My brother is 30 years old and started having seizures in his early 20

Posted by kristinalynn @kristinalynn, Aug 3 1:02am

My younger brother who is 30 now started having random seizures after the loss of our caretakers. It's now happening in his sleep and he's in the ER right now because of one far more worse.
Please help me look for signs and what to dos or not dos what to expect from Dr's other than medicine home and maybe an egg. What to ask for to get answers. We are in memphis tenn.

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@kristinalynn

They happen at random. Awake or asleep. It doesn't seem to matter. He doesn't have insurance so sometimes the cost of buying them isn't even an option. After he seizes it takes alot of energy from him he doesn't have any memory of it happening but I'm scared he'll have THE LAST ONE soon.

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@kristinalynn
I have been re-reading the posts that you, Chris and I have made and I noticed you mentioned "I'm scared he'll have THE LAST ONE soon." I'm not telling you the following information to frighten you, but because I believe every person with epilepsy has a right to know what could happen. Doctors seldon, if ever, talk to patients about these conditions. Although dying from a seizure is possible it is very rare.
FIRST, S.U.D.E.P which means "Sudden Unexpected Death in Epilepsy." The statistics are that one in 1000 people die from
S. U. D. E. P., however I don't believe those statistics are very accurate because many States in the US don't require it to be reported The same with many providences in Canada and other countries throughout the world. My seizures were uncontrolled and the frequency was daily to near daily so this was of some concern to me but not much since I didn't have
nocturnal seizures other than one or two. But S.U.D.E.P. can happen during waking hours too although it extremely rare.
Most of the people who die from S.U.D.E.P. end up dying in their sleep which is why I recommend using an antisuffocation pillow and monitor those at highest risk in some way, baby monitors, sleep with them and there are watch like devices that can warn of seizures. Increased risk factors of S.U.D.E.P. are frequent nocturnal, uncontrolled seizures. Some researchers believe heart and respiratory problems may increase the risk even more. Doctors seldom discuss the possibility of S.U.D.E.P. with epilepsy patients.
SECOND, Nor do they often if ever mention a condition called STATUS EPILEPTICUS which are Tonic-Clonic seizures that don't stop on their own and are a medical emergency. Unfortunately, I am all too familiar with this condition. If the medication's they give you at the hospital don't stop the seizures. They have no choice but to put you into a medically induced coma until the seizure activity ceases. I have been put into many commas, My longest was eight months. I discovered this condition was possible on my own, no doctor ever mentioned either of these possible conditions to me. If a Tonic-Clonic seizure lasts more than 5 minutes go to a hospital and say he may be in Status Epileptcus.

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@jakedduck1 my brother is taking kepra medicine for his seizures. Haven't had one solid solution of a proper diagnosis and they have been going on about a decade or so.

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Hi @kristinalynn
Wouldn't it be a good idea to take your brother to an epileptologist, perhaps? I saw a great difference in my treatment when I was cared for by an epileptologist, a neurologist specialized in epilepsy. Before, I was being treated by neurologists and psychiatrists.
Chris (@santosha)

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