Catamenial Epilepsy

Hi, my daughter is nearly 16 years old had her first seizure 3 years ago, all tests are "normal", I believe through research i have done and keeping a diary that my daughter has catamenial epilepsy, basically her dip in hormones are affecting her tolerance of seizures, progesterone in particular. Our problem is the neurologists will not help in anyway as said tests were normal, but she continues to have seizures which are focused around her monthly cycle, we are at a loss as what steps to next take. I have asked for a second opinion and a different neurologist but as of today we are being ignored, this is effecting my daughter's life in a very big way, we just want treatment and help for her, who do we turn to now, can anyone point us in the right direction

8 Replies

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  • I have eplipsy since the 90s but I have a very good consultant.

    I would make a complaint to the management of the hospital if you don't get anywhere with the complaint then take it further with the health services ombudsman.

    I do hope that your daughter and you get the answers you so rightfully need all the best of luck to you both.

    Bob.

  • Thank you

  • Hi,

    I'm very sorry to hear about your experiences. You most certainly should not be ignored. If your daughter is having seizures, no matter what is causing them you should be offered medicine to try and treat them.

    My epilepsy started when I was 14. At my local hospital there were no neurologists, so I saw a paediatrician with an interest in epilepsy. Well he may have had an interest but he was not trained and he put me on a medication that I was later told was not surprising that it didn't help the type of epilepsy I had.

    I would suggest that perhaps you could insist on being referred to a neurology team at a different hospital. It may be further to travel, but hopefully you'll only have to go once or twice a year, and it is your right on the NHS to do that (speak to your GP). Unfortunately though the referal may take a while. I recently moved house and have been waiting about 4 months for a referral to the local team :(

    Good luck,

    Amy

  • Thank you for your help

  • Hi, don't give up, I would go back to your GP with your diary of events and tell them that you are not satisfied and hope that they can refer your daughter to someone else, I have a lovely epilepsy nurse that I visit regularly at the hospital, I thought that my epilepsy was based around my monthly cycle but as I have a mirena coil I don't actually have periods so don't really know where I am in my monthly cycle but mine always seem to be around a similar date. I feel for you, your daughter is too young to be ignored, do not give up there is lots of help out there but you need to find someone sympathetic who will get her the help she needs. I wish you lots of luck. Bev

  • Thank you so much i will update later on today as i hope some progress has been made

  • Hi

    The replies are right. It is completely reasonable for you to push for some clarity about what is happening for your daughter.

    If the doctors don’t think it’s epilepsy but she is still having seizures, I wonder if they have talked about non-epileptic seizures?

    I wonder why your request for a second opinion is being ignored. If you have done this throughout the GP, then you could try talking to the practice manager at the surgery to see if they can help.

    If you have requested it through the neurologist, the you could talk to PALS. This is the patient advice and liaison service. They are based in most hospitals. They can help with making a complaint and hopefully getting you the service you need.

    I do hope you get some clear information soon.

    Regards

    Cherry

    Epilepsy Action Helpline Team

  • Thank you so much for your help

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