Should I stick with it?

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Hi, I have suffered from chronic headaches since about 10 years old and have always been fobbed off by doctors until I was 21 when I kept a headache diary. After trying a number of different medications (inc. Amitriptyline which did not work) and changing surgeries I've now been referred to a neurologist (I'm now 26). Three weeks ago I started Topirimate, starting at 25mg and to be increased weekly until I reach the max dosage of 500mg a day. So currently I'm on 75mg a day.

I am starting to be quite scatty and forgetful, I can find it quite hard to follow what people are saying. I'm getting pins and needles in my feet and I get really really itchy. I'm having mood swings, I quite often feel like I can't be bothered to do anything and today I'm feeling very down. I just want to know, is it worth sticking with? Will it get better? I'm on such a low dosage and have got a long way to go until I reach 500mg - on the plus side I'm down to 2 headaches a week so far...

I have read so much bad stuff about this medication! Has anybody had a good experience??

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12 Replies

  • Posted

    Hi QuirkyTurtle

    I think you'll struggle to find anyone that has had a good experience with Topirimate.  I had a near fatal experience a year ago and it frightened the life out of me and there are loads more people on here with similar stories of life changing conditions. 

    I too was put on Amitriptyline, also Propanolol and Epilim and none of them worked, so unfortunately I've had to resign myself to living with the damn headaches/migraines as I have for 40 years, because I don't believe anything will work.

    If you decide to continue PLEASE keep an eye on your symptoms and if you start to get sore throats and a bad taste in your mouth go immediately to your neuro and tell him, this happened to me for about 8 weeks and 3 GPs snubbed me and told me it was nothing, until I was forced to return to my neuro and I was told I could have Stephen Johnstone syndrome which is fatal, thankfully I was OK but it scared the living daylights out of me.

    Good luck

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    • Posted

      Thank you YorkieLass, I'm going to slow down on the increasing of the dosage and stick to 100mg for a couple of weeks and judge my symptoms from there. We'll see what happens...
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  • Posted

    I can't really help as to whether it's worth keeping going as I am where you are right now! I have just moved up to 75 mg a day and I'm finding it hard going and the migraines aren't going away either which doesn't help. I've been on Propranalol, Amitriptyline and this is the last drug I have to try before I get referred and I'm having a head CT next month.

    The worst side affects so far are pins and needles which are bad in the middle of the night and wake me up, mood swings, nausea and insomnia coupled with extreme tiredness but I can't sleep for a full night no matter how hard I try. This is turn causes the migraines to return as tiredness is a trigger for me. Today I had to take 200mg of Sumatriptan to get through the day and be functional. I have two young children and fortunately my normal job is freelance so I don't have to work. However, I have not been able to work for months now and I'm desperate to get my life back. This drug is not helping me do that!! I feel like a zombie and so isolated as my pain is worsened by this drug I'm sure of it.

    I don't want to get up to 500mg as I'm worried what else is will cause. I am going to call it quits at 200mg and start to wean off if it has not shown any improvements. So far I have not had any problems with my vision though. Anxiety and depression for sure though, it's ilke having permanent PMS!!!

    I'm starting to think nothing works for migraine prevention :-(

    Perhaps natural remedies are the way forward, have you tried any?

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    • Posted

      If I was you Susie, I'd come off them, your story is similar to mine, nothing works. 

      The only natural remedies I've tried have been feverfew, with no luck and I've also spent a fortune on accupuncture and kinesiology with the same results.  I've never had a scan and it's never been suggested even though I've seen 2 NHS consultants and am currently paying private and my private neuro has more or less washed his hands of me, that's the treatment you get for £100 a session (approx 10 mins).

      I'm just on my on my own now hoping they'll eventually disappear with age, I take eletriptan when I get an attack and they are the only thing that works, but there is a limit as to how many you can take.

      Hope you find something that works, but I think topiramate are way too dangerous, just be careful

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    • Posted

      That sounds like an awful lot of money for very little time! Have you considered hypnotherapy? A friend of mine has recently retrained as a hypnotherapist and she says she gets good results for people who suffer with migraine. It's on my list to try if I don't get anywhere with my CT's and neuro appointments. I am also going to consider Reflexology as I also know someone who had success with that. I am willing to try anything now as the preventative drugs are clearly not an option for me. I hate how bad the side affects are, they seem so dangerous and yet the GPs take it for granted that you will have to learn to live with the pain in some way.

      I have a follow up appointment with my GP next week and I'm now down to 25mg of Topiramate a day so I should be off it by next week, I feel better in myself but my migraines are no better and I'm back to taking Sumatriptan on a regular basis to survive. Rather that than insomnia, stomache cramps, mood swings, pins and needles in my hands and feet, cold sypmtoms, continual bowel movements etc etc. It's a vile drug and it doesn't even work! I dread to think what would have happened if I'd increased to a higher dose in the end.

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    • Posted

      I have considered hypnotherapy, but always been concerned whether they are reputable or not as they can obviously do a lot of damage.  My mum used one about 30 years ago and did get a good result, but the therapist has since died.  I may start having a look for another one. 

      Reflexology is a complete no no, I cannot stand anyone going anywhere near my feet and isn't that where all the work is done??

      You are right it is a vile drug and should be banned, hope you come off it OK.  I had to go cold turkey and it wasn't good, but thankfully I have no nasty side effects now.

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  • Posted

    Have look at my posts and you will see I only took 11 tablets over 8 days to have my life ruined by this drug.
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  • Posted

    Stop it now before it ruins your life. I have NOTHING good to say about Topiramate. The Dr thought I was suffering from Depressive Dementia, couldn't speak properly, couldn't find words. tired all the time - endless problems. I'm lucky I didn't lose my job........or my mind.
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  • Posted

    Hi, i am on 50mg morning and 50mg on a night and have been on them for 3 months now. My symptoms were shocking for those 3 months but i persevered and instead of having 5/6 really bad headaches a week I have maybe 1/2 mild ones now. Also i went to see my neurologist and my swelling has gone down so in 6 months i might be able to lower the dosage. I feel better than i have in 13 years from these tablets. Everyone is different though, good luck smile
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  • Posted

    Hi!

    I've been on Topamax/Topiramate for about 6 years now. I take it to reduce my migraine attacks AND to reduce the intensity of my never ending regular headache.

    And for me it works.

    I am currently on 25mg morning, 25 mg at night. I used to be on 100 a day, but talked my neurologist into a lower dosage as a trial to see if the effects would remain the same. In the end, because it worked, my neurologist has implimented a new regime with all his patients he puts on topamax. He starts them out on 10mg a day for a week, upping to 25, upping to 50, then to 75, then to 100. He keeps people at 100 for a year, then lowers the dosage to 50 a day.

    According to my neurologist, any dosage about 100 a day won;t give additional benifits for migraines, only for epileptic problems.

    In any case, I have gone from a migraine attack every other day, to an attack once or twice a month. And I can often get rid of that with my imigran pen.

    And yes, I do have side effect..... but I have either managed to live with them or work around them. Though I do realise that my side effects aren't as bad as some I've seen around here....

    My main problem is that I've had diarrhea ever since I started taking the topamax. I simply take immodium for that, which lessens the intestinal pains involved. I've recently learned that if I regulate my temperature better, the intestinal problems (and diarrhea) are less as well [more on the temperature in a bit]

    Then, I also have the 'word soup' problem, though not really as bad as I've heard others have it. I'm in luck, I speak several languages at native level...usually, if I don't know a word in one language, I usually know it in another language. And knowing it in that language often triggers it back in the language I was looking for.....

    I also have the pins and needles sensation in my fingers and toes sometimes... Or well.... I don't know if I would call it pins and needles....just a severely lessened sense of sensation.... or a dead feeling...

    Then, I am often quite tired..... There's about 3 days a week that I have to take naps during the day so I can keep functioning.

    Then last, but by no means least (as it affects me most, in certain ways) the topamax influences my body's ability to regulate temperature. And I'm not just talking about being able to sweat. (I don't easily sweat anymore....though I do when I get really hot). I'm talking about the temperature in my head. Yes, sounds nuts....but it's true....

    I notice problems when I don't help my body along with the temperature regulation in my head (and I help it along by putting a wet washcloth on my head while napping or sleeping). If I don't, my breathing becomes more difficult, I get irritable, my intestinal problems become worse, my regular headache becomes worse, all those kinds of things. I regulate with a wet washcloth, I don't have those problems as much.....

    Having said all this: I WILL NOT, nor would I want to, live without this drug anymore. Without it, I would be back to my migraines every other day. Now? I have a life, I have a job, and I am happy. Side-effects and all.....

     

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  • Posted

    Hi, so sorry you are experiencing all of this, and with kids to boot! I've been on this for about 6 months and it took me that long to get up to 150mg, with a reasonable amount of time to "adjust" to the lovely side effects. Namely the forgetfulness and drowsiness, tingliness, and dopey feeling. But I did adjust, and I've never felt better. And not just from the lack of migraines, but from daily headaches and I seem to have more energy. I had to really space out the increasing of the dosage though! Good luck! On the other hand, seem to have "adjusted" again, so think I need to move up again. Wondering how much more I will need....
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  • Posted

    The same thing happened to me had to com off them I couldn't take anymore I went to the National Migraine Clinic (look at website) best thing I ever did it's in London but it was so worth the journey
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