Debilitating migraines; has anyone taken Topiramate for them?

[Swifey]

I have been having migraines since I was about 15, I'm now 40, but in the last few years since being pregnant with my second son and since they have really ramped up! Some weeks I have 4 or 5! I take triptansfor them, with paracetamol. And if they are really bad oral morphine. I currently on imipramine as a preventive but they aren't working. I've also tried amatriptaline (sp??) and propanol, neither of which worked. I cannot take any anti-inflammatory medication either. This is one of the last things my neurologist said we can try, so wondered if anyone else had taken it? It's meant to have not very nice side effects, although one of them is weight loss which might be ok

Sorry about the spelling and grammar mistakes in there!

Request pregabalin. It's expensive but my neurologist said it's much much easier to tolerate than topirmate

Be interested to follow this as I've just spent two days in bed completely wiped out by a migraine

Hi 2929 thanks for replying, is it the same type of drug? An anti-epilepsy one?
I presume you had/have terrible migraines too?

And greathat it's totally crap, isn't it? Have you had them for always?

Since I was a teenager but they seem to last longer each time. I have the sumatriptan which seem to make no difference at all and pizotifen to prevent which had been working for about 6 months til this weekend. Really hoping it was a one off

Can I ask how you ended up with a neurologist I'm thinking i need to go back To gp and say sumatriptan is rubbish and I know it costs the nhs a fair bit...

My lovely gp sent me to the neurologists as they were concerned something else was going on, and because they couldn't control the migraines any more!

There are lots of alternative triptans they can try when Imigran gives up. Back to GP for those it's stopped working for!

I'd love to see neurology, but I'm following the NHS pathway with my meds. I hate preventatives and the amitryptiline knocks me out so much its impossible to take. Next is pregablin, but it's no good when trying to conceive, as I understand it and we may be trying IVF this year.

I've used gabapentin before too, the side effects are quite bad at the beginning, but they do subside fairly quickly! But you mustn't get pregnant on them

I'm on topiramate for my migraines and I've had no side effects, not even the weight loss unfortunately. They work so well for me, I've had one migraine in the 2 years I've been on them. I used to get 1 week long migraine every 6 weeks or so.

I'm off it at the moment as I got pregnant and now breastfeed. I have migraines daily, topiramate cut the pain down by a third, the nausea by at least half, did bugger all for the other neurological symptoms. Hard to tell if it did make me cognitively slower given what having a migraine does to you anyway.
Speaking of pregabalin, I had that too. Didn't really do anything for the migraine but I asked to stay on it as it helped with my joint pain (have another shit health condition).
Christ on a bike migraine sucks.

Yes me!

Can't have propranolol due to asthma, didn't tolerate amitriptylline at all - basically slept for 18 hours a day.

Topiramate has been very successful for me. I was having migraines 25 days of the month and am down to 4.

I have been very disappointed at the absence of weight loss which is one of the much talked about side effects, I am still a fat fucker

The other main side effect is memory problems. If you get this, it mainly represents as having problems remembering the names of things - I definitely have this. However I can still function perfectly well as a medical consultant. I just find myself every now and then floored as I know exactly what I mean, but I cannot at all remember the word for it - on a memorable occasion I ended up miming a tourniquet to get across what I meant but most of the time I get round it, google it or tell DH 'you know what I mean' and he does.

I'm also on a high dose and the side effects don't really get worse with the dose - you either have them or you don't.

Finally, don't be put off by your neurologist saying 'one of the last things we can try'. I went to see the neurologist who runs the migraine clinic at Queens Square privately and he was really positive about there being loads of options for migraine. I changed my triptan to one with fewer side effects too. If your neurologist isn't migraine specialist, don't be downhearted. It was the best £350 I ever spent as I'm not even going to need to go for a follow up.

I hate it when a migraine starts at work. I;m a teacher so I have to stay with the class until someone can be found to cover. I can't see them and am trying not to vomit - and once it properly kicks in that's really hard. Then I have to hope my hubby isn't away with work so he can come and get me and take me home

I'm also on Topiramate....
I see OP you take paracetamol...neurology will tell you to stop taking any painkillers, the paracetamol and morphine will have to stop completely as you may be having rebound headaches.
I take daily topiramate, and haven't lost weight on it, but do have word blindness and can't drink fizzy drinks anymore...Its halved my migranes from 25 to 12 a month.
then I started monthly botox with the migrane clinic, and now i have only about 4-5 migranes a month.
the criteria for botox on the nhs is really really strict, but has helped hugely for me.
neurology referral from the GP is your starting point OP - 4-5 migranes a week is miserable :(

In terms of rebound headaches as boston says, I was told no more than 6 triptans a month and not more than 2 in a week. Basically same for paracetamol/anything else for heachache.

I can treat headache for max 6 days in the whole month with any sort of painkiller at all, and that's it.

I keep a diary and grade them out of 10 - anything 5/10 or less I just put up with. Also an icepack, food and a lot of water at the first sign of trouble will often ward off a minor one.

I've also got v wise to my triggers - which are loads but you can still do a lot about them, my house is gradually becoming fragrance-free, if I bought paint it would be low VOC, I've got a massive water bottle for work, I've got f:lux on all my screens to eliminate blue light etc etc etc. Every little thing adds something. It's v obvious that if I have a late night, there will be a migraine the following day. So I've had a complete life overhaul.

Forgot: neurologist also suggested trying feverfew 250mg, magnesium 400mg and riboflavin 400mg. I've done the first 2 but not the riboflavin as my migraine had got so much better.

Unfortunately I also have severe nerve damage from a bodged laparoscopic operation where I bled out and nearly died, so I need painkillers for that (ie oral morph or codeine) otherwise I'm in hospital once or twice a month on a morphine drip. It sucks!!

my ds started taking it age 8 , so it cant be that bad
he does take it before bed as it makes him sleepy .
he hasnt mentioned any strange side effects and its kept his migraines at bay .

I take topiramate . Not a miracle cure and have word blindness , bit of fog and no fizz taste.
It’s made things a lot easier though day to day.