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SUDEP ACTION DAY 2021

SUDEP is a very scary term to many individuals and families live with on a daily basis. Many times those that live with their own certain #Glitch (Epilepsy) do not even know what this is or talk about it with their neurologist.

This day was previously known as SUDEP Awareness Day. It was changed to "SUDEP ACTION Day", because much more needs to be learned and done about it. SUDEP Action Day is devoted to raising awareness about "sudden unexpected death of epilepsy", encouraging people with epilepsy, to learn more about it, spread awareness to others that don't live with it and honor those that have lost their lives due to SUDEP.

SUDEP is rare in those that have "well-controlled" epilepsy, but still can happen as we learned through Cameron Boyce. He had not had a seizure for years. (a tragedy of a well known Disney actor, but now a family dedicated to raising funds on awareness and research to prevent SUDEP) **please note this is VERY rare**

According to The Epilepsy Foundation "risk factors of SUDEP varies from person to person. Not everyone with Epilepsy is at risk; so it is VERY important you discuss your risk with your medical team."I encourage you to visit epilepsy.com to learn more about SUDEP by the Epilepsy Foundation directly or at mayoclinic.org as well. JUST REMEMBER EVERYONE LIVING WITH THEIR #MYGLITCH, TYPE OF EPILEPSY IS VERY DIFFERENT, SO PLEASE TALK TO YOUR NEUROLOGIST TO LEARN MORE ON SUDEP.


For me personally having still #MYGlitch uncontrolled SUDEP is something that is always in the back of my mind. I have a device known as a RNS implanted on my brain that delivers treatment (Electrical impulses to electrodes) when seizure activity is detected on either of my right or left temporal lobes. It is commonly used in drug resistant focal epilepsy. Unfortunately; even with my RNS I am still on 5 medications because I have more than just that type of Epilepsy & my left temporal lobe is still less controlled vs my right. Now I have come a long ways since 2017 when it was first implanted and when the battery was replaced in December 2019(because it went off so much), as the amount of daily glitches I have but not where I need to be. (but process is process and i will take it!!) The RNS can also show when #MyGlitch occurs the most or a pattern, and my pattern occurs the most as of now during my sleep hours, hence why my days are hard because my body is recovering from lack of "true sound sleep", and lack of sleep is a trigger factor for those that live with epilepsy causing me to have them still during the day. On the VERY GOOD flip side the RNS device is what is protecting me from SUDEP. My neurologist assured me it is highly unlikely I would have SUDEP, he compared it to the same chance as having a car wreck but it is obviously still possible to happen.


Many have asked about my last appointment and we shared a very rare #Glitch via a video captured by one of our home video cameras. He took one look at it and said that is NOT a seizure coming from the brain, but he said it very well could be caused by the heart. (I have already been diagnosed before with syncope spells, where you have drop attacks due to having very low BP and then it causes a epileptic seizure. This time was different though in the fact I was lying down and fell off the couch, rolled off, started convulsing and stopped breathing for brief moments) due to that description and watching it, is how he knew it was NOT one of #MyGlitches having an absence seizure into a drop attach to the floor from the brain.

I am scheduled to have an echocardiogram & have an event monitor of my heart placed on November 19th and wear it for a month. (Oh joy wires on me for that long should be a grand old time) You can have "seizures" caused by the heart, but that is not Epilepsy, because it does not come from the brain.

According to Cureepilepsy.org having both electrical disturbances in the brain(Epilepsy) and heart (cardiac function) at the same time is a higher risk factor for SUDEP. Hence why this testing is so important to our family.




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diana
20 oct. 2021

Thank you for sharing this information on SUDEP in such a real and easy to understand way. You continue to inspire by taking your challenges and using them to spread awareness. Love you❤️

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Marissa DeVaul Parmer
Marissa DeVaul Parmer
20 oct. 2021
En réponse à

I continue to appreciate your kind comments & support spreading Epilepsy awareness along with our family. I hope I can give hope, even if to just one family living with their own #Glitch it is worth it. Or to at least start creating more conversations on SUDEP as 1 in 1000 people die a year & such little information is known about it. Much love! 💜

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