Anyone diagnosed with Epilepsy?

[wannaBhigh]

I was at the age of 13 or so when i was diagnosed and it was a real knock in the face for a young child at an age where we don't even know who we are or what is going on in the case of a diagnoses of epilepsy or other serious illness.
I was prescribed Tegretol to help control my seizures and it made me sick. I was also prescribed Dilantin and that too made me very ill vomiting all the time and couldn't sleep and it also seemed to cause me some very disturbing dreams.

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The doctors just kept asking me if i thought i could live with the side effects (umm i'm by now about 16 yrs old) Can i live with not sleeping at night ? Can I live with the horrible dreams when i am ? What a joke that wasn't any type of life for a kid. Next on the list of experiments they where to try on me is a drug called Phenobarbital. An internet search for it will reveal a massive bunch of things you don't want going on with your child. Most notably is the zombie walk and the vacant stares i got from my oldest brother who was treated with it for non epileptic seizure control.
so at this point i was ready to give up on life all together. I was able to tell when i was going to have a seizure before it happened most of the time. One day i happened across some of my dad's stash and was gonna smoke it just cause ol Ronald Reagan told us how bad it would mess us up and since i thought me life was over anyway i was hopeful that it would . On my way to a wooded area along a slow flowing creek to consume my newly found buds (Parents LOCK YOUR STASH UP !! YOUR KIDS ALREADY KNOW WHERE IT IS BEFORE YOU FIND IT ON THEM!) i started feeling like i was getting ready to have a seizure and decided that i was gonna smoke this stuff anyway cause to be honest i had hoped it was gonna kill me. Being told i was going to have to be documented seizure free for at least a year to get a drivers license or even decent job and i hadn't been over 4 weeks without one. The depression alone was crippling . So back on track. I was on my way to "The Spot" and i got this dead or numb or sense of absence of my right leg . This was the most common sign that it was time for me to get to the ground to prevent a high fall and possible head trauma. I dropped right there and waited for the sensation to pass and then got to "The Spot" and smoked about 2 small hits and almost instantly the feeling that i was going to have a seizure lifted and i assumed it was just that i was high. For the first time ever i had felt a seizure coming on and didn't have one at all ! A few weeks later i was feeling the same and decided to hit dad's stash again WOW! it seemed to me that this stuff that was suppose to be so bad for me seemed to prevent my seizures ! At the time Where we lived nobody was willing to consider that cannabis was better for me than phenobarbital . Well to make a long story stop i'll be 37 this year and I've been seizure free except for 1 or 2 times i stopped smoking cause someone tried again to convince me of how bad it was ever since i was 16 . I have been controlling my epilepsy very well with cannabis now for about 21 yrs. I welcome any comments or questions anyone may have

 

[The Weed]

Re: Anyone diagnosed with epilepsy ?

More...
Epilepsy

 

[wannaBhigh]

Re: Anyone diagnosed with epilepsy ?

Maybe that would have been a better place for this post ? Mods feel free to slide this over there since it dosn't maybe fit here ?
The Weed thanks for the link to the other thread. We don't have mmj here so i almost felt like an intruder over in this area lol

 

[The Weed]

Re: Anyone diagnosed with epilepsy ?

It is all good! Thank you for sharing your story.

 

[Firestone]

Re: Anyone diagnosed with epilepsy ?

There are a bunch of Epileptics on this board. Welcome.

You'll find that sizable number of neurologists are cool with weed. I use it to treat nerve damage and spasms from the falls I've taken during seizures in the past. IMO,it works better and less unpleasant side effects than any other anti-spasmodic/muscle relaxant on the market.

 

[sungoddess]

Re: Anyone diagnosed with epilepsy ?

I was diagnosed more recently, but I have epilepsy. It started as a seizure disorder, but then they said epilepsy. It's been about eight years now, I believe. MMJ is very helpful, especially at night time for me. My neuro is supportive. I'll try to follow this & write more later.

 

[Kushman42000]

ya i am new to and i have epilepsy also.started have em at 3 when my sibling were running threw sprinkler and i had ear ache fever of 103 prettty high though i also got family age 25 can i get legalized

 

[sandra abato]

I have seizures too and mmj helps me not only in the part of keping me from haveing so many seizures but it helps in the painwhere I have hurt my self from those really bad seizures that I have had and now it is going to help me get off the barbs orpain killers that is and have been eating up my kidneys and liver which I have taking those very strong pain killers for so many years that I now need liver treatments and not sure where my kidneys stand yet but next I woll work on getting those to help. Mary Jane has help me live just a ;itt;e bit long but also has help me to live a little bit healther. but I ;ive in a state where it's not legel

 

[Skutch]

Hope I haven't posted my other message wrong in the other scientific data section, here's what I've written...

I do have E., but don't notice much difference in the number of seizures using cannabis.

My story...

Strange thing is that I probably had E. all my life, but never knew that until I was 28. My seizures all are accompanied by memory-loss (also didn't know that), but suddenly at age 25 my small seizures became Grand Mals with loads and loads of memory-loss up to half a year per seizure.

Memory became quite a study for me after that and slowly I realized that without grandmals I was also forgetting differently as most people.
Why I had so many problems learning despite of an high IQ, something I've been struggling with whole my life, also was a big question until a neurologist finally caught 11 small seizures on EEG at age 28. Since I have had no seizures while awake nobody had noticed the smaller ones and have been looking for the reason of my problems at school in loads&loads&loads of other areas.

Luckily I haven't had a Grandmal in more then 14 years now (I'm 47), but do have strong indications that I still have smaller ones, which are quite nasty to detect. Nobody notices them, I can only detect 'm by external factors and like everyone else I also forget like other people do.

Most significant one I had a few years back when I went sailing for the first time in the new season, something I like very much. Suddenly my brother said "It's a pity there's less wind, __we__ were sailing much faster last saturday..." which indicated it wasn't the first time of the season for me. Without his words it would have been.

Using weed doesn't seem to have much effect on my seizures, but... having E. does effect me quite a lot. Biggest problem, finding some mental challenge in work. Not being able to follow long theoretical studies, having a high intelligence and a monster in my skull that's constantly looking for a mental challenge, I'm bored to severe depressions within a matter of days/weeks in most jobs.

In that respect Cannabis is a great way to fight the side-effects of my Epilepsy. I do like a joint as well though when I'm not bored, making music or do something else that has my interest.

 

[sarahspelle]

I have just been recently diagnosed with a lesser form of epilepsy known as Simple Partial Seizures, aka staring/absence seizures. I have been battling this disorder and its complications that were only worsened by my PTSD. Therefore, for 15 years my seizure disorder went undiagnosed, due to doctors telling me it was all in my head. No kidding, you think?!? So here I am at the age of 31 and just to months ago recieved my diagnosis when my new doctor finally believed what I was telling her and sent me to see a neurologist. The neurologist I am now seeing definitively diagnosed the condition and I am now taking meds for that(Trileptal). Since I am already using medical marijuana for the PTSD, I was able to treat my seizure condition as well. On a day with only the pills I was prescribed, I will still have anywhere from 5-7 seizures, granted they are not grand mal, they are still pretty bothersome and sometimes cause me to injure myself and others, if my aura is not presented. Most of the time, it does, but there are occasions when the seizure just hits me and I have no control of where I land. That became a major issue when I fell on one of my children causing them harm, I felt like the worst mother in the world, stepping back I know that it was not my fault, but I am a mother and do injure my child, that leaves a trmendous feeling of guilt. Ok, enough about that. That is just an example of what happens when only managed by my pills. On the days that I have the marijuana to smoke, Oh my gosh, there aren't any seizures at all! I can wake in the morning with a fairly confident feeling that I will not have to endure a seizure that day. I have been using marijuana for a few years now, and I found that I feel better, not just in the fact that it treats the condition, but in the fact that it reduces the stress that comes with it. I am managing to get through my day incident free, and accomplish all kinds of things. It's nice to ride a bike with my kids, and go swimming, and do all kinds of activities with them that I wouldn't normally do, in fear of having a seizure in a dangerous situation. In my experiences with the medical marijuana, I have found that the best strains to treat it fall along the lines of Indica. It seems to calm my body and leave it stress free, therefore, decreasing the possiblities of having an episode. That makes me feel like a better and safer person and mother. To anyone who suffers from a seizure disorder, I highly recommend medical marijuana. It gives the same results as the prescription pills if not better, and the side effects are what? Oh yeah, maybe I get a little bit hungry(I keep my weight in check by keeping healthy foods in the house and monitering how much I eat, munchies or not), ummmm lets see, oh; excessive giggling and happiness, and maybe gives me the ability to take a nap. Wow, thats a lot better than hot flashes, memory loss, irratibility, fluctuating moods, sleeplessness, upset stomach, vomiting, diarrhea, possible hives and the best one yet, I can't overdose on it and it doesn't make me want to. So, in my eyes, God made pot. Man made pills, I put my faith and trust in God.

 

[PapaRocks]

I have lived with epilepsy for 43 years now. As I grow older and older my body is in a constant state of pain, confusion, thoughts of suicide, weight gain, ect ect......after a 15 year hiatus, I have taken up smoking weed again. I found the better top shelf Indica dominate strains work well with not only seizure control but combating the negative effects of the fucked up meds we take. The kind of effects that will kill you if you stop taking it, keppra. and god forgive you if you have to pay in cash.
The benefits of maintaining normalcy in an epileptics life is for in itself considered a major part of treating the epileptic. Countering the negative effects of pharmaceuticals is part of the solution for improved life functions.

 

[grower4me]

I have been diagnosed with epilepsy from 10 days old ive been on phenobarbitol,dilatin, and now im on tegretol xr for 16 years ive weened myself down but i hate taking pills im considering taking cannibus as a healthy alternative. I feel your pain your fears and i can only empathize with you on everything you posted

 

[bombaguy]

hello, pleased to meet you. I'm fairly new on these forums I've been a member since April I believe. and I am A fairly new Grower. like you I myself was diagnosed with peti-mal seizures, epilepsy when I was 14 years old. and yes it was a little difficult at that age for the longest time I tried hiding it thinking people would judge me. but now that I'm 38 years old I tell everybody it doesn't bother me. I have just recently started looking into research in it. I have been on depakote my whole life since I was diagnosed. as far as marijuana is concerned I have never really personally experienced any help from it. then again it might just be my type of epilepsy. well that's all I can think of for now just thought I would share that with everybody.

 

[grower4me]

I personally have found that while taking cannibus i feel normal and sane when taking the medical pills makes me crazy. I have found that any kush is good for me i cant smoke sativa or many hybrids but i thank the stars for cannibus

 

[PapaRocks]

definitely helps countering negative effects that come along with most epileptic meds.
Bguy -you've taken valporic acid all your life, I'm surprised you havent had other issues arise through its long term use. I took it for about 10 days before my body said stop. It made me swell up and loose my ability to swallow.

I've found weed has no negative effects on my meds and it helps me with my appetite. Another effect of my Keppra Lamictal cocktail, is weight loss

 

[Happy Kitty]

Hi to all of you and thank you so much for posting about your journey through this nasty condition called Epilepsy, and how MMJ helps your symptoms.

I also suffer from Epilepsy and it's always been gran mal seizures. It's been quite a rollercoaster the last 10 years for me and I sincerely believe that MMJ has helped in calming my brain and helping to relax. And definately helps with all the nasty side effects from Epilepsy meds. If it hadn't been for Epilepsy I would have never stopped working or driving. If it wasn't for my Epilepsy I would have never made it to this wonderful site looking to know if this fantastic plant is really helping me. And with all the information I have read, I feel very confident in the decision to use MMJ.

Many epileptics suffer from depression as a result of this condition, MMJ is a wonderful option to help with that. Several anti-seizure meds also have the side effect of loss of appetite, Since nothing tastes good it's easy to skip a meal or two, or three. MMJ can definately help with that. It can also help with sleeping at night. MMJ helps give you that opportunity for good nutrition and sleep epileptics need to help control seizures.

It has helped me immensely after a gran mal for my nausea and headache better than anything. It is the ONLY thing I have found that gives me any relief after a gran mal.

I have met very few mainstream doctors who are willing to talk about the benefits of MMJ and it's something you'll have to decide for yourself what will work best. Anyone who is unsure if MMJ can help them with their epilepsy problems only need read over the articles that have been provided here to at least give it a try, or encourage loved ones to. For myself the meds I have been given don't work, they make me feel terrible, and too many other side effects to mention. MMJ helps my appetite and frequent nausea. I'm able to complete tasks that I wouldn't have because I didn't feel well, and I'm not sitting around nervously anticipating that next seizure.

If you want to find more information about MMJ and Epilepsy here's a few links -
Epilepsy Healing
Medical Marijuana and Seizures
Epilepsy


Best wishes to you all, and hope today is a great day

 

[bombaguy]

Hello HK and Papa, Yeah I've been using MJ for the same amount of time as the Pills so can't tell what's doing what. but when I go to my neurologist every time I have an ekg done and it still shows very partial episodes. Last year I was prescribed klonzapam for a couple months and the ekg showed not a thing. only problem is no doctor will prescribe that to me anymore plus I don't want to take it because it's so habbit forming. I then stopped smoking mj for a few months and my next ekg was worse. So thats the only evidence I can go by to suggest that the mj does in fact help. I do not have any side effects from the depakote miraculously except sometimes it does make me nauseous and that the mJ does help with. unfortunately living in New York State I can't get it prescibed or talk about it with my doctors. So I always have to be causious to go about getting it in other ways. so the only way I really know what strains I am getting to experiment with is to get some seeds and grow it myself. Right now I'm almost 30 days into flower with papaya and nypd. Will know in another 30.

 

[PapaRocks]

I really like the responses that have come across this thread in the past few weeks. They are therapeutic in a sense that hearing the stories of others having to deal with epilepsy and the struggles associated with it, it is reassuring that there is life beyond the disease and its medication....what I like with this forum above and beyond the MMJ topic, is that fact there is no bull shit forum posts written by someone who's only purpose on the forum is encouragement. Encouragement is great, but unproductive as for therapy and true life circumstances that occur regardless of encouragement.
The last two morning I woke up in tears. My epilepsy is intractable and it effects the lives of everyone in the house. I had a seizure while driving in May and lost my driving license and ability to earn income. When my attorney discovered that the woman who lives in the house I ran into, has a father with epilepsy and that she is also a nurse, she smiled real big. I dont like being stereotyped as a drunk that drove off the road and is looking for a way to save his ass.....This is what seems to be a commonality amongst those who know it all.....regardless that epileptics dont/cant drink, I'm on the path to gaining disability, hopefully by the time I have disability mmj will be legal in North Carolina. Doubt it, now but within the next 8 years, again hopefully.
Happy Kitty, I love your response. Your introduction. I would love to read further responses from you regarding your journey and encourage you to tell others you may know with epilepsy to join this forum. I hope others here do as well. Networking is important to establish a solid ground for advocating mmj therapy's.
with that said I would like to open up to everyone on this thread. The crying is from severe depression and thoughts of suicide. It's hard to shake both sense they are both effects of the meds. I ran out of weed lastnight and dont look forward to the next few days until I can re-up. The greatest effect that mmj is victorious over is the anger and rage associated with the kepra. Without mmj the rage will return and that goes full circle to crying and depression even worse.
..something you guys may find troubling but at the same time encouraging to our efforts. meet Liam, he has dravets syndrome, just like Doctor Sanjay's little girl spot lighted a few month ago on CNN's special about cbd and epilepsy in children.

 

[catfishking]

Well my story according to the 3 nerologist i have seen doesn't belong here,but I think they just don't know what is wrong with me so they gave me the title of non epilptic.I am stuck in a perpetual loop of going to neros having week long video eegs done,and being told im non epileptic.I am then sent to psychiatrist and psycologist then told im mentally fine and hope i get answers soon and dumped off again.I have been in this loop for 8 years now.My primary doc is a friend of mine i meet him and his son in scouts.He has seen my seizures and is blown away that nobody will give me an answer.I have been tried on 6 diffrent seizure meds some helped and some about killed me.I have all but given up until one day i was hanging out with my cousin and he asks if i wanted to try some mj.So at this time i was 18 so i said why not and something happened that evening that changed my chances at having a "normal" life forever.We were just stupid kids rebeling aginst everything we could at my new apartment.I took my first hit from a small homemade pipe and i coughed a little then giggled for an hour straight.What i didn't know was my night was about to take a turn for the worse.I stood up and started feeling light headed (part of my warning i get before i go into seizures).My cousin at that time was a regular smoker said hit it again so i did and I feel better then ever.My warning went away and i didn't have any seizures for 2 weeks after that.So now skipping forward 2 years I smoked off and on and i noticed it helped reduce if not stop them all togeather.I currently live back at home with my parents but i know with the help of mj i will someday be able to move out again and make a go at living a normal life.

 

[smacsidhe]

Over the last several years I've seen the attitudes of Dr's change dramatically, as well as the rules that many medical plans have regarding MM, at least here in Oregon.
In 2005 when I lost my insurance and went off all my medications cold turkey (Oxycontin, Methadone, Tramadol, Tegritol, Ambien, to name just a few I took daily) My Dr recommended MM to help with the withdrawls, but would not sign an authorization, because his clinic received federal funding. Now my PC Dr and my Neurologist both support and have signed authorizations. In fact, my PC Dr brought it up to me at our first appointment when I got my insurance through the ACa's medicare expansion with Care Oregon.
I have what they call a non-idiopathic seizure disorder related to a combination of PTSD, organic brain damage and FM. Anti-seizure medications are of limited help. Cannabis reduces my stress levels, and reduces my pain levels, which reduces both the severity and frequency of my seizures.