eplilepsy drugs for migraine and othe... - National Migraine...

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eplilepsy drugs for migraine and other peoples attitudes

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13 Replies

Hello everyone. I have suffered with chronic migraine for a few decades, has anyone tried epilim, a epilepsy drug/ I have been taking it for a few weeks and I have barely had a headache and no migraines, except for a couple that made me feel strange but didn't give me pain. whilst I'm on here, what is the worse 'abuse' anyone has had from work mates or management? my last employer asked me to try not to get any more as I was having too many and my foreman couldn't understand why an f'@ck@n headache would make me want to go home I'm out of that place now but apparently fit to work!

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13 Replies

Hi, I tried epilim but had many side effects and it didn't reduce the headaches. Ended up on Topiramate, still had some side effects but it did reduce the pain. I came off that when I had successful botox injections. Just shows how different we all are I guess.

Due to sickness I was managed under the "Positive Management of Attendance Policy" which I didn't find very positive! I was told I had to have no sickness days off for the next year! How I managed it I don't know! Well I will never work under that pressure again.

It's like they think you choose to have migraine and be off sick when we would all rather be pain free and at work.

graygray profile image
graygray in reply to

It's very hard to explain to people what migraine is like, mainly because people won't listen. I told my Dr early this year that if my arms or legs gave me as much pain I would tell him to cut it off, we did both agree that although it would work if he cut my head off it wouldn't really be practical!

I was told to not take time off but I ignored them, in the end they paid me to leave and I went on ESA then I was took off it because they found me fit to work, my dr was not happy

tassie profile image
tassie

I was prescribed epilim but only took one tablet as it caused stomach pain, twitching and a sudden decrease in sight. I am sensitive to a lot of medications and most foods so its a battle. I'm really hoping to find an answer that doesn't involve drugs as drugs for me tend to cause more problems than they solve.

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graygray in reply to tassie

I had some unpleasant side effects on some drugs I was taking so I came off them for a while but I went back on them because nothing else seemed to work and I had no trouble, as I must have built a tolerance up.

amateurwriter profile image
amateurwriter

Hi,

a few days late but I have only seen your post, I haven't tried that epilepsy medication I tried gabapentin another epilepsy medication, that sort of helped but not much, but now that I'm off them, my migraines seem to be more under control still there 24/7 and don't know when they will go.

I go to this work programme and my advisor there has blatantly said that I'm making my migraines up and I made up my accident up which is the cause of my migraines in the first place. I'm also classed as fit to work even though I'm slightly brain damaged from my accident.

Glad to hear that someone on here is able to manage their migraines. :) and I hope the next boss you get is more understanding of your migraines.

Amateur

Girlygirly2006 profile image
Girlygirly2006 in reply to amateurwriter

Hi Sorry to hear about your problems and that your suffering too I'm also on neurontin but only just started them so not sure whether they will work as yet at present I do have pain and very much on a daily basis I too are on ESA and they are trying to "help" me back to work though I have no idea who would want to employ someone who has daily attacks and cannot function throughout the day and has to be drugged up all the time!! Sighhhh anyway it's a constant battle I know and people that think it's (just a headache) have NO idea what's it like!!! I too have felt like ripping my head off gladly to stop the pain!!! I don't know where to turn next!!! I just hope something will work soon!!! Good luck to you and I hope the future is brighter soon:)

amateurwriter profile image
amateurwriter in reply to Girlygirly2006

Thank you. :)

I only get JSA because I had a really rubbish doctor when I first signed on that would give sick notes to people who aren't sick but not to people who are sick, but since then I have changed doctor's and don't see the point in changing my claim, even though these doctor's would give me a sick note for me to go on ESA, my migraines happened due to a brain injury I had a few years back, the neurologist that I saw last diagnosed me with post trauma headaches and migraines, and they don't know when they will go if ever and will have some problems for the rest of my life, but I try to not let them bother me in my life.

I agree nobody who has never had a migraine before doesn't know what it's like to suffer with something as bad as migraine's or anything else that can't be seen.

I get a sense that the job centre don't really help you in getting back into work, it's a shame they don't help more for people like you and me who actually do want to work but because of one medical problem or another has had to stop working because of one reason or another. (hope that makes sense)

I want to become an author in the future.

I wish you all the luck for your future and hope it's brighter than it is now :)

graygray profile image
graygray in reply to amateurwriter

I meant to reply to thisl last week but after writing out the reply my phone crashed. If you are being treated in a bad way because of your condition it might be an idea to remind those people that under the 2011 discrimination act a migraine can be classes as a disability. Also you could point out that their remarks are a form of bullying and you will take further action if it continues.

amateurwriter profile image
amateurwriter in reply to graygray

I didn't know this, no doctor has told me anything about things like that, I have now been given a job but I'm a bit weary about it because people in the past few weeks have signed off and been sacked after a week, I have an appointment with a psychologist tomorrow at 10:30am and start my first shift at 7pm which doesn't finish until 7am the next day so am going to be awake for more than 24 hours tomorrow, not looking forward to that nearly managed to sort my night time routine out as well.

I am also going to book in to see the nurse for another appointment with a neurologist hopefully do a proper assessment for me and to actually help me rather than just chuck painkillers towards me and check my reflexes.

Thank you for the information, not sure if this is to me or to girlygirly2006 but it has helped me as well. :)

graygray profile image
graygray in reply to amateurwriter

That sounds like a hard day, its amazing how far you can go with just canals though, ive done it for a couple of days in one job. Stay focused on yourself dont let anyone suggest to you that your illness is less than it really is, joining a union at work may be a good idea, if you ever need back up they should be able to help. My union managed to to get me out of my last job with a months pay, which came in handy. I used up all my ssp and went on esa which made life easier.

graygray profile image
graygray in reply to graygray

I meant cat naps, my phone edited it for me!

amateurwriter profile image
amateurwriter in reply to graygray

To be honest, not sure I'll be able to cope as I'm still up and was up for around 20 hours yesterday without any sleep, just hope I get up to my alarm tomorrow, if not then I'm pretty much screwed for my appointment and I can't afford to miss it.

I will ask what the psychologist suggests tomorrow but thank you for that, I will ask about any unions I could join during my first shift. :)

graygray profile image
graygray in reply to amateurwriter

That sounds like a hard day, its amazing how far you can go with just canals though, ive done it for a couple of days in one job. Stay focused on yourself dont let anyone suggest to you that your illness is less than it really is, joining a union at work may be a good idea, if you ever need back up they should be able to help. My union managed to to get me out of my last job with a months pay, which came in handy. I used up all my ssp and went on esa which made life easier.

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