My lil brother has had epilepsy for a while now an ever scence he was 17 hes been smoking w/o takin his tegretol an didnt have any seizures for 2 years then started seeing this gurl that made him quit an he had to be rushed to the hospital frm a seizure within a  few days of quittin smokin weed.

hi i am 19 and i started having seizures when i was about 16. i take 600mg of dilantin every day but i think that smoking mj helps for sure. my seizures are stress indused so smoking really helps. evey since i started smoking i never feel like i am gonna have a seizure. i have never had one when i was high.

Liam

I would be careful with any substance that could mix badly with the drugs and also I would not like to damage my lungs that in the future they had to medicate me with breathing drugs and inhalers that can interfere with the epilepsy drugs.  Also breathing can affect seizures if it is not good. Why make a bad thing worse?

I just had my first grand mal seizure at 38 a week and a half ago. I have been smoking mj for years. When I asked at the emergency room if I had been taking any drugs or drinking, I responded I had smoke mj the night before. The neurologist and doctor told me that could not cause seizures, it helps prevent them. They suggested I keep smoking but quit cigarettes. I do not drink alcohol or do any other drugs.  My seizure was due to chemical imbalances in my system added with panic attacks and stress. The doctors did prescibe me xanax for the panic attacks. I have a very stressful job. Many people people use mj for various reasons. My issue is that mj has so many medical uses and is not legal but alcohol has no medical uses and is legal. Hopefully my seizure was an isolated incident and never happens again. All my test came back negative. eeg ct scan. I cannot drive for 3 months though and that sucks.  Having a clonic tonic seizure for the first time is very scary, I do not remember anything for about 25 minutes after the attack. I got really agressive during the tonic stage and 4 paramedics had to take me down. Remember I am a women of 5 6 and 140 pounds. I will continue using mj and was not prescribed any anti seizure medication. I do live in a state that we do not have medical mj available. I think the mj should be legal and alcohol should illegal.

Cannabis works very well for some and not at all for others.  I have temporal lobe epilepsy and I am able to totally control my seizurs by vaporizing a gram a day.  It is much cheaper than the toxic pharmaceuticals that our doctors are so eager to perscribe;  since I can grow my own medicine here in Oregon, and feel much more independent, since I dont have to rely on the Pharm-Barons that have a strangle hold on our democracy.

Humans have been using cannabis for thousands of years for various reasons and controlling seizures is one of them.  The first anti-convulsant came out in 1936, the year before cannabis  became illegal. What did people do for thousands and thousands of years before that?  Cannabis. 

Temporal lobes have a higer number of CB1 and CB2 receptors, which fit perfectly with the cannabinoids in cannabis.  This was only dicscovered fairly recently, but its been true since the begining of our species.  Some believe our brains have evolved along side the  cannabis plant and thus have receptors espcially addapted for it.

Let us not judge those who seem to be just getting high.  Just because someone is not in a wheel chair does not mean they are not crippled on the inside.  Many people use cannabis to treat depression or anxiety or just to feel better.  We are all just trying to get through our lives comfortably.

As much as this may suck to say, as I like smoking every so often, I have noticed that when I quit smoking marijuana my complex partials have seemed to stop!  Although I am not sure.  I was still smoking while on Keppra to help calm down from the severe anger it caused!  It was the only thing to help combat the side effect-I tried numerous other things.  I was then switched to Lamotrigine-first 100 mg 2x a day with a few cp's. so then uped to 200mg 2x a day, and since then no seizures at all-but my stress level has been reduced lately as well!  Around the time I started the Lamotrigine (shortly after) my husband (who also smoked every once in awhile)  thought we I should stop and see if it made a difference, and it did-or did it?  Was it the change in meds?  I was going to smoke again to see if the mj was a trigger, but I am afraid that I may have more and lose my liscense for even longer-especially since I only have a month and a half to go!  My stress levels were reduced after the diagnosis (everyone is trying to do their part since that is a trigger) but are now starting to come back after having the kids, 4, 5 & 6, have been home for summer break!  I am also worried about quitting smoking cigarettes (which I need to do since they also found a heart problem-mitral valve prolapse) I know that will be a major stress factor!

Any advice here?  Should I do a trial and error thing here?

It took me reading this thread to register.

To those of your who are having your issues about illegal drugs, don't forget that medical marijuana is legal in 12 states. There will come a day when it is legal in your state.

We aren't talking about drug addicts or people who are looking to get high. We're talking about people trying to find a solution to their problem. Cannabis has many positive effects, you cannot dispute it. No other illegal drug is even mentioned as having medicinal benefit. Yet the stigma with cannabis is it is illegal and someone's kid got in trouble or bad grades in school because he got stoned all the time.

People who use cannabis medicinally believe in its effects, and so do I. Not only for epilepsy, but for many other conditions. If it was a family member sick or dying, and the only thing that would help them is cannabis, how would you feel then. Very differently, I'm sure. My 89 year old grandmother used cannabis to help her appetitie while dealing with her cancer. So that's not someone that wants to get high.

The doctor says "here, take this pill", and we do. Yet a natural drug is available, but then the pharmaceutical companies wouldn't make the money they do. So why is it so controversial? We all should be allowed the drug of our choice, to help ourselves. Most mainstream doctors will not even talk about it for fear of repercussions. And the pharmaceutical companies won't either, why would they want to lose their marketshare? I stopped looking at doctors as God a long time ago. I have to make up my own mind what is good for me. Not a doctor that I see 15 minutes every three months.

Thank goodness I live in a state where  medical marijuana is legal. 

I take lamicatal and neurontin. I use a vaporizor three times a day to help me with the side effects of these drugs. Everyone is affected differently by all drugs. You take too much, it can hurt you. People who use cannabis medicinally aren't looking for a buzz, they are looking for relief. Don't be so quick to rule out cannabis helping you. When it is legal in your state then it will all be better. No more stigma or worry. Cannabis has been used to help with epilepsy since early history.

I have used cannabis for 30 years. Used it before and after my epilepsy started.  I also have panic attacks, which can bring on my seizures. Using a vaporizor gives me the opportunity to remain calm and give myself the opportunity to relax. I take 800 mg of lamictal and 1500mg neurontin daily. One vape when I get up, one at lunch, and one at bedtime. No smoke, only vapor. I don't believe that cannabis can cure you, but it can help with many symptoms.

Remember, a huge percentage of epileptics don't know what causes their seizures. Everyone reacts differently to EVERY drug. But don't discount cannabis, because it has many positive benefits for so many different health problems.

You don't have to smoke cannabis. You can cook it, bake it, put it under your tongue, smoke it, or vaporize it. Please don't be so quick to judge those who use cannabis. We are all looking for a solution. Don't count us out just because someone's cousin's mother's brother's wife smoked pot. I don't smoke to get high, neither do millions of others. We all should be allowed the drug of our choice, to help ourselves.  What would you say to those people? I hope you would shake their hand and congratulate them on trying to help themselves. 

thank you for listening. best wishes to everyone.

hello

my names nicole and ive been epileptic wince i was 18, and i am 25 now. i started smoking when i was about...16. and continued to of and on until i was 18,then it was a regular thing. at that time i wasnt taking any meds (no insurance, due to "pre-existing cause")(but now,due to a fantastic service in south west florida, ive been able to get my meds for free :-))

ive been on keppra and trileptal, and finally ending up on 400mg of lamictal a day but still having seizures every once in a while and auras. now,ive found that with almost regular usage of marijuana and a good nights sleep, i end up in seizure free central. the only time ive had a problem is when its low quality. if i smoke that, im all auras.

the government needs to legalize marijuana,seriously. it has not had an effect on my job or anything else in my life, and its helped my situation.

I've had seizures since I was 8 years old now 30 years old. I started going out with friends that didn't know about my seizures but they smoked pot so I tried, I smoked and took my meds for 1 year without having a seizure but I never thought that the reason was the pot smoking. When I stopped smoking I started having seizures again still thinking its from me not taking my meds.
I had a hole in my heart that wasn't letting the blood to the brain thats why my seizures became worst. When I found out that I had to have surgery I went online and found that marijuana can help with heart disease and high blood pressure, so I started smoking again this time a lot besides helping my heart problem my seizures had stopped.

My husband wanted me try marijuana thinking it may help my seizures. So I stopped my meds and smoked pot at the time that I would take my medicine. I did that for 2 years without having to take any medicine and had no seizures of any kind.

Except for the time I had to stop so that I can get pregnant. So now I had to take lamical 400mg a day twice a during my pregnancy. During 9 months of my pregnancy I had over 10 seizures even after my pregnancy I was having seizures so I had to start smoking again cause my seizures became worst.

Now after smoking marijuana after 5 years I've been seizure free.
( not including the 3 months before, the 9 months during and the 2 months after my pregnancy. )

So lets legalize marijuana.

I was recently diagnosed with Epilepsy.  I am new to all of this so I have been doing a lot of searching for answers and I have been suprised (and disturbed at times) with all that I have found.  It's like so many things are finally making sense to me now.   Ever since I was little I would always tell people something wasn't right, I would get yelled at because of not listening or paying attention and responding to people, I would have these strange sensations and/or eye problems (which I have come to find out over the years are auras) and for whatever the reason all of my issues were somehow written off as 'daydreaming' or personality quirks or body/muscle  twitchesand nobody ever really listened to me.  I feel so grateful to have gotten the diagnosis! But now what?  It's kind of scarring me.

But because all of these things have always been reduced to just 'the way I am' as far as many people see it my husband is telling me that the pot I have been smoking over the past 2-3 yrs is probably causing the seizures.   He can't stand when I smoke now though, he thinks it is going to cause more seizures. Here is a little bit of backstory:

About 3 yrs ago I started having what I thought were panic/anxiety attacks quite frequently, which I always had but only here and there-never on a daily basis like they had become.  When I talked to my family doctor she thought I just needed a different anti-deppressant (I had been on so many different ones for years-trying to find something that would work!-plus I have a 4,5, & 6 yr. old so stress and anxiety is common) until I finally said enough is enough with all meds and gradually backed down and eventually off, I figured they never worked anyway so why the hell am I spending a fortune and dealing with all the side effects!  Plus the 'attacks were coming at a calm quite part of my day, when my 4 yr. old went down for his nap-almost always at the same general time in the day, but not always-they never made sense to me.  I smoked pot through all of that on a somewhat regular basis (only at night after the kids were asleep, and usually only a bowl maybe two between my husband and I, since it seemed to be the only thing that could ever calm me down and relax me.  But now as I sit and think back over the years with the exception of these 'panic attacks' and 1 grand mal seizure (which was the recent event that helped lead to my diagnosis) all of the other things seemed to be under greater control.  I even think that it may have been the type of pot I was smoking-is that possible?  The docs put me on Keppra and I have been on it now for a few months, which worked wonderfully at controlling the seizures but created many more challenges with emotions.  I have also changed my smoking habits, I only smoke when I get to that breaking point emotionally, to help calm me down as the Keppra causes severe emotional issues (mainly out-of-control agitation, anger, crying spells that come on for no real reason, etc.) and it seems to do the trick quite nicely.  But since switching to generic I have had more seizure type episodes.  Could the pot have caused seizures?  I did tell the doctor that I smoked pot and she really did not say anything, one way or the other.

I smoked when I was in my early 20's here and there, never very constistently though.  From what I can remember all of these seizure type things have always been there, even when I did not smoke at all as a child!

I feel like the pot helps me in many different ways, and as I find out what types of seizures there are and it all makes more sense to me I feel the pot does help control them, as well as my severe migraines and stress.  I understand his concerns, he was with me in the restaurant on valentine's day when I had my grand mal and he has told me and others have told me how hard it was for him to watch it and not be able to help me, so I understand where he is coming from.

I could really use some answers or evidence here, whichever way, so we can both be on the same page!  I feel pretty lost with all of this right now and I thought maybe someone out there could help me?

Hello everyone, my name is Dustin and I'm a sophmore in college. I've been suffering from tonic/clonic (grand mal) seizures for about eleven years now. The first time was the worst, I had 4 grand mal seizures in a period of about 8hrs and I spent the next week in bed. In the past I've taken phenobarbital, dilantin, and trileptal; however, the frequency and intensity did nothing but increase. My condition is idiopathic, meaning they are unable to determine the origin of the seizures within my brain, which makes it difficult to prescribe medications. I have 2-3 episodes a month, and it is not uncommon for them to come in multiples. Like many people I am not allowed to drive and potential employers are wary of hiring anyone who is likely to miss a week or more of work a month.

About 3 years ago, while taking dilantin, 400mg as prescribed, my levels became toxic and I almost died. I spent 3 days in the hospital while my dilantin levels stabilized. A year and half ago I quit taking medication altogether because of cost and their inabilty to help control my episodes. I've been a recreational pot smoker for many years, and after reading some of the accumulating evidence suggesting that marijuana can help reduce frequency and intensity, I started smoking regularly. After some experimentation with doses and administration times (not to mention meeting someone who is willing to supply me with some of their high-grade homegrown),  I've been seizure free for 4 months. As with some of the people here, marijuana allows me to be more social and go out without worrying everytime I need to cross the street or use the stairs. Quality of life is vastly improved.

I don't think alot of people realize that epilepsy not only effects us before, during, and after a seizure, but effects everything we do and every decision we make.

I'm no expert and all people with recurrent seizure disorders should see their doctor regularly. Marijuana effects different people in different ways and it is not for everybody. I'm certain that I will have more seizures in the future, but I would rather have them every few months as opposed to a few every month. 

Stay strong and good luck to us all.

    I had my first seizure 2 months before my 43 birthday, full on tonic-clonic while returning from morning coffee.  No history at all but was lucky enough to be working in the University hospital neighborhood and was taken there.  It was blind luck, I guess, that I ended up in to care of the neurologist  who'd just been part of the panel updating the B.C. governments regulations around seizures.  After 2 days of sedation he brought me awake again and helped me to understand how things were going to change.  The drugs, the medical uncertainty, the good grace that I wasn't in my car at the time.  He also told me that there was a roughly 1/3 chance I might never have another seizure but if I did I'd certainly loose my Drivers License.   He also told me that there were drugs that would almost certainly keep me from having another seizure ( Dilantin ) but there were definitly side affects.  He hinted that I might go without and hope for the best but being a carpenter I didn't want to take ANY chance of a seizure.  I took the Dilantin  (300mg/day) but within 2 weeks the memory problems were just starting and the tempermental ones in full bloom.  Granted, there's no way to seperate between frayed  nerves and  baisc fear and the actual side effects but  I stopped after 3 weeks.

     My life sort of normalized but 3 months later I had another  T-C seizure.  I was driving my car this time but was sitting at a red light when it happened.  I was quite  happy to give them my license after that and tried the Dilantin again but stopped after a month, for the same reasons.  a few moths later I had a third full on T-C.  At this point there was no escaping the reality that I could take a medical long-term disablity  or  really commit to the Dilantin.  Since I'm one of the lucky few who actually likes my work  I choose the latter.   If I'd have known what the next few years had in store, I can't help but wonder if I made the right decision.  

     I'd ben with the same builders a few years so they knew my capabilities and were  willing to put up with the challenges, which were many.   Framing isn't so much about  measuring and keeping track of numbers (it's not hard to write things down) so much as managing a very specific sequence of events that vary a greast deal depending on variations from the weather to the quality of the wood in use.  A builder needs to keep track of these variations and I no longer could.  I couldn't deny the change in my skills and had to accept lower pay for simpler work that I could get right the first time ( and thank the hearts of those 2 brothers for hoping I might improve and so looked the other way when I couldn't even do that)  A couple a years passed and  eventually  developed new techniques for the process and was stubborn enough (pridefull maybe?) to keep going.  It was just good timing ,I guess, that all this happened when Vancouver was having a building boom leading up to the Olympics.  The bosses had no choice to push me into more complicated  stuff, as the workforce in general was pretty thin,and I eventually got things together.  I'd go over plans two or three nighs before and identify potential problems,  break down the particular sequence of events and then write them down.  These notes were a great help but I was surprised to find that my memory of things was also a lot better and so didn't need to refer too much to the notes.  Yes, there were still major problems but I could see the brass ring (as it were) and the challenges proved very useful.  The brothers were great about the whole thing but I could tell they were still a little vary of letting me at the complicated stair and roof problems  I'd been dealing with regularly before the meds. 

    Through out these 3-4 years I eventually settled at 400mg Dilantin but not without numerous small events. 45-60 second fade outs where I was sort of concious but frozen in place,  strange vibratory events up and down my left arm (sometimes my left eyelid as well) ,  the indescribable things I'm told are Auras,  almost like an out of body experience where I'm moving, sometimes talking, when suddenly I'm suddenly not sure if I understand the words I hear or even recognize the sights before my eyes.  But just for 30-45 seconds and then back to reality with no dizzyness or strain.  By then I'd also found out about the dental and bone problems which, frankly, didn't worry me because at least they were obviously there.  The short temper and communication problems were proving much harder to come to terms with.  I was finding myself more and more isolated from the world, by my owm choice I guess, because it was more than I was capable of (I'm just guessing here). 

   Throughout  these years I had, like all of you, an endlless string of MRI's and EEG's with no answers.  All  the doctors could ever say for certain was that my Dilantin levels were always to close to what the had decided was the bottom of the accepted range and were very clear in suggesting I needed to take a higher dose.  Given the effects I'd had the past few years I hope you understand why I was reluctant.  This was also the time when I had to accept my current boss saw me as reaching my potential, no matter how much I talked and tried  to demonstrate, it became clear that I could either stagnate with them or leave.  They were surprisingly understanding and we keep in tough a bit but I've moved on. 

    It's been interesting these past two years.  I moved into concrete formwork and just happened to pass by a site 5 blocks down the street from my house just as they were finishing the excavation for a 9 story condo tower and the tight builders market meant that the moment the Super saw my hands he offered my a job.  I spent the next six months building all their concrete stairs and learning the process as I went.  Thank the stairs there were 3 levels of parking underground.  The units had been all sold and so the pressure was on and they were more than happy to accept a few small mistakes down below.  From the ground floor up I did fine and helped with some of the architectural details in the penthouse floors.  It was the perfect training ground and soon found myself recommened to the group building a new 24 story Coast hotel just a bit further down the street.  That  went  well too,  mostly because I'd had enough experience to believe I could perform but also because that group had no preconceptions of me and so I felt  less pressure.  there's no denying, though, that having moved to 600 mg of Dilantin  was a big help.  I no longer had any fade-outs or Aura's and only 2 tingling events the whole 2 years.  Yes, I'm still short tempered and my casual memory sucks and the dental and bone problems seem to have gotten a little worse with the increased dosage.   Reading that last sentence just now makes even me a little suspicious of the following but there's seems no denying that I've reached pretty much the same level of builders skill I had before the first seizure.

     What does all of this have to do with MJ and epilepsy you ask?  Well I'd been toking pretty steady for 30 years before the seizures and, though I'd heard about the help MJ can be, couldn't escape the feeling  that I needed to focus on the Dilantin and it's effects.  Sure , the MJ would cedrtainly have calmed the nervous fears and much else besides but I felt I needed to focus.  I guess that's my midlife crisis for you.   The question NOW is; Do I continue on this path?    I've always enjoyed a toke and not just to veg out ( though that can be pleasant) but for the creative stimulus, the social life, the great sex and much more besides.  It's more of the glory's of random chance that the world's financial crisis has shut down the building industry and I'm now quite happily unemployed.  I get enough a bit saved and EI funds coming in for another 6-7 months maybe longer if the economy  really tanks.

    Opportunities like this are to good to pass up.  You see, much as I tried to be a monk, it's not that easy.  There'd be a few beers and a few joints after a tough week and I occassionly have a toke or two just because it's a gang thing and often found my taste buds swollen up for 3-4 days after but not every time.  No one  had any idea why but it was damn good re-enforcment of my original idea.  This last 3-4 months though I've been hearing that it's too much nutrient and not flushing the plants with pure water 2 weeks before harvest.  There has been a just twice when the swelling didn't happen and 5-6  really difficult times.  The uncertainty  has made me leery becaused  the MJ market is impossible to control.  Unless you grow it yourself how can you be certain of a consistent supply?  This week though, I found a new neighborhood supply house that swears they can keep the same supply regular.  I'm got the time and no job risk so I'm off to the doc next week with the clinics paperwork.  Getting an assured regular supply of nice schwag could really be just the thing to help me transition from the Dilantin (and ALL it's problems) to one of the newer generics.  Maybe Lamotragine, maybe another but if I'm going to keep building I can't take the risk of any seizures so some type of meds are required but I'm pretty sure the MJ will help.    Thanks for putting up with my babble but it's good to get it all this down in print and outside my rambling mind.  Here's hoping it helps a little for those others struggling with the meds.  It may take some time and is no doubt a challenge but there is a lot of help available.  All I can suggest is take it a step at a time and decide for yourself.  The docs will rarely admit it but they don't know much more that all of you do here.  Your sharing has been much appreciated.