hi
I’ve just started taking topiramate to hopefully prevent migraine after trying many others, having awful side effects and continuing to rely on triptans. Feeling a bit weird after just the first topiramate hoping it settles quickly. Anyone else got experience of topiramate for migraine? Thanks
I've been on topirimate it didn't help or hinder.
thanks for your reply
How long did you take it for?
A few months, got to give it a chance to work if it's going to. I met some people years ago who detested it and thought it was a terrible drug side effect wise and that no one should be given it but that wasn't my experience at all. My body didn't seem to notice it. It's an old drug so GP's tend to like it because there is a lot of data on it.
I am one of those people. I had/have permanent memory loss from this drug..
I wish it was not on the shelf! Horriable. I could not even remember my passwords!
Please focus on magnesium. Type, dose and timing. Research shows this supplement really works. I suggest starting 3x daily and increasing the dose after your body adjusts. It will take between 3-6 months to really make a difference.
I also take Feverfew 2x daily.
Both together help a lot.
I also keep Triptan injections with me at all times, especially when I travel.
One last thing hydration is key..
Hope things get better
Ah no doubt it was you I was thinking of!I have memory loss too but that's put down to amitriptyline, trauma, insomnia plus chronic migraines as well, all of which could be the culprits, that and poorer cognition.
I wish you could find something that helps. I am going to focus in exercise and see what it does for me. Happy New Year!
Well I do tons of exercise, roughly 12 hours a week. I have fibromyalgia and it's the only 'treatment' other than antidepressants. Can't say it helps particularly with my ailments but mentally it's a life saver.
Happy New year to you too!
gosh how do you do that much exercise with head pain? I've stopped because my pain is too much and now I'm unfit so there is no answer! That is my big challenge, how to keep fit with a constant headache .
I have other conditions like fibromyalgia, IBS and Bladder Pain Syndrome for which the only treatment is exercise. I'm an insomniac too, if I don't exercise everything gets worse, so regardless of how much pain I'm in I drag myself to the gym! Plus I have migraines over half the time so if I stopped for them I wouldn't be able to do anything and I'd go mad. That and having 2 young children so resting isn't really an option anyway.
Although there is always a trade of, I don't have a career despite finishing my degree and I don't have a social life as such. I do kung fu in the evenings but I don't go to the pub etc. I live an active life but not a normal life!
can only try! Hope your migraine treatment is helping.
I’ve tried topiramate but it made me feel really drowsy even in the lowest dose. I was falling asleep my lunchtime. Hope it helps you.
Ah- so far I haven’t had that so fingers crossed! Thanks for your reply,
Ì take topiramate for my epilepsy and migraine as its used for both, I take 350mg per day 175mg in the morning and 175mg in the evening. I find taking meds after eating food really helps with any dizzy feelings of any medication really.The only side effect I have with topiramate is weight loss(3 stone)but it is working quite well for helping with the migraines and epilepsy. I take two other meds aswell so my body has got used to a strong strength of meds.
Hi been on Topiramate for just over a year, no side effects, on 25mg 3x day slight weight loss
That’s great to hear - has it helped with the migraines?
I had been on Topiramate since 2014, 250mg a day. I found pins and needles in hands and feet difficult to put up with initially. I was told you start to forget words/mix your words up, so commenced with Omega 3 Fish oil tablets, 1 a day. These help heart and mind. I never have had a problem since. However, the chemists are having difficulty recently, since we have left the EU. I am now on Candarstan, up to 16mg a day. I find these much better.
Just curious what else you are doing or taking to stop your migraines? Hope you can find something that helps.
I took Topiramate for about 6 months for epilepsy. Terrible side effects and one of the worst meds. It works for some.
Unfortunately I did have side effects with this some minor like feeling I was being bitten by ants all over which went away and others which were more problematic which after 6 months did not go away. I did find that it reduced my migraines but didn't stop them or my headaches. I have not found anything to date that takes away the migraines and headaches completely. Wish you better luck with this.
I found Topirimate a huge help - it cut migraines down dramatically, with only initial side effects of tingly fingers and toes. This was on a low dose, at times it needed to be increased (my GP said you could play around with the dose to see what helps - of course after consulting GP). I stopped taking it as I was unable to have an orgasm whilst on it (it seems this is a known side-effect, but not on the list)...I decided this was not a side effect I was prepared to stand!
Now on Amitriptylene which is definitely helping (not as effective as Topiramate though). I think it's a very individual matter as to whether this drug is suitable. Good luck with it 
I took it for about 2 years it took me a while to realise it was making my hair fall out. Stopped taking it, 9 months on hair is getting back to normal. It didn’t help my migraine.
My experience with Topiramate is perplexing. It was prescribed by my GP on the recommendation of the neurologist to whom I'd been referred, as triptans etc had failed to make an impact. The said neuro, on the strength of an examination and a head MRI scan, had diagnosed chronic migraine - or rather confirmed the diagnosis and excluded more sinister causes.
I ramped up the dose of Topiramate to 100 mg/ day over two weeks, after which my more-or-less constant migraine state abated greatly. The only noticeable side effect was a bit of drowsiness after taking 75 mg in the evening. The benefit was short lived, lasting about six weeks, then I was back to square one.
After speaking to a GP again, I was prescribed Amitriptylene to add as and when, and my Topiramate prescription was increased to the max: 200 mg/ day. Again, I ramped up gradually and spread the load taking 100 mg in the evening. Side effects this time were different. At any time of day I could be drowsy or hyperactive, inert, suicidal, or seething with anger, all for no apparent reason. No way was I carrying on like that. Without consulting the doc I reduced the dose back down to 100 mg / day and added in the Amitryptilene. I can't say this has worked, but what apparently has (though early days) is acupuncture. The key there was getting the dart to hit the bullseye - it's a spot on the headache side of the neck - which took a few goes to find, and seems to need to be stabbed once every couple of weeks to keep the migraine away.
That's my story. I'm well aware though, everyone's different. Good luck with yours.
wow, thanks for sharing. It is a journey for us all and tricky to navigate at times. I think acupuncture is next on my list to try after this if needed. I feel the pressure to find an effective preventative now that the rizatriptan has started to be less effective at treating the migraine symptoms and other meds just don’t touch it as I’m sure you’ll appreciate. Hope the acupuncture keeps helping you.
Thanks. I forgot to mention, after I'd increased the dose of Topiramate I began to get twinges of pain in the kidney area - something I've never had before. Kidney stones is a listed side effect. By the time I could get an NHS ultrasound scan (6 weeks later) I had reduced the dose again and nothing showed up, meaning any stones not already passed out would have been 1mm or smaller. I still get the occasional twinge but very mild.
I was in the same boat.. have you tried magnesium? Research shows people who have migraines are low in magnesium. I recommend starting at 2x a day then go to 3x a day. It has changed my life. You many need to see what type is best. For me I take magnesium glycinate 3x daily, migraine medication ( over the counter)? Pepsi, Imitix-100mg as needed and when all else fails I have an injection of Imitrix. In addition I make sure never to skip a meal. Eat protein with each meal, drink lots of water. Apply roll on peppermint when needed. Ice on back and neck if needed.
I know this is a lot but it have really helped me a lot.
I just started taking 50 mg, twice a day. I feel awful. Nausea, hot flashes, dizzyness, just a general all over awful feeling. I have never had a reaction like this to any type of medication. On my own I cut the dosage in half for a couple of days and experienced some relief, but not enough to make it worth it for me to continue this drug. My Dr has prescibed it for what she believes are "complex migraines " that she feels have led to multiple TIA's. I hope that there is another med that can help me, as I will not live my life feeling this miserable.
Thats double the dosage I started on increasing fortnightly by just 25 mg - atm I’m on 25 in the morning and 25 in the evening. I’ll be on 75 next week. Felt weird last couple of days like you describe and also tingling and pins and needles. Improved today though so I think things do get better as body adjusts. I’m going to try to keep going with it as I’ve tried so many other preventatives that I have t been able to continue with or they haven’t made a difference. Good luck!
thank you, good luck to you also
hi I’m afraid I took it for 2 weeks only as I felt so giddy and spaced out which was the silent migraine condition I’m trying to prevent!! I had 2 weeks off all drugs and felt normal for the first time in 3 months … sadly after 10 days hit with another attack , now on low dose Amitriptyline and despite feeling a bit drowsy in morning (( which side effect is getting less) my sleep is good and managed 17 days before next attack …. It relaxes the brain … via extra Serotonin production… keeping fingers crossed 👏
Hi I've started topiramate today after taking propanol and amitriptyline for 30 years. Just hope it works, as the other preventatives no longer work. I'm also on triptans and cocodamol. The pharmacist says there can be bad side effects, but can't be any worse as migraine every day.
Hope it helps you x
thanks and you too
I have been on topirimate for years, it’s very effective for me along side my other treatments. I would recommend it
Thanks for your response
that’s good to hear- how long did it take for you to feel the benefits preventing migraine?
This drug made me lose my mind, caused major mood swings, anxiety, paranoia, weight loss from felling sick all the time and not wanting to eat. My doc kept saying give it 6 weeks until I decide so I did. 1 day after the deadline I took myself off. Never again. Hope you had better luck!
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Ive just started topiramate and need advice please
