Does Anyone Else Have This Somewhat Rare Disorder? | MyEpilepsyTeam

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Does Anyone Else Have This Somewhat Rare Disorder?
A MyEpilepsyTeam Member asked a question 💭

My son has Dravet he can go days without a seizure. Yet, when he does have them, they are of various types and degrees
Sometimes he just stares, he has severe drop seizures( he is like the old blow up, stand up punching bag). It's horrible to watch. He drops bounces back up and is completely disoriented. He has 5 or 6 grand maul seizures at a time in the matter of 20 minutes. Had to call children's @ 11:30 p.m., ( he had several more over course of the night.)he was better. Or so I thought on… read more

posted December 23, 2019
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A MyEpilepsyTeam Member

I have seizures more often and worse when im any kind of stressed or upset or tired. I get sick to my stomach Vomit occasionally loose my appetite And ive had ptsd for years for multiple reasons. As far as from years of abuse to being paranoid inside that ill die or perhaps loose my memory and how much my multiple seizures at once will further mess up my day. I try not to worry about it but lets be honest.. i am an adult on my own and if it isnt one thing going wrong it’s another. I have no family no friends and nobody there to care if im ok or to tell im not or to save me or my service dog if im not. Social security is attacking me for overpayment for something i wasnt capable of being responsible for because i had complete memory loss and they took away my only source of income. My kids dad stole my kids and now i got two letters from ss at the hotel saying they raised this overpayment from 900 to around 16878. In a couple days. I dont make enough a month to pay 900 off and i couldnt save enough in a year to pay over 16000 off. And thats if i didnt have things like rent or kids to pay for or basic necessities. I was deemed completely incapable of work due to the severity and intensity of my illness. I also have type one brittle
Diabetes.Sorry for the elaboration.They are stressing me out way more and Couldnt care less how it affects me. Only two drugs seem to help me but i have sleeping issues passing out issues and the keppra really never seemed to help except for the 250 morning dose along with 900 trileptol morning and night. They tried bout 3 other meds on me before they figured that out. They cant draw more then two vials of blood from me or i have grand mal seizures and pass out from severe weakness and dizziness and have dry heaved before and after i pass out. They never have found out why. My heart murmurs off and on and i have brain damage and tbi and i have extremely low blood pressure on the regular although i eat healthy excersize and am in shape.

posted December 23, 2019 (edited)

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