not happy FITS/PAIN

how do i cope..no sleep and very bad fits last night..my family are not happy as well,keep them up,when i come out of a fit the fribo is even worse..because of the movements in the fits..but threre is nothing anybody can do five differant types of epilpsy and fribo don't help..i just have to get on with it..iam on so many tabs but to no avail they just don't work thank god iam on here this takes my mine off it for a while..THANKS GUYS

bob xxx

11 Replies

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  • Sorry to hear you had such a bad night Bob. Your family should be supporting you , being ill isn't your fault.

    If the epilepsy drugs haven't / aren't working then you need to keep on at your GP to try something else . As with most conditions, levels and changes of meds are often needed until the right dose is found for you . Are there any surgical interventions they could try ?

    Are you a member of any epilepsy support groups ?

    Gentle hugs for you.

    Helen xx

  • hi helen,epilpsy i have had for twenty been on all sorts of drugs i have a consultant at hospital who can't control it there are no surgical interventions possible..iam a member of a local support group they do help just don't know what else to do at the mo

    bob xxx

  • It sounds like you're doing all you can Bob , I do think your family should be a little more understanding though . Supportive people around you makes a huge difference.

    As well as a local support group, have you looked for online support groups ? Often there are people around 24/7 on these to chat to , especially helpful when you can't sleep.

    Hugs

    xx

  • im at present awating a firm dx of epilepsy, I have seizures in my sleep, I bite my tongue, so thats now covered in cuts and scars, so I can relate to what your saying, matbe you need a meds reveiw

  • I have nocturnal epilepsy, fortunately seizure free for about 15 years. The inside of my mouth was a mess. I used to wake up with a metallic taste in my mouth and blood on my pillow cos I was biting my tongue but didn't realise the cause.

    You probably know this anyway but if you drive, be prepared to lose your licence for around 12 months (you are actually supposed to stop driving as soon as you have had any type of seizure). If someone continues to drive after a seizure and fails to inform DVLA then their licence isn't valid. I had to be seizure free for 12 months before I could get a limited licence (when I got it back I was only allowed it for 3 years - I think I had to be seizure free for 5 years before I got my full one back). My insurance company premiums went up a wee bit when I started driving again but by the time I could afford another car it had been about 3 years anyway.

    During the time I was unable to drive my local authority allowed me a concessionary bus pass & taxi vouchers.

    I had the usual starter anti-convulsants, Sodium Valproate and Carbamazepine (Tegretol) before going on to Lamotrigene (Lamictal). I was among first to be put on the Lamotrigene & it was great not to have all the woolly-headed side effects I had with the other two - even walking felt weird!

  • hi,and thanks..i don't drive they took my licence away in 1990 when i had my frist fit...because of the epilpsy been on to many meds none work for me i to have been on what you say above but no good for me..

    thanks

    bob xx

  • hello bobajob I know how you feel my son has epilepsy and he has different ones your family should be more helpful what meds are you on and how long have you had epilepsy my son was 7 when he had his first he his 15 now he has bout 35 to 40 a month now in the beginning he was having 200 plus he cannot go out on his own because we dont get any warning I wish I could be more help to you take care love beth xx

  • hi beth,many thanks...sorry to hear you son as epilpsy..my family are thire for me when i need them sorry for missleading you on that..i have had epilpsy since 1990..got blew up in a gas explosion knocked out burnt ...at the mo iam on epilim 1500 a day also keppra 250 six times a day iam the same cannot go out on my own.cook a meal i know its hard but have to carry on

    best wishes

    bob xx

  • hi bobajob my son is on epilim & toparmite caps he was on keppra but it did nothing for him at one point he was on 3 lots of meds but do you know something he is the most caring boy you could wish to meet (I know I am his mum but a lot of people say that )any way you take care you should see your dr or if you have an epilpsy nurse about your meds love beth x

  • Sorry to hear you're having such a rough time of it, you can't help having the fits or chose when you have them, just a pity you're not getting the support you need when you need it most.

  • hi thanks for reply its nice to here that people care i like being here...but they are trying to take it awat from me not family.. bloody docs what do they know what i like od them..they are not going to take this away

    bob xx

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