Any Positive Information On Epidiolex As The Only Meds? Currently On Zonagran.

Any Positive Information On Epidiolex As The Only Meds? Currently On Zonagran. | MyEpilepsyTeam

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Any Positive Information On Epidiolex As The Only Meds? Currently On Zonagran.

A MyEpilepsyTeam Member asked a question 💭

Any positive information on Epidiolex as the only meds? Currently on Zonagran. I'm reading and so many bad side effects. We asked our doctor to switch
Had a abnormal 24 EEG 1 month ago and in 2019,but not the cleavland clinic wants a 3 day EEG, I wish the shared data more . We have a functional doctor appointment and generics appointment. I'm my son's voice until he finds it and if takes fighting for his rights and researching like a scientist, then must be done.

posted December 23, 2022

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@A MyEpilepsyTeam Member
I don’t have seizures very often either. I usually just have 1 or 2 a month. However, that still has had a big side effect on me ever since the month I had my first one. Before I had seizures I could remember about everything, but after my first seizure that all changed. I use to be able to read stories and tell you everything about it but after I had my first seizure I no longer could remember a few sentences. My mom had to read every book we read in school. I’m still that way now. The doctors say my root cause is a lack of oxygen at birth but that doesn’t help them in stopping my seizures. From when I was 10 years old to 16 all the doctors tried was medications. When I was 17 they installed a vagus nerve stimulator. Then when I was about 35 I got an RNS.

posted December 23, 2022 (edited)

I'm sorry. Yeah my son don't really have many sezures. But the side effects to all these scare the crap out of me. Because western medication is all about medicating and not healing or looking for root cause. I'm excited to see genetics and the fuctional doctors, but not a 3 day EEG for the 2nd opinion, those are rough of my little guy, had to have 4 people to hold him to get the probes on his head last time.

posted December 23, 2022

@A MyEpilepsyTeam Member
I’ve had seizures ever since I was 10 years old and I went through a lot of similar situations. They never got any information from those EEG’s and my seizures are drug resistant. I’ve now had seizures for 31 years.

posted December 23, 2022

My son been on Zonegran since Aug. Reading about lawsuits and death rates and not approved for people under 16. It might interfer with the mthrf gene mutation also. My son has so many more sezures on it and falling a sleep at school.

I asked the Nero about the epidiolex and she will try, my son is non verbal autism with mthrf gene mutation, hasn't really had sezures but alot of brain spikes based on the last EEG, next one 3 days and another opinion. We hope the fuctional doctors can give is more natural answers and help. I just don't trust the meds or doctors and kickbacks, it's hard to trust when money is involved.

posted December 23, 2022