Seizures!!!!! Arggghhh!!!! ... :-(

[Beeson]

I am 33 years old and writing from the UK in the hope of possibly gaining some progress/information in the treatment of what appears to be drug resistant epilepsy.

Since June 2010 I have been diagnosed with epilepsy due to suspected encephalitis. (However this was never confirmed and no autoimmune virus found )

The frequency of my seizures is between 1 and 4 a DAY.

The types of my seizures vary anything between conscious, semi-unconscious and unconscious. Left side, right side. Partial and generalised. They last sometimes 30 seconds, 2minutes 4minutes. Sometimes requiring oxygen and hospital treatment.

However, not photosensitive or absence types.

I have had all the scans available. All of which have shown no evidence of tumour etc.

There appears to be no focal point (which is why I didn't really want to look into surgery).

I am currently taking Lamotrigine, Zonisamide and Clobazam. All of which I have decided to slowly come off and see what happens because no progress has been made.

I would really appreciate any feedback or information on research from anyone.

I believe I am a bit of a special case!!

Thanks

[Tdevilliers]

Hi - Im not a medical professional, but I do recommend you contact Dr James Butler, well known Neurologist/Epileptoligist in SA and located here in Cape Town. He will be able to give you sound advice. E-mail him on: [e-mail] or phone [phone]. Patients even travel from the countries such as the UK for neuro surgery in SA

Regards Tim

[Beeson in reply to Tdevilliers]

Thats great, Thank you Tim for your reply. I will try and contact him.

Many thanks

Daz

[besterliz]

Wow by the sounds of it you have been dealt a very crappy hand. The only advice i can give you as an epileptic person, turning 35 in January next year is, never go off any of your medication if you still having seizures, even if you don't get seizures, it is the medication that is helping / preventing it from coming.....i have been an epileptic person since 4 years old onwards. The only option is to stay on all your medications and never go off!!! Any person that is going through life with having seizures, must stay on their medication, even though you have been stabilized, never go off it!! First speak to your neurologist, before you take drastic measures by taking all the medication away. Let the neurologist make that decision for you, since they are very qualified to make that decision for patients, and if needs be, weening them off the pills, but first discuss it with the doctor It is very dangerous to make those decisions on your own accord, since the medication is not something you can just take away and putting it back so please consult your Doctor with these important decisions...Good luck Beeson with all the important decisions to make. Regards Lizelle Bester

[Beeson in reply to besterliz]

Hi Lizelle,

I really don't fancy surgery! I'm impressed you had the courage to go through all that. But then I suppose you diddnt have much choice. It is difficult to stay positive I admit.

Daz