Epilepsy Community

Good Morning,

Thank You for joining us here in Epland. ??? Is this your 1st time w/ online EP support groups? Do you care enough NOW to get back on the DR/med merrygoround?? Have you Started taking your meds on a regular basis? How long have you been doing so??? Are you still experiencing szs??? Last "episode"??? I take it, now that you are fired, you are toking regularly, again??? Sorry for all the questions. When was the last time you saw a neuro? Had tests or bloodwork done?? Sorry for ALL the ??? But, if You answer them, I'll answer you. Please, be honest w/ me. I ain't gonna lecture you. But, As a toker, I will tell you what I think & what I know.

God Bless

Love Candi & family

Guess ya don't care what I think or know. Well EDUCATE YOURSELF! The answers are out there.

HUGS

How cute, three6mafia, you're 17 and already know all there is. My son wanted to let me know how marijuana was my salvation, seizure-wise, when I was in my 50's, although he didn't want to share this tidbit with anyone else who knew and loved me.

First, you didn't care about your meds, maybe, because you were too many tokes over the line, my friend, busy didn't have a thing to do with it except as it related to busy scoring and doing drugs. If pot helped, don't you think your neurologist would know something? Did you even ask? Did you say, "Doc, this is what's going on, is there another medication I can try?" If you're brave enough to buy and smoke your own pot, why can't you talk to your own doc? Sometimes you just can't give up, and you did. There are choices I didn't have when I was finally diagnosed at 23, when I had one child to care for already in 1971. Also, ask him or her about the VNS. That may or may not be an option for you--it wasn't even invented back then. But doing pot at this stage of the game sounds to me like wimping out before you've really given your neurologist a chance, or looked for an epileptologist, if you feel the need for a more specialized doctor.

Hello three6mafia, Well you made the first important step to understanding and accepting epilepsy by posting on here and asking questions. Good Job. As far as smoking pot and it being a substitute for meds well I think your heading down a path you really don't want to go down. And you've learned that . I understand how you are frustrated because meds haven't worked for you. Everyones journey with epi has a different beginning and some have a harder time than others , patience and communication are key factors though. My husband has epi and he has gone the denial route , he's self medicated him self it took 3 months before he had a seizure. He thought he was fine too. Started his meds up again went a while denial jumped in and he missed meds , drank alcohol to excess (more than 8 beers a week) bam seizures. Yep seizures. Each time he self medicates it gets worse. Your body pays a toll. Now he has Status Epilepticus : 10 seizures at a whack , this means 3 days in ICU and 5 more in regular room. This doesn't mean it can happen to you but then again in the roulette wheel of epilepsy ya never know. So my advice is talk to your doctor , be honest , sometimes you have to be on meds for a while before you get past the side effects and level out. Unfortunately a lot of the meds make you fell like crap ( for a while) but he has found out that pot like alcohol may make you feel 10 feet tall and impervious only maskes the issues for a short time and like a bad one night stand leaves you cleaning up the mess left over from the party and you pay for all the damages. As for smoking while your taking your meds, thats another issue. I go to epilepsy.com and would advise you to do the same maybe theres someone on there that has info on pot and if it brings on seizures while taking meds. But Ill leave you with this thought , if pot was medicinal for epilepsy like it is for other maladies and could be prescribed Im sure there would be a lot of patients on a waiting list for a prescription right now lol. But its not so don't self medicate ok?

Hi three6mafia I've had epilepsy for about 30yrs, I do smoke and was told by my Dr's over the yrs that it would help. Now don't miss understand it's not something I do all the time but after long stressful day s of working at least 10-12 hrs, for alittle over time to make ends meet rather then haveing a drink or even 2 or 3 coctails to try and relax before bed, alittle weed will let me sleep and with out fear of a seizures (which drinking could cause) I will say that my Dr. said to me, that smoking pot would be much better then drinking, but in the same sentence said that i didn't hear that from him about smoking. haha! I do still take my meds!!!! As I think u should also! Remember be smart ! Be Safe!

Hi I was 16 when I had my first. It was freaky. I started smoking weed when I was 19. I wasn't on any meds but was seizing all the time. When I finally got on meds I was still seizing. I did finally get on the correct meds, but I also was smoking and it didn't seem to do any harm. I'm 35 and still smoke once in awhile while on my meds and nothing has gone wrong. I know how you feel about the jumping. My doctor told me that I will always have that no matter what. It sucks I know. I don't drive because of this and mainly because if I had one and hurt someone I couldn't live with myself especially if there was a child in the car. I was on my way to work one day on my Mountain Bike and had a Grand-Mal. A friend of mine who I worked with saw the whole thing and knew what to do. I had 18 stitches from the corner of my mouth to my chin and 6 by the corner of my eye. It looked like I got beat really bad. I went to my job and told them I needed time off to get back to me. When I went back I had people talk about me and how I looked. So I went to my boss and said I'm leaving because of this. I went back again and asked to come back and they told me I gave them my 2 wk notice which I never did. I never said I'm giving my 2 wk notice. So I never went back. I know how it feels to feel like you do. I'm so sorry they did that to you. They had no reason to fire you. Did you go to your Union or someone who was in charge?

I have had this 40yrs now and like everyone do the med thing,blood work and eeg (why they call it eeg who knows) but anyway if that works and could legally be done that sounds great . Im trying to drive again due to grand malls last year and I don't no about you but am always tired and was not before but if grass,weed a refer works then the medical field should help us all out besides when you go to a doc. of any kind you pay!!!!!!!!!!!

Hi three6mafia!

I'm AubreyLynn and I think that if weed is helping you then do it. I have have the same experience. I've felt szs coming on and smoked and about 95% of the time they stop. Meds do more harm to your brain and body than weed can. I've been smoking for 30 yrs and been on meds. The meds cause me physical problems and are mind altering drugs. Your brain is still developing and will be until you're 25. The only thing I will tell you not to do is hard drugs (cocaine, etc.) and alcohol. Alcohol is very dangerous and if you drink while have szs it could kill you. I know from personal experience. Always remember, we live with this and the docs only study it. You know your body better than anyone. I will support your decision. Please know that I'm not judging your use of weed. I smoked for eight months, took my meds but when I quit smoking I had a seizure. My doc and lawyer are thinking about medicinal marijuana (spelling?) for me. Check into it. If you can't afford a lawyer, there are resources out there for you so check into it but do it legally. Good luck! AubreyLynn

Please take your medicine on a regular basis. I was carefree, and felt great so I skipped the morning dose since I got seizures at night. Then I had a grand mal and went to the hospital. I have not missed a pill in 21 months and have had no seizures. Please do the same. Also, Keppra has done wonders for me along with exercise and di-rhymatic breathing.

I am not going to be a bitch or judge you like other people on here. You are an adult! I was diagnosed with epilepsy when I was 18. I think that marijuana has been proven to help with all kinds of things but not all people. I smoked before I was diagnosed so I don't think it will cause a seizure. When I don't smoke though I will have a seizure and since there are no physical withdraws I know it's not from that. I feel very strongly that it helps me at least in the emotional and side effects from my medication. It is no different than popping an anti anxiety drug if you ask me. All of that said, it is SO important to take your meds on time and consistently! It does not only make a difference to you but also to the ones who care about you. I'm always reminded of my husbands face when I come around after having a seizure. He's scared and very worried. So, take your meds in conjunction with pot in moderation. I have also found that artificial sweetener makes me have a lot of episodes so stay away from that. At least research what they put in it, it's awful! Good luck!

I had a hard time even accepting the fact that I had epilepsy so I didn't think I needed medicine. I went about 18 months with no medication at all. I had so many seizures I was afraid to go anywhere or do anything because I didn't want to freak anyone out. I finally came to terms with it and found a good doctor. I have been on Keppra for about four months now and am doing awesome! I have been seizure free since November 20. I was wondering what the breathing thing you were talking about was and how does it help?

have had epilepsy for 25 years. i have uncontrollable epilepsy, so doctors say. on lot of medication most of my life. only time that i have clear periods from my seizures and jumps in my limbs is when i have a smoke. friends noticed that i looked heaps better, better mood and no fits. took one yesterday but brought on by stress. very very stressed out yesterday. marijuana and epilepsy in my opinion is a positive move for sufferers

high everyone, glad to see there are so many supporters on here.i am new to the community but my mom is is a long time member.i i have smoked since my teens,was diagnosed with ep at 27. i had a wonderful nuero who has said that smoking is good for lots of things, the buzz(of course) to control anxieity and nausea ,head aches and numbers of other maladies.he told me to not quit smoking but not to tell anyone he told me this either. every doc i have ever had knows i smoke weed and they never say a word ,but i say something about cigs and they come unglued.same goes for my mom i take all my meds but with the side effects and the breakthrough siezures i don't know what i would do without my lil helper.it does not control ep. but always remember marijauna is against the federal law ! so vote to legaligalize medicinal marijuana good luck to all

I would smoke if it was legal and wouldn't cost me my job but in Ohio it would and the meds cost alot