Sleep apnea and nocturnal grand mals

Hello @baa, I think you might find it helpful to discuss your question with your sleep medicine doctor or your primary care doctor. The Epilepsy Foundation doe have some information that might be helpful if you haven't already seen it.

-- Sleep and Epilepsy: FAQ
https://www.epilepsy.com/stories/sleep-and-epilepsy-faq
-- Relationship Between Sleep Apnea and Seizures
https://www.epilepsy.com/stories/relationship-between-sleep-apnea-and-seizures

Thanks John, I have seen these articles before but I did not get an answer to my question. I don’t see my sleep doc until late October or primary til later than that so will try the helpline. Thanks for input-

If you don't mind sharing, baa, what is your apnea diagnosis, and what was the prescription? Most failures in PAP trials are due to fit, personality of the user, or the wrong prescription. Most can be fixed, although the personality bit is a real uphill slog. Have you ever placed your case before the good people at apneaboard.com? They run a really tight ship there (I used to be a monitor), and they have some highly knowledgeable members on staff who are good at figuring out how to make PAP therapies work for their 'owners.'

If you have a modestly high probability of seizures, you should probably not sleep upright, but if you really must, simply place large foam sheets, maybe 4" thick at a minimum, around on the floor around your bed. If you fall sideways, those mats. about six feet long and at least three feet wide, should prevent you from much harm. Place the mats closer to the pillow, and you can forget what happens to your feet.... mostly.

Sorry, that's all I have to offer. No experience with this, but this would be my first resort if I were faced with the same problems.

@baa
Have you ever talked to your pulmonologist about whether or not a BiPAP would work better for you than the CPAP? I've never had sleep apnea problems but my cousin did. He had a CPAP but was switched to a BiPAP which helped him significantly although a lot of people can't use them for various reasons.
As far as the seizures are concerned, like the apnea, it depends on the individual and their circumstances.
I have had many Tonic-Tonic seizures in my recliner and haven't fallen out of it yet, at least to my knowledge. Although I think you would be safer in your bed. Can you prop yourself up in bed? To lessen the risk of falling out of a chair I wonder if a gait belt like the ones Physical Therapists use would help. It may not be long enough but two could be put together. I have seen very soft material in fabric stores. Maybe something like sheepskin for example and then make a belt/restraint out of it.
I sleep in my recliner every night.
take care of yourself,
Jake

Hi Jake and thanks! I actually do have Bipap and then to using the nose plugs. Absolutely nothing has fit my face and I’m about worn out. I put bed risers under top of bed and have a regular pillow+ a breathezy pillow on top. I was afraid if I propped up more than that I might topple over during a seizure! When I go for my appt with sleep doc I’ll talk to respiratory therapist. She’s the closest to a pulmonary doc I have. That’s a good idea about the gait belt. Thanks so much for the ideas! 😃

gloaming, forgot to mention, we never could find a cpap mask that fit (side sleeping seemed to be a factor), Bipap same problem. Went to nose plugs which actually work as long as I hold with hand. It’s the straps both behind ears and over head that won’t effectively hold. And it’s not the sizes, one works. Been trying for two years. I have moderate apnea and the respiratory has checked and set machine. I sleep in a full size bed, on side next to wall and have never rolled off. My concern with propping up too much was more of falling forward and suffocating. I sure appreciate you and Jakes input. More ideas to explore!

@baa
I forgot if your seizures were mostly controlled. Because you're having nocturnal Seizures it might be a good idea for you to use an anti-suffocation pillow just as a precaution especially if the seizures are not controlled. It's not really good to sleep in a chair/recliner. It eventully cause multiple problems.
I need to start sleeping in a bed.🤬☹️
Take care,
Jake

@jakeduck1
Leonard, I’m having nocturnal grand mals about every 60-days now. Since I don’t wake up, in and out of consciousness, I don’t know if that would be considered not controlled. And I live alone so it’s a little more dangerous. I got an anti- suffocation pillow in 2022 after my first one. Extremely uncomfortable but I use anyway. I have complex migraines also nocturnal. Leave me in and out of consciousness, can’t talk, stand up, etc., just like after effects of seizures! Weird. Everything that happens to me is nocturnal. It’s the darned sleep apnea that has me concerned - just can’t get a handle on it.
Thanks for your input🌷