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Epilepsy and Illegal drugs - experiences

Sat, 04/16/2005 - 19:30
Topic: Complementary Therapies

Hi there everyone. Firstly I am in no way linked to the medical profession, and have no formal medical training or experience. I just thought I would stick this in to hopefully answer the questions of some parents and kids alike who do/have/are thinking of trying illegal drugs, and who live with epilepsy. I am on quite high levels of medication to control my fits; I am in my mid 20's. Recreational drugs have played a part in my life since I was about 15, nothing wrong with my upbringing, it was perfect. It was just something I tried and liked - sorry. From my experience parents are often more worried about their childÂ’s condition than the patient themselves, something I might understand if I become a parent one day. I will try and loosely go though the drugs I have tried and the effects regarding my epilepsy. To kick off with, everyoneÂ’s epilepsy is different, from what I have been taught no one person is the same as another when it comes to this condition, which MUST be taken into account when reading this. I have smoked cannabis for some time now. All different sorts, all different amounts, all over the globe (including a regular pilgrimage to Holland). I can quite honestly say I have never even had a twitch - let alone a full blown fit - while under the influence of cannabis. Hallucinogens - LSD and magic mushrooms, are also substances I have enjoyed -- again never any problems. A good friend who is also epileptic felt a bit strange once when he popped to a local bar having dropped 2 acid trips. Probably more to do with the paranoia of being off his pickle in a public place than the epilepsy (he had done them many times before, and has done them since) but I have to mention this. Ecstasy. Not really my favorite drug. Have had it a number of times and it is not really my thing, but it has never effected my epilepsy in any noticeable way. Speed (amphetamines) is something I have used for all night parties and raves. Sleep deprivation used to be a problem for me with regard to my epilepsy; the drugs never caused me any problems. Mescaline. Quite rare these days (parents might remember it!) either synthesized of natural never caused me any problems. Mescaline is the psychoactive ingredient in peyote and san pedro cacti and has similar effects to lsd or shrooms. Cocaine is another drug I have dabbled in, not in vast quantities mainly due to the cost. Again no noticeable problems. I understand for reading up that coke could seriously affect your epilepsy; I have never had that much, therefore I would recommend you ignore my experience with this substance. Alcohol. The most problems I have ever had from a drug have resulted from alcohol, including fits. I now generally avoid alcohol as a matter of course – everyoneÂ’s different. I never mixed drugs and alcohol. That is as *far* as my drug experiences have gone, like any drug habit the temptation is to push it as far as you can. I have pushed all the above except ecstasy and cocaine as far as you realistically go, and the only effects I have experienced have resulted from the drug, not the epilepsy (non-withstanding alcohol). This rant has been written as honestly as I can. I am in no way condoning the used of illegal drugs, I hope that either parents or kids thinking of trying the above might find this useful. In the words of the late great Hunter S Thompson:  "I hate to advocate drugs, alcohol, violence or insanity to anyone, but they've always worked for me". I have written this for parents as well as kids. I know how worried my parents were about illegal drugs with my condition. I also know how worried some kids are about trying recreational drugs with their epilepsy. This experiance results from many years of trial. I apologize if people out there find this article irresponsible, it was not my intention. I am simply hoping to answer some questions that people might be too embarrassed or scared to ask. I will finish with the fact that my friends have always been very kind, caring and supportive with regards to my condition – always asked me if I have been sure about something I have chosen to do and never exhibited any form of peer pressure. I consider this to be a very important aspect of my drugs honeymoon, I would have never felt at ease if my friends were not supportive, consequently I would probably not have gone as far as I have. If there are any replies (questions or criticisms) I will answer them to the best of my knowledge. Look after yourself everyone, and take care. Please excuse the inevitable spelling cock-ups!

Comments

RE: RE: Epilepsy and Illegal drugs - experiences

Submitted by Ricky on Thu, 2005-07-28 - 15:33
What? marijuana causing seizures? I wish it were that easy to pin point and maybe then I could have forgone the temporal lobe surgery I just had.
I have used pot since I accepted the fact that alcohol seems to be the Nemesis and without doubt causes seizures in me. Even Baileys in my coffee-what a bitch.
no one has to be a rocket science to know that mood altering substances affect brain activity.  I have had seizures for 29 years and tried every med there is. I was curious that no Neurologist asked for details about my drug use. But back in the day who knows how people would have responded? I would have been truthful and my hope would have probably been a response like, "Well, keep it up." It is working as good as anything."
When I asked the dr. I was told that MJ made your brain mimic the sleep cycle and if you were having seizures at night you are setting yourself up. Consider that.
All I can say is I can't tell the difference. I've had straight seizures and I have had stoned seizures.
I quit drinking when I noticed that one seemed to go with the other. I never even suspected that smoking pot caused seizures.
And I hope I don't
Rick
What? marijuana causing seizures? I wish it were that easy to pin point and maybe then I could have forgone the temporal lobe surgery I just had.
I have used pot since I accepted the fact that alcohol seems to be the Nemesis and without doubt causes seizures in me. Even Baileys in my coffee-what a bitch.
no one has to be a rocket science to know that mood altering substances affect brain activity.  I have had seizures for 29 years and tried every med there is. I was curious that no Neurologist asked for details about my drug use. But back in the day who knows how people would have responded? I would have been truthful and my hope would have probably been a response like, "Well, keep it up." It is working as good as anything."
When I asked the dr. I was told that MJ made your brain mimic the sleep cycle and if you were having seizures at night you are setting yourself up. Consider that.
All I can say is I can't tell the difference. I've had straight seizures and I have had stoned seizures.
I quit drinking when I noticed that one seemed to go with the other. I never even suspected that smoking pot caused seizures.
And I hope I don't
Rick

RE: Epilepsy and Illegal drugs - experiences

Submitted by ButterflyGrl on Thu, 2005-07-28 - 15:38
Well, from what I've been told, smoking MJ has both it's anti-seizure benefits, and also in some cases may provoke a seizure. Perhaps it depends on what it's "laced" with.I can only handle a few drags here and there. That's all I need nowadays, and I *sometimes* feel weird aura's, and sometimes I don't. I can't even ATTEMPT to smoke it like I used to. I just listen to my body and I know when enough is enough.

Re: RE: Epilepsy and Illegal drugs - experiences

Submitted by HFTanz on Wed, 2005-12-28 - 05:03
what a bunch of pill-popping pot-heads you all are. bunch of raving lunatics. lol, just kidding. :-) I've been having generalized tonic clonic experiences since '78. idiopathic. I'm 34 now. I've been on pretty much everything medical research has thrown at us seizure-prone individulas, with varying degrees of success. Sometimes I'd be seizure free but unable to say the ABC. Then they'd change my meds, I would remember that R is after Q, but forget where I live. Or my co-ords would be so messed-up I could hardly stand up straight. The AED's have ALWAYS messed-up my memory and co-ordination, not to mention my moods. phenorbarb, phenotyin, valproic acid, sodium valproate, all of them make me forgetful, tired, aggressive etc. Just in varying degrees. Lamictin seemed to have the least amount of memory and mood-related side effects. However, it gave me such a rash I looked (and fealt) like a lizard. In my persuit to find a substance that works better than my AED's, I've tried about everything I could lay my grubby little hands on. acid, ecstacy, shrooms, cat, coke, weed, speed and a couple of hallucinogenic plants which one should normally not take if you want to keep your mind. lol. I tried all of these after the neuro's were unable to tell me why I kept having these seizures. The only substance which keeps me (almost 100%) seizure free and which I still use, is cannabis. The problem (in my case) is this: In the long run the weed seems to "up" my seizure threshold. Everyone knows when you smoke a joint you're not exactly stressed-out or worrying about whether there is too much flouride in your drinking water. However; The amount I use every day, and the time-of-day when I use it, seems to be VERY important. Two hits of a joint, after supper seems to do the trick. If I smoke more than two hits I stand the chance of actually lowering my threshold. I suppose it's the same as the AED's, take too much and you'll end up having more seizures than before the AED's. If I smoke too much (a whole joint?) I get the shakes, I lose co-ordination and I get paranoid. In my opinion people make the mistake in thinking they need to smoke a whole joint. You don't. To see if I was imagining all this, I stopped smoking my almost-joint-a-day a couple of times. I had seizures each time. I've come to believe that it's not so much the weed itself which lowers my seizure threshold but in-fact what the weed does to my state-of-mind. My state-of-mind, mood, mental health etc, seems to be the MOST important factor in determining the exact location of my seizure threshold. in Nov a dear friend passed away. I read the bad-news email round 10AM on the Sunday morning, 10:30 or so I had an aura, and about 7 minutes later I had a seizure, my first in about 5 years. Granted, I was on zero AED's at the time but I'd been on zero AED's for almost 6 months. If I was going to have a seizure (from lack of AED's) I'd have had it earlier. So it seems my trigger, in this case, was purely emotional. To get back to the topic of illegal drugs and seizures: the only so-called "drug" which is guaranteed to give me seizures is alcohol. I've learnt my lesson more than once. If I have to have a drink, peer pressure etc, it's either one glass of wine or one beer, mixed with lemonade. Absolutely Nothing else. smiles: Hennie PS: something to think about: "The white man goes into his church house and talks ABOUT Jesus. The indian man goes into his teepee and talks TO Jesus." J.S. Slotkin but then-again, it's all in our heads right? lol.

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