Smoking marijuana and drinking
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UPDATED: Sat, 06/06/2009 - 9:02pm
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Lauren...
The Reasons not to consume alcohol or smoke marijuana if you have epilepsy
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It is a common question on this forum and a frequently asked one in the chat room whether or not it is "ok" to consume alcohol or smoke marijuana when you have been diagnosed with epilepsy or a seizure disorder. I am here to tell you all something that has happened to me as of yesterday that has made me realize that it is not a good idea...
I am 23 years old my name is Lauren and I have Juvenile myoclonic epilepsy. I have had it since i was 18 and was diagnosed when I was 22.
anyway...last evening a bunch of my friends came over to hang out and play some beer pong and smoke a little weed and just chill. Well long story short in a matter of 4 hours I consumed about 5 beers and smoked a good amount of marijuana. I was suffienciently effed up. I soon found myself slumped on the floor with my hand against my head leaning for support. my best friend asked me if I was alright and being sort of incoherent I mumbled yea, she asked if I wanted to go to bed and I said yes. she brought me to my bedroom and i asked her to grab me a glass of water, when she left to get me my water I just remember slumping over to the side, and I started to vomit all over my bed and all over myself, the vomitting took not effort on my part there was no heaving and it literally poored from my mouth (sorry to be so graphic but i feel people should know) on to my bed, from then on out i was in and out of consciousness this is when i must have had the first tonic clonic (grand mal) seizure of this evening because i distinctly remember feeling as though i were going to urinate or deficate myself, i told my friend to call an ambulance and shortly there after they arrived and I could hear them talking to me however I was unable to respond to them. I could open my eyes for them but i could make out no clear faces or distinctive figures or features of anyone. Finally I was being taken out of my room on a stretcher where i had my next grand mal I was semi conscious for this one I went completely rigid and unresponsive my legs began to shake violently my left arm curled up to my face, my hand was in a claw like position, after the seizure I was post-ictal i started to become sort of angry i started trying to remove the oxygen from my mouth and smacking peoples hands away. I was then brought to the hospital and put on IV fluids and treated like I was some sort of drunken college idiot, they seemed unconcerned that i even had epilepsy...anyway the rest is mundane from here but I will say this...I am currently medicated on 250mg of zonegran and 2000mg of Keppra a day i have been on this regiment as long as other aed's since i was diagnosed with epilepsy. I am usually very cautious about drinking and knowing my limits and in the past i have drank much more then what I consumed on this evening...it just so happened that my body was not having it this particular evening and so this lead to a violent reaction.
I am telling you all this story as a sort of wake up call, that bad things can and do happen even in the mildest cases of epilepsy. My epilepsy is generally well under control and so i thought it was ok to consume alcohol and smoke marijuana, well it is the age old "it won't happen to me" story and i think that everyone who has a friend, loved one, or has epilepsy or a seizure disorder themselves should know this information first hand. Had it not been for my friends and my family, it is uncertain, but possible that i could have died last night. Please take your condition seriously and trust me when I say I know it is hard to give up the life you once knew, but no one wants to hurt their loved ones, when they have to watch you suffer because of your own stupid mistakes. a glass of wine, here and there a beer once a while fine....but dont test those limits....because i learned the hard way, and trust me when I say you dont want to and you dont have to.
love always,
Lauren
By Lauren... at Sat, 06/06/2009 - 9:02pm | 516 views | 51 comments
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Recent Comments on this Discussion
i know what it's like to go to a party, feel like you're the only person there that can't do just about everything there that people go there to do but that's the life you have to live now.i got epilepsy when i was 13 and i'll be 21 in a few days so it's not like i've had it since i was a child and it's easy or something, when you start taking meds like you're on, antiseiz meds, you can't drink all that.i'm not going to sit here and lecture you because i've smoked pot AND i've drank alcohol myself.pot doesn't affect me and you can drink a little but you can't get drunk like that.it affects the levels of medication in your body.i had my FIRST drink not 2wks after i was told i was diagnosed with epilepsy.i didn't even know what epil. was.i took my antiseiz meds whenever i remembered.i had two full glasses of vodka and cranberry (mostly vodka).i had a HORRIBLE seizure the next morning in front of two of my friends that ended up leaving because i had to go to the hospital:\ in all fairness, you didn't really treat yourself like you had epilepsy either so why should they?at that moment in time you kind of were a college girl experimenting so that's how they see you:\ good luck and BE CAREFUL!!!i know it's rough.i'm in college and my mom has to drive me everyday:(
Ashley
I agree with what you said about The Reasons not to consume alcohol or smoke marijuana if you have epilepsy. Get Tall The Reasons not to consume alcohol or smoke marijuana if you have epilepsy. How to Grow Taller Naturally The Reasons not to consume alcohol or smoke marijuana if you have epilepsy. Growing Taller Secrets.
First off, I think it's funny how Lauren was sharing her experience with us about smoking and drinking and what initially started as her trying to be HELPFUL to the rest of us turned into a debate as to whether pot is good/bad for you in general and then, she gets acused of not even having epilepsy. DOWN PEOPLE!! We are here to support each other, not to criticize. I have had epilepsy since I was 15 and have gone through just about everyone of the scenerios that each of you have mentioned. I however do drink. I make a point to take my nightly dose BEFORE I start to drink so that I don't get side tracked or fall asleep and forget. Besides, that LAST thing anyone wants to do is have a seizure in a crowded bar. (Talk about a party fowl) Most of my mishaps happened when I was younger (in my 20's) and just not being responsible. Now that I am older, even though it isn't a good idea. I do drink and have no problems. What I HAVE noticed is that lack of sleep definately will trigger a seizure for me. FOR ME, (everyone is different) the lack of sleep effects me more than the alcohol. I can get drunk (5-6 beers, couple shots) and be fine. I can wake up the next morning and go on with my day without any worries, however if I don't sleep well...I will worry because I feel uneasy and I am 'twitchy', find it hard to focus. Like I said, everyone is different, and I am definately not endorsing going out and getting hammered "as long as you take your medicine" I just think that epilepsy is one of those things that is different in everyone therefore it is very difficult to control. My doctor doesn't even know what exactly caused my initial seizure since I started having them when I was 15. I have had several neurologists and they all just say a predisposition, which in my opinion doctor's speak for "I'm really not sure". Best of luck to all of you! Epilepsy is a 'sucky' card to be dealt but that's the card that we were dealt and we have to live life to the fullest. Concentrate on what you CAN do instead of what you CAN'T do because you have epilepsy.
wow... i was just reading through this thread and am really shocked to see how far it went off the rails there, with all those unfounded and mean accusations! my god. like having your life change dramatically (not necessarily in all good ways, either.) and world shaken (no pun intended!) to the core isn't bad enough!
anyhow
i wanted to comment simply to THANK YOU for sharing your story. i agree that there is great potential for medical marijuana, and i fully support it as well (go michigan!). and while you didn't directly say it, from my experience when you're playing beer pong at a party, you're likely more apt to be taking giant hits out of a gravity bong than responsibly taking a "medicinal" dose, whatever that may be. whether it was the combination of the booze and pot, the alcohol alone, or more likely a number of contextual things going on in your life that just sort of created the perfect storm, point is, you had a seizure. and that sucks. and it's great to hear that you've found some positivity in it, because that's been something i've been struggling with the past few weeks. finding the +.
so again, thank you lauren, and keep your head up!
one love,
shivers.
Hi
I have to say that I've had sz. for 33yrs. now since I was 3yrs. old. Well unlike others that haven't started having sz. until way later in life I can understand that old habits dye hard. Except that when you're dealing with a situation like ours or any other type of illness when med. is involved it's not a good idea to put other things in your body other then what is given to you by your docs. Not only because I deal with this on a everyday bases, but because I have a cousin that's is diagnosed with by poler, which one of my docs. also said I have as well. Anyways she is a teen and is supposed to take meds for them, but she turns the meds away, sometimes, and from what I can gather from her mom. She's also taking unproscribed drugs, and drinks alcohol. She goes into fits like she's isn't even aware of like she goes crazy, as if she isn't even in her right mind. Something like having a granmal, but in her case has nothing to do with the sz. we have, all in all it is the mix of her proscribed drugs mixing with the unprobsribed ones, and the alcohol as well. Even if for those of you who have started having sz later on in life when you're use to your way of life that you're use too. It's a whole lot smarter to kick those habits then to wait until it's too late to be able to get to far over your head, and it burns your brain cells, and no meds that the docs have proscribed for you can, or even tries to proscribe to help cure your situation, will never be able to fix the cure simple because a person has no common sense to fix the bad habits that are only causing more damage to the brain, than it already has. So if a person is determind to keep his/her life style that they always had, then why even go to a doc and take meds that would not even be of use in the end? A person has to learn to let go of the bad in order to let the good in to their lives.
I am finding this discussion to be very interesting because I was diagonosed with partial lobe epilepsy a few months ago and have been trying to figure out what I can do now with my 'new life.' One area of concern is the social drinking. It is very hard for me not to drink when others do. So for two months I didn't drink. Ironcially, my neurologist NEVER said not to. On my own I thought that maybe I shouldn't because of all the new chemicals in my body.
After about a month, I decided to limit what I drink and monitor my behavior. It is hard for to have my husband come home from work and have a beer. But, I don't think it is right for me to monitor or modify his behavior to suit my needs. Going to a bar and watching a game is hard. So I've made a body 'compromise'. I may have ONE beer or glass of wine twice a week. That approach has worked for me.
In case you are wondering, I am not a 'young adult' going through transition issues of youth. I am 53 and the epilepsy was discovered after a mild stroke. The 'concept' of drinking and social has been 'hand-in-hand' for me for about 35 years. So it is also a transition issue. Thanks to all for your opinions. I will weigh them very heavily in my 'new life.'
No alcohol is a must. My brother and I are both epileptics and all the people I know who are epileptic have never won with alcohol. There is no way to escape that the morning after recovery is like starting again and you lose days of feeling out of sorts. Marijuana on the other hand is one of the most shameless of all the governments lies to its people. How it continues is a crime in itself. Google Harvard's studies on the benefits and remember that all news is not the truth. Science speaks not as an instrument of government or special interest but because there are truths, such as we have receptors at birth for THC and this chemical stops some seizures before they grow.
A recent commercial to quit smoking said it blocks receptors for nicotine, but there are none. Epileptics are all different but for those who can never stop perseverate thought, calm and quiet is possible and finding something that gives you that is why so many continue to smoke. We are a land of the free but we are not as free as we would be if the government looked at how much it would save in dollars, lives, dignity, by just doing what it correct. Drug companies want to dirty it and make it unsafe in a pill form. Heroin found a home and it has become very popular in pill form. Vicodin the drug of the self-rightous legal drug users. Except this drug is addictive and does not make you nicer.
Hi Lauren,
I read your post last night and cried. I have been searching for these forums for months now and finally found what I'm looking for, and though I seem to be maybe even more confused than when I started I have a filled a great hole in finding some other people who seem to actually care.
I am 25 and was 4 years ago found myself lying on the floor of my work with two paramedic teams around me and it went downhill from there. I have experienced a wide range of seizures (including sleepwalking) and tried a range of meds which my body reacted quite badly to. I think this must have scared my friends a little bit aswell becasue my boyfriend didn't stick around and I've got only one mate who ever bothered to come to the hospital so I didn't have to get a taxi home - my family lives over 2 hrs away.
I don't think I took this whole thing seriously enough because I remember when I was told I'd have to take medications for the rest of my life I didn't care, I didn't care about the blood tests....or all the other tests or the fact I'd just been diagnosed with a medical condition I didn't even understand. But when the doctor told me I wasn't going to be able to drive until they got this under control I lost it. I left the room and didn't want to hear any more. I didn't want to hear what he said about being careful with my alcohol and my drugs.....he'd just taken my independence awIay.
I've always been honest with my docs about my substances and what I consume and I thought I had this under control. I got my license back and in February this year brought myself a brand new car. In June after having lunch at the pub (2 beers), I was driving home only to wake up behind the wheel of my car with someone banging on my window and people standing around staring with faces agasp. The person banging on the window turned out to be my friend who I'd just had lunch with and was following me home in his car. I had gone into seizure just before a roundabout, hit two cars on the roundabout, straight through a fence, clipped the corner of the building and bounced back off a pole and and wedged head first into the building. My speedo was locked on 90km/hr. I came out of this with just bruises on my shins - If I had the same accident in my old car I would not have survived - Go Mazda!
I've now lost my license again and I'm not arguing this time. This time I'm asking myself what I could have done to change things. Was it the 2 beers I'd had at lunch? Was it the fact that I'd been drinking on consecutive days? Was it the lack of sleep I'd had the night before? Was it the pot that I'd smoked the night before to help me sleep? Was it the one dose of medication I'd missed that morning? Was it the stressful night I'd had the night before? Or was I simply going out in symapathy for my cat who was at the vet after having a seizure at 12.30 the night before? (Yes that's right...my cat!).
Sorry for the long post but as I said, this is something I've been looking for for a while now. I'm not looking for anwers, I'm just a person who's a bit lost in their thoughts who after 4 years is realising that this is life changing.
hi i just want to say it seem we have alot in common. ive been haveing my seizures for almost 5 yrs now im 29. when i first started having mine i didnt want to stop going out and drinking & smoking so i kept that up just going aboiut having my seizure as usual and not caring about everything ive lost everyone too. But you know what i did do i quit drinking and i did it on my own not only did i do this on my own its one of the thing in my life im proudest of its been alittle over a year. yeah im sure i can have 1 or 2 but when you dont have any its a great feeling of self control. What i did notice too is when i do have my seizures they arent as bad i guess in one way or another im not so beat up. Now as for smoking i smoke all day everyday and thats no problem with our condition and espeacially from the night before. another thing too we have in common too is my last seizure i had was after i left the vet after having to put my cat down that was hard i was in a car too its a good thing i cant drive too i just paid my car off. i never thout i would say this but i really think drinking isnt good at all for us and the good feeling u get when u quit and say no its the best. good luck with everything
Hi Missellie, I'm so sorry to hear about your unfortunate run in with this disease that has brought us all together. But listen, I wanted to just extend a hand if ya need someone to talk to I'm happy to discuss this with you and anything else. I'm not on here a lot anymore but you can e-mail me if you'd like. Laurengrygo@yahoo.com I hope all is well. feel better.
Love, Lauren
im not a doctor, however I think a lot of things that contribute to the possibility of having a seizure is lack of sleep. for instance, in Alaska, epileptics qualify for medical marijuana. Though alcohol is obviously completely different. Some people, however, I think can make the mistake of thinking that marijuana and alcohol cause a seizure, whereas it's really the environment. Think about it, people stay up late in party situations, where they usually can forget to take their meds, have lack of sleep, and generally exhaust their bodies. Don't mix up substances with not taking care of your body. Sometimes they can be completely different. Though, everyone is in fact different, so I'm thinking initially 5 beers did you in, plus the weed which is a risky thing to mix. [known from experience]. I think it's best to not inform people these things unless you know the type of epilepsy everyone has, and their body type, etc. no offense intended, just maybe re-evaluate what you're saying.
I disagree completely. Any drugs your taking into your body whether its alcohol, THC, or smoke juice (nicotine) alters the way the body works. The body reacts to such substances the same way it reacts to other poisons that enter the human body. Although environmental conditions may contribute to symptoms, the main ingedient is the drug. I feel that your reply is being used as a justification for using such substances, which is an issue in itself.
Johnny Blaze
Hi Halox,
The hot weather here a few weeks ago was too hot for our beautiful grapes, but we kept our hopes up till
this week. There's no agreement on how high a temperature, and for how long, different grapes can take
such (our temps got above 110 degrees a few too many times). As amateurs we just wait and sample the
grapes when they look about right. With an excess of heat, the grapes may become extremely sweet, but at
times, very loaded with alcohol right on the vine. Careful sampling of the most exposed grapes quickly
reveals the presence of alcohol, but the extent of which types, judgment depends on the after-effects.
With epilepsy, my sensitivity to methanol is very extreme; even an aspartame soft-drink stored too long
in a too warm storeroom will give me an hallucinogenic aftereffect. My tolerance to ethanol seems to be
much better, but below normal. The presence of small amounts of alcohol in most everything edible, and
with alcohol being produced naturaly in the normal living human body, a minute excess of methanol in
anything gives me a real problem with epilepsy; even the methanol in less than fresh vegetables is a
problem. So, sampling high-heat exposed grapes is a dangerous activity for me because of my epilepsy and
the possibilty of methanol.
One of my college classmates was arrested for being under the influence, and he was ordered to write a
research paper on the dire and totally unbeneficial effects of regulated and controlled substances, and
publicly post it with his story, in lieu of other punishments. I loved writing and helping with research
papers at the university, but that was no temptation for me, so my classmate was obligated to write total
balderdash, and spread it as truth in his paper, to satisfy American justice.
I hope my sampling a stressed grape isn't viewed as justification for the romance of toxicology, but life
with epilepsy is often a death-defying challenge, in addition to all the anti-epileptic drugs.
Lauren
I had a similar experience. Just 2wks ago I went out w/girlfriend to have some drinks. I just drank 3 beers and still waited to take my medication. Early the next morning I had a seizure. It's really not worth it but I can understand you just want to have fun and not worry. I learned my lesson with that situation so I play it safe. I know there is no way around not having a seizure I have also learned that if it's going to happen then it's going to happen. I wish you all the luck!!!!
Lauren - Thank you for Sharing your Story. I Agree with you. Its not okay to Consume alcohol if you have Epilepsy.
Something Similar Happened to Me. I had a Brain Injury in 1997. After that I was having Simple Partial seizures undiagnosed. Then one night in 2002, I decided that I could get off my meds for the night and go out drinking with my Friend. So I went drinking with her.. and 3 days later, I had my First Tonic Clonic since my Car accident. After that time my SP turned into Complex Partials.. and I had Grand Mals about 1 time a year when they changed my Meds because I was resistant to medication. in 2008 I had a Right Temporal Lobectomy. And so I do not think its okay to consume alcohol because most people are on medications.. and medications do not mix with the alcohol. its not safe for the epilepsy. I read somewhere once that Alcohol can stay in your Body for 3 days and you can still have a seizure after that.
Leah
Thank you for responding Leah, I'm sorry for the tough times you have been through. My doctor also told me that If infact i do drink even one drink i shouldn't even think about driving for the next 72 hours (to avoid having a seizure while driving.) thanks again Leah I hope things are getting better for you now.
Just putting in my two cents for a balanced discussion.
This article, http://my.epilepsy.com/epilepsy/newsletter/jul09_AEDs , by Robert S. Fisher, M.D., Ph.D. Editor-in-Chief of Epilepsy.com, cites that siezures caused by alcohol come as a result of withdrawal from the drug, not the intoxication itself. This means that seizures are most likely to come when the alcohol begins to leave the body, probably late that night or the day after a night of heavy drinking. Alcohol can be dangerous for epileptics because it leaves the body more quickly than other drugs.
I only have grand mals, and no way could I have maintained a level of consciousness where I could remember what my body was doing. In my opinion, if this were tonic-clonic, you wouldn't "remember" having to urinate yourself as you would just lose control, I'm surprised you remember how your hands looked, or anything for that matter. I can't even remember my name for about 10 minutes following the seizure. Maybe mine are just extreme, but this account seems pretty tame compared to what I have considered a Grand-Mal.
Many people with epilepsy have found that marijuana acts a a fast-acting measure to prevent siezures. Also, people that are taking anti-seizure meds and still don't have them under control, myself included, have found that they have never had a siezure after responsibly using marijuana. It worries me that people may read your story and discount marijuana as a treatment option. It's improved the seizure thresholds of many sufferers. You can find three scientific studies at this URL, http://ripatients.org/medical/epilepsy/. Check out " Chronic administration of cannabidiol to healthy volunteers and epileptic patients. Pharmacology. 1980;21(3):175-85. Cunha JM, Carlini EA, Pereira AE, Ramos OL, Pimentel C, Gagliardi R, Sanvito WL, Lander N, Mechoulam R."
Maybe the meds you're on, combined with the alcohol and marijuana gave you a terrible and unusual case of "the spins" (the anxious, uncomfortable, nauseous feeling some people get when mixing specifically marijuana and alcohol. Ask any college kid.)
I appreciate your sharing of your experience. Hope this helps, and Lauren, I hope your well.
while I do appreciate your educated response, sources and citations, I must say that I do not appreciate your making an assumption that I was simply having the "spins". I had Alcohol poisoning which caused me to have 2 grand mal seizures, I have never had very violent seizures even my first grand mal before I was on meds was brief with hardly any post ictal stage and a very abnormal recovery, what I mean by that is, in the hospitsl I was wide awake and feeling totally fine except for some stifness and soreness
I never said definitively that marijuana was the cause I am only giving people something to think about before they decide that despite having seizures they are going to be irresponsible and consume LARGE amounts of marijuana or alcohol or the combonation. I was simply relaying a story, I am not preaching that marijuana should be exiled as an alternative medication for people with epilepsy. I told a story in which something very unpleasent happened to me and in which marijuana happened to be involved.
I think the alcohol had the main part in your seizures, not the marijuana. I have never had a seizure while smoking pot or after I smoked it. Drinking is definitly the problem. I dont usually have a seizure if I smoke the night or the morning after I drank, but if I dont smoke it is almost a gurantee that I will have one if I drink.
Thank you for sharing your story. I found the title a bit disturbing also though, mostly because alcohol and marijuana were put in the same category when for seizure control, for many people including myself, they are complete opposites and I find it upsetting to see them so frequently lumped together as if they were the same kind of drug. Alcohol and it's subsequent withdrawl brings the danger of seizures for me and I have found to be dangerous, especially in quantity.
Marijuana, on the other hand, is the one and only way I know of to stop a seizure from happening when it's close. Even large amounts of marijuana would just make me sleep but I'd be less likely to have a seizure than if I'd had nothing.
One suggestion - the biggest danger from alcohol is dehydration, which makes seizures much more likely. If you do drink, try to drink a huge amount of water along with it, it makes a big difference both in the likelihood of seizure and how you feel the next day.
Lauren thanks for your story. The person who attacked you has no business being on this website and should be turned in for being mean abusive and hateful.I have had grand mal seizures for 40 years and I would never attack another person in this forum. This sight should be for support and sharing of experiences. God bless everybody who has to live with this awful disease.
Although I disagree with the part of the comment that Lauren's episode might have been 'the spins', I wouldn't call that person's comment an attack, certainly not mean or hateful. Also, if that person has or knows someone with epilepsy, they have as much right as the rest of us.
Please try to understand, there is so much misinformation and prejudice out there about marijuana that people who have recognized it's usefulness are often compelled to try to put correct information out there. It's especially difficult to see it happen on a forum for a disease which is one of the most commonly accepted medical uses for the drug.
thank you so much!! really truely from the bottom of my heart thank you
I too have tonic-clonic seizures.
I am curious how you managed to remain conscious long enough to remember that you felt like you were going to deficate or urinate on yourself. When I get a tonic-clonic seizure, my body seizes and goes into convulsions, and at that point I am no longer conscious. I will remain unconscious for many hours until I wake up without any recollection of the event, nor of any moment leading up to the event.
How did you also manage to tell your friend, after having the seizure, to call an ambulance?
I question the validity of you having epilepsy at all. I think you are a liar, and I apologize if you are not, but there are too many other claims, including my own, that support the validity of cannabis for numerous reasons, alternative medicine for epilepsy being only 1 of them.
I'm not going to have this conversation with someone who is completely void of empathy.You need to learn the difference between Drugs, Plants and Plecebo's.
I do have tonic colinic siezurs also , and know Lauren (catfishie <3 !) well. For a person throwing wild accusations around about 'the validity of [Lauren] having epilepsy at all you have a lot of nerve. You make accusation and base them on nothing but your own admitted support for medical "cannabibis". It is legal where I live and that's fine, no problem. But that does not permit you a broad based permit to run around and call people a liar. You are a fine example of intolereance. You appear to be the person who is "void of empathy".
Wookie/Chris
thank you wookie fishy!! i love you!!!
I must say what you said was highly offensive. Let me say that number 1. Marijuana is used to treat SOME forms of epilepsy, yes, this much is true. I need to make it as crystal clear as possible to you as I can that, no where in the forum do I mention my opinion of the use of MEDICAL marijuana, or the unfortunate people who are put in the position to have to use it. And for the record I am very much a supporter of medical marijuana. Number 2. I have what is known as Juvenile Myoclonic Epilepsy, it a form of epilepsy that causes generalized seizures that are usually reduced to one side of the body ie: an arm jerk, leg jerk, facial twitch ect. However, these seizures and this form of epilepsy can also lead to Tonic Clonic seizures. When you have Juvenile Myoclonic Epilepsy specifically, a doctor will usually tell you to refrain from the use of alcohol and marijuana as well as other brain altering substances. 3. Have you ever heard that the brain is a very complex organ? well, it's true. No 2 peoples seizures are ever identical, ever. Thus the reason it would appear that our tonic clonic seizures differ greatly. I have talked to other people on this website in the chat room who have been diagnosed with having Tonic-Clonic seizures who remain fully conscious during the whole experience, but there bodies are completely unresponsive. In fact when I had my first TC I fell, my covulsions lasted all of 2 minutes i was unconscious and unresponsive for another 3 minutes and when i came around I was hardly post ictal, there was some confusion, I was unable to walk, but when I was in the hospital recovering I was wide awake and feeling fine except for some soreness. If you'd like You can call Dr.Orrin Devinsky (one of the founders of this website) my epileptologist and ask him all about the varying different types of grand mal seizures he has seen in his life time. And if you need some concrete proof that I do infact have epilepsy then you can go to this link... http://www.newsweek.com/id/193484 the picture of the girl on the left hand side with the eeg leads attached to her head, thats me. I was in newsweek magazine in which the cover story was entirely based on epilepsy, you should read the article, you might learn something. It is unfortunate that I feel the need to redeem myself to a complete stranger and the only reason I am, is so hopefully in the future you'll think things over a little more before writing cruel comments on peoples forums, I was simply sharing an experience with people who have epilepsy so maybe they may re-think drinking one more beer, or glass of wine...and yes in my case smoking more weed, because clearly in my specific situation, the combonation could have been lethal. I was never speaking for anyone else, just simply reciting a story of an experience that scared the living shit out of me, and trying to be helpful to people with epilepsy who often wonder "what would happen if I took a few shots or smoked a ton of weed?" Clearly you misinterpreted the entire point of the forum and decided to attack my credibility instead, so i hope this clears things up for you and I hope you know you truely offended someone based on false pretenses and terrible judgements.
Lauren – I agree with you about IostOmen post – I also feel the same about your original post. You both are taking a position that’s wrong. Each person is different – that's why there are many AED’s and more coming out. Each AED affects each one of us different. Marijuana is the same way. Marijuana helps some and makes other worse. So for either one of you to take a stand and make a statement that’s always true is wrong.
huh???
I smoke cigarettes, but don't drink or smoke weed just for the simple reason that I don't have to ask myself after having a seizure if it was drinking or smoking weed that caused me to have a seizure..? I know, I know, I'm working on the smoking thing too.
Hey Lauren,
Hope your feeling ok. Its good to see you share this I read the article you sent me. Hope things get better I agree with you they do not mix with us and our prescritions we already take.
i am feeling better now dani, thanks for checking in :)
Hi Lauren, I know how it is when you don't listen to your docs. until you think. 'Oh yeah, they were right." I was 24 when I started having seizures (I am 27 now). I only drank on occasion as a social thing before my seizures started. I did have a few drinks one night about 2 summers ago the night before I went to an amusement park. The next day I went on a roller coaster and I had a couple grand mal seizures when I got off. I was sent to a local hospital where they said that I had 3 or 4 before I woke up and told me that my dilantin level was way too low. My fiance' asked them before I woke up if I had any alcohol and he told them 'no.' However, when he told he told me about that when we got home, I figured the docs. were probablly right. However, I do admit that I smoke 'pot' on occassion as a socail thing when i am at a party. I have had no problems with marijuana so far. I am sure, however, things are differnt for everybody depending on what type of seizures you have and where they come from.
Lauren,
Here is a similar story. I am married to a man who used to drink a lot and and got stoned nearly every day. After we got together, he seldom drank and smoked marijuana less frequently. Then last October hehad a grand mal seizure in his sleep and was diagnosed with mild sleep apnea. Doc told him not to consume any alcohol, as it increases the apnea and lowers the seizure threshold. (Yes, he had been drinnking the weekend before his seizure.) So, three and a half months later my husband is out of town on a trip and decides to drink beer and smoke pot. Comes home and has another grand mal within 24 hours. Four months go by, no alcohol, then he goes out of town again for a work-related trip. Goes out each evening with his colleagues, drinks wine and beer and smokes more pot. Comes home in the afternoon and that night has two grand mal seizures in less than 3 hours.
NO ONE can tell me these are not related. He has been through every test and scan, and no reasons found. Doc says maybe he is in fact an alcoholic and one of those types who are very very sensitve and even an occasional beer will cause a withdrawal. NOw, since last week, he is on Keppra. I think he could have prevented the seizures of last week altogether(and stayed off meds) had he followed the doctor's advice and stayed the heck away from alcohol and pot. But he is, obviously, too much of an addict.
Pot is NOT the friendly little organic toy its users think it is. Talk to someone who really knows the brain--like an anesthesiologist who works in neurology... They will tell you how strongly it acts in the brain, that it is damaging and your neurotransmitters get messed up and teh receptor sites are coated with THC.
People, take this seriously, please, if you have seizures or someone in your family does. It is not worth the risk and heartache that using pot will cause you and everyone who loves you.
Thanks for posting, Lauren, and getting this dialogue started. I would appreciate any feed back from others who have seizures only at night.
Hi there. I used to have my seizures at night or first thing in the morning, so I felt it didn't influence my life, as I was always at home and generally had people around me. however, as I've got older, my seizures have become more frequent (and I HARDLY ever drink or smoke) and occr at any time of day or night now - the one "advantage" is that I now have petit mal's as well and these tend to becme more frequent before a grand mal, so I have an idea of when they're coming. I wish you and your husband all the best!
Lauren,
I think it takes a big person to tell a story like yours. I am sorry you had to learn the hard way, but thank you for sharing your story. I hope you are feeling better now, and it's good you had friends that care for you enough to notice something was not right. Glad you are okay.
side note to robot and 3hrs2live: I don't think your fighting about this issue in the right place, she was strong enough to tell her story, and you are using it for your petty little fight. Please take your issues elsewhere.
Again thanks for sharing Lauren and I am glad your okay,
Sassy aka Sassyfish
thank you sassyfish <3
Sorry sassy... I'll stop...
Hi SassyM,
I'm of the understanding that the reply bar to posted comments, comments commenting on a forum, is
there to reply to the content of the comment. Trying to enforce rules of conduct in such replys to
address only the original forum and not inclusive to the comments, comments stating possibly
erroneously things as established facts, preclude differences of opinion; such as on the effectiveness
of various AEDs, and their availability and side-effects, will only frustrate the spread of knowledge
and information.
I know you don't follow your own rules when you objected to my opinions and "book-learnin" about the
dangers of Positive Thinking obfuscating major health threats through blind optimism with epilepsy and
subdural hematomas masquerading as migraines. Your objections were posted more or less randomly
throughout this website and in far removed subjects. And now you post your rule about your labeled
"petty little fight" in the direct comment section of the forum instead of the sub-reply section of
the relevant comment. Labeling concerns about marijuana that many people find a life-saving medicine,
but difficult of quality access, as a "petty little fight," is rather strange.
Using arbitrary rules to oppress differences of opinion by isolating them to an "elsewhere" would
kill medical science and the expression of personal knowledge of experiences with everything
relevant to epilepsy. I try my best to address comments with relevant replys, much as an appendices
further details abridged subjects in a book. I know I feel strongly about Human Rights with medical
care and medicines whenever they're abruptly assumed to be legally and morally limited in a comment,
esp. with the Budget Crisis sending people with epilepsy to the "elsewhere."
Lauren,
You are making assumptions
– either the beer or the weed could of cause what happen to you-
or just the combination of both could have caused it,
it could have be some other thing that you did at the party,
It could also be something that was added to the weed.
That’s why we have to take each thing one at a time when you have “E”.
Take small steps - not big one's.
And just in general...weed is actually "bad"...for a couple reasons- kills brain cells in bulk, its addictive, changes brain chemestry, its illegal in the US, and it tends to be pretty pricey so its not a good habit if you need money for something besides your (not you personally, just you in general) drug addiction....
Hi iRobot,
Independent medical research has long ago invalidated the 1936 anti-pot propaganda film
"Reefer Madness." Also, medical marijuana is legal in many states, and bizarre interpretations
of Federal Law with federal levels of authority against states' rights are applied much like
the Prohibition Era against alcohol transportation and monetary transactions, which didn't
outlaw drinking alcohol. I can't stand the smell of marijuana, even though it may be an
effective treatment of many cases of epilepsy, but I am also allergic to Apple Pie. And as
with many instances of other expensive AEDs, the cure may be worse than the disease in the
long run for many particular individuals who should all have the basic Human Right to make
their own decisions.
And the basic human right to fry their brains and destroy their health and the health of those around them? I've studied the effects of marijuana for a graduate school thesis (not on myself) and it alters brain waves. Its a psycogenic drug-thats right drug- that alters how the brain works, and in the long run is horriable for a person. It can cause numerous cancers, which is bad, and it can also cause other health problems, such as: decreased immune system strength (due to damaged brain cells and T-cells), chronic bronchitis, acute toxic psychosis, panic attacks, flashbacks, delusions, depersonalization, parinoia, hallicunations, and uncontroloable agression. It also causes attacks in mental dissorders such as Manic-Depressive Disorder, psycosis, and schitzophrenia. So as you can see, it has been known to exaserbate problems, such as panic attacks, that it is being used to treat.
You're exactly right, by the way. Prohibition made the sale of alchohol illegal, and as you know from US History, it was the only constitutional ammendment ever repealed...They got that it didn't work. And as far as state's rights go, what do you think the entire Civil War was about? Not slavery, or even a way of life. No! It was about a state's right to secede from the Union. The Supreme Court ruling that took place after the Civil War clearly states that they can't; the cheif justice said "I think the Civil War decided that". One result of the Civil War was a strengthening of centralized, or Federal government. Now, a state is obliged to follow the laws of the Federal government just as it is obligated to honor, not necessarily follow, but honor laws of other states (marriages, ect) by the Full Faith and Credit Clause of the Constitution. Now, something rather similar but radically different forces states to follow the laws of the Federal Government. It is called the Supremacy Clause of the Constitution; it states that states must abide by any law set forth by the Federal government in the Code of Federal Regulations (insanely boring read) and must abide by any treaty that the US is a party to. So, actually I'm all for "legalize, regulate, and tax it" but the government hasn't done that yet, so the rules is the rules.
And I don't think she was taking about medical marijuana by the way...
There's more, but I figured you got the message.
Hi iRobot,
I guess your concern of range of address of a posted forum can be used as a Catch-22 to silence
anyone into the obscurity of "elsewhere" when they go beyond unwritten group prejudice.
SassyM carries great clout on this website, and what she says about everything involving epilepsy
goes or the person with a difference goes. Someone sure obliterated most of my forums and postings
as she was calling me names and telling me to go to her "elsewhere" previously.
My fears about access to AEDs and health care with the problems of epilepsy are coming true; just
today in the LA Times, people are so scared they demand to remain anonynomous about "Nightmares are
coming true" where it is quoted as a person citing "I expect suicides, premature deaths, a horrible
disruption of the social fabric.... We're headed toward market-based social Darwinism where only the
fittest will survive." All my disability cuts with my history "booklearnin" and the CA Governor's
citing his last only solution, makes me wish I hadn't read the book "Hitler's Willing Executioners" by
Daniel Jonah Goldhagen that contexts the Euthanasia Program with the then continuing Final Solution.
Maybe us Epileptics can live on a well-balanced 300 calories a day too (all compatible with Local,
State, and Federal Law)! But don't touch that devil's weed!!!
Hi again iRobot,
I'm sorry but I can't find the secular University published book on international studies of the
benefits and dangers of marijuana in treating various medical conditions. I'm pretty sure I still
have it in one of the stacks of my medical books. It was published less than ten years ago if I
remember correctly, so it is very recent for such an extensive work. About the only problem with
the book was the extemely large number of citations to respected medical journals that took up
about half the book. Some of the articles did cite the problems of scientific research in the USA
since the USA outlawed any research incompatable with many of the USA's drug laws. I'm sure you had the
same problem with USA sources being of legally limited scientific objective value. I've read
other books that were very hostile toward the benefits outweighing the drawbacks of marijuana
treatments, but their references were generally very poor and outdated, and frequently would cite
political and religious lectures.
If I understand the relevant federal drug laws correctly, they are not an amendment to the
constitution; I've noticed that the Federalist Society has a problem separating the Federalist Papers
from the Constitution also, and the notion of states' rights seem to be a flip-flop problem with the
seduction of unreason between bicameral concepts as noted by Rousseau with his political terms of
observation as right and left. The Rehabilitation Act and the ADA are much more recent and relevant
with epilepsy. I wish you were with me in Federal Court when I tried to actualize my rights under these
two laws, so as to legally explain how Federal determinations outweigh State determinations, and not
vice-versa. Access to medical treatment and the availability of research sources poses an invalidation
to the older drug laws unless the USA wants to further isolate itself from rest of the scientific
world and violate its own Acts. Whether a violation of a Human Right at any level of government
is condoned after such decades long lectures to the world of what's right and wrong for everywhere but for
the USA isn't going to be easily ignored anywhere. Federal judges told me that the Code of Federal
Regulations was the lowest levels of administrative formulation of procedures, especially with the
establishing of epilepsy documentation as a handicap or disability, outweighed by every law and act
in terms of any incompatabilities, far as far can go removed from the Supremacy Clause.
I think you noted the address, and I believe I understand your message, but I don't believe the moon
is a perfect sphere despite what the official rule book says about precluding self-evident truths or
scientific facts. LOL.
I did no other "thing" at the party
no one else had any negative reaction to the marijuana
and what assumptions am I making?
thanks for sharing your story lauren.
<3 kat
you're welcome kat, thanks for reading. :)
peace R.C.
Hi not High
You made no assumtions
Put something in the weed lol
she says what she did drank beer and smoked dope ? assumed what.? (sorry, I never say much, but I see that a lot on other web sites)
Thanks
Thsi actually gets brought up quite a bit here . My story in fact is the same
Only oh ,oh ,oh, lol ,so much worse waaaaa
sounds familar is all , drinking ,no control ambulance
JUST AS HEADS UP ....my E was brought out by alcohol or at least my own stupidity CAUSED BY BEING DRUNK.
I feel now, I have had auras all my life, But a head injury I got while drunk was the first "offical" gmal I had
I feel lucky and have never felt sorry for myself or whined much about E ,though ? It turns out that is not the Norm either .
I,m45 and have had gmal szs for 15 yrs BUT have been sober for 14 yrs .
for the first yr or so it was thought this was ALL alcohol imduced szs.. Also had many in jail where I was ,because of stupidtythen a revolving door of hosp.,ljail,hospitals ambulances.etc.etc.
But I was never even considered for treatment because of assumptions and was given many drugs that knowing what I know now ,COULD have killed me .
The pot and E I know nothing about .
although I,m an old school dead head I simply can not use, because "it would make me just dumb enough to drink" lol I qualify for a script in another state though ? weird . The recovery time from a lot of this is exactly like smoking a lot of pot though . I have used that desciption when telling doc,s also and they like it.and several adopted it as a way to describe what an E patient goes through .funny.
I hope all reading take something from this also . Rick
I have only been diagnosed with Eipilepsy for a few months now and I have been careful not to drink more than 2 beers when I go out. I went to a wedding on Saturday and drank about 6 hard drinks and had a very bad reaction. I have nocturnal seizures only, and I woke up about about 30 minutes after going to bed and was having a simple partial that was very intense, my boyfriend said it sounded like my words were a cell phone with very bad reception because I was studdering so bad nothing I said made any sense. The scariest part was my heart was going to fast, I am sure it went into atrial fibrilation because I have never felt this feeling, it felt like a bowl of jello jiggling in my chest when the seizure was over.