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What could doctors do better for people with epilepsy?
Epilepsy & Seizures | Last Active: Apr 2 7:15am | Replies (71)Comment receiving replies
@santosha
What angers me is so many doctors refuse to explain the possibilities of seizures that are life-threatening like Status Epilepticus and S.U.D.E.P. (Sudden Unexplained Death in Epilepsy.)
I saw a doctor interviewed on tv or the internet, I can't remember. But he said he refused to tell patients of those conditions because they would worry and couldn't handle it. Like the parents could handle the death of their family member better? Few if any of the people I knew or met on forums were never told of ways to reduce the risk of death.
Perhaps there should be pamphlets in doctors' offices like there were decades ago explaining the dangers of day-to-day living like not taking baths due to the possibly of drowning, the dangers of showers, , or cooking on rear burners of the stove, cook in microwaves if possible. People have drowned in bathtubs, showers, even while washing dishes. Dangers are everywhere. Newly diagnosed patients should be educated.
Take care,
Jake
Replies to "@santosha What angers me is so many doctors refuse to explain the possibilities of seizures that..."
@jakedduck1
Hi Jake,
I agree with you—SUDEP and Status Epilepticus are conditions doctors should discuss more openly with patients. I've learned about both conditions through my own research during my first year of treatment.
There are ways to present this information without causing undue anxiety. Withholding information doesn't protect anyone—it just avoids difficult conversations that doctors should be having.
I'm curious to know what other members' experiences have been in this respect. Were you informed about these conditions by your doctors, or did you discover them on your own?
Chris
@jakedduck1 I have had seizures for 20 years but have not really read much about SUDES until the last few years. Only because my seizures over the last few years have gone from CPS to Drop seizures, I think also called Atonic? I have been looking to see if there were any new meds out over the last 14 years since I stopped all meds which were doing nothing or causing more seizures than I started with.
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@jakedduck1 I think that is because so many general PCP's (and some N.P.'s that I've met) do not know Neurology... They are not a Neurologist-- which takes a greater/extended medical education than general M.D.'s
It is why I am so thankful for Mayo Clinic Neurology.