Hi, my name is Ben and i was just looking around on the net for epilepsy stuff and found the forum so i figured it would be nice to have someone to bug beside my mom.
My story starts when i was 17.5/18 i started having the worst things ever occur in my life while sleeping. Basically i would goto sleep and wake up in the middle of the night and right when i woke up it was like i was in a living nightmare, I had the most intense feeling of terrible horror/panic/pure grief i have ever felt for 20-30 seconds before i lost all mussle control/started spazing/ could not breath for around 2 minutes before i would just pass out because of lack of oxygen. At first i thought this was just really bad dreams because when i woke up in the morning it would all just be cloudy memorys, but after around 15-20 times of this happening and watching some seizure vids on utube i relized i was having grand mals.
The tough part came with my first docture because he just would not believe me that i was having grand mals cause he said it was impossible to be awake when they happen. After around 40-50 seizures over 3/4 of a year and having my mom actually witness one(very hard because it always happens while sleeping) and calling 911(kinda odd going to sleep and waking up in an ambulance) we swiched doctors and got working on a solution. First was weeks of testing with eegs and the magnet ones and other things but never could produce a seizure while at the place so it was useless. Next the doc put me keppra and within 2-3 weeks of that i was going insane from the meds and started punching walls and put my whole family in tears and lost all emotions so we swiched to depekote and been on that ever since. It started at 2 250s then 4 then 6 for a total of 1500mg per day now. over the last 5 years i have had around 130-150 grand mals with the first year being 40-50.
Total med useage per day includes 6 depekotes, frankincense oils, and marijuana everyday. Both the frankincense and marijuana decrease the average amount of grand mals per month. Every seizure i have had has been while sleeping except one time when i was screwing with the depekote(wont do that again lol) and i had a seizure with no warning and didnt even know what happened while awake and unfortunatly while driving which ended badly(drove off a near cliff at 40 mph in a convertable and flipped it with my friend inside, somehow we didnt die but it was really weird cause it took me around 10 min after waking from the seizure to understand that i had been in bad accident).
Right now i still get 2 grand mals on average every month and i hate it because i still wake up and relize im going into a seizure and there is nothing i can do about it except flail around for about 30-40 sec until i pass out which is still the worst feeling i have ever experienced. Also my memory is pretty shot and i feel this is because of the amount of seizures iv had and not because of the meds. After a seizure i'm pretty much down for the count for 4-8 hours of the next day and usually just sleep for about 16 hours. The last seizures i had was 2.5 weeks ago 3 in a row one sat one sun one mon, Most likely because i was at a lower dosage of the depekote(2 a night) because i was smokeing a lot of weed which was working for several months but then i quit smokeing for like 2 weeks and forgot about the meds to take more and then that happened.
With the marijuana i know it helps because of tests iv done but in the last 6 months i have been getting panic attacks/bad vibes from it which has causes me to smoke much less/stop sometimes, which is kind of weird because i have been smokeing for about 4 years on a regular basis with no problems. Does anyone else use marijuana for seizures or just for fun and if so have you had panic attacks from it?
What do you guys think of this whole situation?
My story starts when i was 17.5/18 i started having the worst things ever occur in my life while sleeping. Basically i would goto sleep and wake up in the middle of the night and right when i woke up it was like i was in a living nightmare, I had the most intense feeling of terrible horror/panic/pure grief i have ever felt for 20-30 seconds before i lost all mussle control/started spazing/ could not breath for around 2 minutes before i would just pass out because of lack of oxygen. At first i thought this was just really bad dreams because when i woke up in the morning it would all just be cloudy memorys, but after around 15-20 times of this happening and watching some seizure vids on utube i relized i was having grand mals.
The tough part came with my first docture because he just would not believe me that i was having grand mals cause he said it was impossible to be awake when they happen. After around 40-50 seizures over 3/4 of a year and having my mom actually witness one(very hard because it always happens while sleeping) and calling 911(kinda odd going to sleep and waking up in an ambulance) we swiched doctors and got working on a solution. First was weeks of testing with eegs and the magnet ones and other things but never could produce a seizure while at the place so it was useless. Next the doc put me keppra and within 2-3 weeks of that i was going insane from the meds and started punching walls and put my whole family in tears and lost all emotions so we swiched to depekote and been on that ever since. It started at 2 250s then 4 then 6 for a total of 1500mg per day now. over the last 5 years i have had around 130-150 grand mals with the first year being 40-50.
Total med useage per day includes 6 depekotes, frankincense oils, and marijuana everyday. Both the frankincense and marijuana decrease the average amount of grand mals per month. Every seizure i have had has been while sleeping except one time when i was screwing with the depekote(wont do that again lol) and i had a seizure with no warning and didnt even know what happened while awake and unfortunatly while driving which ended badly(drove off a near cliff at 40 mph in a convertable and flipped it with my friend inside, somehow we didnt die but it was really weird cause it took me around 10 min after waking from the seizure to understand that i had been in bad accident).
Right now i still get 2 grand mals on average every month and i hate it because i still wake up and relize im going into a seizure and there is nothing i can do about it except flail around for about 30-40 sec until i pass out which is still the worst feeling i have ever experienced. Also my memory is pretty shot and i feel this is because of the amount of seizures iv had and not because of the meds. After a seizure i'm pretty much down for the count for 4-8 hours of the next day and usually just sleep for about 16 hours. The last seizures i had was 2.5 weeks ago 3 in a row one sat one sun one mon, Most likely because i was at a lower dosage of the depekote(2 a night) because i was smokeing a lot of weed which was working for several months but then i quit smokeing for like 2 weeks and forgot about the meds to take more and then that happened.
With the marijuana i know it helps because of tests iv done but in the last 6 months i have been getting panic attacks/bad vibes from it which has causes me to smoke much less/stop sometimes, which is kind of weird because i have been smokeing for about 4 years on a regular basis with no problems. Does anyone else use marijuana for seizures or just for fun and if so have you had panic attacks from it?
What do you guys think of this whole situation?
