intractable?

[bronwyn]

Or something? :soap:

I was sent to a specialist on Monday by my neuro & after looking over my history (& all the many meds I've been on the past year & 1/2) he told me I was, in his opinion, intractable. A.k.a. drug resistant. In his experience ppl tend to become stable after changing meds 2 to 3 times.

I haven't had a seizure in over 8 months, but about every month or so I start to have funny symptoms (flushing, nausea, deja vu, etc.). He told me these would be considered an aura before a seizure. I call my neuro & she ups my meds, or changes them altogether. I've changed meds about 6 times & was given the option to have many more tests & even surgery. I want NONE of that, but now worry.

I've been stable for the longest length of time since finding out I had EP. But all his theories & "options" have made me paranoid that I'll truly never be at a functional level. I'm legal to drive again but have chosen not to because just when I feel well enough, my symptoms come back. I've been out of work for over a year & basically have very little life. *sniff*

I guess I'm just curious as to what others here have experienced. My seizures seem to come from my right temporal lobe (simple partial). The specialist wants me to have surgery to have it removed. As a writer & creative person, I fear that I'll lose some of that ability if I do.

Sorry for rambling on, but I'd appreciate any feedback...
Thanx *<)
:e:

 

[Bernard]

Hi bronwyn, welcome to the forum. :hello:

I don't like labeling seizure disorders as "intractable". There are more options out there than just drugs. And failing just 2-3 doesn't mean #4 wouldn't work. See here:

http://www.coping-with-epilepsy.com/forums/f22/drug-resistant-epilepsy-1161/

I'd suggest looking into diets, neurobehavioral therapy and/or EEG neurofeedback if you don't want to change your current AED regimen. Have a look here:

http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[bronwyn]

Hi, Bernard, thanx 4 the welcome. :shake:

Interesting thread. I'll have to look into some of those suggestions. Everyone around here seems pretty knowledgable. (More than the specialist I saw :razz2: )

Glad to see there's hope outside Drs offices.

Thanx 4 the encouragement!

 

[brain]

:hello: Browyn!

Welcome to CWE! It would take many years for
one to be declared "intractable or refractory".
For I personally, have difficulties in believing for
one individual to go through several medications
and then be "slammed" as such is sort of "out of
the league" in my own personal opinion.

Especially to the fact I've been born with this and
it was years before they've ever even declared me
intractable!

But as Bernard has even declared it ... "The well has
not run dry ..." there are many options and as well
as other availabilities out there. I am a strong advocate
of 2nd opinions, in which I strongly recommend!