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Does anyone have any experience of topiramate?

Posted , 5 users are following.

amber1620
amber1620

Hi I have always suffered migraine and take amitryptyline but it's not very effective my doctor suggested topiramate but I don't know anything about it and wondered if anyone in here had any advice?

0 likes, 20 replies

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  • jolalala
    jolalala amber1620

    Posted

    Hi Jan

    I have taken part in previous threads on this forum regarding Topirimate/Topamax.  My experience was that, after three months, I was forced to desist taking them, abruptly, because of the serious cognitive problems they caused.  I feel I have never full regained my 'sharpness' and regret ever taking them.  Others who joined that thread had experienced very similar problems.  The drug did almost resolve the migraines at the same time.

    Everyone is different and I couldn't say how this drug would affect you, it may be very successful.  I did find two years full relief by taking epilim, if that is any help?  Currently I have only a very basic regime and have had to adjust my lifestyle and live with acceptance.  My NHS neurologist wrote me off. 

    • amber1620
      amber1620 jolalala

      Posted

      Hi thanks for the good advice.  I've always been reluctant to take it and the doctors/neurologists always recommend it but they're not the ones taking it and suffering the side effects.  I too have adjusted my lifestyle and have learned to live with it for 40 years now and hoping it will eventually go away!  I think I will give the topiramate a miss thanks again.
    • amber1620
      amber1620 jolalala

      Posted

      I've heard about epilium but never tried it,did it stop your migraine? and what were the side effects? Did you come off it for any particular reason or just a break? thanks
    • jolalala
      jolalala amber1620

      Posted

      Hi again Jan

      Within 2 months of starting epilim my migraines had completely disappeared.  They returned after I inadvertantly started on another drug (for a completely unrelated condition) which interacted adversely with the epilim and ended its eficiacy completely.  I had no adverse side effects while on epilim.  I believe some people put on weight or have aggravated broken thread veins, but not me.

      I have retried it after leaving long gaps but it has never worked for me since that time.  I recommend that if anyone finds a 'keeper', they check carefully what drugs could potentially intefere.

    • amber1620
      amber1620 jolalala

      Posted

      Well that sounds promising and a drug that I will 

      certainly consider for future appreciate your advice 😀

  • YorkshireLass1
    YorkshireLass1 amber1620

    Posted

    Hi Janert

    Stay away from it, as Jolalala says a lot of people have been on here, me included, with nightmare stories, just check back on the forum and you will see. Me personally, it nearly killed me and I am NOT joking.  The GPs didn't care and also like Jolalala my neuro wrote me off, and I paid privately.  I am now not taking anything, had headaches/migraines for 40 years, only 48 now and have come to realise that no health professionals actually care, so I'm just fumbling along without any help hoping they will eventually disappear.

    • amber1620
      amber1620 YorkshireLass1

      Posted

      Hi YorkieLass,  I will check back on the forum for more info thanks.  I've also suffered menstrual migraine for 40 years and go through good & bad spells, amitryptyline just takes the edge of the frequency and severity.  Topiramate sounds horrendous and I think I can do without that and just hope that it won't last too many more years.  Only others that suffer migraine understand how it much it impacts your life! 
    • YorkshireLass1
      YorkshireLass1 amber1620

      Posted

      Hi Janet

      I've taken Amitriptyline and Propanolol, both didn't work, then he suggested epilim, but if you have Lupus they should not be taken, which I have, so I can't.  I had a hysterectomy when I was 30 and tbh I think they're worse now than before.  As you say no-one understands unless they are sufferers, because if you don't look ill that means you are not ill. I just take eletriptan now when I get an attack, they usually come in clusters so I end up taken about 5-6 in one week, but it's the only thing that works.

      Good luck, hope you find something that works smile

    • amber1620
      amber1620 YorkshireLass1

      Posted

      Hi I will certainly consider epilim as the options left are limited. I usually take imigran and it works along with a painkiller.  It's finding the best solution with the least side effects😊
  • Tezes
    Tezes amber1620

    Posted

    Same here were classed as menstraul migraine but now who knows??, I've gone through the the menopause with lots of people telling me they stop ! No such luck for me I still get a three day migraine once a month. Have tried all sorts of drugs to no avail. Currently take triptans but usually end up taking up to three per episode as they wear off afte,r between 6-12 hours.

    ive yet to meet anyone who has been 'cured' of migraine 😔

    • amber1620
      amber1620 Tezes

      Posted

      Tezes that's not so good my only hope was that they would eventually fade away when the menopause came, my neurologist said that since I didn't have migraine during pregnancy that it was a promising sign.
  • Tezes
    Tezes amber1620

    Posted

    I didn't have migraine during my three pregnancies but then I didn't start having them until my last child was 10 years old in 1995. I had been working for ten years on nights and then went onto full time days that's about when I had my first migraine. Don't know if that's why - my system was messed up I guess but I've had them every month since ! 

     

    • amber1620
      amber1620 Tezes

      Posted

      I guess it's just something we have to live with  I can only imagine the freedom others enjoy without the pain/sickness every week! I live in hope😀
  • StevenRose
    StevenRose amber1620

    Posted

    Well Janet, in my experience its an aweful drug, made me suicidal!  I am sure some people have got on ok with it though, but for me it was so bad.

    I have some sucess with Pregabalin 300mg 2xday and Verapamil240mg 3xday.

    Good luck

    • amber1620
      amber1620 StevenRose

      Posted

      Hi,from the response I've had from everyone I've not heard any good reports on it so I've made up my mind not to even consider trying it. Thanks for reply.
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