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How to avoid side effects of drugs.
Epilepsy & Seizures | Last Active: Apr 23 7:47am | Replies (13)Comment receiving replies
I'm super refractory with daily episodes of focal impaired awareness seizures. I have an RNS, which at least gives you something to talk about. It's been a few days since I finished tapering off Hellpakote. I'm not even sure why they put me on that med. Anyways, I remain on Lamictal, Aptiom, Clonazepam, with rescue meds like Valtoco and Ativan, but they do nada, nothing. Surgery? Nope, not ready to give up. As a left dominant with left foci (amygdalae), there are new things emerging: stem cells, a new RNS device created at ICHAN Mt. Sinai, promising drugs with UM. It's an endless quest, maybe for nothing.
Replies to "I'm super refractory with daily episodes of focal impaired awareness seizures. I have an RNS, which..."
Hi Piero,
pained to know you are super refractory
Guess you were not refractory in initial days of treatment. If you weren't, then Could unnecessary 'hit and trials' by medicos be the reason of refraction ?
Anyway, in no case we should be guinea pigs and pay our health for ignorance of medicos.
True, stem cells treatments and devices are emerging. Hope for the best in coming days.
May God bless you with success in your fight. regards
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@pmracc33186
Hi Piero,
Great that you are exploring other alternatives and have not given up!
In 2020/2021, I was on my way to prepare for surgery in the States (LITT) and thankfully, I went to see a second opinion from a neurosurgeon who was against surgery in my situation (I have a temporal lobe with sclerosis on my hippocampus on the left side) because of the consequences and high prices I would have to pay for it (memory, speech, nomination, etc.) and not freeing me from medication at the beginning. Thankfully, I have changed ways and tried alternative treatments, Piero.
Thank you for sharing this new RNS device. Have you heard of portable helmets of TMS (transcranial magnetic stimulation) that if used daily can help to reduce the seizure threshold?
Chris (@santosha)