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.
Liked by Leonard Holloway