SUDEP in Epilepsy and the mind games this causes…

imageedit_23_5848535444You know this info is very hard to deal with… specially AFTER you have had a cluster of seizures. Hows this for mind games and torture from info like this…

At the start of the month I had a bad seizure cluster and was having a very hard time mentally recovering from it all. Then I stumbled more and more across people bringing up and talking about SUDEP and that really started to mess with my head and what I was thinking. I started to have an incredibly hard time sleeping. I have had many seizures in the middle of the night while I’ve been asleep so now the mind is playing games… If I don’t sleep this can’t happen… BUT… if I don’t sleep I might trigger a seizure do to lack of sleep… so …to sleep or not to sleep… that is the question…
SUDEP… good to know (I guess) but hard to swallow… specially after suffering a seizure cluster…

Author: dhbepilepsy

Creating Epilepsy awareness

One thought on “SUDEP in Epilepsy and the mind games this causes…”

  1. I understand your fears. Soon after my adult daughter experienced her last seizure and gave way to SUDEP in 2012, my Epileptologist explained my risk of SUDEP is very high. If a person has sleep apnea, breathing issues, and heart issues plus uncontrolled epileptic seizures and a family member that has passed from SUDEP, the risk is high. As I took in this information, I did not fear! Instead ( and I encourage YOU to do this) I took action to create SUDEP solutions and , beginning with myself, really took a serious look at everything I could do to get a better control on y health. Under the care of my medical team I am currently on the MAD diet. I am confident when I lose 20 % of my body weight, symptoms of seizures and other issues will go away and risk of SUDEP will ease. Also, mindset has much to do with your well being. Understand none of us are guaranteed the next breath so learn to let go of the fear and worry to enjoy the moments of life you have.

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