topiramate: Any experience on... - National Migraine...

National Migraine Centre

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Any experience on Topiramate?

16 Replies

Hi.... I was started on this after having a very painful pressure headache constantly for 18 months, I’m afraid after gradually increasing to 200mg a day this did absolutely nothing for me.... but after starting on Amitriptyline and gradually increasing this my 10 mg a week, now on 50mg my headache has eased dramatically! I can still feel pressure in my head but it has taken the feeling of the headache away, it’s hard to explain. I was in a really bad place June and really didn’t want to be here anymore because of the headache so I can honestly say Amitriptyline has really saved me! But I was originally put on Amitriptyline for a pain relief medication.

Hope__ in reply to Dazakella2010

Thank you for your answer

I am glad it worked for you,

I am trying to understand if it is a good preventive treatment even if sometimes does not work for everyone. It depends on the person.

Did Amitriptyline gave you any bad sideffects?

Dazakella2010 in reply to Hope__

No side affects at all from Amitriptyline but I have been on it before...I will just add that I have stayed on 100mg of topiramate as I didn’t want to stop it or play around with my medication in case my headache come back....

Please do a search on this site for the many messages about this drug. I am convinced this medication permanently damaged my memory. I took normal but high doses and then one day I started to forget passwords and minor details. It has never come back.

Please.. please do not take this medication

Look at magnesium glycinate ( or Nother version) 3x a day. Do this and taking Feverfew has really helped me.

Many many have the same experience.

Hope__ in reply to Onthemove1971

Thank you for your answer

I am sorry about the effect on your memory it sounds quite scary,

I am not sure yet, my neurologist reccomended to me years ago. But i didn`t want to try it at the time.

Now my migraines are getting worst again and i am desperate to try anything such as preventive treatment rather than just triptans and aspirins to stop an attack, it doesn`t work all the time and triggers more migraines.

I looked into Magnesium glycinate and I will try feverfew ,what dose is good? Would feverfew herbal tincture be ok?

Onthemove1971 in reply to Hope__

It is scary to be stuck in pain a lot of the time.

A few other thoughts. I have an injection of Imitrix at home when I need it, this has helped me a lot avoid the Emergency room.

I also use pepermint roll on and hot tea. I use ice and heat for neck and back pain. If you have neck and or back pain please treat this

It takes about 2-3 months to have the magnesium glycinate work. I HAVE to take it 3x every day. The Neurologist said I can take up to 1500 mg a day. I use 380mg 2x a day. These two have made it so during the day I do not have any migraines.

One last suggestion.. listen the "Heads Up" podcast. It is 2 Specialist from the UK. I have really learned a lot from them.

Best to you!

Hope__ in reply to Onthemove1971

Sounds like imitrex injection as a backup worth to try !

Can i buy it without prescription?

I do have neck pain and I do yoga to help,

i also listen to heads up podcast and i find it very infomative.

Thank you, it is always good to try new things even if sometimes, feels as migraines keep coming back stronger and more frequently as ever.

Best to you too

Onthemove1971 in reply to Hope__

No..but your Neurologist should give you that RX.

Ice for your neck might stop the migraines, but only in the beginning.

Best to you!

Like all meds works for some not for others same with side effects. I'm on 50mg I personally wouldn't want to go higher than that, however when your in pain and beside yourself you will try anything. Like you on triptan tablets and the injection.

I have Indian head massage monthly or more if can afford (since pandemic had once) for about 15yrs now I swear by it and reflexology along with meds ofcourse. Also use the herbal forehead roll on thingy at temples. And just whatever helps!!

My memory has got bad but could be down to severe asthma meds or just living with debilitating illness not sure.

Yes, medications have side effects, but please read the MANY people on this list who have suffered greatly from taking this medication.

When I stopped having memory loss as bad, but know that I will never be the same. Even my doctor told me the taper off and that it was the cause. I now pleased with everyone, please don’t take this there are many others to help.

Hi I take topiramate but not for migraine I take it for epilepsy. The side affect I have is weight loss I take 250mg a day and I've lost roughly 3 stone.

I've never had a migraine so I wouldn't know if it helps for that but I've never suffered with headaches.

It really helps my epilepsy so I'm sticking with it neurologist keeping an eye on weight loss of course.

I was on up to 100mg Topiramate. The neurologist mentioned that it might cause some "cognitive slowing", but it was more like the symptoms of early onset dementia. The most terrifying things were that my cognitive functions were so impaired that I was unable to recognise the horrifying effect it was having on me until after I had stopped (it was like slowly waking from a terrible nightmare), and that I didn't seem to recover fully afterwards (indeed there are a lot of people who are concerned that it has left them with permanent brain damage). I must say that the casual way in which it is prescribed, and the complete lack of any formal research into potential long term effects (let alone any tracking of usage), has completely shaken my faith in the medical system.

Recent research suggests high intensity aerobic exercise (running, swimming etc) is as good as any medicines used as migraine prophylaxis. I don't know if you can but even if you just run for 15 min in the park you will notice a significant improvement after a few days. Not every type of migraine can benefit but most types will. Avoid dairy, red meat, wheat and going to bed early in addition to exercise should help and you may not need medicines such as topiramate. Don't forget to avoid sugary drink, food and deep fried junk.

Please avoid it if you can. I went on it two years ago for migraines, I suffered memory loss, anger, drowsiness after two years the neurologist agreed I could come off them as I was having no migraines and I broke the cycle. But it made them worse and whilst coming off them it triggered them to come back worse than ever. They had to put me back on it and now I’m on a higher a dose than before. I feel trapped on it. It’s sucked me in and I can’t get away from it. It’s horrific. I forgot the stupidest things, I have to write down everything, with two young kids it’s a battle so I don’t feel like I’m failing like I’m forgetting everything for school everyday. Be careful I feel like there’s no going back once you go on it. Take care xx

Hope__ in reply to Daisey2

Thank you for your response

I am more convinced, after reading most negative experiences on topiramate, that I am going to avoid it for sure. The side effects are scary and horrendous, it’s not worth it and I think I am going to try other options out there.

I hope you will manage to stop it there must be a way... have you tried other opinions , consultations?

Best of luck

Daisey2 in reply to Hope__

Yeah I hope you get sorted. I’ve got a great neurologist, however I’ve not managed to see him due to covid so I’ve been seeing my gp, I’ve got a plan to try other options by my neurologist but I needed to come off the tapirimate first. However when I slowly come off I suffer the most horiffic migraines and side effects and with it being such a long process to actually get off them if it’s just so difficult so at the moment I’m stuck in limbo with it. I’m going to try again once I can see the nurologist again and see what he can suggest if anything. Good luck lovely xx

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