Has anyone tried anything to prevent seizures without drugs? Eg: ketogenic diet, etc. Information about your preventions etc would be great!

[Rosalia]

[Hidden]

Hi Rosalia, Regret, I am allergic to wheat, dairy and protein so have never tried the Ketogenic Diet. Many people have mixed feelings about the diet... For some it works, for some it doesn't but I also think it depends on what type of epilepsy one has. I suggest you speak to your Neurologist or Doctor before trying anything first. If you decide to go ahead, good luck and keep me posted on progress!

[EpilepsyInst Partner Epilepsy Research UK]

Dear Rosalia, anti-epileptic drugs are the first line treatment for epilepsy, and must be taken as instructed by a neurologist. No attempt to come of medication must be made without the consent and supervision of a neurologist. The ketogenic diet has shown efficacy in some children with epilepsy who do not respond to anti-epileptic drugs alone. It is a prescribed treatment that must not be tried without medical supervision, and it is given along side medication. It has not yet shown efficacy in adults, although this may be because it is difficult to stick to. Research is currently ongoing to find out what it is about the ketogenic diet that controls seizures; so that a drug based on this can potentially be developed.

[Rosalia]

Thank you both for your answers, I'm not going to try it alone, I am going to speak to my specialist first! I just wondered if anyone had experienced any success on remedies/ketogenic diet instead of medication. I just think that altering something in your life is better than filling your system with powerful drugs. I am seeing my specialist in June, so I'll keep you posted with her views! Thank you x

[Ruthie52]

Hi, you need to go to the Matthew's Friends website, which will tell you all you need to know. Definitely to be planned by a nutritionist trained in this diet. Many Paediatric neurology departments in major hospitals have this advice available.

[AmyBadd]

Hi Rosalia,

I don't know what your situation is but when I was diagnosed with Epilepsy at age 14 my parents were also keep not have my body pumped full of drugs and I agreed with them. However, my epilepsy just got worse and it wasn't until I was 19 and it was clear I was never going to "grow out of it" that I eventually started trying meds. However, the first couple I was put on didn't help and by the time it was actually controlled I was 21 and my uni work was seriously suffering from me having at least one grand mal/tonic-clonic seizure every couple of weeks and absence seizures and myoclonic jerks pretty much daily.

I just want to say be careful putting off taking meds. Having large episodes such as a tonic-clonic seizure puts a huge strain on your body and personally I am happier having some chemicals in my body than not knowing what is going on for hours at time and suffering from crippling headaches after a seizure, not to mention the longer-lasting effects such as not being able to talk properly for several days because of having half-eaten my own tongue and scars from cutting and scratching myself.

Amy

[Rosalia in reply to AmyBadd]

Oh, I understand exactly what you mean, it sounds like its been pretty rough for you that's really useful though, are you on drugs now? x

[AmyBadd in reply to Rosalia]

Yes, and my epilepsy is fully controlled. After trying Keppra and Lamotrigine which didn't work for me, I was finally put on Epilim Chrono.

Thanks to my epilepsy being controlled, I am getting towards the end of a PhD and I recently got married. Only problem with taking Epilim is that I'd like to have children soon and there is some evidence to suggest that it might cause problems. I've already lowered my dosage and so this risk should be reduced (see the thread about this if you're interested).

Good luck for the future!

[Rosalia in reply to AmyBadd]

That's really good to hear! Aw! I hope you have a long and happy marriage yeah a lot of anticonvulsants can cause issues with having children, although a friend of mine stopped taking medication whilst being pregnant (approved by a doctor) and then ended up not having to take medication ever again after the birth?! So odd how the body works! Talk to your doctor about it, I'm pretty sure they sometimes change your drug to a lower risk one! Congratulations on your qualifications too! Good luck to you also x

[Chimbelina in reply to AmyBadd]

Well done for continuing with your academic studies!

[Chimbelina]

I have also considered the kinetic diet for my son as medication changers who he is. I wish they would hurry up and develop the epilepsy patch.