Here is a post I made earlier tonight on a Seattle Brain Injury MeetUp.com Group Discussion Board:
Background info: my husband (left-hemisphere stroke in Apr. 2008) started having seizures in Aug 2008. He has severe aphasia and profound oral apraxia and cannot talk or write. He can only draw, so in turn, we are left wondering how each med really affects him. It's up to me to report to the doctors anything I've noted since he started each med. So, this is all me (wife and caregiver) reporting this info, not the patient/stroke-survivor/person on the seizure meds.
In Aug 2008, he was put on Dilantin (phenytoin). I really wanted to get him off of the Dilantin as I noticed his comprehension and awake-time-alertness decrease significantly (and there wasn't much of either of those to begin-with anyway). Another tidbit regarding Dilantin, our neurologist/epileptologist stated that some of his students in his UW classes have epilepsy and they have commented to him that while they were on Dilantin they would have to re-read their lecture notes several times to just begin to grasp the info, and then when they went off of Dilantin they felt their IQ increased by 10 or 20 points--they seemed to "get" stuff the first time they heard it, they didn't have to study as hard as they did when they were on Dilantin--I found this info VERY interesting and useful as my husband was relearning to do SO much regarding basic living (e.g., getting dressed, eating with a utensil, etc.) as well as more complex things (e.g., writing, copying letters, etc.).
Dilantin didn't control the grand-mals, so then Lamictal (lamotrigine) was added a few months later to his regimen.
The Dilantin and Lamictal didn't control the seizures either, so then a third anti-seizure med was added several months later (maybe 6) which was Topamax (topiramate). The way the neurologist/epileptologist explained it to me was that Topamax was originally created for people with migraines and it works on several proteins in the brain (I think I recall him saying "7 proteins"), so our hope was that since the other meds hadn't controlled his seizures, this one would increase the likelihood of controlling them since it works on more proteins in the brain.
He was still having 3 to 6 grand-mals a week and in Aug 2009 he had three grand-mals within 24 hours. At that point his doc prescribed Lorazepam for him to take if he ever had 2 grand-mals within a 24 hour period again. He was admitted for long-term video-EEG monitoring (LTM) in Sept. 2009 and after 5 days, they found the location in his brain that the seizures seemed to be starting or being initiated by his brain--it was the motor-strip and specifically, the part of his left, top brain that controlled his right hand... so it was decided that we would not do the brain surgery to remove that piece of his brain (to control and stop the seizures from being initiated) since we didn't want to destroy the chance that he would regain some of his hand and arm movement, or possibly affect any of the walking-ability that he has regained since the stroke.
As he was going to be discharged from that LTM, I asked that he be put on Keppra and to not be put back onto Dilantin (since they remove you from your anti-seizures meds so you'll have seizures while in hospital and hooked-up to their EEG cables). Also, I had heard great things about Keppra from a lot of people and via my own research (i.e., Kessler Institute for Rehab was doing a clinical trial investigating Keppra's effect on Chronic Aphasia--as though it might help it).
Another component for me not wanting him to go back on Dilantin was that I overheard hospital roommate (also there for LTM) say that they heard that Dilantin can actual increase the amount of grand-mals you have if you're having more than just petite and/or partial seizures. Argh! That frustrated me to hear that--no wonder his grand-mals were increasing... but then the doctors should know what they're doing, right?!?!?!?!
Then, the last med we have added to the 'ammo' against seizures is Lorazepam. Again, this was from overhearing our hospital roommate talking to his doctor on the other side of the curtain. He wanted to leave the LTM since he was having so many seizures, and the doc suggested he stay one more night but that he's give him some lorazepam to calm his nerves and to not let the seizures spread as far.
Ding, ding, ding--a light bulb went off in my head... "Couldn't we use that at home to control the seizures when my husband feels the grand-mal starting?" Sure enough, we now always have one 1mg tab in his pocket and some in my purse. He can sense something when a seizure is starting, so he does his 'routine' to stop the seizure: a lot of stretching his right hand, swinging his left arm, bending at the knees/very controlled squatting, and usually all of this takes place in front of the mirror--I think it helps him to see his body or something (again, since he can't talk or write or understand a lot of what I say so I can't really ask him, I can only guess). If it continues to get worse, he also opens the blinds, turns on the lights, opens the windows--he seems to like it cold and bright. If it continues to progress, he'll clear everything out of his way in a pathway, like the hallway, and he'll pace up and down the hall while breathing very controlled and swinging his left arm in an exaggerated way. If it's still not getting better, then he'll take a 1 mg lorazepam and go into the bedroom and continue the stretching, swinging, and squatting routine in front of the mirror.
He is currently on Keppra (1000mg 2xday), lamotrigine (400mg 2xday), a decreasing dose of topiramate (was on 50mg 3xday for 12 months & is now on 25mg 2xday--hoping to get rid of this one as he starts to talk again since it inhibits word-retrieval), and the 'as-needed' lorazepam (1mg at a time, not to exceed 5mg/wk).
I am happy to report that with the Keppra and the lorazepam on board (along with lamotrigine and topiramate), and maybe even his 'natural' methods of controlling the seizure, he has not had a grand-mal since Sep 2009. I can't say that I miss seeing him lay on the bed crying when he knows one is coming-on, and then convulse and foam at the mouth and stop breathing and turn blue, and then slowly after 30 minutes start to 'come to' again. I think the 30 minutes after the seizure also reminded me of the initial stroke, especially when he couldn't focus on me as though he couldn't even see me, couldn't move his right side, couldn't talk, couldn't sit up, kept looking up to the left like something was up there... just freaked me out more than the seizure itself I think.
Man--this has gotten long--sorry about that.
~Julie
