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
Written by
Beeson
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Gosh, that sounds like you have really been through the mill. I can understand you thinking it may be worth seeing what life is like without your epilepsy medicine.
I was very relieved to read that you would only do this slowly. It is essential do this under medical supervision though. If you try to reduce any one of them too quickly, this could make you very poorly.
The only other thing I am wondering is if you have ever been to a specialist epilepsy centre for a reassessment? It is not necessarily easy to get a referral to one of these centres. But you could discuss this possibility with your family doctor or epilepsy specialist.
I don’t know exactly where you are in the UK. But places like the William Gowers Centre or the David Lewis Centre offer the possibility of a complete re-assessment of your condition. For some people who have understood for years that they have drug resistant epilepsy, it turns out that they have non-epileptic attack disorder. Or it may be that they have an idea of another epilepsy medicine it may be worth your while to try.
Friend, I know how you feel! I have drug resistant epilepsy. I was born with it, will be 50 this year, have been on at least 16 different medications; currently on Keppra and Eslicarbazepine. In November I went for 2 weeks of videotelemetry; had suspected all my life and now was proved that I have tonic clonic on the left side and simple and complex on the right side of the brain. Yesterday I went to the specialist; she was staring at me in wonder and amazement - thinking "how on earth do you do this? I haven't got anything left for you!" I am on my second vagal nerve stimulator; the VNS nurse came in and placed the little computer over my VNS, stared, and said, "Your battery is on red; I will tell the surgeon!" The first VNS lasted 10 years - this one has lasted only five! This last month I have had such quick seizures that I have had to press my lifeline button and have the ambulance out four times! The doctors have nothing left to try with me! I have auras every day, and simple and complex quite often. Last Tuesday, my carer rang the doorbell twice, and didn't get an answer. She got the key out of the safe in front, unlocked the door and found me on the sofa with a blue face having a complex or a tonic clonic! It seems to happen often with me! Take care! Don't give up! There are new drugs coming out soon. A sister drug to Keppra - named something like Revotriracetam. Animal trials have been done on a drug with a trace of cannabis in it - with almost 100% success! The only problem is that they don't want to let the cannabis in! Take care. Rob.
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