Seizures/how to dose CBD/medical marijuana

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

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

@keeg1010
Hi Kerry, Good Morning
Thank you! I am also very glad about the progress I made since I started taking medical marijuana, giving me new hope in my treatment!
I would say that pure CBD has been giving better results than full-sprectrum medical marijuana (medical marijuana with CBD, THC and other components of the marijuana) so far. My seizures have become milder since I am using pure CBD, they usually do not stop my day anymore.
When I said that CBD leverages AEDs, I mean that the CBD increases the dosage of the AED you take. For example, let say I take 200 mg of Vimpat and start taking CBD. The dosage of Vimpat in my blood will be more than just 200 mg that I took. How much does CBD increase the dosage of an AED in your blood, I do not know. It certainly depends on the dosage you take of both medications. But I have felt that myself. Every time my first medical marijuana doctor increased the dosage of the CBD, Vimpat’s side-effects became stronger. She then waited some time, before reducing the Vimpat and increasing the medical marijuana dosage again. Vimpat withdrawal was done little by little, as I mentioned before.
Thank you for the explanation regarding the card. Here in Brazil recreational marijuana is not approved. You can only get medical marijuana through a doctor's prescription. Again, very strange that your son's doctor prescribes medical marijuana, not helping you with the dosing. For me it would be the same as prescribing Vimpat, but without giving any orientation regarding the daily dosage of this AED.
Again, I am very happy to help. If you wish, we could schedule a zoom conversation and talk more. Just send me a private message.
Kind regards,
Santosha

How do you obtain the Epidiolex? Do you need a prescription? I'd also like to work with a doctor using it but don't now if I could find one who is agreeable to that. I don't want to use THC after hearing negative things about it and I'm not really sure about CBD. I'd have to look into it. Doctors sometimes are reluctant to prescribe things. Sometimes I wonder if
they are afraid of being sued or being prohibited by a hospital of trying alternative methods. I live in Chicago.

Hi Santosha,
Thank you for the explanation on the way CBD leverages AED's. I did not know that. I am so glad that the CBD is working for you and I am hopeful that I can talk with our doctor (we have a follow up appt on 8/26) to see if I can get some dosing information or if she can point me in the right direction. I agree with you...makes no sense to say she wants us to start CBD/medical marijuana and then give no guidance. I definitely wouldn't start an AED on a whim, guessing the dosage. I'm really hoping we can get into Mayo. Can I ask when you started having seizures? My son, Keegan, started late last year (as I said). Since he was born 3 months early and oxygen deprived at birth, we knew there would be some issues. He had yearly EEG's and MRI's. EEG's have always been normal. His MRI showed a slightly irregular and atrophic left hippocampus (suspicious for possible mesial temporal sclerosis). But, that MRI result has been there since birth and has not changed so even though we knew he was higher risk for seizures, we never had any until he turned 23. Everything else on his MRI, CAT scans, and EEG's have been normal. I saw the post with @lhoward about the recent studies related to seizures and gut health and am very interested in learning more. Keegan has had GI issues since birth. He's had at least 15 endoscopes and has been diagnosed with reflux, gastritis, peptic ulcer, pancreatic insufficiency, eosinophilic esophagitis, gastroparesis, as well as a "viral insult" in his gut that could not be identified but always negative for H. Pylori. I have to wonder if there is a tie...prior to his last seizure, he had 4 days of vomiting (no explanation why?) and then 2-3 days later, he had his seizure. Do you have any gastro issues that you've been dealing with? I would love to do a zoom with you and chat. Look forward to talking soon.
Kerry

@heal33
@pamelastewart5
Lost first post so fingers crossed.
I tagged Pamela Stewart above. She lives in Chicago and has a son who was/is taking Epidiolex.
Epidiolex does require you to obtain a prescription.
I understand it's at least somewhat effective about 40% of the time.
I’m not sure how one would go about finding a cooperative doctor Other than by calling around and asking Neurologists if they prescribe that medication.

Here is the website for Epidiolex,

Epilepsy Centers in or around Chicago click below link, type in Illinois and you can
zero in on Chicago.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/

When I lost the original post some info went too.
Jake

@keeg1010
Hi Kerry!

Sure you can ask! I started having seizures when I was 12 years old (I am 50 now).

Possibly, my epilepsy is due to the intake of medications of my grandfather at his place when I was 5 years old, having had a convulsion and staying unconscious at the hospital for 7 days. Back home at that time, my mother visited more than one doctor. Everything seemed to be normal without consequences from this medical event. At the age of 12, I have started to have some strange experiences that lasted seconds, which today I know were seizures. I have repeated the EEG and the results were normal (today I know that a normal EEG does not rule out the possibility of epilepsy). Up to 2017, I have had a normal life with around 5 seizures a year, with no idea that I had epilepsy. But in 2018, after a stressful and very demanding 2017, things started to change with sleep disorders and an increase of those “strange experiences” (seizures). My epilepsy has evolved.

It makes sense to me to believe that there is a tie between gut health and some kinds of epilepsy. Otherwise, why does the ketogenic diet bring good results to some people with epilepsy? I believe my epilepsy is not linked to my gut health (but to the event at my grandfather’s house), even though I became quite sensible to fatty foods after I had hepatitis A at the age of 22 (intake of oysters). In your place, based on what you have shared here, I would investigate if there is any relation between your son’s GI issues and his seizures.

Kind Regards

Hi there! Just so I am understanding you correctly, you had a convulsion at age 5 and then there were no other issues until age 12? The strange experiences (seizures)...can you describe them? I agree with you on the EEG's as well as other tests they have run on my son. They aren't really accurate unless you're having seizure activity. It's the same with when they initially had my son do a barium swallow to check for reflux. Well, unless he was having reflux during the test, it comes back normal. That's why we finally found a GI who would do an endoscope. I am very curious about the gut/seizure relation and will definitely look into that. I'd be interested to know what happened at age 5 that brought on the convulsion? How scary that you were unconscious for 7 days following that episode. When my son had his first seizure, they just diagnosed him with convulsions, unspecified. They only last 30-45 seconds for him (at least the 3 he's had) but they are so sudden and I am so concerned that if they continue to increase in frequency, he is in danger of hurting himself.

Epidiolex has been approved by the FDA so can be prescribed as per normal process.

My friends daughter had no benefit with CBD isolate medicine. The medicine she is administered has THC, THCA and THCN as prominent cannabinoids and has given her a quality of life that she had never known, she was actually discharged out from under the care of the Children’s Hospital neurology department, back to her local family doctor, because for the first time in her life, her seizures are under control.
She has now been on medicine with THC for seven years and she has not had any negative side-effects or impacts. When you take it regularly the intoxicating affect lessons more and more as your body gets used to it. The THCA is known to have anti-inflammatory properties so we’re not sure if this along with her general better health is responsible for her increased mobility, but for the first time in her life she is now pulling herself up to stand, trying to walk…… i’m not a warm fuzzy emotional kind of person but even that brought tears to my eyes ….

@keeg1010
Hi Kerry,
Exactly, there were no other issues until I was 12 years old. As my epilepsy has been acquired, there is a latent period, that is the interval between the brain insult and the clinical presentation of seizures, which can last years. That is what has been explained to me.
Regarding the strange experiences (seizures) I had, today I know they were auras and deja vu experiences, very common in focal epilepsy in the temporal lobe. They lasted very few seconds and did not cause any inconvenience at that time. Nobody could notice them as they were non-motor. Today they last longer around 20 to 40 seconds (it is hard for me to say exactly how much they last, as my consciousness is impaired during the seizure). After the event at my grandfather's home, I just had one generalized seizure that has been provoked by the change of AED in 2019.
As I was just 5 years old when all that happened, I do not remember anything of this event. I just know it because my parents have told me when I was older. Better this way! But up to today, I am terrified of injections.
Yes, the earlier epilepsy is diagnosed and treated, the better! I understand well your fears. Let's talk privately.
Have a nice day!
Santosha