Recently I got a true story sent to me about medical marijuana being use for epilepsy treatment. What was remarkable was that the girl who wanted to remain anonymous is 14 years old. Her mother gave her permission for me to publish this story. Therefore I thought it would be good to publish this story as it may help people to copy with epilepsy:
I am a 14 year old girl. When I was five and a half, I was diagnosed with petite mal seizures. Basically, I would look up at the sky for about a minute or so, and than would come back as if nothing happened. However, it was not quite that simple.
You see, I had no control of my body during these seizures, and would sometimes wet myself, or walk off or into things. It was quite a danger to my health, so I had to take superscription pills. I took 3 different kinds over the span of 3 years, till I was 8, and started to hide them so as not to have to take the pills.
My epilepsy went away by itself, but left some strange mental damage (i.e. I now hear voices in my head, I have severe self confidence problems as a result of other children making fun of me, I have little to zero control over what I say (I became used to coming out of my seizures and saying whatever I was about to say before.), I now hate doctors. I am just all around pretty weird).
When I was about 1o and a half, I developed a new type of petite mal epilepsy, so I now have temporal lobe petite mal seizures. They are quite similar to the other seizures, except I have more control, they last 3-7 seconds, and are hardly noticeable. But I was still prescribed with meds that I did not want. When I was about 12, I started to smoke marijuana, I was around that age you know?
However, the experience was a bit different from what most kids do there first time. Having grown up in a medical marijuana house, I new it was not a bad drug at all. I tried it for a while, and we (my mother, and friends (my dad lives in another country)) discovered that I had less to no seizures when I was high!
I now take medical marijuana, and my life has never been easier. Now while it deals with my seizures, it also deals with my head aches (possibly caused by my epilepsy), my depression, my abandonment issues, and any other problem I can think of! It Is not a chemical concoction created by man to get f-ed up! It is a plant that is only called weed, because it used to grow like weeds!
It is not gross like tobacco, causing cancer, but an herbal remedy curing many diseases! I can’t understand how anyone would possibly want to make it illegal. I hope this story convinces a lot of you to make a difference on this subject!
Would like to hear from anyone who has used medical marijuana for epilepsy treatment. Also do you think children should be able to use medical marijuana?
Join the discussion 12 Comments
i got diagnosed with “severe epilepsy” about 6 monthes ago. i had uncontrollable seizures where i blacked out for minutes at a time and had breathing difficulties while out. i still had spells even on my perscribed medication so i said the hell with it n started smokein pot on a daily basis.
ever since i havnt had a single spell or nothing. shit works like a charm…i really hope they will perscribe me medical marijuana, otherwise i might end up goin to jail one day for using a substance that helps me get by each day peacefully with no pain
ive had seizures since i was 13, i am now 20 and the drs still do not know what is wrong with me, ive been smoking pot for about a year now and on top of my medications it works wonders.
I will say this. If you are going to smoke for your epilepsy-DO NOT SMOKE TOO MUCH! ALSO ENSURE THAT YOUR CANNABIS IS PROPERLY FLUSHED!!!! (in other words grow your own)
good luck to all!
I am A 27year old man, i had a brain surgery @ 17 and have had a siezure disorder ever since.
They started as grand mals and were controled with Dilantin for years, after about 3 years i had so many tooth problems i had to change something. After starting marijuana use again (you know those teenage years) my wife and i noticed less breakthough seizures. In the last 2 years i was diagnosed with partial complex seizures in which dilantin did not help at all.
I was then put on tegratal but i was still having about 10 or so episodes a day. I only had access to dirt weed, so my wife thought i should try a higher grade of marijuana. I’ve now been without a seizure for over a year and believe that no child should be subject to only the legal drugs, I believe that marijuana and THC could be used to cut down on the harmful effects of drugs like Dilantin.
I would never consider quiting smoking mostly for the benefit of my family and those around me my seizures affect. thanx
I find this discussion very interesting. I am a 52 year old woman with predominantly partial complex seizures and have gone status at least 4 times. I have 2 to 3 seizures a week that I am aware of, 99% of the time I enter the seizure without any onset warning and often only detect the seizure from 3rd party observation, unexplained bruising or items moved around the house.
I am currently on keppra and lamictal with a trial of adding vimpat starting this evening. This will be at least the 12th medication tried in various combinations. The vagus nerve stimulator was unsuccessful and removed upon battery expiration.
Brain surgery has be ruled out due to the variety of seizures and not being able to localize and onset location. I can’t find any serious medical research on this subject and would appreciate a link or two if anybody has one.
Many studies are mentioned in this document: http://www.drugpolicy.org/docUploads/conantv_jurith.pdf. Hope this is helpful.
Thankyou for wrting about pot helping you. I just have to fine a way to ask my doctor. Does it really work for someone that tried everything and nothing works?
I have a soon to be 13 year old daughter who was diagnosed with epilepsy when she was 2 1/2 years of age. Since this time she has been on several medications to try and control the seizures. She was on Tegretol, Lamictal, Valproic Acid, Dilantin, Depakene, Phenobarbital, Clobazam, Gabapentin, Topiramate, Trileptal, Topamax, Phenobarbital, Phenytoin Sodium along with Ativan and or Diazepam.
They have tried her on so many medications and not been able to give us any answers as to why her seizures are not well controlled. They tell us that she has the following types of seizures: Absence, partial, partial complex, Tonic Clonic, interrictical, and now just recently drop seizures.
We were being followed at the childrens hospital but now are being followed by a another neuro. She was currently on Clobazam and Keppra however, there has been some changes now they have stopped the Clobazam but have also started her on a water pill that has been known to help with seizure control.
She was to be assessed for surgery however they have said that she is not severe enough for the surgery as they only do the worse cases before everything else. On one of her many admits to the hospital this one her being on life support I again asked about the surgery they said she couldn’t have it because she has 5 trigger points in places in the brain that would be bad to remove such as speech and gross motor.
I learned about VNS but they said they only do 11 a year here and that she was still not bad enough off to have this implant. My parents live in the states and brought my daughter down there for a consult just to see what this doctor would say.
It kinda worked out great because she ended up having a seizure right there in his office. He said that the children’s hospital was right in saying she could not have surgery to remove the trigger points but she could for sure get the VNS. When I was in this consult I learned more about her seizures in the 1 hour I was there then in 7 years going back and forth to the children’s hospital.
I am so frustrated with this disorder that there is not enough attention or funding to help support what needs to be researched and done to find out why this is happening. My gosh it is one of the oldest disorders around and yet we know less about this disorder than any of them.
I have recently be told about medical marijuana and the use of it helping with seizure control. However, I am kinda of scared because she is only going to be 13 years old. Has anyone else heard of this and if it really does work?
Michael Scott: Do you *have* Epilepsy ? If so, i apoligize for the following rant. Quite a few (Adults) with epilepsy aren’t able to maintain control of their condition.
From wikipedia: “However, over 30% of people with epilepsy do not have seizure control even with the best available medications.”
Over 30%, by itself, is a lot. This, obviously considers BOTH childhood and adult epilepsy. But let’s group Epilepsy into two categories:
Childhood, and Adult (whether adult-onset or child-onset)
MOST childhood seizure disorders can be controlled using standard AEDs. Depakote, Dilantin, Depakene, Keppra, and finally Tegretol are AED’s i’ve tried, with little success (20-30% effective) except for Tegretol. MOST kids grow out of their seizure disorders and eventually are able to cease using medicine. However, about 30% need to continue medication of some form throughout their lives. The focus in regards to medicating these children should be: “What will allow this child to live a quality childhood, learn and participate in school, and perhaps grow out of their disorder ?”
That leads us to another topic of concern – Adults with epilepsy. I’d venture to say that it’s closer to 50/50 as far as control goes here. Half of adults with epilepsy probably would find that missing a single dose, perhaps with a bit of added stress, perhaps without, could render them hospitalized because of seizure. It’s not a guarantee, it’s a potential. That potential is too much.
As mentioned before, i’ve tried five medicines to date, and will keep trying more AED’s. Lamictal will likely be my next. But MANY MANY adult epileptics are in the same boat as myself: While my meds alone do little, adding in a touch of weed to my daily regimen does A LOT. Right now, the most effective treatment i’ve found, is, oddly enough, nearly identical to Stephen M Barnett’s. My RX is 200mg 2x daily, which raises my seizure threshold significantly.
However, using this much makes me feel unpleasant, and that’s not mentioning the fact that Tegretol alone does not nullify my seizure triggers, it merely displaces them. I’ve been getting migraines instead. YAY ! Not. Well, lowering the dosage of Tegretol to 200mg and supplementing about 1/4 gram “mowie wowie” 3x daily, my seizure triggers are nullified, that is, when a light is flickering, my eyes are not drawn to it, i do not notice it, it is effectively not there.
Prior to this, and only while on Tegretol, my eyes would LOOK for flashing lights, my ears would TUNE INTO rhythmic tapping sounds or high-frequency wavelengths… leading inevitably to auras, migraines, and sometimes seizures. My current regimen is flawless, although i will still consider Lamictal, or any other AED, until i have tried them all. If i find a traditional AED that is affordable, effective, and free of side-effects, i will stick to it.
For now though, it’s 200mg tegretol, 750mg weed.
Keep an open mind Mike, we’re just looking for the medicine that takes away our seizures. Weed is one of them. Cheap too. Oh and I use a vaporizer and make marijuana brownies. I’ve never smoked anything, ever. At all. So…. Bronchitis ? Nope. Cancer ? Nope. Coughing ? Nope. Oh, and side effects ?
That’s all, folks.
I have used pot for 1 year for my epilepsy it works great. I have grand mall seizures 4 am so far only @4am I also go to a foundation for free treatment as I dont have insurance or job as of november 2008. I take Tegretol 200mg twice a day also, so far I only feel somthing crawling on me occasionly (tripy)but i deal with it. Pot works mutch better if I can keep some around. Lately I can not because I tried to grow my own and I live in Texas …yes bad desision on my part and got cought so now I have a fool for a lawer (myself) and a court date comming up. If any one has some sugestions E-mail me firstname.lastname@example.org
Some medications can be taken daily in order to prevent seizures altogether or reduce the frequency of their occurrence. These are termed “anticonvulsant” or “antiepileptic” drugs (sometimes AEDs).
Dear sir, I can educate you about every ‘aed’ on the market in usa n europe.
My 8 yo daughter has been repeatedly poisoned (in my opinion) by about 21 of those medical ‘miracles’ that slowed her development stunted her growth, caused depression and rage but most important– CAUSED more seizures than they ever controlled. Epilepsy meds are not science ~ they are worse than a crap shoot! The seizures MAY stop for some but the side effects will kill them. If it requires moving to a state that allows it n it works…i will.