Question for those on topamax for migraines

[luvwinnie]

Have you had to keep increasing the dosage? I've gone from 50 to 75 and now 100. Started 100 last night And I am SO groggy. Had to sleep quite a bit today. I'm told I'll adjust, but I hope I can even work on Monday. Migraines are so frustrating.

 

[IheartMickey]

Yup, I ended up all the way up to 400mg. The tingling hands and feet were a killer.

 

[chellt]

Hated it. Slowly worked my way up and it didn't work that well. And the side effects were AWFUL! I hope you find something that works for you. Headaches stink!

 

[Nola Girl]

I take 100mg every morning and 125mg every evening. I recently increased to the 125mg in the evening and have noticed increased word recall problems. I had this problem when I first started topamax but it eventually worked itself out. I also could not drink carbonated drinks, they tasted strange. This too eventually went away. I am hoping over time the word recall will work itself out again as I would like to increase to 125 in the morning as well. I am still getting way too many migraines. On a different note I LOVE the weight loss side effect. I have to say I have never really had weight issues but on our last Disney trip after watching everything I ate, my sister was furious and said she was going home to demand her doctor put her on topamax. Apparently it really does affect weight.

 

[mfd25wife]

I take 100mg every morning and 125mg every evening. I recently increased to the 125mg in the evening and have noticed increased word recall problems. I had this problem when I first started topamax but it eventually worked itself out. I also could not drink carbonated drinks, they tasted strange. This too eventually went away. I am hoping over time the word recall will work itself out again as I would like to increase to 125 in the morning as well. I am still getting way too many migraines. On a different note I LOVE the weight loss side effect. I have to say I have never really had weight issues but on our last Disney trip after watching everything I ate, my sister was furious and said she was going home to demand her doctor put her on topamax. Apparently it really does affect weight.

I had to give up the topamax over the memory issues. The doctor said that is one side effect that does not get better like the tingling did. I never got above 100mg. As soon as I tried 125, I started struggling with short term recall. They immediately weaned me off and said I couldn't take it.

 

[IheartMickey]

I take 100mg every morning and 125mg every evening. I recently increased to the 125mg in the evening and have noticed increased word recall problems. I had this problem when I first started topamax but it eventually worked itself out. I also could not drink carbonated drinks, they tasted strange. This too eventually went away. I am hoping over time the word recall will work itself out again as I would like to increase to 125 in the morning as well. I am still getting way too many migraines. On a different note I LOVE the weight loss side effect. I have to say I have never really had weight issues but on our last Disney trip after watching everything I ate, my sister was furious and said she was going home to demand her doctor put her on topamax. Apparently it really does affect weight.

The weight thing never happened for me! And I could use it!

 

[3smithboys]

I take 225 at night. I went up to 275 at one point, but the side effects were too much. 225 is the most I can take - I have some word recall issues, but I live with it for the migraine relief.... the topamax does not work for me on it's own thought....I take along with 2 other meds (that I take daily in the morning.) I just started on the second morning one about 2 weeks ago, and it really seems to be helping. I hate the fact that I need to be on 3 daily medications to prevent my headaches, but I was getting so many I needed to do something!

(I also have not seen the wonderful weight loss side effect! Sure wish that happened for me too!!!)

 

[emer95]

I was up to 150 mg, and I absolutely hated what it did to me. The fogginess, aversion to many foods/drinks, and dangerous weight loss. Plus I was still having the killer migraines. I slowly weaned myself off if it.

I started Botox treatments in August of 2011. It has really helped me. I still get migraines, but not as often and they don't last as long. I had a wicked one last week, but I took two Relpax, went to sleep, and it was actually gone the next morning. That has never happened before. Usually when I get one, I know I'm in for several days before it's gone.
If you're getting more than 15 to 20 migraines a month like I was, your insurance should cover Botox.

 

[IheartMickey]

I take 225 at night. I went up to 275 at one point, but the side effects were too much. 225 is the most I can take - I have some word recall issues, but I live with it for the migraine relief.... the topamax does not work for me on it's own thought....I take along with 2 other meds (that I take daily in the morning.) I just started on the second morning one about 2 weeks ago, and it really seems to be helping. I hate the fact that I need to be on 3 daily medications to prevent my headaches, but I was getting so many I needed to do something!

(I also have not seen the wonderful weight loss side effect! Sure wish that happened for me too!!!)

Try having to use injectables along with all the Meds. No fun!

 

[Agri]

I tried it for seizures (though I do have migraines as well) and while it took care of the headaches, it made me stupid/gave me short-term memory issues which definitely get worse the more you take it. Just mentioning this because if you start feeling 'dumb', tell your doctor so you can get off it ASAP rather than try to stick it out.

Any medicine that has the side-effect of grogginess that isn't intended as a sleep med will take some time to adjust to. As your body gets used to it, you'll feel less and less groggy. If caffeine isn't a trigger for you, imbibe!

 

[Dax]

I have found my miracle cure for migraines....getting pregnant..LOL...

But seriously, I was on Topomax, and had to stop at 100mg as well as I started getting recall issues, and I would not remember driving to work...never good. Never did find anything else that helped

 

[chellt]

I have found my miracle cure for migraines....getting pregnant..LOL...

But seriously, I was on Topomax, and had to stop at 100mg as well as I started getting recall issues, and I would not remember driving to work...never good. Never did find anything else that helped

I thought I was going crazy! I would forget my address, not remember driving home, and burned to a crisp every time I walked out the door! So glad I was able to find something else that worked. My heart goes out to all of you still suffering. Headaches are the Pitts!

 

[IheartMickey]

I have found my miracle cure for migraines....getting pregnant..LOL...

But seriously, I was on Topomax, and had to stop at 100mg as well as I started getting recall issues, and I would not remember driving to work...never good. Never did find anything else that helped

My headache specialist did say pregnancy seems to be a miracle cure in patients for those few months.

 

[Domo]

From my archives. YMMV.

Official uses of this drug include migraines, seizures (both simple and complex), Generalised Tonic-Clonic (basically a typical seizure), and Lennox-Gastaut Syndrome. Off label uses include the treatment of Bipolar Disorder (both on it’s own and with other medications), cluster headaches, eating disorders, Fibromyalgia, Major Depressive Disorder, PTSD, Vanity Dieting, Alcoholism, sleeping disorders, Autism and the healing of long time scars.

Common side effects include weight loss (often associated with appetite depression), Paresthesia sensation, Dysgeusia, Aphasia, memory loss and general cognitive impairment (giving rise to the nickname “Dopamax”.) It can also sedate you, so take it at bed time. More unusually, you may get visual problems as well dry and itchy eyes. In fact, this drug has a warning associated with Myopia and Glaucoma, so one must be careful when it comes to vision. It may also make you intolerant to caffeine. Very rarely, you may experience Babinski-Nageotte Syndrome.

 

[Jennasis]

Topamax and I did not get along. Forget the tingling extremities and the way it ruined my beloved Diet Coke, the stupidity was the worst. I believe it has permanently messed up my recall as I have terrible memory problems still to this day (7+ years later). You could toss 10 pennies on the floor and ask me to count them and it would take me an hour. I'd be driving somewhere and forget where I was going or why AND how I got there. I couldn't remember names (including my own), dates etc and I now have permanent but mild dyslexia. Had no issues ever before starting that drug.

I did find migraine relief eventually from Keppra.

 

[luvwinnie]

Thanks, all. Saturday I was a ZOMBIE. Gradually getting better. I am worried about the cognitive issues considering I'm an editor. I have made a decision to cut out all processed foods and cut my sugar intake WAY down. Let's see how that goes. Maybe then I can cut down the topamax.

 

[daughtersrus]

Several years ago, my DD was taking Topamax for seizures. She had many side effects from it. It got to the point that she was so lethargic that she could barely hold her head up. The doctor warned us that the nickname is Dope A Max because so many people have problems with it.

I hope that you adjust or can find something else to help with the migraines!

 

[luvwinnie]

The dosage is usually much higher for seizures than migraines, from what I have read.

 

[Sorsha]

HATED the stuff. I took it for seizures, not migraines, and ended up on quite a high dose. I never really had trouble with the tingling hands and feet, and the grogginess eased up after a while, but my other side effects were terrible.

I had short-term memory issues, as posted, but the worst thing seemed to be the barrier that it placed between my brain and my mouth or my fingers. I might know exactly what I wanted to say "Let's go get a soda" but what would come out of my mouth would be something like "Let's go get a fish". People looked at me like I'd lost my mind. I literally would have to stop and replay what I had just said before I'd realize that it had not come out right. Really affected my ability to type too; I could no longer spell properly! Now, mind you, I am quite a good speller under normal conditions. On Topamax however, I would have to spellcheck constantly, and when I would see the errors I had made, I would be like... "WTH??"

Sadly enough, I did NOT get the weight-loss side effect, which was the one I really wanted!!! It wasn't really working for my seizure disorder either, so instead of continuing on at such high doses with such awful side effects, my Neuro weaned me off it and we tried something else.

The two slang terms most often associated with this drug are "Dope-amax" and "Topamax-brain". There's a reason for this...

 

[daughtersrus]

The dosage is usually much higher for seizures than migraines, from what I have read.

You're probably right. I was trying to remember what dose she was on but it's been awhile. I think that she was 25mg twice a day but upped it quite a bit over a year or so. These were probably high doses considering my DD was only about 30lbs at the time.