I had a neurology appointment Wednesday morning and I'm now classed as having a refractory Epilepsy that may well be drug-resistant. If there's one thing that I have requested of my neurology team is that they are honest and if needs be frank with me something thankfully they have learnt to be.
Once I got around the original person who invited me into the little room for my appointment (long story which wouldn't be fair to put on here) but lets just say I will not be seeing that person again. Anyway once my actual neurologist was in the room we sat together and went through recent notes, seizure diary and he watched recent video's of my seizures that have been caught by people. My notes from my last appointment in September however have completely vanished... there's absolutely nothing on the system, as if I never went in?? Very strange and believe me neither I nor my doctor were very impressed! After going through everything we came to several conclusions as to what will happen next.
Despite worries that medication may not work for me for now I'm being tried on Eslicarbazepine Acetate (Zebinix) which is actually a medicine I have never heard of before! It's prescribed to adults with refractory partial seizures with or without secondary generalisation. I of course come under the title of "with secondary generalisation" as my partial seizures often run into Tonic Clonic seizures. He printed off the prescription straight away and handed me the paper to take down to the hospital pharmacy. Normally I have to take the to my general doctor and wait for the pharmacy to process it. So I able started the medicine the night of my appointment. All I can do is hope that it works or at least lessens seizures a bit, either in their frequency or intensity.
I am to have a fresh MRI scan as he is sure there is a cause for my seizures and he reckons it's in the left side of my brain. He told me in a follow up email today that this is due to the presentation of my seizures in that most of the movement it focused to the right hand side of my body. My last MRI was 2 1/2 years ago and he wants to compare that one with a new one. I've had various CT scans but they don't provide a detailed enough image.
He has also now reffered me to a specialist neurology centre to carry on my care. I have a very "complex" case and need to take things a step further to confirm if I do indeed have a drug-resistant Epilepsy. For now though I will wait and see if these new tablets make any difference and carry on my life. I have to say I will miss my current neurologist as he knows how to listen when needed, show interest and realise that I can have a say in my care but perhaps most importantly he is honest. Something that is invaluable when it feels like your life is completely out of your hands.
Jade, my seizures are retracrtable. You might have a loooooooong road ahead of you, but don't give up! I finally found a drug that works pretty good for me (but has really crummy after effects:
ReplyDeletedrowsiness, dizziness and vertigo, confusion, and slurred speech. Less common side effects included tremor, memory loss, gait disturbances, and double vision)
and I've got the, ALL. So, I am being brave, and tough.
Hang in there!!
Hi, I've been reading your blog for a while. I have a drug-resistant epilepsy, which is frustrating but there's nothing to do about it. I take 3 different meds and have the VNS, but still having seizures almost every day. My neuro says there's no more drugs to take - I've tried them all. But you gotta hang on the hope and enjoy the little moments without seizures. Hours, days, anything.
ReplyDeleteBe brave! The new med can be helpful!
Ack! It bugs me when people say that there is nothing to do about it. I'm teaching a webinar on exercises for epilepsy tonight. Here is a link -http://gowoa.me/i/8ZG I also have a blog about improving seizure control through natural means. Stay positive!
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