The Image Below Provides General Definition Of
Nocturnal Seizures:
However, I don't have the "normal" definition of nocturnal seizures
How I Experience Nocturnal Seizures
(As a reminder, this is in my own words and not medical)
First off the reason I am not your "normal" diagnosed person living with epilepsy is I do not have tonic-clonic siezures. This past year I was diagnosed as having nocturnal seizures only due to my RNS implant picking up seizure activity. If it wasn't for the implant, I may still not know I'm living with them. One sign is I wake up with an extremely soaked shirt drenched in sweat, but I am also pre-menapausal which causes these night sweats as well. When this happens, I get up and change my shirt, just like I did last night around 4am.
My nocturnal seizures typically happen just after I fall asleep or when I am about to wake up, which is very common for when they occur. There have been times where I suddenly wake up and run to the bathroom. Other times I just suddenly wake up and sit straight up in bed, just like when you wake up from a nightmare scared, sometimes gasping to catch your breath. When I wake up and have a strong head pain and feel very "out of it", I more than likely experianced some nocturnal seizures. These types of seizures do seem to happen in a pattern for me of 3-4 days on and then roughly 3-4 days off. When I have them, the next day I feel very exhausted because my body is recovering and that seems to make me more likely to have seizures the next day. As a note, these do not have to be at night. I had had them during the day as well while napping. (nocturnal is only due to sleep)
Adjustments Made To Routine
I am not trying to do sleep meditation classes just before I go to sleep at night to try to relax my brain. Also, I am doing a morning meditation after breakfast try to relax the brain and my body. I have cut back on my caffeine at night and I'm drinking water more, which is a good health choice regardless of if you have seizures or not. My medication is being adjusted to a newer medication that has come out (XCOPRI), which has a side effect of making me tired so I take this right before bed with a stronger dose.
Why Nocturnal Seizures Are Scary
When I was told I was having nocturnal seizures, the first thing that came to my mind was SUDEP (sudden unexpected death by epilepsy), due to it being more common during nocturnal seizures. Even though I know this is rare, living with epilepsy it is always your biggest fear! My family was the first thing that popped to my mind and not being able to be with them anymore! But, my doctor has made me feel better and more confident I shouldn't spend time worrying about this since I do not have tonic-clonic seizures and with the RNS it is even less of a chance. Even though I still worry about it at times, I understand I can't live in fear and I have to trust the doctor's judgement and live my life, because it's the only one I get!
Fun Fact Today: #EpilepsyAwareness is trending on twitter! Thank you to all of you that share my story and others out there sharing any facts or your own epilepsy story. Lets make it trend on ALL SM sites!
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I’m glad you are finding resources and ideas to improve your sleep. I know the more rest you get, the better you will feel💜