Just been prescibed topiramate, your thoughts...

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Hi everyone, I've suffered from menstrual migraines now for around 18 years and managed with prescibed migraine painkillers and over the counter tablets and also took my contraceptive pill 63 days consecutivley with a 7 day break which meant I only had 4-5 attacks a year, sometimes a 1 day attack and sometimes 2-3 days. The short version is I can no longer take any form of contraceptive pills to help keep attacks to a minimum.

After reading some of the discussions on here, I'm really in two minds whether I should start taking it, but if I keep having 1/2 days off work every 3/4 weeks, I'm also worried my employer will start maybe taking action(??)

Any advise would be great rolleyes thanks in advance.

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7 Replies

  • Posted

    Hi Lou

    I wouldn't touch the tablets again they nearly killed me and that is not an exageration, they are lethal and have way too many side effects, please read my post "Please be careful & watch your symptoms".  By all means try them out but you must be aware of any changes to your body. 

    I have had headaches/migraines for over 40 years and I'm only 47 now and nothing works, the topiramax was working but I had to come off it.  I've resigned myself to living with the headaches for the rest of my life

    Good luck

     

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    • Posted

      Hi again! I'm ten years older than you and assume I've gone through the change (!! not quite sure because I had an IUD fitted to manage migraines!!). Having suffered since the age of 2, I know just where you are and I want you to know it has been much better in the last few years. I am severely allergice to pink food colouring and that can bring one on along with stress but I don't get such bad pain now. I agree with everything you've said about the Topiramate.
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    • Posted

      Hi Again CC, I remember you mentioning the pink food thing, at least you have found something of a trigger, I have spent years trying to cut certain foods out and it doesn't matter if I ate chocolate and cheese all day and washed it down with a bottle of red wine some days I'd get a headache and other days I wouldn't.  As I said I have accepted it's part of my make up, just have to hope as I get older it might go away.  Doesn't help having a stressful job though!!!rolleyes
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  • Posted

    Dear lou76, It's hard to know what's good for one when it is bad for another but, after Id' stopped taking them, one Dr. at our practice described Topiramate as "a dirty drug" - she acknowledged there are lots of problems with it. When you say you can't take contraceptive "pills", does that mean you couldn't have an IUD or a 3 monthly contraceptive injection?  I found the City of London Migraine Clinic very helpful and they know more about menstrual migraine than most Drs.

    If you go on Topiramate just make sure you are aware of any changes in your body - from blurry eyes to odd speech problems, upset stomach ..... I must have had a dozen side effects from the list they give you but didn't realise it until I'd stopped taking them and also spent 3 years having investigations as the hospital to see what was wrong with me!! Why didn't they realise it could be drug side effects!?  By the wya, I assume you've used triptans - even the horrid  but effective diy injections?  GOOD LUCK  Lynn at Congreve Cottage

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    • Posted

      Hi,

      Thanks for advice, I'm going to go back to the doctor, I've tried the mini pill but not the injection, and all I did was constantly spot for nearly 6 months before I come off it as not worth being on the pill as my partner wouldn't come near me lol. Not sure if the injection is the same?? Had a bad experience with an IUD although wasn't hormone based and really don't want to go down that route again 😕 As for triptans, no I've not heard of them or been offered them unless they're what my doctor prescribed me then phoned me 5 minutes later because it didn't flag up my asthma and that I couldn't take them... I'll have a look on the London clinic website and see what they say, thanks. Think I need to do a lot of reading up and go back to the doctors or just mange them with painkillers and just hope my work understand.

      Thanks again and good luck.

      Lou

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  • Posted

    Hi Lou

    If you are only having one migraine a month, it seems really silly for you to go on Topiramate which I understand is really only for people with chronic migraine. I can have three or four migraines each week. I was prescribed Topiramate as a last resort by my neurologist. I took if for a couple of years and put up with some horrendous side effects, and in the end, since it did'nt really make any difference to the number of migraines I had each month or the pain level, I stopped taking it 6 months ago.

    Why don't you just take a triptan each month? 

     

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    • Posted

      Hi,

      Someone else mentioned triptans, but not sure if I can take them, I need to read up. My doctor prescribed me something then rang me saying don't take them because of my asthma, so not sure what they were but I know I could take them for the week leading up to my period to manage the migraine.

      Back to drawing board 😕

      Thanks!!!

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