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Original poster

Topiramate - tell me the side effects get better!

48 replies

CaptainCanary · 14/04/2026 21:36

Started topiramate for migraine over Easter and I feel like absolute 💩

Only on 25mg but currently so much worse than beforehand. Zombie tired, reaching for words I can't quite find, headaches not my 'usual' migraine but a more severe type of 'other' pain, no appetite, and this morning I felt like I might pass out in the middle of Asda. I know the first few weeks can be the hardest and I'm hoping it will pay off in the long run but struggling to stick with it at the moment and there seems to be no end of people online with horror stories to share. Review due with GP at the end of the month.

Please, someone tell me it'll be worth it in the end!

OP posts:
Tuxedorose · 14/04/2026 21:42

Unfortunately I couldn't hold down a job while on it ☹️ I also lost a lot of muscle mass & weight very quickly and it caused some odd personality changes.

My consultant took me off them after five weeks. Never again.

Can't believe that some children use it!

But we're all different and it obviously works for some people. Keep talking to your neurologist about it 💐 (sorry I hate being so negative!)

Hope you're ok x

Doggodoggo · 14/04/2026 21:43

My DC used it from a young age with zero side effects. Everyone is different and reacts differently to medications.

Original poster
CaptainCanary · 14/04/2026 21:52

I'm not even under a neurologist at the moment! Not for lack of effort from my GP surgery but they just keep getting letters back basically saying 'you're on track, continue in primary care' 😩

Started on amitriptyline which was brilliant for my sleep but didn't do much for my head, low BP so propranolol isn't an option, MRI was normal, so now I'm trying this before my GP has another go at getting neurology involved...

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Tuxedorose · 14/04/2026 21:56

@CaptainCanary We sound very similar!! Has anyone suggested Botox to you? Botox definitely helped me.

I got so fed up of waiting that I had mine done privately but it was worth it.

The migraines aren't completely gone but they are better.

youalright · 14/04/2026 21:59

I don't normally like to slag of medication as everyone is different but this drug should be banned. The side effects are horrific. Have you drank a fizzy drink or a beer yet while on it?

Original poster
CaptainCanary · 14/04/2026 22:08

No mention of Botox yet but I did also find someone on twitter who said it helps them so I'll have to bring it up!

Haven't tried any fizzy drinks yet but I saw plenty of comments about how weird they become...luckily I've managed to cut right down since the migraines started so I'm not missing them too much

OP posts:
fandjango · 14/04/2026 22:13

I was absolutely vile on this medication. I am quite a laid back placid person but I became so angry and aggressive on it.

Tiny things would make me erupt and I became scared of myself and did not trust my instincts or reasoning and reactions.

That’s just me. May not be the same for others

fizznchips · 14/04/2026 22:24

It didn't work for me, I almost lost my mind when I was on it, my mum thought I needed to be sectioned. I've been on Botox for my migraines for over 12 years and it has been life changing. Push to see a neurologist as I don't think your GP will be able to prescribe Botox. Good luck

ReleaseTheDucksOfWar · 14/04/2026 23:53

I take a low dose for a different reason and the first week was horrendous, but it passed and I absolutely wouldn't be without it now. No way. Ill try to remember to check the dosage tomorrow, but it's half a tablet.

I stopped it when I ran out of tablets on holiday after someone mistakenly threw them away, and on one other occasion. Re-starting them is always awful, but the ill effects pass within a few days and the beneficial effects are more than worth it.

I do notice my heart rate won't speed up on it - if Im exercising hard or if something would normally get my heart thumping, it just carries on at its normal rate nowadays, oddly enough. Don't think Im imagining it.

Original poster
CaptainCanary · 15/04/2026 10:56

That's really interesting! I noticed earlier that my Fitbit didn't seem to have recorded as high a heartrate as usual while I've been out and assumed I'd just been dragging my feet slowly because I don't feel well but I'll see if the pattern continues even when I (hopefully) adjust and feel better now you've said that.

Contacted GP surgery this morning and they've brought my appointment forward to next week, hoping by then I'll have a better idea of whether I think I can adjust to it or feel it isn't worth sticking. Proved my point about the brain fog when they phoned back to confirm the new booking and it took me three goes to match the date and day of the week 😬

OP posts:
Oneearringlost · 15/04/2026 11:06

CaptainCanary · 14/04/2026 21:36

Started topiramate for migraine over Easter and I feel like absolute 💩

Only on 25mg but currently so much worse than beforehand. Zombie tired, reaching for words I can't quite find, headaches not my 'usual' migraine but a more severe type of 'other' pain, no appetite, and this morning I felt like I might pass out in the middle of Asda. I know the first few weeks can be the hardest and I'm hoping it will pay off in the long run but struggling to stick with it at the moment and there seems to be no end of people online with horror stories to share. Review due with GP at the end of the month.

Please, someone tell me it'll be worth it in the end!

That "reaching for words I can't quite find"...my sister was on it for migraine ( now off it, thankfully) and she said she couldn't recite the alphabet in her head, ie, what came after "pqr", for instance. She was frightened and horrified. The side effects are not to be underestimated.

fizznchips · 15/04/2026 11:10

I forgot how to cross the road, it was terrifying

Original poster
CaptainCanary · 15/04/2026 12:15

Oneearringlost · 15/04/2026 11:06

That "reaching for words I can't quite find"...my sister was on it for migraine ( now off it, thankfully) and she said she couldn't recite the alphabet in her head, ie, what came after "pqr", for instance. She was frightened and horrified. The side effects are not to be underestimated.

Show quote history

That is terrifying about the alphabet and the road @fizznchips! I had to say something about the tap (got the word now I don't need it...) earlier and ended up having to go with "sink handle"

OP posts:
Xiaoxiong · 15/04/2026 12:22

Would you consider going to the National Migraine Centre? You can self-refer and they can discuss accessing alternatives including anti-CGRP meds. We found them incredibly helpful - we went through the paid route and got an appointment within a week for a couple of hundred pounds, and the payment subsidised their free-of-charge list (they are a charity).

Xiaoxiong · 15/04/2026 12:24

(DS1 was going to trial topiramate until we discussed the side effects with the neurologist - which honestly sounded 100x worse than what they were supposed to treat, and that wasn't even considering the potential negative effects on his long-term fertility.)

AnnaMagnani · 15/04/2026 12:27

It worked for me but the word finding did not get better. Had to give it up.

There are a lot of options your GP has to work through before Neurology are interested as they only see the most complex cases and have massive waiting lists.

VerityUnreasonble · 15/04/2026 12:31

I've taken it for years and the side effects did settle eventually. Except coca-cola has never tasted the same so I still don't drink that. But the brain fog / weight loss / tingling fingers went away and it does reduce my migraines. I take 150mg so a reasonable dose.

Edit: I do have to sign a form now every year to promise I'm not going to get pregnant, which I'm absolutely not going to.

AreThereSomewhereIslands · 15/04/2026 12:53

I was on it for 6-9 months in my early 50s to treat perimenopausal migraines and it was the worst experience of my life. The brain fog was unbelievable - my short-term memory wouldn't work, I struggled to find the correct words for things, I started writing back-to-front, and once when I took an afternoon nap I woke up with my eyes registering things in the wrong colours - my ginger cat was curled up next to me on the bed but he was green.

...Naturally, because I really could have benefited from losing a couple of stone, I didn't experience any weight loss at all! The only side-effect that I secretly enjoyed was that it cut out my internal filter and I said precisely what I was thinking about people and their silly suggestions. And because everybody knew it was the topiramate's fault, I got away with it... Grin

ReleaseTheDucksOfWar · 15/04/2026 14:02

@AreThereSomewhereIslands I love your last two sentences!

Sounds like Ive been extremely lucky with it :o
I had the tingling mildly, still do, but the word-hunting is better now than before I was taking it, probably for other reasons though. Been on it just over a year.

LemonySippet · 15/04/2026 14:58

I've been on it since 2018, now at 50mg x2 a day, and for migraines it has been life changing for me. The first couple of months was hard to get through the side effects, the tingly fingers and word-loss was the worst. I never really got the scrambling for words back until I started hrt last year, it's now vastly improved. Worth sticking it out for a bit, I think, to see how it settles. Good luck!

KolaBear · 15/04/2026 15:02

I’m on 100mg a day and have no side effects.
And most importantly it has practically eliminated my migraines - I think the last one I had was about two years ago.
I did totally lose my appetite though when I started on it, which in theory sounds great, but in practice is actually really rubbish.
Thankfully that wore off after a few months.

TigerRag · 15/04/2026 15:06

youalright · 14/04/2026 21:59

I don't normally like to slag of medication as everyone is different but this drug should be banned. The side effects are horrific. Have you drank a fizzy drink or a beer yet while on it?

Agreed. I had so many issues on it. Almost everyone I've talked to who has taken it, has reported some unwanted side effects

I begged to come off it and I'm really baffled as to why, after my audiologist said the likely cause of my hearing loss was topiramate, no one suggested I come off it. I was asked a few years ago if I wanted to go back on it. I'd rather have the migraine. It was awful for me

The side effects didn't get better for me

HoppingPavlova · 15/04/2026 15:13

I have one on it who has been in for around 10 years so far, it’s been brilliant and they are fine in it. They did struggle with neuropathy to start with and that didn’t settle, and it was changed to morning only dosing and that didn’t settle the trick. Works well for them.

CornishPorsche · 15/04/2026 15:18

I didn't lose a pound in weight unfortunately for me, but I had all the bad side effects - brain fog, exhaustion, peripheral neuropathy and they only got worse as the dose went up.

My migraines also came back with a vengeance after a few weeks on each higher dose, so I was on the highest you could be given and it was horrendous. I was being tested for cancers and all sorts because even the GP didn't recognise it as side effects. I lost nearly two years of my life to that drug.

I'm under neurology now who took me off it (GP prescribed it) and have fared much better with the new anti CGRP jabs.

EverythingIsComputer · 15/04/2026 15:44

Made me really spaced out. I remember going to the beach, paddling and looking down at my feet seeing the waves and going back and forth and over my toes and almost falling over, it was so strange. But I was off work, dunno what I would have been like in front of my laptop.