Pizotifen?

[shello28]

Hello there,

Saw my doctor again today about my migraines. Having had this condition for Many years... probably about 15, and tried lots of prophylactic meds and GONI and currently lucky enough to receive Botox every 12-16 weeks - they have again returned to a chronic state.... I have been prescribed Pizotifen and am reluctant to try as once again they incur lots of side effects and haven’t been able to tolerate many of the other meds I’ve tried. However, they seems to be relatively good for migraine. I am interested to hear if anyone has anything to share this medication?

[Pippwin]

Yes, I found it helped for a while. I found the only way to star it was to ask for a paediatric dose ..cant remember what that was, but I started on a tiny dose and gradually raised it. And best do it when you are off work, maybe on a weekend and take it before bed!! Makes you very sleepy. I actually felt like a new woman on it once the side effects went off, a sense of wellbeing and relaxed with less migraine, while it was effective. I did gain weight, but was thin before so it didn't matter too much. Hope you find it helps. I'm going to try botox next month for the first time.

Wishing you all the best

Pippa

[Cally01]

Hi Shello i haven't tried them for migraine but i have found that i sleep a bit better if i take an antihistamine called kirkland sleepaid and i don't wake with migraine.

I recently was given trasodone by my neuro, omg it was horrific, can't tollerate any of their drugs. 40yrs with migraines.

You should get some helpful feedback 😁

[DonnaSwales]

Hi. I have tried it and unfortunately did not work for me, caused weight gain. Hopefully will work for you. Good luck.

[erincawood]

I tried it when I was first diagnosed, started on low dose went you to max. But gound that after a couple of weeks the migraine fought back. Do remember too many side effects apart from taking ages to feel fully awake and having permanent munchies. Put on a lot of weight with it.

[Loulou1922]

Hi Shello, I’ve been on pizotifen for years. I have daily migraine associated vertigo as well as bad migraines which has left me pretty much housebound for 9 years. I don’t think it has helped much with the migraine pain / attacks but when I’ve come off it in the past my dizziness is really bad so I’ve stayed on it. Maybe my migraine attacks would be worse too if i came off it for long enough but I never wait that long to see. Who knows.

I read all the time about ppl complaining about putting on weight. I am really prone to weight gain but can’t say I’ve put on very much weight, more fluid retention which is a annoying but I’m more worried about feeling healthy than what I look like right now. I still eat same amount as before starting the drug - It’s all about watching what you eat. Makes you feel tired and lazy in the day but to me being tired isn’t a massive side effect and wouldn’t put me off trying a drug, especially when we suffer from the the horrific pain of migraines! Tiredness? Pah! I’ve tried many drugs that have made me have too many side effects and to me pizotifen has felt like a ‘weaker milder drug’ (It’s usually given to children). Even Kirkland sleep aid made me really spin and the floor move for days after taking a teeny portion of a tablet!

I remember when I first started taking pizotifen I didn’t feel ANY negative effects. A top London neurologist once told me that he didn’t think it was a very effective drug in adults. But I think you should def give it a try, you have nothing to lose and it may help you! Everyone is different and it’s important to remember that although it doesn’t seem to help my pain it may well help yours! Just start with a very small amount (for peace of mind more than anything) and see how you go. If it doesn’t work after a few months than ask for something else. Good luck and keep strong xx

ps. We always wishfully Google the next migraine drug prescribed to us and I think we sometimes forget that the ppl that have had massive improvement from the drugs are probably off enjoying their lives, and not sitting posting online about the positive effect that they’ve had for them!

[Langley-Loper]

I've been on pizotifen for a couple of years and it has turned my life around.

I did put on weight at the start and was really sleepy in the mornings but managing those side effects is easier than living with migraines. I take loads of exercise (try the couch to 5k (c25k) running app, there's a great healthunlocked group too), watch what I eat and force myself to get out of bed in the morning.

It seems individual experiences vary enormously but I ask you what is better - always being in bed/off work with migraines or forcing yourself to be self disciplined about exercise and eating? I'd choose the latter any day.

Equally important: focus on a really regular daily routine. Get up at the same time (no weekend lie-ins), eat and drink at approximately the same times every day, cut out alcohol totally, cut right down on caffeine (1-2 drinks a day max), go to bed the same time...it's all do-able. If your friends don't want to fit with your new regimented lifestyle, get new friends. I found mine were happy to eat out early if that's what I needed to do, for instance. If you explain to friends and family why you need to do this they will understand, especially if they have seen you in the middle of a migraine attack.