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Seizures developed after TBI in 2011
Epilepsy & Seizures | Last Active: Jul 29, 2024 | Replies (9)Comment receiving replies
@clevelands
i've had Generalized Epilepsy for almost 60 years. Possibly caused when I was hit in the head with a baseball bat as a kid.
I've always refused VNS, surgery or any other devices or procedures.
I had seizures daily or near-daily until I was put on an extended version of carbamazepine (Carbatrol). Since then my seizures stopped unless I fail to take my meds. My last Neurologist didn't prescribe generic seizure medication unless a patient insisted. I can't think of any other reasons why my seizures would have stopped after 45 years. Also, some people have seizure when they get refills by a different manufacturer. Stanford University did a study recommending seizure patients not take generic seizure medication. how often does your husband have seizures? Why doesn't the doctor believe medication will control his seizures? Do you know what type of epilepsy he has? Does he have only tonic clinics seizures or does he also have other types?
Take care,
Jake
Replies to "@clevelands i've had Generalized Epilepsy for almost 60 years. Possibly caused when I was hit in..."
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Hi @clevelands
I have epilepsy since I am a teenager and just got diagnosed of epilepsy in 2019 when I was 48 years old. The first 3 years were very difficult for me, I got desperate. Medications did not work well for me, either because they worsened my seizures or I could not tolerate the terrible side-effects I had. Surgery was then recommended (laser ablation). But thankfully, I had an appointment with another neurosurgeon for a second opinion. He did not recommend it to me as it would cause more harm than benefits, such as aphasia like @msabbygail has mentioned. He insisted on trying other alternatives before such surgery and recommended an epileptologist who has made a great difference. There are many options before doing such surgery, that few doctors explore, unfortunately.
I same the same opinion as @jakedduck1. Surgery should be the last resource when everything else has been tried: AEDs, diets, trigger management, TMS (transcranial magnetic stimulation) and other alternative treatments (Johns Hopkins Hospital seems to be a hospital that explores well those alternatives, according to some of mu contacts). If they do not work, you can stop with those treatments at any time without consequences. Differently from surgery, that after doing it and a part of your brain is removed, there is no way back.
I today control my seizures and have again a life quality through Epidiolex (medical cannabis), a specific diet (gluten-free and anti-inflammatory diet), lots of exercising, yoga and trigger management.
Stay strong and fighting!
Chris (@santosha)