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lpate (@lpate)

Searching for a diagnosis post epilepsy

Epilepsy & Seizures | Last Active: Aug 22, 2020 | Replies (14)

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I wonder if you’re having multiple issues?
There is a type of Epilepsy called Abdominal Epilepsy but it is very rare but of course that doesn’t mean you can’t have it. Do you have muscle jerks if so what time of the day do you have him also you mentioned fainting I believe is it actually syncope or is it an actual convulsive seizure Were you fall to the ground and begin to shake and jerk and are confused to afterwords and probably sleep. Also has anyone witnessed these attacks? When your neurologist put you on anticonvulsant medication I believe you said you were better but then they took you off and your problems increased. Can you tell us EXACTLY what symptoms became worse?
When someone is diagnosed with JME (juvenile myoclonic Epilepsy) The EEG tracing is occasionally normal. Just because a person has a normal EEG does not mean they don’t have JME Juvenile Myoclonic epilepsy or any other form of epilepsy. Have you figured out what any of your triggers may be? Do you know the reason your doctor took you off the medication? Was it because your EEG was normal? If that was the reason why my personal opinion is that he was very irresponsible in doing that especially since your condition worsened.
Have you been to more than one Neurologist? I believe seeing Endrochrononologist is an excellent idea.
Also since you have already had a regular EEG it might be a good idea to suggest to your doctor bet you have a sleep deprived EEG or an ambulatory EEG where are you are tested for multiple days so they can check when you’re awake and asleep. Also you can suggest being admitted to and epilepsy center. If you were near Rochester Minnesota Arizona or Florida they have excellent facilities to be diagnosed.
I wish you well and please keep us advised,

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Replies to "@ipate I wonder if you’re having multiple issues? There is a type of Epilepsy called Abdominal..."

Thank you so much for your response. In the beginning, when I would pass out I was usually around my friends and they claimed I would jerk for a very short time. Recently, my mom who is a nurse witnessed a spell and said when I dropped I was still and out for about 30 seconds. She, along with the other doctors I have seen agree it is not epilepsy and something else because of my descriptions. My neurologist put me on Lamictal to start. I began having more issues (excruciating headaches, worsened nausea, irritability) so he switched me to Keppra and then to Zonisamide. These issues got even worse to where I could barely function. I felt as if I was better prior to anticonvulsants. After a normal sleep deprived EEG and further work-up from another epilepsy specialist in Savannah, I was taken off my meds. I seemed to be better for a while, and then the issues have gradually gotten worse to where I vomit multiple times a day out of nowhere, feel faint, & can barely walk outside before feeling terrible.

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