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keeg1010 (@keeg1010)

Seizures/how to dose CBD/medical marijuana

Epilepsy & Seizures | Last Active: 10 hours ago | Replies (63)

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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,

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Replies to "@keeg1010 Hi Kerry, Good Morning Thank you! I am also very glad about the progress I..."

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.