[EsotericMan]

Hey all,
Just wanted to see if others are in the same boat as I am & what they're currently using for seizure control (&recrweation)
I have a seizure disorder starting in my right temporal lobe. been on tons of meds & none of them have successfully controlled my complex partial seizures. They are language based--I'm fully conscious during them-but I can't speak during them & they wear the shit out of me. Pot is the only thing that has demonstrated any positive effect--that is still limited.
I was going in for surgery over the summer but found I am one of the 3% of population that has speech & memory centers in both temporal lobes so the surgery has to be more invasive now
they are removing a section of my skull--installing electrodes on my brain taking me off meds & observing through EEg the activty. after about a week they are removing the elsectrodes after they decide exactly what tissue to ressect.
anyways I just wanted to know if anyone is in the same boat & what strains they were usin.
Also, I have done a lot of research & actually work in the field of neurological/emotional/behavioral disorders so I do have a lot to share if your interested as well.
so if ya want to yak or let me know what works for ya I'd love to hear from ya

[guineapig]

"my sex and my drugs and my rock and roll
all my brain and body neeeeeeeeeed...."

yes i have suffered several grand mal seizures and a few petite mal seizures.......i am still to this day unsure why they occurred.....i do have a history of very bad migraines like someone is piercing behind my left eye socket with an ice-pick.....i believe Cannabis has a neuroprotective effect and is effective for treating epilepsy.....maybe it is better for some forms of epilepsy vs. other forms......

i guess i also have a neuro/emo/behavioral disorder.....it is some sort of depression accompanied by a very mild psychosis but that term is so overplayed it hardly means a thing nowadays.....sometimes i agree with people who say they should throw the whole DSM categorizations out the window.......

mental illness is still a big-time stigma in this society and noone wants to admit their specific problems for fear of getting ostracized by friends, family, getting fired, getting bad insurance rates, etc.....i think that is so sad......oh well just my 2 cents.....

glad to meet another Janes Addiction fan......-gp out

[EsotericMan]

Are your seizures specific to an area---then generalized into (tonic-clonic) grand mals??
Mine start as complex partials in my right temporal lobe. they used to generalize into my frontal lobe as well---if I was asleep-----resulting in nocturnal tonic clonic seizures
those are currently controlled--but my complex partials are getting much worse. thus I empted for the surgery.

I also come packaged w/ a generalized mood disorder.
Being involved in the feild of treatment of these "disorders" for 15 years now, I ask the same questions, myself. I do realize though that disorders of this nature are merely caterogorizations of behavoirs that may be causal or symptomatic. there is much sharing of these behaviors among these catergories, also many people catergorized as normal (w/out a disorder) may exbitted these behaviors that could be catergorized. Hence the flaws.
(man its hard to type right now~~~~~~~~~~~)
yet these catergories can be usful when treating "disorders" if seeing /observing behaviors, making predictions, searching for possible solutions etc.
There is still a large element of trail & error however
Psychology & its related feilds are still the most subjective of all the sciences. Understood in this context it can be useful as a tool to objective observation.

my kid has epilepsy , has had many seizures , its pret ty scary , he hasnt been able to tell us anything about it until recently , how he feels and when they are coming on etc ... he does stabilize on epilum , but he can still have fits when he is scared , or when he has a high temperature ...
he seems to feel similar to how you guys have described , really wears him out afterwards , but when he comes around from the sleep he is very active and seems a bit more aware than before the fit ..
would be nice to know if a fit is coming on , or be able to stop them all together , we have thought we had lost him several times when he has stopped breathing etc ..
the doctors say its due to scar tissue from where he has had several operations to remove cysts on his brain when he was a baby ..

[guineapig]

oh man wally.....it is so werid to suddenly wake up with all of my friends having completely terrified looks on their faces and i had no idea what they were worried about.....it is like lost time- i have no memory of having "seized".....going to a hospital afterwards- for me anyway (i'm not an expert) was a big waste of time and money....afterwards a full body massage helps.....but somehow the seizures "reset" my brain and everything is fine afterwards, 'cept for some muscle tension all over......

just make sure to be aware certain variables that tend to induce seizures.....low on food, lack of sleep, high doses of caffeine, scary situations and stroboscopic light are a few of these variables.....any one variable might not trigger a seizure but combine three or four and you are on your way to seizure-town.....

hope it helps......i think cannabis helps too!!

[KingRalph]

best of luck Esoteric. i remember watching a special once, and after such an electrode monitoring surgery, the patient had constant seizures daily after the surgery that eventually became less frequent over a year or two. i dunno if the field has improved since then... but it didn't seem like multiplying the seizures for the person was a positive thing... more like the doctors takin a stab in the dark for information at the expense of a person... but any hope of improvement is healthy, i applaud your strengths

[EsotericMan]

sorry to hear Wally
Where is seizure focus area? what lobe?
Ever considered further surgery to ressect scar tissue? Usuallly has 50-70% chance of totally eliminating seizure activity & 70-90% of seriously impacting seizures. less than 1% of side effects

[EsotericMan]

KR methods have advanced over the past few years. Usually while monitoring the seizures do increase (ya want them to so they can monitor the activity & determine where they are coming from, what type of electrical activity etc.) but usually has very positive effect now

[EsotericMan]

also, now they do not become so invasive w/out extensive knowledge from other tests (i.e. eegs, MRIs CAT scans, PET scansetc.) I had a week of video EEg monitoring w/electrodes glued to my head to determine eligiblity for surgery after all these tests were completed.
I then had what was called a WADA test. A catheter was inserted into my femoral artery in groin (similiar to when an arterioplasty is performed) w/a tube that went all the way up through my carotid arteries (1 side of the neck then other) A breif, mild barbituate was used to put one hemisphere of my brain to sleep while motor, speech & memory tests were done (lasted few minutes) Then they went up the other side & did it to the other hemisphere. That was how they found I was one of the 3% of people who had speech & memory centers in both temporal lobes.
Hence my surgery has to be more invasive

[KingRalph]

i have noticed a limited number of hospitals being able to have and use highly advanced 3-D brain mapping technology that is constantly developing, these will soon be tied in with the newer precision lasers that have a ways to go yet. i'm sure you'll only go where the best is.

have you talked with a doctor or researched on the beneficial effects after surgery of canabis? or if it could have an adverse effect at all? i would imagine helping through cannabinoid receptors would do wonders for recovery or at least pain in the area, but i'm no doctor. if it lessens the residual attacks after surgery that would be key, eh. tho an indica would be good for pain, a sativa is really needed for the head, but any raciness characteristic in a sativa would be unwanted i'd imagine, and higher CBD and CBN levels better... like the calmer clear hawaiian sativas. just more preparing for the future treatment, which i'm sure you're on top of regularly. again, all the best for ya