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Topiramate and not eating, is this normal?

Posted , 3 users are following.

sarahj1983
sarahj1983

I have been getting headaches/migraines for 12 years and i went to get my eyes tested like i do every 2 years, they sent me to hospital and when i got there i had scans and lumber puncures done and i was told i had iih so i was put on Topiramate. This was 3 months ago. I am on 50mg in the morning and 50mg at night, for the last 2 weeks i have had very bad stomach cramps when i eat (and that isn't often as i don't have an apitite) I have lost 13lb in this time too. I can't complain about that really as i need to loose a lot of weight as i was told that would help with the headaches. I suppose it feels like i've had a gastric band because eating a bowl of cereal will fill me up now, but will also give me stomach pains, is this normal? I told my neurologist and she didn't seem to take much notice and just said to carry on with them. I am also on amitriptyline 10mg. Thank you, Sarah.

1 like, 3 replies

3 Replies

  • YorkshireLass1
    YorkshireLass1 sarahj1983

    Posted

    Hi Sarah

    I think most people on here will tell you topiramate is a lethal drug and most of us now avoid it because of the awful side effects we have had and are still having. I myself lost a lot of weight which was good, but was taken off them abruptly because my neuro thought I had SJS, my symptoms were constant sore throats. Please get a 2nd opinion because when my symptoms started I saw 3 GPs and they all fobbed me off and told me to go away, it wasn't until I paid out to see my neuro that he told me the potentially bad news. If I hadn't kept on at them and listened to my body, because let's face it we know out bodies the best, I might not be here now, because SJS can be fatal.  I didn't have any gastric problems like you, but we all react differently, so please don't leave it.  I also tried amitriptyline and propanolol and neither worked for me.

    • sarahj1983
      sarahj1983 YorkshireLass1

      Posted

      Thanks for your feedback, I haven't actually seen a doctor since I started on the meds just my neurologist twice. I rang the doctors but they couldn't get me in so just prescribed me a higher dose of topamax over the phone and gave me Lansoprazole 30mg for my indigestion. I'm thinking of changing doctors as they are terrible. I will definitely think about coming off topamax now, I have been reading up alot about them and they don't sound so great. It's strange, I've had a terrible 3 months with side effects but if I don't eat grease or too much I don't feel to bad and all the side effects have gone now.

      Thanks again. Sarah.

  • kellyzboyz
    kellyzboyz sarahj1983

    Posted

    I had the same exact problem while on Topamax. The pain became so bad that I stopped eating altogether. I lost about 60 lbs. in just a few months. I also got a lot of other nasty side effects. Be sure to read what all of the side effects are so you'll know what is going on if you start getting any of the others! There is a long list of nasty side effects so be careful!

    I wish you the best with finding something to help with your migraines! I get migraines also and I know how terrible they can be!!!

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