Seizures/how to dose CBD/medical marijuana

Posted by keeg1010 @keeg1010, Aug 9, 2021

Hi. My son has cerebral palsy, autism, and recently developed seizures. His neurologist increased his lamotrigine but wants him to start cbd/medical marijuana. I had an appt to get his medical marijuana card but cancelled because they told me the doctor only approves the card and does not go over dosing. He is 23, 190lbs. We are in the process of weaning him off his Buspar (he took 45mg twice a day) and he's down to 15mg once daily for this week and then we stop. I did try a CBD gummy a while back (5mg) but I think it was too much on top of the Buspar and Abilify he takes. How do I know what dose to try and do I try just CBD or THC or both?

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

@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

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@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

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@jakedduck1

@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

Jump to this post

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

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@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

REPLY
@jakedduck1

@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

Jump to this post

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

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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.

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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!

REPLY
@keeg1010

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

Jump to this post

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.

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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

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@santosha

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.

Jump to this post

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!

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Hi Kerry (@keeg1010)!

It is a pleasure to share my experience with you and others!

I started with Medical Marijuana in August 2020 after trying 5 different AEDs (Lamotrigine, Carbamazepine, Oxcarbazepine, Gabapentin, and Lacosamide) without much success, not very nice experiences, and much frustration in a period of 18 months. Even though some AEDs have controlled my seizures, I got really ill and in bed.

First, I started with artisanal medical marijuana from a local association, one of the very few ones that can produce medical marijuana here in Brazil. At that time, I used full-spectrum medical marijuana with a low dosage of THC. My doctor at that time, increased the dosage little by little, replacing Vimpat (Lacosamide) with this medical marijuana in a very careful way. In 6 months I got rid of Vimpat, which was a poison to me. To speed up Vimpat’s withdrawal, my doctor reintroduced Carbamazepine in a low dosage.

In May this year, I started seeing an epileptologist and he recommended just pure CBD, instead. According to my current doctor, THC is not recommended to people with epilepsy. I am taking the one from Farma USA (Purodiol 200 mg/ml – 0,5 ml 2 x day), that I import from the United States (perhaps the commercial name of Purodiol is different in the States). I still take Carbamazepine in a low dosage (60 mg 2 x day). Little by little, I am feeling better, having more energy, sleeping more, being less anxious, and in a much better mood. I still have seizures (complex seizures), about 4 per month, but they are much milder now. There is still room for CBD increase, but this must be done little by little as CBD leverages AEDs.

Here in Brazil, one needs a special prescription to buy medical marijuana at the pharmacy or association as well as to import it. Options are still not many yet here in Brazil and the ones available are more expensive than imported CBD.

In your message, you have mentioned “the card does my soon no good”. Sorry, I could not understand what you mean by card. Can you explain it to me?

Based on my experience, I recommend seeing an epileptologist when one has epilepsy. If I had done that right from the beginning, I believe my way to getting better treated would have been shorter. In the States, you have excellent epilepsy centers such as Mayo Clinic and others. I know that there is still some prejudice regarding medical marijuana in the States as well as in Brazil. But when you have tried all you could in traditional medicine and you do not get better… Again, my experience with CBD has been very positive so far.

If you have further questions, please feel free to ask me as well as to send me private messages.

Stay strong!!!!

Kind regards,
Santosha

REPLY
@santosha

Hi Kerry (@keeg1010)!

It is a pleasure to share my experience with you and others!

I started with Medical Marijuana in August 2020 after trying 5 different AEDs (Lamotrigine, Carbamazepine, Oxcarbazepine, Gabapentin, and Lacosamide) without much success, not very nice experiences, and much frustration in a period of 18 months. Even though some AEDs have controlled my seizures, I got really ill and in bed.

First, I started with artisanal medical marijuana from a local association, one of the very few ones that can produce medical marijuana here in Brazil. At that time, I used full-spectrum medical marijuana with a low dosage of THC. My doctor at that time, increased the dosage little by little, replacing Vimpat (Lacosamide) with this medical marijuana in a very careful way. In 6 months I got rid of Vimpat, which was a poison to me. To speed up Vimpat’s withdrawal, my doctor reintroduced Carbamazepine in a low dosage.

In May this year, I started seeing an epileptologist and he recommended just pure CBD, instead. According to my current doctor, THC is not recommended to people with epilepsy. I am taking the one from Farma USA (Purodiol 200 mg/ml – 0,5 ml 2 x day), that I import from the United States (perhaps the commercial name of Purodiol is different in the States). I still take Carbamazepine in a low dosage (60 mg 2 x day). Little by little, I am feeling better, having more energy, sleeping more, being less anxious, and in a much better mood. I still have seizures (complex seizures), about 4 per month, but they are much milder now. There is still room for CBD increase, but this must be done little by little as CBD leverages AEDs.

Here in Brazil, one needs a special prescription to buy medical marijuana at the pharmacy or association as well as to import it. Options are still not many yet here in Brazil and the ones available are more expensive than imported CBD.

In your message, you have mentioned “the card does my soon no good”. Sorry, I could not understand what you mean by card. Can you explain it to me?

Based on my experience, I recommend seeing an epileptologist when one has epilepsy. If I had done that right from the beginning, I believe my way to getting better treated would have been shorter. In the States, you have excellent epilepsy centers such as Mayo Clinic and others. I know that there is still some prejudice regarding medical marijuana in the States as well as in Brazil. But when you have tried all you could in traditional medicine and you do not get better… Again, my experience with CBD has been very positive so far.

If you have further questions, please feel free to ask me as well as to send me private messages.

Stay strong!!!!

Kind regards,
Santosha

Jump to this post

Santosha,
I am so glad to hear that the CBD is working well for you. Can you explain what you mean when you say CBD leverages AEDs? I have not heard of Purodiol before. All of this CBD vs. THC for seizures is new to me. Since you tried both, which would you say had the best outcome? I see conflicting stories where some say CBD works best and others say THC is the way to go. I'm glad to hear that you are able to import the Purodiol to Brazil. I did request a referral to Mayo Clinic from my primary care doc but when I first tried to take my son there, the wait list was about 6 months. I did a little more digging on epileptologists…according to the profile of my son's neurologist, she is an epileptologist. I really like her but Mayo clinic has so many options on diagnosing where the seizures are coming from and several different treatments that are not available with my current neurologist. I live in Arizona. When I said "the card would do my son no good", I should have explained further. In Arizona, recreational marijuana use was recently approved. Now, anyone can go to a dispensary and get medical grade THC. Prior to that, the only way you could gain access to medical marijuana is through a doctor. There were certain qualifying conditions (such as seizures, chronic pain, migraines,etc). Once you saw the doctor, they would either approve you for medical marijuana or deny you. If approved, the information was sent to the state department and the state would issue you a medical marijuana approval card (kind of like a license) and then you could go to a dispensary. Without it, you would not be allowed in. But, that changed last year so everyone has access. The card wouldn't do my son any good because he is non-verbal and couldn't go to a dispensary and order anything. I know the dispensary's provide medical grade products but I don't know how pure they are compared to a prescription compound. I'm frustrated that my son's neurologist recommended CBD and THC but has no info on dosing.
Thank you again for sharing your experience with me. I just recently found this forum after I was frantically searching for help the day my son had his 3rd seizure and injured himself when he fell. Talking to people who can help guide us has been amazing and it's so inspiring to see the openness of everyone here.
Hope to talk again soon!
Kerry

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