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I have been dealing with seizures for about 10 years but got my official epilepsy diagnosis about 2 years ago. I'm 45 now, and have had an increase in seizure activity lately. I take Dilantin but have a goal of using cannabis to control my seizures. I live in a cannabis friendly state and have great access to herbs but I have been unable to find a strain and/or preparation that works for me. I'll continue to try till I find what I'm looking for. I hope we can exchange beneficial information.
 

Porkette

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Hi Larry Jane,

Welcome to CWE! I've had TLE for 45 yrs. and I've had 2 surgeries to reduce my seizures. Everyone here has been a great help to me and everyone is very kind : )

When I got older and the hormones started changing my seizures decreased a little my Epileptologist told me that people who have temporal lobe epilepsy can sometimes
find the seizures increase or decrease when they go through their change. I had a DNA test done and my Dr. found out I was drug resistant to all seizure meds
that are out on the market now, so I put coconut oil on my skin which helps build up ketones in my body and reduces the seizures and just last yr. I was put on cbd oil (medical marijuana) that you can buy on line, since I started using the cbd my seizures have been the lowest in my life, I am amazed at how good it works. I wish you only
the best of luck and May God Bless You!

Sue
 
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Thank you for responding Porkette. I have been looking for a place to learn more about e and share what I discover. I have learned more from other patients than all of my Dr. visits. Lots of strange things have been happening to me lately. Questions arise often and it's great to have discovered a place where that may get answered or at least I can ask. Time is short, I gotta go. Talk later.
 

Nakamova

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Hi LJ, welcome to CWE!

Treating epilepsy w. cannabis has been an ongoing and evolving topic at CWE (see link below for related threads). Though there haven't been extensive studies here in the U.S., I think the general understanding is that the varieties with the lowest amounts of THC (the major psychoactive ingredient) are the ones that are most effective in treating epilepsy.

http://www.coping-with-epilepsy.com/forums/tags/marijuana.html
 

acshuman

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Which Marijuana Woks Best To Treat Epilepsy?

The type of marijuana that works the best when it comes to helping a person w/E is low in THC and high in CBD. The most famous and first marijuana developed for this was named 'Charlotte's Web' and has been used in most all of the states that allow 'medical marijuana'.
The number of research studies or tests is small because not enough time has passed from the time this marijuana was first developed to have gotten any kind of results that could be helpful to the people who may be potential users! :ponder:
If a person wants to find information about 'medical marijuana' they just have to google 'medical marijuana epilepsy' and they will get a list of sites telling about the many types and how they are used! :clap:

acshuman
 

valeriedl

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Are you taking the cannabis along with the Dilantin? Does your neuro know? Sometimes mixing other things along with your seizure meds, even vitamins for me I've found on my own, can cause seizures. Even other meds mixed with seizure med can cause seizures too, I've found this on my own also. My neuro told me that if I have an increase in seizures when I've started taking any other med or vitamin to let him know right away because he might want me to stop taking it. I always talk to my neuro or dr who that is prescribing a med before I do anything now to see if it would be a good idea to do it right from the start.

Talk to your neuro about it if you haven't already. Sometimes too just because someone is able to take the two things together doesn't mean you might be able to too, everyone is different.
 
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My neurologist is aware of my cannabis use. He is supportive of me trying but isn't very educated in this area. I increased my Dilantin dose and started regular cannabis paste at the same time and went 4 months without a seizure. I did a week of video EEG testing without any medication and had no seizures during that time. When I got home I decided to start the cannabis before the Dilantin as a test. First seizure was in one week. Than another week. Than 2 more in 24 hours. I started Dilantin again and have gone a week without a seizure. My test indicates that 400mg Dilantin/day gives me some control. I'm very thankful for this but want to keep exploring natural options. I just tested the main strain I prepare paste with and it had 21.5% CBD, 2.5% THC, and near 1% CBG. I feel like I have good raw materials to work with but havn't found the right way to medicate. This is my new life goal to understand.
 

masterjen

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So you have about 25% of ingredients listed - the CBD, THC and CBG (whatever that one is), but what is in the remaining 75% of the paste? It is just as important to know these ingredients in the event there is something in this that may be detrimental (eg. interacting with the dilantin or your known 3 ingredients) or perhaps helpful in some way but that should be used in a careful amount.
 
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the percentages I listed were based on the raw buds I had tested. I grind and decarboxalate that and infuse it into coconut oil at 1oz buds per 2-4 oz oil. I havn't gotten everything set up to make phoenix tears (RSO), but hopefully soon I will be processing it and will have better control over dosing. CBG is another cannabinoid I've heard can help stop seizures. A
 

acshuman

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! ! ! ! ! What ! ! ! ! !

Larry Jane,

You must love playing with your health to be doing all of this on your own! You have no knowledge of what the percentages are or if you are even getting ANY positive treatment from what you are doing! If you don't know what the levels of the ingredients are, how can you expect it to help you?
Then, to 'hopefully' be able to do it the right way is surely no way that can be considered OK by any neurologist that really cares about their patients! I wouldn't ever trust that doctor if I ever needed any kind of advice about anything! :tdown:

acshuman
 

Nakamova

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Hey LJ, you might want to check out this story in Wired: https://www.wired.com/2015/07/medical-marijuana-epilepsy/

It's an anecdotal story of family trying to get their son's seizures under control using cannabis. It's an honest discussion of the pros and cons, especially with sources aren't rigorously tested for batch consistency. Worth reading the whole article.
 
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I do have knowledge of what my percentages are. I have lab results from one of my high CBD strains and am trying to post a picture for you. I consider this to be safe unlike taking Dilantin that is fills a book with side effects. I am looking to discuss alternative medicine with people who have experiences and care. I am not interested in opinions of those that don't support the work I am doing for us all.
 

valeriedl

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Sometimes no matter how bad you want to be able to do something it just isn't going to work.

I wanted to stop taking keppra because I have horrible keprage. For about a year my neuro tried finding another med that would work but nothing did. Everything we tired doing just made me have more seizures. I decided that I'd keep taking the keppra because I didn't know what could happen because of the increase of seizures.

I'm not saying I don't support what you're doing but if you're willing to risk your life then keep going but if you're not then I'd stop.
 

masterjen

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Hi, LJ
I think you might be misunderstanding or misinterpreting what some of us have posted, and our purpose for saying what we have said. ALL of us care and want to see an end to seizures. The forum is "Coping with Epilepsy" and there are many ways people have chosen to cope with epilepsy. We all have our own experiences and our own stories, we have all chosen our own paths for dealing with our health conditions in the way that works best for us and/or in the way we are most comfortable.

The forum is a way to express opinions, and sometimes these opinions may not be what we want to hear. For what it's worth, what comes through to me in the posts in this thread you started is "please be safe in your experiments".
 
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Ok & thanks for putting on the brakes. I'm trying to choose wording that avoids tension but unfortunately it's getting increasingly difficult to stay focused on communication and speech. I feel for you Valeriedl. Keppra is a drug that didn't agree with me at all. I've made the choice to take Dilantin again & can't say yet when I'll experiment again. I'll always have the desire to get off pharmaceuticles though. As for how I feel about the experiments; I don't have a choice. The care I get from the doctors is expetimental. No one can even guess as to where my seizures originate or why they started. Cannabis has no side effects and I am very comfortable using it. I would really like to hear of people's success stories and what they did to achieve success.
 
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