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Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: Mar 22, 2023 | Replies (66)

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@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

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Replies to "Hi Jake, I want to say thank you for responding to all my questions. I have..."

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.

Hello Kerry, a neurologist based at the University of Saskatchewan, Saskatoon , Canada has been doing trials and research on CBD/ THC children’s epilepsy treatment and maybe they can help you with the dosages. Dr Richard Hundsman. All the best!
Hugs,
Alla