperforate orifice and the resident was talking about the potential level of the defect, yammering on and on with nary a breath. I looked at my student and said, I have no idea what the heck she is talking about, do you? I had to go to the resident and ask for an explanation. That was when I decided that I needed to go off, because honestly, imperforate orificees are a dime a dozen in the NICU and I should have totally known what that doc was talking about. It was a glimpse to me of what the parent experience must feel like when we bombard them with all that information.

diva rn, BSN, RN · Dec 7, 2011

I LOVE my Topamax...I have been on 100 mg for about 9 months...I do have occasional problems with word retrieval...but I was starting with that anyway before the Topa...:)...it doesn't affect my sleep, in fact, I think I sleep better when I take it at night.

The main side effect I love...is the fact that it has literally cured my "binge eating"....in the last 7 months I have lost 35 lbs...without dieting...I mean without dieting....I am just not stuffing my face anymore..no urges....what. so. ever. I am stablizing to a more normal weight (I still have about 30 to go) they are using it in clinical trial now for the purpose of weight loss.

They will have to pry the bottle of Topamax from my cold dead fingers...I am never coming off of this stuff...

Flare, ASN, BSN · Dec 7, 2011

I declined the topamax a few years ago for head aches. I was on Nortriptyline for quite a while and it helped a lot, but i developed a tremor from it and we3nt off on my neuro's fear that it would be permanent. (It does bear saying that the tremor is apparently a really rare side effect).

The headaches never totally went away and I have just been taking nothing for years. Lately it's been getting to me again - i'm thinking that it may be time to try the topamax.

klone, MSN, RN · Jan 12, 2012

I LOVE my Topamax...I have been on 100 mg for about 9 months...I do have occasional problems with word retrieval...but I was starting with that anyway before the Topa...:)...it doesn't affect my sleep, in fact, I think I sleep better when I take it at night.
The main side effect I love...is the fact that it has literally cured my "binge eating"....in the last 7 months I have lost 35 lbs...without dieting...I mean without dieting....I am just not stuffing my face anymore..no urges....what. so. ever. I am stablizing to a more normal weight (I still have about 30 to go) they are using it in clinical trial now for the purpose of weight loss.
They will have to pry the bottle of Topamax from my cold dead fingers...I am never coming off of this stuff...

I just saw this thread and thought I would give my $.02. My experience has been a lot like yours. I started taking it a little over a month ago as a last ditch effort for extreme lower back/sciatic pain for L5/S1 herniation. After this, it was discectomy. I had exhausted pretty much all other options, so my doc was willing to try this. I was taking about 3600 mg of Motrin a day in order to be able to function (not well, but to not curl up into a quivering ball of tears on the bed on a daily basis). Within about 2 weeks of starting the Topamax, I had gone from 3600mg/day to 1200mg/day of Motrin. Now, I take about 800 mg/day of motrin for mild breakthrough pain at the herniation site, and my sciatic pain is completely and totally gone. And all binge eating I've done is also gone.

What has also disappeared is my taste for alcohol, and I've stopped my Diet Coke habit cold turkey as well. My relationship with food has completely changed from being an emotional eater to someone who eats simply because my body tells me I'm hungry. I choose foods that are healthy and low in fat, not because "ooh, that looks really yummy and I'm craving something tasty and fattening!" Seriously, my whole attitude about food and eating has completely changed, literally overnight, because of the Topamax. This medication has totally changed my life. They're doing a lot of research on it with people with drug and alcohol addictions, because they believe it does something to the pleasure and addiction centers of the brain. It somehow just flips a switch on the craving centers. And that's exactly how I would describe it. One day I just woke up and...flip! No more interest in alcohol. No more interest in diet coke. No more interest in fattening foods. I eat because I'm hungry. I choose foods based on my intellectual understanding of what my body needs. I've lost 15 lbs in about a month (I've gone from 167 to 152) and I'm continuing to lose at about 2 lbs a week. With absolutely no cravings, no thoughts of "cheating" and no interest in sweets, fatty foods, junk foods, nothing. I have to actually make a conscious effort to make sure I'm taking in enough calories in a day.

And my sciatica is completely and totally gone. Side effects are occasional finger and toes tingling, which is really only there when I haven't had enough water (have to make sure I'm drinking at least 75 oz/day). And about once a week I'll have a "topamax moment" where my brain will just shut down and I can't do a basic math problem, such as trying to count out $.43 in change. Yes, that happened at Target the other day. it's like the synapses misfire or something. It's a small price to pay. As the previous poster said, they will pry the Topamax out of my cold dead fingers. It's truly changed my quality of life.

Trekfan · Jan 12, 2012

I was on it for years and filney got off it ,it is the worst stuff it the world, the drug causes sleep driving and forgetfulness . Back when I drove at a dose of 200 mg i think I would forget where I worked ,where I lived , i would start out to work and (wake up ) on some road. The two big ones that stand out to this day was one afternoon I left work made a left turn and I to this day do not remeder want happen two hours later I was standing in a gas station and had no idea how I got there or where I was . I had to go ask man at the counter to call my friend to come get me so I could flow her home and the kicker is I had to have driven there . The next time it happen I remember watching tv and the next thing I was standing in the grouse store again I had no idea how I got there .I had to go up to the front and ask the guys to go look for 1 of 3 cars I had keys for in my bag and must have driven there it took then an hour to find a matching car. With I filney went off it it was bad it makes you have nightmare that you are being killed if you try to stop it I tried 4 times (ps you do not dream when you take it ) I also thought my co-works where ploting to kill me . I will never use it again .

klone, MSN, RN · Jan 12, 2012

(ps you do not dream when you take it ) .

I dream all the time. Everyone's experience is different. Sorry you had such a bad one.

RNKPCE · Jan 12, 2012

My teenager was on it for a short while. We figured out quickly why it has the nickname of "dopamax". Beside the hand tingling she was an emotional wreck, crying all the time, very off. Once we realized it was the new med we quickly went back to her neurologist who put her back on elavil. She was on that for about 2 years and eventually weaned herself off with doctors permission. Her migraines were atypical, more like chronic daily headaches. Not high level pain like typical migraines but daily low level headaches starting around puberty.

tothepointeLVN, LVN · Jan 12, 2012

Yup it makes you like a supermodel. Thin, Stupid and Overly emotional. But man was the weight loss effects worth the stupidity and tingling or what.

Oh I definitely dreamed on topamax unfortunately my dreams were ones I woke up crying from

KelRN215, BSN, RN · Jan 12, 2012

I took Topamax for just over a year. I developed a rather severe and rare side effect from it- Renal Tubular Acidosis. My potassium dropped from a baseline of 3.8-4.3 to 3.1. On 60 mEq KCl/day, my K+ level was only 3.5 and my CO2 was down to 19 from a baseline of 24+. I spent 10 months telling all my doctors, "it's the Topamax causing this" and no one believed me... until I found a Nephrologist with half a brain who confirmed the diagnosis and suggested I stop taking the Topamax and potassium supplements. Within a week, my CO2 was up to 25 and my K+ was back in the 4 range (higher than it had ever been on K+ supps while taking Topamax). There was no denying the Topamax was the problem at that point.

Topamax worked for my headaches but Renal Tubular Acidosis is difficult to treat and can cause long-term kidney and bone problems. I'll choose headaches over chronic kidney disease and osteoporosis any day.