Migraine meds... Topiramate

[Tarrarra]

Has anyone been prescribed this for migraines? Did it work? How long did it take to work? Any side effects? I've been prescribed it and have scared myself reading the leaflet!!! 😃

It has been amazing for me. They think I may have been having cluster headaches - I basically had the worst migraine like headache I have ever exerienced (had a lot of bad heads before!) each day for over a week (with a few weeks of daily headaches increasing in severity building upto this) and basically nothing was touching them. Painkillers didn't help, triptans didn't do much, I literally couldn't function for about 4 hours a day because of it and would then spend the rest of the day wiped out and nauseous.

The topiramate 25mg made it so the prescribed painkillers with paracetamol and a triptan helped. Then after a week I increased to 50mg and could manage on naproxen and paracetamol and within a few days I was managing well - yes bad headaches daily still but I could deal with my kids and work. This improved and I have stayed on the 50mg, I have several 'mild' headaches that I can manage with the paracetamol and occasionally Naproxen.

Side effects - I was exhausted anyway from the headaches but they wiped me out at first. Soon got used to it though and am fine now. Really suffered with pins and needles at first - I am more prone to this then I used to be but its worth it. Id say give it a go and give it a few weeks to see how you adjust. You may also have to find the right dosage for you. I'm lucky that quite a low dose works at the moment for me and my doctors told me how to increase if I feel I need to.

Where do you get pins and needles?

I was prescribed this for my migraines after trying everything else. I worked my way up and now take 200mg a day, i would say it took a couple of months to really see a difference as i used to get two or three bad migraines a week and now only get one or two a month.
Side effects from what i remember in the beginning were being a bit dopey and forgetfull but that did pass, one lasting side effect is sleepiness but they may be due to my other meds aswell.
I certainly couldnt be without topiramate now.

I take it twice daily, OP.

It's generally been good for me - although my migraines are a bit odd. I used to have full-on classical one-sided attacks with the whole works (sickness, light sensitivity, need to lie down and sleep in a darkened room). Now they've morphed into low-level but long-drawn-out attacks that allow me to function but make me feel awful and drag on for days. It had reached a point when I felt that I had a constant headache.

Topiramate has helped a lot with that and now I have mini-breakthrough migraines much less frequently.

I haven't had any side-effects on my current dose (50mg, with half in the morning and half at bedtime), other than possibly mild pins and needles. Dosage is quite a delicate matter, though. I went up to 100mg a day at one point and that was too much. It made me very depressed and zoned out. A migraine specialist I saw said some people can't tolerate high doses. But I felt the benefits quite quickly, probably within a couple of weeks of first starting on it.

I would say go for it. You can always stop if it doesn't help you.

My pins and needles were in my fingers/hands and feet to start with and it was quite frequent. Now its mainly inbetween my toes and occassionally my fingers, and times when I would have got it previously seem enhanced if that makes sense? And I get it in the same situation (walking in hot room from cold) but now the temperature difference doesnt have to be as extreme to set me off

I have been on 200mg for about a year. The good side effect is that I have lost quite a bit of weight. (Needed to!) Rapid-cycling migraines are a thing of the past at the moment. The bad side effects are - grasping for words when talking, being knackered all the damn time, hair falling out in clumps, and major depression. We are experimenting with lowering my dosage and I am being careful with my diet so I don’t balloon! (Also taking a bajillion hair, skin & nails vitamins to see if that will help!)

Thank you for your quick replies.. I've taken my first dose and am keeping everything crossed. After a year of weekly migraines I would be happy for a bit of a break!

I was on 200mg BD, but I found that it didn't help all that much and the brain fog/forgetting words/clumsiness was worse than the effect it was having on my migraines. So I weaned off of it.

I tried this starting on 25mg and was supposed to work up to 100mg, but the side effects meant that I had to stop. I had forgetfulness/clumsiness and bad pins and needles in hands and face. Persevered for 3weeks in hope I would get used to it but didn’t. It didn’t help with migraines either.

I took it for migraines for about 3 years and found it be very effective. My headaches were daily migraines not really severe but enough to make it difficult to work With occasional really severe attacks. I also lost a lot of weight on it (sadly put it all back on and quite a bit more..) and had other side effects like others have mentioned - tingling, struggling for words, fizzy drinks tasting flat, alcohol having strange effects and feeling spaced out. The highest dose I was on was 200mg but that wasn’t for long and once the headaches were better I was able to reduce to around 100mg. My headaches were worse around my period so I used to increase by 25mg just before it was due and then drop down again when it was finished. I managed to come off it completely by starting a combined pill which completely controlled the headaches for a while b

My 12 year old daughter also gets bad migraines and she started topiramate yesterday. Really hoping it will work for her without too many of the nasty side effects as she’s been really struggling with headaches every day for months now.

How strange about the weight loss thing. I had read that, and in some countries Topiramate is licensed as a weight loss drug (appetite suppressant), but even on 200mg BD, my weight wasn't affected at all.

I’m on 100mg per day and it’s been great. Initially did experience lack of appetite, but that stabilised after a few weeks. And touch wood, I haven’t had a migraine in a few years (after clusters of up to 20 a week).

I was getting up to four or five a day and have scars all through my brain. The types of migraines I get are somewhere between epilepsy and strokes. (Hence the topiramate.) I’d forgotten about the pins and needles. I get them all the time in my fingers and toes too. I don’t even pay attention any more!

Oh I do seem to more intolerant to alcohol on it and pretty much always throw up when I take my 50mg but not when I'm on 25mg (recently tried weaning off bit headaches started increasing again) now I don't drink a lot so it may be coincidence/im a lightweight but even after only having a few glasses I would be sick, so I either take my tablet in the morning instead of night that day or I skip it. But if I have been feeling headachey for a day or 2 then I just don't drink.

I wish weight-loss would be a side-effect for me - sadly not!

I'd forgotten about the fizzy drinks tasting flat, though. That's definitely a thing. And the grasping for a word became a problem when I was on a higher dose, but went once I dropped back down.

I hope it works for you, OP - and pingster's DD.