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MRI is normal but having seizures every day
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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On Monday l was admitted in the hospital to be tested to see if l was having seizures. Then all of a sudden my heart went into tachycardia. My heart rate went up to 185 beats a minute. They nurses saw it moving up but when it reached that high my cardiologist came. So there were 4 nurses a crash cart and my doctor. He a good doctor l just so blessed. So he tried to get me to take slow deep breaths. Then he told me l going to give you a med then l will stop your heart and then restart it by shocking you. And l just praying silently not showing fear. And God blessed l went right back into normal rhythm. He couldn't believe it. Then it happened the next day so the doctor said we will have to do something.So on Thursday he was trying to get someone to do a heart ablation surgery. And on ,Thursday the doctor he really liked who does it had a cancellation. I had my surgery on Friday. And he told me all these years when everyone wasn't telling you that you had a mental problem it was always your heart. You were born with this and the doctors who ran your cath test should have seen that it was your heart. I so blessed that God put these doctors in my pass. Now he wants them to take care of my liver. Thank you Jesus there are still good doctors who care.
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4 ReactionsGod is Good all the time.
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2 ReactionsHi, @techi - thanks for the update on your time in the hospital being monitored for seizures, and glad you connected with @qcity and @johnhans. I merged your post with this discussion in which your updates have appeared previously, "MRI is normal but having seizures everyday!"
Wow - amazing you happened to be in just the right place when something else entirely happened, tachycardia, a heart rhythm disorder https://www.mayoclinic.org/diseases-conditions/tachycardia/symptoms-causes/syc-20355127. Glad you were able to get in so quickly for the heart ablation surgery your cardiologist recommended.
Here is a particular discussion in the Connect Heart Rhythm Conditions group which you might like to read and where you might be interested in sharing your experiences with ablation, as the conversation touches on heart ablation surgery https://connect.mayoclinic.org/discussion/desperately-frightened-please-help-me
I realize things have taken quite a different turn and this may not be your top focus at this point with the heart issues that cropped up, but wanted to know, if you feel up to it, what has happened thus far related to your seizure monitoring, @techi?
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2 ReactionsHi Lisa @techi, I was so happy to read your latest post. It is really great news about the timing and all of the doctors and nurses being at the right spot at the right time. Thank you for taking the time to share this with us.
Blessings on your day...
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3 Reactions@lisalucier Hi! Well...they want me to fill out a months worth of seizure activity first, so thats what ive been doing. I dont have the inhaler yet. But still been having them daily so im sure they will have plenty of info. I just have to log onto this calendar and what kind of seizure I had, how long it lasted and what I did during the seizure. So I think she said after that I will go back and stay in their facility for atleast 2 days and they will monitor me and all that fun stuff! Will keep you posted! Thank you!!
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2 ReactionsJust wanted to give you guys an update, Im so excited!!! So Friday I got me a new bottle of cannabis oil, its called TruNano and the ratio of its product 8:1 (cbd:thc) ive gone 2 days now without having any seizures or auras!!!! May 16th was the last time i went a day without having any, so im so excited and happy that maybe hopefully this is what I needed!!!!!
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2 Reactions@crstyday40
It’s about time for some good news. I forgot, are you also taking Epidiolex? Regardless, congratulations on your Improvement.
Jake
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2 Reactions@crstyday40 - great you've had no seizures or auras in 2 days!
Also curious . . . would you say you are making any useful observations about your seizure patterns or learning anything else from recording your seizure activity?
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3 Reactions@jakedduck1 no Im not doing the Epidiolox, just the oil no vape either!! And thank you so much!!!
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1 Reaction@lisalucier from what I could tell they mostly were happening in the late morning hours and then anytime after 3pm til bed time which is 10pm. I had asked my neuro if there was anything I could take mid day since thats when I seemed to have them and she never would answer me about it. When I went in to see my regular doctor for my hypothyroidism I was telling her about my seizure activity and she said I could take buspar 3x day. So I had started doing that but still was having seizures. But ive stopped doing that 3x day and am going on my 4th day today, so far, with no seizures!!! I was so discouraged of even trying a new strain of the cbd/thc oil and wasting our money because I just knew it wasnt going to work and I cant believe ive gone this long without having any seizures or auras!!! Im so thankful, happy, blessed, excited, and I could go on!!! I guess I just needed to find the right ratio for me! Thank you all so much!
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