So I have the patient portal with my neuro, where I can message her anytime to ask questions or whatever. I wrote her to ask if there was a med i could take during the middle of the day because I was having most of my seizures and auras during that time. I also asked her if the abnormality on my hippocampus was why Im still having seizures despite being on 3 different seizure meds and medical cannabis. She never answered me about the mid day med but said she wanted me to have an MRI. So I did that and it said there were no abnormalities and everything was normal. Back before I had my brain surgery at Shands, I have had MRI’s done and none of them showed any abnormalities. The test that did see them was the PET test. 1 on my right frontal lobe and the other on my hippocampus. I have a seizure diary app on my phone to keep up with them and to show my neuro how often im having them. Sometimes I dont even remember logging them in, my concern and constant worry is that im never going to be seizure free. Should i just accept that? Is there anybody else doing the medical cannabis and its not helping them? Oh, and also, I just recently had my 6month appt. with my medical marijuana doc and let her know that i was still having seizures so she recommended that I do 1part cbd and 1 part thc. Tried that and NO THANK YOU!!!!! It made me feel like I was in a constant aura that would not go away, I hated it and never want to do it again!!!! Had a seizure 1 hr after I did it. And have always had seizures after ive done the vape or the oil. It just doesnt help me at all. Nothing is or has!!!! I apologize for this long post but is anybody else out there in a situation like mine? Where you’re still having seizures despite brain surgery, VNS, medical cannabis, and taking Briviact, Onfi, and Lyrica? So depressed, very anxious..just down and out.
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