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Seizures/how to dose CBD/medical marijuana

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

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@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

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Replies to "@keeg1010 Hi Kerry, I know what you mean about adding more meds. I had severe Epilepsy..."

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