Any Positive thoughts on Topamax?

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I have been prescribed this today for migraines but all I have read is negative stories about taking the drug, does anyone have anything positive to say about it? I'm aware that it probably comes with side effects as like nearly all new tablets we have to take long term however all the negative comments are making me wonder if it's worth it at all? I don't know what could see worse side effects or daily chronic migraine!!??

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  • Posted

    Hi, I started about a year ago for mostly hormonal migraines, but they were starting to "branch" out. I've also had "regular" headaches most my life. I keep Excedrin Migraine in businesssmile I started out on 25mg and very gradually worked up to 150mg. The most annoying side effects included issues with word recall and trying to formulate my thoughts. This was a bit of a problem in the spring, as I teach online and that was a looonnngg semester to say the least. However, I did adjust. I also stopped dreaming, or don't remember them at any rate, and I used to dream in vivid detail. It does earn it's nickname, Dopamax. But, yes, it was worth it. The side effects have definitely faded (though still apparent) and though I still have some headaches they are nowhere near the intensity or frequency they were at before I started the medication. 

    Hope that helps some. If there's anything I could recommend, it would be to go slow and be patientsmile

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  • Posted

    Hi Emma I used these tablets and they gave me bad side effects so had to come of them

    I visited the National Migraine Clinic in London best thing I ever did they also have a Web site take a look

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    • Posted

      Did you have to pay to go the national migraine clinic and how do you get to see them.
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  • Posted

    Hi Emma

    I was on topiramate 2 years ago and have written about my experiences on here many times.  DO NOT use it, it is lethal and in my case if I'd continued it could have killed me.  The side effects can be debilitating and many people on here have had bad experiences.

    I believe in the USA it has already been banned or is in the process of being banned.

    I wouldn't bother if I was you, but you must do more research and read up on other people's experiences.

    Good Luck

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    • Posted

      It has not been banned in the USA. And have never heard that it will.  They have my som  taking it 100mg/day.......along with another powerful horrible drug.....resperidal !  It's a battle !

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    • Posted

      Not banned in USA I am in Kansas and been on it for 3 years now. Having some very bad side effects now doctor does not seem to care. I am sleeping like almost all the time now. my skin is dry and itchy  and on my head its pealing and red. I take 75 mg twice daily for nerve pain. 

      ​  Can anyone recommend anything else to switch to that does not cause weight gain. I hate the meds that cause rapid weight gain ( 9Xs out of 10 I am sensitive to those anyhow and have to stop them) .

       

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  • Posted

    Hi Emma

    I started taking Topiramate three weeks ago - 25mg at night - for migraines which were becoming significantly worse in frequency and intensity (twice a week, completely wiped out for 2-3 days at a time each, what a waste of a life).  For the first couple of weeks there were quite a few side effects (tingling in hands, word blindness, tiredness ++, apathy, spatial disturbance, lack of appetite) but these have reduced almost to nothing this week as my body has got used to it.  I'm a writer so the word blindness was a bit of a problem!  Migraines are much much less and the use of Sumitriptan as soon as the headache part starts means that they've not really been a problem at all for three weeks which has been wonderful.  I'll carry on taking the Topiramate unless the side effects increase again.  A lot of people really hate Topiramate but it really does depend on how the individual responds.

    Hope this helps and good luck with finding a preventative or cure for your migraines.

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  • Posted

    I was prescribe Topamax in January 2006. Prior to that I was suffering 2 or 3 migraines weekly. Topamax reduces that number to two in all of 2006! I was taking 25mgs twice daily. Side effects are as described above re: loss of words. (Difficult during a job interview).

    In the 10 years since migraines began returning a year or two ago with greater frequency. 2 or 3 per month. I increased the dosage to 50 mgs a.m. and at bedtime. It felt like my brain was in mud. Concentrating was very difficult so my doctor adjusted the dosage to spread it out over the day (including splitting pills in half). Now it's been about once a month (at or near a full moon!). Searching for words still a problem, but better than headaches. Good luck.

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  • Posted

    I have taken a lot of different migraine medications . This does help limit my migraines. The side effects are strange but tolerable. I did lose weight which is a bonus. Soda tastes terrible, but honestly I don't need to drink it so I don't. I feel weird aches or pains that last for around two weeks and then they go away. I am convinced they are all side effects. It might be my hip for two weeks and just as I am thinking maybe I should go see my doctor, it goes away. This week it is my jaw. It also seems like I can't always recall things as easily as I used to. I have suffered from migraines for about 18 years and with topamax it has cut the number of days in half and I take a Relpax and it usually goes away. Good luck.

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  • Posted

    I am replying to this thread, hoping that someone will respond quickly. I have only taken topirimate for two nights now (50 mg per night). The first night, it knocked me out and made me exhausted and stupid the next day. Last night, I had near seizures all night and didn't fall asleep until almost 4am and feel twitchy and horrible now. I am also on Concerta for ADD. I used to be on Topamax and was able to adjust o it fine, but after having a seizure a couple of years ago, I'm afraid I may be more prone to it affecting me differently. Will I be okay if I stop taking it immediately? Please help...

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    • Posted

      I would honestly ask your doctor. I don't have all the answers. From my personal experience I wouldn't think it would be bad to just stop since you were only taking it for two days, but I am surprised that they had you take 50 mg at a time. I started slowly working up from 25 mg. a day to 50 mg twice a day and that did not feel good, so I went back down to 50 mg one time a day and 25 mg one time a day and I have stayed with that for about 6 months now.

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  • Posted

    I was given Topamax for severe chronic migraines absolutely nothing would help it only Topamax stopped them but the negative effect it stopped my monthly and I just recently stopped it's been 14 months since I started I stopped 4 days ago it's worth a try I guess if you don't mind in regular or the possible of no ministral everybody is different though

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  • Posted

    I had migraine for 12 years. My migraine always started during the night. Almost every night around 3am.

    Over the years it became worse and over-the counter medication did not do it anymore.

    8 month ago I went to a neurologist and got Topiramate 100mg (take before sleep). I had almost no migraine since, except when I am ill for other reasons (allergy, cold...) then I take additional Sumatriptan.

    In the beginning there were some pins and needles but this went away.

    The biggest problem however is subtle and many people may do not notice it. I suspect that Topiramate causes lack of comprehension. I am an engineer and understanding complicated things is my life.

    The last 8 month I have become  ...stupid ... The only way for me to tell, is looking at the results of my work. I cannot get anything done. I have not finished any work in 8 month. I must get off this drug, but I do not want to live with the head-aches again. What to do?  Retire? and accept the fact that my life is over?

    Lately I have reduced the dose to 50mg and it seem to work. I know from years of experience with migraine that I sometimes can manage my illness. I am willing to do some compromises. 

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    • Posted

      john, lack of comprehension + lack of concentration + tireness + words not coming out... stupidness, i'm familiar with that.

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    • Posted

      John that is exactly what I have done, reduce the dosage. I was up to 100 Mg at one time. I worked my way slowly down to 50 mg. and it really has mostly reduced the migraines incredibly and totally eliminated the side effects. I am working my way slowly up to 75 mg so far only half the week to see if that eliminates them completely while still no side effects. Don't give up.

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    • Posted

      Trokendi XR really helped eliminate my side effects and my migraine control has been great.  It as like night and day from the generic topiramate. Something to consider. 

       

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    • Posted

      Hi Sara, what is trokendi XR? My neurologist wants me to start topirate for my migraines & to help with the weight I’ve gained from taking propranolol for 18 months but I’m really worried about the side affects - I’m a nurse (paediatric) and really can’t afford to have any stupid moments! Any help much appreciated! Thank u 

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