Im not upset angel, I really care about people. we all come here for the same reason,to support each other and give each other the knowledge that we have learned over all the years of seizures and doctors and trips to the Emergency room. I would like to share my experinces of N.Y.U. and the great doctors Ive known in my life. Who knows what works for me might be helpfull to someone else. Right now what works for me is Keppra 1250mg B.I.D Trileptal 300mg am and 600mg pm along with Nerofeedback. I also pratice Heartmath, this raises the seizure threshold. Peace !
[News] Marijuana
- Thread starter Birdbomb
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Welcome to the Coping With Epilepsy Forums
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I hope this meens that you approve of my thread and my intentions toward all people with epilepsy or any other cross that is as heavy as we as epileptics carry in our daily lives. Peace of mind is a priceless gift that most people with epilepsy never get to enjoy. Pot helps me to relax and Nerofeedback clears the clutter from my mind so that I can make the best choices about my health issues. Its almost as though I can view my own situation from outside without so much emotion and make the most of this life that Ive been Blessed with. Every day that can get out of bed without being sick during my sleep is truly a blessing. Today is day number 612 free. I give thanks to God for this and pray that all who have epilepsy could experince seizure freedom,amen.
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Awesome. Glad to hear the folks at NYU are realizing the value of neurofeedback. Mike, would you mind posting about your experience with neurofeedback in the History Book forum? Be sure to read the sticky thread at the top before posting.
googly389
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I got to be a nearly every day smoker recently. However, once I would quit for a day or two I would get anxious and just feel hazy in my overall thinking. Still not as bad as the AED side effects though. I do find that it doesn't intensify my seizures but I have been on a 2 week hiatus from smoking and have noticed some more "rocky" than usual lately (deja vu, eye tics) but I quit the gangja cold turkey. I might just hit the bowl tomorrow to help wean me off it.
I'm on keppra,lamictan,enderol,epilim and zarontin,let me tell you something, its no ball!!! Im not pleased at all with my ' SPECIAL ' coctail,but what can you do @#$% happens!!! Shorrtly i will be going on my own medical trial using the HERBS,il put my experience in and let you no what the story is...
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seizingbeauty
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Hey Dash,
I'm an advocate of the "herbal remedy". I've had E since I was 18. Grand mal / tonic-clonic seizures. The 1rst 3 yrs were hell! I was bounced from Dr. to Dr. All my tests came back clean (no E activity) so they couldn't even diagnose me properly. I had one Dr. tell me that they were stress related (no reallly:roll
The side-effects of the medications were awful. They left me feeling worse than the E ever made me feel. I couldn't function on the meds, I was unable to think clearly, speak properly, had shakes all the time, headaches, you name the side-effect I had it. It got to a point that I finally said "F*&k this".
I stopped all meds and doctors for quite a few years. The longest seizure free period I have ever had was nine months and I was using only herbs.
But I would like to put it in perspective, I know some raging stoners and I am not advocating that in anyway. There is a difference between use and abuse. I use about a aprox. 1/5 of a gram a day. I use a waterpipe because the amount is not enough to roll properly.
I am now on 2000 mg Keppra as well and seeing a Dr. again. He appreciates my choices and has been documenting my experiances. We did try to wean me away, at my request, however my seizure threshold plummited.
I still have seizures and am currently going through a rough patch. From an anecdotal view I feel that the severity and frequency of my seizures greatly decreses with the addition of herbs.
Hope this helps
I'm an advocate of the "herbal remedy". I've had E since I was 18. Grand mal / tonic-clonic seizures. The 1rst 3 yrs were hell! I was bounced from Dr. to Dr. All my tests came back clean (no E activity) so they couldn't even diagnose me properly. I had one Dr. tell me that they were stress related (no reallly:roll
The side-effects of the medications were awful. They left me feeling worse than the E ever made me feel. I couldn't function on the meds, I was unable to think clearly, speak properly, had shakes all the time, headaches, you name the side-effect I had it. It got to a point that I finally said "F*&k this". I stopped all meds and doctors for quite a few years. The longest seizure free period I have ever had was nine months and I was using only herbs.
But I would like to put it in perspective, I know some raging stoners and I am not advocating that in anyway. There is a difference between use and abuse. I use about a aprox. 1/5 of a gram a day. I use a waterpipe because the amount is not enough to roll properly.
I am now on 2000 mg Keppra as well and seeing a Dr. again. He appreciates my choices and has been documenting my experiances. We did try to wean me away, at my request, however my seizure threshold plummited.
I still have seizures and am currently going through a rough patch. From an anecdotal view I feel that the severity and frequency of my seizures greatly decreses with the addition of herbs.
Hope this helps
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It's funny...my 1st grand mal was in April. I was smoking quite a bit of mj then because I was taking a trip to Cali soon and knew I needed to up my tolerance to handle the heavy-hitters I was meeting up with, lol.
My 2nd grand mal was in August, after quitting smoking for 2 1/2 weeks.
So I guess it's 50/50 for me.onder:
Maybe there's just something about the A months for me. :roflmao:
My 2nd grand mal was in August, after quitting smoking for 2 1/2 weeks.
So I guess it's 50/50 for me.
onder:Maybe there's just something about the A months for me. :roflmao:
googly389
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It's funny...my 1st grand mal was in April. I was smoking quite a bit of mj then because I was taking a trip to Cali soon and knew I needed to up my tolerance to handle the heavy-hitters I was meeting up with, lol.
My 2nd grand mal was in August, after quitting smoking for 2 1/2 weeks.
So I guess it's 50/50 for me.
Maybe there's just something about the A months for me. :roflmao:
Well....I had quit recently to try and get a job. During that period I experienced a very bad aura and multiple deja vu's a day. My stomach also was twitching a lot. I couldn't take it anymore and I smoked this past Friday and saturday night; haven't had a deja vu since! So, I suggest you wean instead of cold turkey.
Also, it is easy to say "try neurofeedback" but please remember most insurance companies (mine included) do not cover it for condition like epilepsy. They consider it holistic and alternative. I called the closest doctor who practices it and his receptionist told me it would be at least a $150 out of pocket per session! I'm eager to try it, but considering it's I think a recommended 40 sessions for an epileptic... I just can't afford that.
I really like to smoke weed and do daily. Ive smoked for 35 years. Ive had epilepsy for 31 years. Ive experinced almost 8 years of seizurefreedom in this life test. The first time was 5 years of seizurefreedom but,seized because I was taking steriods. Two other times Ive seized because of Prednizone. The only times Ive been seizure free is when the nerofeedback was added to my plan of control (seizure control). Work with your doctor to find what works best for you. Most doctors care and will listen but, our care is more important to us than to anyone else. We have to really pay attenion to what works best for our systems then we can make the right choices in dealing with different treatments.
Ahh, marijuana!
I was quite the pot head throughout my teens and early 20's and never did I have a seizure. They actually started when I stopped smoking pot 27ish. Coincidence? Perhaps it is, but I often wondered if the pot had controlled the E that was apparently lingering in the background since it's not like I banged my head all of a sudden or anything like that.
Also, I read an article about a man with E who used marijuana since it was the only thing that helped him control his E. The judge ruled in his favor because without it was detrimental to his health. Technically it's a life and death situation if mj is the only thing that will control the E because clearly one can die from E. This was in Canada but I doubt here in the US we would have the same results.
I'm all for it for those who truly feel they need it. Personally, I thought about trying it again for my CP (wow, it's been years!) but what am I going to go find a drug dealer at this time and what if I get caught? UGH!!! NO WAY! lol I remember after RTL telling my neuro to just give me a bag a weed since I did better on street drugs than these crazy phama. drugs! He thought it was funny even though I was serious.
I was quite the pot head throughout my teens and early 20's and never did I have a seizure. They actually started when I stopped smoking pot 27ish. Coincidence? Perhaps it is, but I often wondered if the pot had controlled the E that was apparently lingering in the background since it's not like I banged my head all of a sudden or anything like that.
Also, I read an article about a man with E who used marijuana since it was the only thing that helped him control his E. The judge ruled in his favor because without it was detrimental to his health. Technically it's a life and death situation if mj is the only thing that will control the E because clearly one can die from E. This was in Canada but I doubt here in the US we would have the same results.
I'm all for it for those who truly feel they need it. Personally, I thought about trying it again for my CP (wow, it's been years!) but what am I going to go find a drug dealer at this time and what if I get caught? UGH!!! NO WAY! lol I remember after RTL telling my neuro to just give me a bag a weed since I did better on street drugs than these crazy phama. drugs! He thought it was funny even though I was serious.
Help
Well the type of epilepsy i have isn't from bein bashed on the head either, mine was from lack of oxygen when i was born,i was only diagnosed with epilepsy when i was 7.... I constantly shake and twitch i'm totally 100% addicted to my tablets..... If i skip a day or 2 i have minor seizures any thing more than that,i greet the nurses at the hospital... So i may as well try sum grass,neurofeedback hasn't even come to my country yet!!!! Stupid 3rd world country....
Well the type of epilepsy i have isn't from bein bashed on the head either, mine was from lack of oxygen when i was born,i was only diagnosed with epilepsy when i was 7.... I constantly shake and twitch i'm totally 100% addicted to my tablets..... If i skip a day or 2 i have minor seizures any thing more than that,i greet the nurses at the hospital... So i may as well try sum grass,neurofeedback hasn't even come to my country yet!!!! Stupid 3rd world country....