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Wed, Jan 9 8:27am · seizures in Epilepsy & Seizures

Hi, Im 40 yrs old, @joedavid I have tried the medical cannabis and it has done absolutely NOTHING to stop my seizures. I had started out doing the drops, got up to doing 18 drops under my tongue 3x a day with no help. When Inwould have a seizure I would do the vape, it pretty much just knocked me out. Slept really good and thats the only plus im getting out of it. Havent done the regular street marijuana. I dont see how it could help anything. Everybody is different, seems like it helps children better to me. Good luck to you!

Nov 29, 2018 · Seizures and surgery in Epilepsy & Seizures

@jakedduck1 Thank you! Before my surgery i was having 20-40 complex partial seizures daily. And 1 or 2 gran mal a year. About 3 months after my surgery I started having the partials and now absence about twice a month, then just over the years they have slowly become more frequent. Even with me doing the medical marijuana and on 2 seizure meds they are just happening daily again. I have wondered about the RNS and would consider getting it. I havent talked to my neurologist about it yet. I feel its worth a try. Especially since the medical marijuana isnt helping at all!!! Have been reading all about it and at this point Im desperate for help! My husband thinks since im not using the bathroom in myself that i should be thankful for the seizures im having now and how they are not nothing like before. And im very thankful but at the same time the auras and the ones im having now are still scary and my anxiety is through the roof!!! I definitely dont drive, was working before all this but im a stay at home mom now. I had asked a question on about the medical marijuana not helping my seizures and if anybody else was using it and it not helping and my question was deleted. I feel like it was deleted because it seems that everybody is all about the medical marijuana helping this and helping that and hopefully it does for alot of people but i think its a joke and people are just making tons of money off of it!! Thays just my opinion of course!

Nov 28, 2018 · Medical Cannabis as a treatment for Seizures in Epilepsy & Seizures

Hi, im new here and saw this topic and had to share my own experience. Im 40 yrs old, been having seizures for 20 yrs now. Had a VNS implant in 2009, with continued seizures I had a right temperolobectomy in 2011 because of an abnormality. I havent had a gran mal since my brain surgery and have been taking the medical marijuana for a year now. I do 18 drops under my tongue 3x a day and use the vape when i have a seizure or having auras. It has not helped at all!!!! Im actually having more. Complex partials and absence seizures now. I had started out doing only 5 drops under my tongue but because that wasnt helping my med. marijuana doc has increased slowly to 18 drops. I just knew before it was approved in my state that this was going to be my "cure all" very disappointed it hasnt helped me at all. I also take Onfi and Briviact, been having seizures daily!!!

Nov 22, 2018 · Seizures and surgery in Epilepsy & Seizures

I would recommend it, for it has helped with me not having a gran mal since my surgery. My only problem now is my memory is getting worse with every complex partial i have, which has been daily with sometimes having up to 6 seizures. I dont know if i mentioned before that i have another abnormality on my hippocampus, which i was told cannot be removed. So im always wondering if it can get worse or spread to other parts of my brain, especially since ive been having them every single day now. But, I also fear what if they get bad again and I start having gran mal seizures. So scared its just a matter of time. I dont regret having the surgery at all. Good luck to anybody thinking about doing the surgery!!!

Nov 16, 2018 · Catamenial Epilepsy and Progesterone Therapy in Epilepsy & Seizures

@lisalucier Ive been using the cream for about a month and as far as I can tell Im not having any side effects. But, I take all kinds of other medications. I feel tired a lot of the time, I have migraines, trigeminal neuralgia, hypothyroidism, insomnia. Currently taking NP thyroid, Briviact, Onfi, Lyrica, Buspar, Amitryptiline, Diclofenac Potassium, and DHEA every other day. Also just started getting botox injections for my migraines. So if I were to have any side effects I dont know that I would even know lol. And thank you! I was feeling very down yesterday, ended up having 4 seizures yesterday..was in Walmart with my husband and started saying " oh sh*t" over and over grabbing at his arm…i didnt remember anything but felt "off and confused". I have never talked to or been in a group where other people have gone through the same thing. So thank you so much for welcoming me!!!!

Nov 15, 2018 · Seizures and surgery in Epilepsy & Seizures

Hi! I had my right temperol lobe removed in 2011 because of an abnormality. Have a VNS as well, which doesnt help but would like to think it does. I am still having seizures. I havent had a gran mal seizure since that surgery but I feel like my seizures are slowly becoming more frequent and am scared and worried that I will have a gran mal seizure anytime. Im having complex partials and absence seizures now. I also downloaded a seizure app on my phone so that when I go see my Neuro I can show her when and how often. It helps her see how many im having. On 2 seizure meds at the highest dose and my VNS settings are set pretty high as well. Good luck to you and your granddaughter!!

Nov 15, 2018 · Catamenial Epilepsy and Progesterone Therapy in Epilepsy & Seizures

Hello, I just signed up to this and reading about others who have seizures before their period is great to hear! Not great they you are having seizures of course but "to know and not feel like nobody else is going through this but me" feeling! So I started having seizures after I had my 2nd son when I was 19. I didnt know and the doctor Inwas seeing at the time didnt know they were seizures. She thought i was just having panic attacks. Thing is I would have 20 to 40 every single day for 7 yrs before finally a new and differwnt doctor said "I think you are having seizures" I was shocked! This whole time I was having these so called panic attacks, I was going to school, driving, got a job, everything I had always done before. When I would have them, I would always do the same thing every time…pee on myself, say "oh sh*t over and over, lip smacking, and when it would stop, people would tell me what I did and I couldnt believe it! I had no memory of doing any of those things. So I was 20 yrs old and wearing diapers, its a wonder I never got into a wreck!!! Eventually I did lose my job and then about 2x a year I would have a gran mal seizure. Fall hit my head, about bite my tongue off and so finally I was put on seizure meds. Unfortunately none of them worked for me. In 2009, I got a VNS, still had seizures. In 2011 I had my right temperol lobe removed. It helped for about the first 5 or 6 months. Then I started having "small" ones and was eventually put back on seizure meds. Everytime i go to my Neuro appts if I have had any either my meds get changed, up the dosage, or add a new one. Im 40 yrs. old now and my seizures seem like they are progressivly getting worse as time goes by. Ive started having them almost everyday again, the most ive had so far in 1 day is 6. Ive only lost bladder control twice but it feels like my memory and simply just understanding the simplest things are getting so difficult and not remembering doing things or going places with my family is so frustrating!!! I wonder if im on the road to getting Alzheimer's!? My grandmother had it. Im currently taking Briviact, Onfi and even been on medical cannabis for the last year and it is NOT helping!!!!! When it was approved here in Florida I really thought medical cannabis was going to be my cure!! Im so letdown after seeing how its supposedly has helped so many with their seizures. I do notice an increase around my menstrual cycle but also have them at other times as well. Have just recently found out I have low progesterone so I have prescribed progesterone cream i use 2x a day. Havent been able to tell a difference yet. The doc did say it may take about 3 months before I will tell a difference. Stress doesnt help at all of course and getting too hot is a definite trigger..easy to avoid that but how do you deal with stress? I dont work, cant drive. I do crochet ALOT!!! Just was taught a few years ago by mom, which does help somewhat but sometimes I feel like so depressed and have wondered if I just died in my sleep that would be fine with me at this point. My VNS is on the highest settings, on the highest dose of Briviact..have been on everything…whats left? Sorry if this is long, just wanted to tell my story I guess. My husband tells me I should be thankful I dont have the "bad seizures" anymore and yes I am so grateful and thankful that I dont. And my mom tells me just the other day that if I went to church every Sunday morning and Sunday night and Wednesday night that that would help me. I dont feel comfortable around a large group especially at church. How would that be if I start having a seizure and I start cussing? Um no!! I believe in God and stuff and pray all the time. I just feel so hopeless!!!! Thank you to anybody who reads this and understands how im feeling. Good Luck to all of you who continue to have seizures despite trying everything!!