Topiramate: will I get the side effec... - National Migraine...

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Topiramate: will I get the side effects again?

bouquet_of_flower profile image

Hi!

Has anyone stopped taking this medication and came back to it after a few months? I was taking it for almost 3 years (migraines), stopped 2 months ago. At first I had horrible side effects, lost more than 30 pounds, nausea, ect. and it stopped after 1 year or so. I'm reconsidering taking my meds again, but I don't wanna experience these side effects again.

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bouquet_of_flower profile image
bouquet_of_flower
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15 Replies
Slim66 profile image
Slim66

Hi, I had exactly the same side effects and also hairloss. This time around I’m on a lower dose, no WeightLoss but no weight gain either, still have hairloss.

bouquet_of_flower profile image
bouquet_of_flower in reply to Slim66

I didn't experience that, but this is scary. Hope it's not permanent for you!

Slim66 profile image
Slim66 in reply to bouquet_of_flower

Thanks, all the best to you 😊

OilyWiggles profile image
OilyWiggles

If you had those side effects before, I see no reason why it would be any different now. I wish I'd lost some weight on them. The only thing I lost, was my mind!

Winnie77 profile image
Winnie77 in reply to OilyWiggles

Agreed

bouquet_of_flower profile image
bouquet_of_flower in reply to OilyWiggles

Alright makes sense! I lost some weight, but only because I was barely eating. I took back almost all the weight when my appetite came back! Not worth it.

Entela15 profile image
Entela15

I couldn't take it. Side effects were too severe. There's a better one called flunarizine. Very good for migraines

bouquet_of_flower profile image
bouquet_of_flower in reply to Entela15

I will check. Thank you!

Onthemove1971 profile image
Onthemove1971

Please don't go back to taking this medication. I and many have permanent memory loss.. not good.

There are so many bemanr options.

What preventative are you taking?

bouquet_of_flower profile image
bouquet_of_flower in reply to Onthemove1971

I noticed the memory loss too. Right now, I'm not taking anything. Problem is, Topiramate was the only one that worked in the long term for my migraines (others would stop working after 1 year or less). I will check other options!

Onthemove1971 profile image
Onthemove1971 in reply to bouquet_of_flower

I would recommend magnesium glycinate at a higher dose. Every Neurologist I have seen as said that people who suffer from migraines have a deficiency in magnesium. There are 3-4 different types. It will take a few months to help you. But when it works you will have less painful ( before they would rate 10 on a scale) then you will start to get less in a week.

You should also look into Feverfew, which is approved by the American Medical Association.

Also, make sure you are not skipping meals, including protein in all meals, drink extra water, and treat all.pain as soon as you get it. In addition, don't over use triptans. I have started eating/drinking peppermint tea when needed. Treat all neck and back pain.

I would also like to recommend the " "Heads up" Podcast. They are 2 wonderful migraine specialist from the UK. Their back episodes have changed my life.

Hope all of this all helps..

Be well!

sa7ar profile image
sa7ar

Dear bouquet of flower

As my experience with the topiramate tablets... I'm on since almost 4 years now and a bit side effects... like numbness in both hands and frets.... but it helps with migraine a lot .

By the way not everyone get the same side effect.

Hope you the best x

Gary336 profile image
Gary336

I went back to Topiramate and had most of the same side effects. I then had a really bad reaction to them and became very ill. I swapped to Candesarten with less issues, but their efficacy seems to be wearing off.

fluffyfur profile image
fluffyfur

Ask about zonisamide which is similar to topiramate but fewer side effects

tomworm profile image
tomworm

I went on toprimate about 5 years ago. Gave up the booze and it was great. I then re introduced booze and it went ok for a while the pain came back but nothing like what it had been. The frequency increased.

After 4 years I noticed my hair was falling out. So I stopped and went back on triptylines. I just don’t get on with them. The migraines were terrible. But my doctors said I couldn’t have anything else as it was costing the NHS a fortune.

I am in the the minority of cases where the only thing that does seem to have a beneficial effect is giving up alcohol and topriamate.

Now I only seem to have aura only headaches. Now the giving up alcohol might not be for everyone. But it’s working for me.

Best of luck!

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