Hello, I have 90% of my seizures in bed, usually in the early morning when I think I am changing sleep states. Maybe coming out of REM or something? My memory gets pretty blanked out around when they happen. I've averaged them once a month for a few years, but they seem to be coming more frequently this last year.
Is there a most common time of day and/or frequency of seizures for folks reading this?
This is my experience also Todd. Shifting sleep phases is not smooth. Now that I'm diagnosed, at least I know what the agitated feeling is. Sometimes my legs twitch and stiffen too. And p.s., sounds like our families of origin are similar. Hang in.
I have been to sleep dr who have do me with not sleep disorders apnea and insomnia
They put my on a bipap machine but I just can’t wear it
So they added Keira to my lamictal and I lost like 40 pounds and got a sleep wedge to elevate my head and it has helped some
Thank you for your response. I don't know that I do have sleep apnea because the test didn't go well. I decided to test because my mom/sister have it.
It would be scary to wake up in blood.... maybe you need a padded cell lol.
Since there is no cure, "managing" seizures is the key. Keppra works better for me than Lamictal. This is where individuals react differently to meds. Like you, I use an app on my phone for tracking. I use one called "Track It". I also fill about a months worth of pill containers for my meds and have an alarm set on my phone. This keeps me pretty compliant on my meds.
Probably the biggest thing that I have worked on with decent results is learning to relax. I enjoy being outdoors playing with flowers and watching birds. Music helps too.
I wish I could find a neurologist that I like. Currently, I am being treated by my primary care physician because he listens to me instead of just trying to push more and more eeg tests. I trust him. The day he agreed to treat me, I felt like the weight of the world had been lifted. That being said, he is not a neurologist. This website has been extremely helpful and I am now working toward a plan including "rescue" meds. Last seizure, I took Klonopin. It seemed to minimize the seizure and I slept instead of having waves of nausea and fear. Either way, I am tired for a couple days afterwards. Next time, I will take a half dose and see what happens.
Best of luck with your journey🥰
Epilepsy Foundation - Facts & Statistics About Epilepsy: https://www.epilepsy.com/what-is-epilepsy/stati...
US National Library of Medicine: Epileptic Seizure Cycles: Six Common Clinical Misconceptions https://www.ncbi.nlm.nih.gov/pmc/articles/PMC83...
Mayo Clinic: Seizures https://www.mayoclinic.org/diseases-
conditions/seizure/symptoms-causes/syc-20365711
Great! Hopefully answers and positive information! God bless you!
Here are the details from the National Library of Medicine on Sleep Apnea for those of you who have not had a successful sleep test and have someone at home to observe you as you sleep:
https://medlineplus.gov/sleepapnea.html