At what point is epilepsy considered refractory?

[Loopy Lou]

I only ask because i realised it's now been 8 years since i was first diagnosed with epilepsy, and i don't seem to be much better off in terms of absences and partials. I'd say the amount of tonic clonics i have has decreased however.

I think that during the summer holidays i'll take the increase in meds i was advised to take, who knows, it may make a difference.

Had a reaaaally bad day today, loads of blanks. It was noticeable to other people, and i guess i'm feeling rather fed up tonight onder:

 

[Cint]

Usually the docs say a person is "refractory" after they've tried 2-3 meds, without any improvement. Here is what the International League Against Epilepsy says:

http://www.epilepsy.com/learn/refractory-epilepsy

The International League Against Epilepsy (ILAE) has proposed the following definition of drug resistant epilepsy and suggests that this term be used instead of the term 'refractory epilepsy'.
Drug resistant epilepsy occurs when a person has failed to become (and stay) seizure free with adequate trials of two seizure medications (called AEDs).
These seizure medications must have been chosen appropriately for the person’s seizure type, tolerated by the person, and tried alone or together with other seizure medications.

 

[Loopy Lou]

Oh, i see! Hmm i think i remember my neuro mentioning that i could be drug resistant, because i've tried quite a few now *tries to count* i can't remember, i think i'm on my fourth and fifth ones now, maybe 5th and 6th.

Didn't occur to me that drug resistant is the same as refractory. Ah well, not gonna give up just yet, was just a really bad day! Also, i'm minus some finger prints since this afternoon after a minor mishap in the lab. Had a partial whilst transferring some sodium hydroxide (strong alkaline) and managed to spill it, then in my infinite wisdom and brain fuzz, tried to wipe it up with a paper towel like water >.<

I just hope it can get sorted, otherwise my future career plans could be a bit dicey

Don't particularly want the neuro to give up on me as drug resistant, because i really don't know where i'd go from there. Thanks for the link, i'll have a proper read of it now

 

[Hobbes]

It is a high time to get a second look by an epileptologist.

 

[Belinda5000]

When a person is resistant to 2-3 medications. I'm resistant to every drug in one family except the original one.

 

[Loopy Lou]

There's very few epileptologists in the UK, and a quick search is telling me that there isn't one which is reachable for me, even if i did manage to get a referral (which could take years).

I mean, my neurologist is pretty good, and it's the neurology centre of the north west, but i don't know where it goes from now. I think my next appointment should be due sometime in April so i'll have to figure out what to say to him and ask where this is likely to lead.

I get so fed up sometimes. Sorry, having a real "why me" day, i'll probably get over it by tomorrow.

 

[Music36]

Loopy Lou,

Surgery may be an option. I don't know if they're performing epilepsy laser ablation surgery in the UK, yet. I had it last year in the states. It's less invasive than a traditional lobectomy. Don't get me wrong. It's still brain surgery. Anyways, you may want to consider surgery and find out if you would be a candidate.