Seizures/how to dose CBD/medical marijuana

@keeg1010
Hi,
I don't know much about marijuana products but if I were to try it for seizures I'd use Epidiolex (a purified form of CBD) since commercial available CBD is a supplement and not regulated by the FDA. Users can't be sure of the purity or strength listed nor the safety as claimed on the label. I read around 70% of supplemental CBD increases seizures whereas Epidiolex decreases seizures by nearly 40%. I did read on Connect where it didn't help. But also heard from people who were helped with commercial CBD. Epidiolex hasn't turned out to be the seizure cure-all once thought it would be. I did hear that CBD was more effective than THC but can't be sure. People I talked to were using CBD.
Medical marijuana became available in California in 1996 but I never considered using it. Not so sure that was such a wise move now considering I was having daily or near daily seizures.
I find it hard to believe that his doctor wouldn’t assist with dosing recommendations.
I don’t have any idea about proper dosing of CBD supplements but it is not the same as Epidiolex.
Below is a chart for dosing prescription CBD Epidiolex.
https://www.epidiolexhcp.com/dosing-and-calculator
Jake

@keeg1010
Here are some people who talked about Epidiolex.
https://connect.mayoclinic.org/discussion/epidiolex-1/
@pamelastewart5 has a son has a very difficult to control form of Epilepsy, Lennox-Gastaut syndrome who tried it. He's about 42 years old and prior to Epidiolex he was on medical marijuana so I'm sure she's more knowledgeable regarding dosage than I am.
Others talking about Epidiolex.
https://connect.mayoclinic.org/discussion/epidiolex/?pg=1#chv4-comment-stream-header
Jake

Thanks for the information Jake. I was doing some research and Epidiolex kept coming up. I don't have any knowledge on this type of treatment and was really surprised that the neurologists office does the medical marijuana certification but that the doctor who approves the card does not discuss dosing. I was told to go to a dispensary. I left a message for my son's neurologist and her assistant got back to me and stated she (the neuro) was not familiar with dosing and could not provide recommendations (even though she's the one who said we should start CBD/med marijuana. Thanks for the links in both posts. I will definitely be looking into those. I am sorry to hear that your having so many seizures. They really are scary and the treatment meds side effects are just as scary. My son has enough medications...I don't want to keep adding more, especially since he's non-verbal and can't tell me if he's having side effects.
Kerry

@keeg1010
Hi Kerry,
I know what you mean about adding more meds. I had severe Epilepsy for 44 years and took up to 5 different seizure meds, up to 30 a day. But the seizures, Status Epilepticus & induced comas continued. Nine years ago at 59 I was switched to a brand name extended release form of carbamazepine, Carbatrol. Since then I have been seizure-free unless I forget to take my meds. I also take generic Phenobarbital but always get the same manufacturer. A study from Stanford University recommends to always take the same manufacturer seizure meds and if taking a brand don't switch to a generic and vice verse. Different manufacturers don’t bother some people but they do me.
Take care,
Jake

Hi Jake,
I want to say thank you for responding to all my questions. I have a TON!!! If you don't mind me asking, how did you manage that many medications and side effects? I am amazed that you have been dealing with seizures and induced comas for over 4 decades. I can't tell you how much you inspire me to continue searching for answers to the tons of questions I have. I am very blessed to have found this forum. When my son had his first seizure, I tried to get him into Mayo clinic but the process was up to 6 months before he could be seen. We found a neurologist by us and I really like her but Mayo has a lot more advancements in testing and locating seizures. My sons EEG's have always been normal. His MRI's show slightly irregular and atrophic left hippocampus "suspicious for mesial temporal sclerosis", which occurred at birth since he was 3 months premature and was deprived of oxygen due to the cord being wrapped around his neck. We had yearly EEG's and MRI's with no change and no evidence of seizures. I know adult onset (due esp. to his issues) is common but the process of getting the right meds is so frustrating. We had the choice to increase Keegan's lamotrigine or add another med-Vimpat (which I don't want to do if I don't have to). He's on enough meds already. How is the carbamazepine as far as side effects for you? If you don't mind me asking, how long have you been taking carbamazepine and been seizure free? Thank you again for all your help. I really appreciate you taking the time not only to respond but to post links for me to research more information.
Take care from AZ,
Kerry

Hi Jake,
I forgot to mention. My son's psychiatrist/behavioral specialist who prescribes his Abilify and Buspar (which we're getting rid of) recommended instead of trying multiple different medications for his anxiety, to have his DNA tested through genesight.com. Here's a direct quote from their website..
"GeneSight Psychotropic is a pharmacogenomic test which means that it analyzes how your genes may affect medication outcomes. The GeneSight test analyzes clinically important genetic variations in your DNA. Results can inform your doctor about how you may break down or respond to certain medications commonly prescribed to treat depression, anxiety, ADHD, and other psychiatric conditions"
Don't know if you ever heard of this site before but we are going to run the test and see instead of trial and error.

Hi @keeg1010
I agree with @jakedduck1. It is the doctor that should define the dosing of the CBD!
I myself take pure CBD 200 mg/ml (Purodiol – Farma USA) and the dosing has been defined by my doctor (I am however living in São Paulo/Brazil). I know that my weight is one of the aspects he considers for the definition of my dosing.
If I can be of any other help, please tell me. I am open to share experiences.
All the best!

Hi @keeg1010 (Kerry) again!
Based on my own experience, being treated by an epileptologist has made a difference to me. I believe this is especially true for those that have refractory epilepsy as I do. I also have left temporal lobe epilepsy with mesial sclerosis. As Dr. French (renowned epileptologist) has said in one webinar, a general neurologist will hardly be up-to-date with all the latest developments in epilepsy.
Before trying CBD, I have taken Vimpat/Lacosamide (the worst of all 5 AEDs I have tried, terrible side-effects) as well as Carbamazepine (could also not tolerate the side effects – got very depressed). I still take carbamazepine but in a very low dosage together with pure CBD.

Hi @santosha! I would love to hear more about your experience with CBD. When did you start using it? How much does it help? Do you have it compounded at a pharmacy? Have you tried THC? I am really frustrated with this whole situation. I asked the neurologist who recommended we get CBD and my son's medical marijuana certification if she could give me guidelines on dosing. She said she couldn't. They do the medical marijuana certification at her office! I was told the doctor that does it just does the certification. That she doesn't give dosing guidelines or prescriptions and that I just get the card and go to a dispensary. The card does my son no good. He is 23, has autism, cerebral palsy, is non-verbal and just developed seizures last year. He couldn't walk into a dispensary and order anything. We wouldn't even know what to get. CBD? THC? Dose? I would love any insight you have. Thanks so much for joining the conversation!
Kerry

Thanks for responding so quickly. @jakedduck1 recommended my son see an epileptologist as well. We've seen neurologists but I'm going to have to do some research on epileptologists in my area. I would think Mayo would have one?? We have only tried Lamactil and just increased the dose to 200mg twice a day. My son's neurologist said the next thing she would add is Vimpat if he's still having breakthrough seizures. He's only had 3 total (started late last year) but they are scary. He is non-verbal but can vocalize. He will yell out right before the seizure but you have one second to get to him before he loses consciousness and begins to convulse. The seizures last about 45 seconds and then he's "out of it" for a few minutes and then wants to sleep for a couple of hours. This is all so new to me but scary, as his last seizure caused him to hit the tile floor and gave him a black eye. I definitely would like to try CBD (esp since we are weaning him off Buspar) to see if it helps with both seizures and anxiety. He already takes so many meds, I just don't want to add a bunch more. It's hard since he can't tell me how the meds make him feel. I can see obvious reactions but would never know if he was getting headaches, depression, nausea, etc. Is the pure CBD a prescription or do you go to a dispensary? Thanks again!