Drug Resistant Epilepsy - Best place for treatment?

Hi - 1st time posting here, but just after some advice. My 18yr daughter has generalised epilepsy diagnosed at 12 with TCs and absences. Been on numerous drugs plus the diet and nothing works. Absences are up to 100 a day and a TC can be anything from 8 weeks to 2 weeks apart. She is under the John Radcliffe. Before going off to uni next year, I just want to ensure that we're not missing a trick i.e. is this really as good as it's going to be or is somewhere like the National Epilepsy Centre in Chalfont better geared up to deal? People also keep mentioning the Brain Hospital in Bristol. I don't want to persuade her to go on a wild goose chase especially as she's busy enough with her studies and i know there isn't a miracle cure, but I just don't know what to do. I'd like to get her more stable before going off but I may be chasing a pipe dream.

10 Replies

  • You say she is drug resistant, but which drugs has she tried? What you describe sounds very similar to me at 18. Keppra and lamotrigine did not help me at all. Eventually, aged 20, I was put on epilim chrono (sodium valproate) which worked well. I actually went 7 years with no seizures whatsoever. The doctors were reluctant to put me on this AED as a young woman because it is known to increase risks of various problems when taken in pregnancy, however it turned out to be the only one that could help me.

  • Hi Amy, thanks for your reply. Sodium Valproate was the 1st one she tried. She's been on lamotrigine, keppra, clobazapam (something like that) and is currently on zonisamide and rufinamide. There are quite a few more but I can't remember them all off the top of my head. None of them helped, it's as though she takes smarties as the epilepsy just carries on regardless! Lou

  • That's awful :( I hope she finds something that works soon. Lifestyle makes a big difference too. My epilepsy was at its worst around that age because it's the time I had the most late nights (my main trigger is tiredness) and drank the most alcohol. Of course my family advised me to be sensible but I was determined to join in whatever my friends were doing. Having to leave parties early would have been devastating for me, so instead I got home late and had a tonic clonic seizure the next day. I know now how stupid that was but how many 18 year olds are 100% sensible?!

  • You're absolutely right Amy. And that's what we're battling with currently. She's actually said she'd rather live her life how she wants even if that means the worst happening. I understand how she must feel but as a parent that's so hard to hear and manage.

  • Have you asked if you could have a consultation at the Nationa Hospital for Neurology in Queen Sq London or Kings College Hospital Denmark Hill and ask if a VNS would help. A Vagus Nerve Stimulator similiar to a pacemaker for the heart. It may be a possibility. I wish you luck

  • Yes - check out if they will put her in line for a VNS! It has helped me! I am now on my third one! They should want to find out where the epilepsy is coming from first! Only then will they be able to decide regarding brain surgery. I have tried everything!

  • Hi, thanks for replying. I don't think she's eligible for surgery as she has generalised epilepsy so it doesn't come from a specific part - that's my understanding anyway but we will explore the VNS option and try that. It seems pointless having the downside of being on the meds without any of the upside in terms of control but then I guess we don't know if it'd be much worse without the meds.

  • Hi there, I know how it feels to be 18 and having tonic clonic seizures. I'm 27 now and after I hit 21 my epilepsy slowed down until recently and it has came back with a severe vengeance. I have tried numerous medications and I found the one that worked best was Tegretol, however, it has toxic side effects and I had to stop t and that's why I am where I am now. If you or your daughter want to talk I'm here to discuss anything you wish. I know how hard this is first hand. I went 6 years without a seizure on tegretol to going to 4 TC's a day and ive just got out of hospital.

    All the best x

  • Thank you for replying. You poor thing just out of hospital, to have gone 6 years as well. Are you now trying different meds? I keep hoping my daughter will get some control, 1st of all they said when she goes through puberty, then when she's finished with exams etc. etc. The problem is there's always something stressful to deal with as real life can't always run smoothly. We have been to docs and got a referral to the Epilepsy centre in Chalfont St Giles - not expecting a miracle, although that would be nice, but they specialise purely in epilepsy so may be able to offer some advice.

    Hope you feel better soon and have a good network of people around you who can help. x

  • I wish your daughter all the best. Like you said there is always something stressful to deal with, hopefully though her time will come soon where she can have a break. I really hope it goes well when she is seen at the Epilepsy Centre as well.

    I do have a brilliant support network around me which I couldn't be more grateful for. My mum is still by myself even though I'm 27! :)

    Thank you for your well wishes. I won't let this beat me and hopefully I will be feeling better soon. X

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