New here

[CommonlyKnownAs Oi]

Hi
I have had what I am pretty certain is Epilepsy since 1996. I have been diagnosed as 'Drug Psychosis' but I am certain it is NOT this.. I have had all types of seizure and still suffer often. I used to use Cannabis and this is why they diagnosed me as 'Drug Psychosis'
When in fact I have had ALL my major seizures in the last 4 - 5 years, which is the same amount of time since I stopped using Cannabis.
I don't know how Drug Psychosis can cause 'Grand Mal' 'Petit Mal' AND 'Absence' but I'm not a doctor, all I know is I am sick of living like this
What I would like to know (if possible) is, has anyone heard what I have been researching, that Cannabis eases/stops seizures?
If I'm honest I always suspected it was not Cannabis that caused my Epilepsy and in fact helped stop me having seizures, I found that when I used to get an Aura and used Cannabis it only ever ended up being an Aura and NOT a seizure.. Before anyone get's any ideas that I'm trying to promote the use of Cannabis please do not offend me by making these accusations as I have no wish to be a dope smoker just want a cure or something to ease these fits!
The facts are: I have had many many Grand Mal fits since 2007 and am now on a massive dose of Keppra over 3000mg and STILL I have fits.
Any suggestions or feedback would be very much appreciated

 

[epileric]

Welcome CommonlyKnownAs Oi

You are right in that cannabis can help seizures. It has the same action on the brain as most anti-epileptic drugs do, it slows the firing of neurons.

That being said, it is because it slows the firing of neurons that people can develop it when using cannabis for long periods of time then stopping. Your body gets used to having the neurons slowed and without it they they misfire causing seizures.

Often when ones body has gotten used to it the cannabis is less likely to help the seizures than a medical Anti-epileptic drug is.

This has been previously discussed so type "cannabis" or "marijuana" in the search bar at the top of the page & see what comes up.

 

[Nakamova]

Hi CommonlyKnownAs Oi, welcome to CWE!

As Eric has pointed out, because cannabis can have anti-seizure properties, stopping and starting it can affect the system the same way that stopping and starting AEDs can. The seizure threshold can be lowered, and you can be more vulnerable to seizures in the future.

There is ongoing research to find ways to use the body's own form of anti-seizure cannabinoids (called "endocannabinoids"), but it hasn't yet led to a medication. (Interestingly, high fat foods tend to stimulate the body to produce endocannabinoids -- although I don't think snarfing a bag of potato chips is enough to stop a seizure.)

Since the Keppra isn't entirely successful, have you spoken to your neurologist about trying a different med? I know the "medication merry-go-round" isn't much fun, but it's possible there's something out there that might be a better fit.

Best,
Nakamova

 

[Endless]

Hi, CommonlyKnownAsOi,

Welcome to the forum!

There's some writing about Cannabis in this article. It was written by an MD and a PhD who specialize in the use of alternative (natural) medicine for epilepsy:

http://pcs.hmc.washington.edu/Epilepsy/EpiInfo/CAM.html

]Q:I tried a natural remedy for a while for my seizures and it seemed to work. Can you prescribe it for me?
I get this question most commonly regarding marijuana. Many users of cannabis feel that their seizures are less significant when they smoke it. The data on long term toxicity of smoked marijuana in adults is well known (probably worse than cigarettes, but not as bad as chronic heavy alcohol use). There are more significant concerns about its use in teenagers (and probably young adults). Paranoia, and effects on mood and motivation are quite concerning. Data on short-term effects on seizures are mixed, as it reportedly is helpful in some, but may make seizures worse in others (27). Long term safety and efficacy data for epilepsy are lacking. Given the rates of depression, other psychiatric problems such as paranoia, and unemployment among epilepsy patients, one should show extreme caution in advocating use of marijuana in this population. Most of us discourage its use, and I do not prescribe it.

 

[CommonlyKnownAs Oi]

Thanks guys for some great responses, really helpful... I will find out tonight if my theory is correct as I am about to try out Cannabis.. I know one thing for sure, that when I smoked it a few years back I never had a Grand Mal.. So I am going to go for it, will just have to see >GULP< wish me luck lol and I hope I'm still alive to let you know the results

BTW, almost forgot, I have been on at least 3 different meds and Tegratol Retard was the only other med that did anything, but Keppra has been the best by far, obviously not enough to stop the fits though xx thanks guys xx onder:

 

[CommonlyKnownAs Oi]

well.. this is the 2nd day and I am perfect, no Aura's at all, just feel like I'm on a merry-go-round, had the giggle fits and been a bit too stoned but coped and now getting used to it. I can only tell you guys the truth and this is it.. I tried the weed whilst having Aura's, since a week or less ago, and the Aura's have gone!!.. by rights, I was expecting a seizure by now but the weed has stopped it, there simply can't be any other reason. I wish you guys the very best and wish you find out and get the success I have..
I'll post again later, keep this updated, but for now, from me, in shock, amazed, feeling real proud for finding this out, happy, new life
till then
peace all

 

[BigWill]

Glad you found some relief with cannabis. I too use it and feel that it helps me greatly. I currently take Keppra, Lamictal and Kolonopin and that combo gives me ZERO appetite and the cannabis takes care of that. Its also great stress relief.

 

[Nakamova]

I'm glad your auras are being controlled. I hope you continue to do well. Let us know how it goes.

Just a heads-up to all: The note below is one I posted in another recent thread that mentioned marijuana:

As a forum we have to be careful not endorse something that might be illegal or dangerous for some folks. I think CWE members generally know to treat everything posted here as collective wisdom that can be appropriate for some and not for others -- but it doesn't hurt to provide a reminder of that. We do have several threads in the archives about marijuana and epilepsy and it's an interesting (and controversial) topic. If discussions get too inflamed we have to shut them off.

Take note, and take care.

 

[CommonlyKnownAs Oi]

Great to hear that BigWill, because I was afraid when trying this experiment and even though I feel awesome I still have tiny doubt in the back of my mind, and this is caused by some peoples (not this forum) views on using Cannabis. Cannabis does have a big stigma attached to it, yet if this does work, as I'm certain it does, well for me anyway, then we, as Epileptic people need to stop judging each other and unite, forget what narrow minded people say, and give support and encouragement to people like us, if these people really cared about how we suffer they would do anything to help, and that means stop judging.. It makes me wonder why such a media and social driven stigma? maybe the fact that Pharmaceutical giants can't put a copyright or trademark on this herb, so therefore they could lose Billions in DRUG sales if we all knew the truth... However I do not encourage anyone to try it as it is illegal even though under the Common Law (law of the land UK) it is perfectly lawful (magna carta)
And it does make you feel very dizzy :bigsmile:
Thanks guys

 

[RobinN]

My daughters seizures have been controlled by making changes in her nutritional choices. The well know pharmaceuticals did not work for her, and actually made the seizures worse. Nutrition I believe has healed her from the inside out. Mother's instincts.

 

[DayDreamer]

Weed helps just like alcohol and all the aeds out there. They all depress your neuronal firing. Some side effects are worse than others! Come off any of them too quick after a long use and it's a bad scene. You might not have had epilepsy before but you get some new activity under your skull through withdrawl. Keep the amount you use in a diary and make sure you don't stop all at once.

 

[BigWill]

I couldnt agree more with you CommonlyKnownAs

 

[CommonlyKnownAs Oi]

My daughters seizures have been controlled by making changes in her nutritional choices. The well know pharmaceuticals did not work for her, and actually made the seizures worse. Nutrition I believe has healed her from the inside out. Mother's instincts.

I agree, I have problems with things like: Sweetners, Chocolate, Coffee, Vinegar, Orange flavoured sweets, Pain killers, Sugar, Energy drinks, pretty much anything that the vile global elite have had something to do with, even Kellogs products I have found I get problems with.. I think we as a people need to know these facts.. I was telling a woman about this, her 5 year old son was suffering bad, it brought a tear to my eye to know what that poor child was going through, but the mother just thought I was insane for making such claims.. You can take a man to knowledge, but you can't make him learn!

 

[CommonlyKnownAs Oi]

Weed helps just like alcohol and all the aeds out there. They all depress your neuronal firing. Some side effects are worse than others! Come off any of them too quick after a long use and it's a bad scene. You might not have had epilepsy before but you get some new activity under your skull through withdrawl. Keep the amount you use in a diary and make sure you don't stop all at once.

That is a great bit of info.. I know though experience coming off the pills is real bad, I'm gonna maybe cut down the pills after a while, but only like, 50 mg a week just to feel my way through and test (toe in water kinda)