Pizotifen

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I've just returned from the doctor with a new med, Pizotifen. My migraines just got weirder this weekend ( I have aura but no headache ), I had 2 left sided attacks on Friday then on Saturday was doing the ironing when my vision went double then both eyeballs felt like they were being squeezed. I sat down, closed my eyes, no phosphene aura visible then opened them to be treated to insect world for 15 minutes - whole vision now divided into hexagons with double visionwhere they intersected. I'm used to mad vision attacks and dizzy attacks but that freaked me. Doctor reassured me it was an aura and suggested I try pizotifen to reduce the number of attacks ( I can't take propanolol ). How have others got on with this drug?

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  • Posted

    Hi Anne, I was on Pizotifen for about 2-3 years because I can't take Propranolol either. This was the best preventative medication that I had taken, I didn't have any side effects with it but it didn't reduce the frequency of my migraines just the intensity, so I was able to take just paracetamol to get rid of my headaches most of the time. I decided along with my GP that if this was the best it was going to get that it would probably be safer than having to keep taking sumatriptan, so I would live with it.

    But towards the end of last year my migraines returned to their previous pattern, 2/3 a week, paracetamol not working, so since then I have been on amitriptyline and apart from helping me sleep, have made little difference. Back to see GP next week for a review.

    Good luck

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    • Posted

      Thanks Kath, that's reassuring. I'm hoping it will reduce the frequency as I've had 5 attacks this month and am feeling a bit shattered. Taking the first one now so will see how it goes for a few months.

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  • Posted

    Sorry to hear of your worrying episode that must have been frightening for you any visual disturbances is worrying . See your doctor has tried you on pizotifen hope this works for your . I am on nortriptyline 30 mg a day but reducing to 20 mg and coming off it I must say it hasn’t helped the frequency of. Ingrained but has helped with severity but has made me put on weight so another reason for coming off it. I have also tried amitriptyline but that made me sleepy and also put on weight I have researched this pizotifen on line and I might ask my headache doctor if I could give this a go I have suffered with ,migraines  for years and have tried many a preventative but still have to take Zolmitriptan when I get them which is 1 - 2 a week I never know when I will get the next I can be ok in the morning then by lunch time I feel it come on I don’t get the aura just the pain in head on one side and the pain gets worse and then. Makes me feel,sick . I hope you get on ok with pizotifen 

    js 

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    • Posted

      Thank you. I've been told by my doctor that they work a bit like an antihistamine which is hopeful as actual antihistamines seem to reduce my migraine frequency. Will just have to try it for a few months and see what happens, hope it works for you too.

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    • Posted

      Just an update. I had to see a doctor yesterday and stop pizotifen as the side effects suddenly got worse. 2 weeks into taking it and I was doing ok, it didn't stop my auras but changed them to kaleidoscope ones which happened at night, I felt more sick than usual but that was it. Unfortunately 3 weeks in it made my face go numb, I got pins and needles inside my skull all the time not just during aura then Sunday night I felt really sick, went faint and ended up with an aura lasting over an hour with my old scintillating scotoma aura exploding worse than ever before. Felt terrible next day.

      Think I'll give up on meds as nothing seems to stop it and it just kicks back worse than ever. Doctor could only recommend triptans which, as I don't get a headache, wouldn't be much use.

      Really hope it works for you if you do try it, Anne x

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    • Posted

      Hi Rebecca,

      No I've never even got as far as a specialist let alone a scan. I have now given up on meds as nothing seems to stop the auras and I just get additional side effects. At the moment I'm trying special migralens glasses to wear indoors which cut out red and blue light, I haven't had them long enough to definitely say they help but I'm hopeful.

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  • Posted

    Hi Anne 

    I am not sure if this is allowed but there’s a great Facebook page that offers so much great information from a fast growing community made up of migraine sufferers.

    Migraine Cure 

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  • Posted

    Hello, i was on this drug for 5 years. i suffered severe hemiplegic migraines 3 times a week, i had to have a whole load of brain scans and had a tough time. this drug really settled my migraines down and kept them at bay, i had the odd hemiplegic migraine here and there but i managed to get a part of my life back, only issue i personally had with the drug is it made me very very tired and it made me put on ALOT of weight, i went from a size 6 to a size 12 in 5 months. it was savage, but everyone is different and it doesn't mean to say it will happen to you, but do be aware and dont be alarmed if you find yourself very very hungry, but do monitor it, if it gets out of hand like it did for me, then go back to your gp. at the time i was super desperate to control these horrendous migraines so i stuck with the medication smile but i will say the drug is amazing for controlling migraine. 

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    • Posted

      Glad you found something to help you I might give it a go I am coming off nortriptyline at moment so wait for that to clear then I will go,back to,doctor and chat about pizotifen I am always dubious about taking tablets for side effects but I guess you have to weight up the side effects to whether it helps with the horrible migraines 

      js

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    • Posted

      If light is a major trigger then I would recommend giving them a go, the best feature is the tinted lens on the side arm as having light reduced in my peripheral vision makes a big difference. I'm currently going round opticians begging them to make normal sunglasses with this feature as I could get prescription ones for driving then. The migralens are great for watching tv, looking at computer screens and just for wearing indoors on migraine days. They do have full uv protection but can't be used for driving unfortunately.

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