Genetic epilepsy

[bevjane74]

Hi, it's my first.time posting in this forum as I've been researching all the information i can myself to try and get a clearer picture and wondering if any members can give me some advice - I'm 43 years young, had epilepsy all my life diagnosed at 11 with primary generalised epilepsy, this was after years of being told i was " doing it for attention and I'll grow out of it" in my 20s the same thing happened being then told it seemed as if it was psychological, after a sleep deprived EEG i was diagnosed again with primary generalised epilepsy - I at this point lost trust.with my consultants and asked my GP to deal with my epilepsy - recently my seizures started getting worse i suffer from absence seizures and partial seizures where my legs kick.violently, so I went to see a fresh consultant in february this year, he thinks i have a genetic form of epilepsy (GLUT1) I've researched this condition while awaiting blood test results and i seem to have a lot of traits of dravets syndrome - I also have a myriad of connective tissue diseases and auto immune illnesses - which after reading up on dravets can be caused by this form of epilepsy (how, i have no clue) my concern is the doctor is wanting to put me on a ketogenic diet (which I feel I'm rrally going to struggle with) and I'm not sure at 43 years of age that this diet is going to be effective, as the brain has been effected by my epilepsy for so long, and going onto a high fat diet could actually make my other illnesses worse, I'm just looking for any other information and any advice from people in the same boat (if there are any) - I'm so sorry for the massive post and thank you for your patience reading it - looking forward to reading some feedback and again thank you in advance

Regards

[EpilepsyAction1 Partner Epilepsy Action]

Hi bevjane74

Thanks for posting. Welcome to HealthUnlocked!

I hope you get some responses from our forum members soon, but you might also find it helpful to read our information about the ketogenic diet if you haven’t seen it already: epilepsy.org.uk/info/treatm...

You could also speak to the charity Matthew’s Friends. They specialise in information and research into ketogenic therapies and may be able to help you weigh up the pros and cons of trying the diet. Their website is: matthewsfriends.org/

Best wishes

Grace

Epilepsy Action Helpline Team

[bevjane74 in reply to EpilepsyAction1]

Thank you for your response, I'll look at getting in touch with matthews friends I've read what seems like endless reams of information on the ketogenic diet and there doesn't seem to be any information for whether it would make my other illnesses worse

Thanks and regards

[Paul72]

Hi Bevjane74,

I realise you posted a while ago but my wife has had severe epilepsy since she was 7 (now 46) this diet was suggested to us as everything else has failed from medication through to surgeries. My wife does need 24 hr care nowadays as she has seizures most days mostly complex partials, absences and Atonics , these attacks can also cluster meaning she requires rescue medication. I hope things are a bit better for you now.

Paul