Any good devices for nocturnal epilepsy?

XxBlaqkxX

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Are there any good devices out there to use for nocturnal epilepsy? Either what I'm seeing is pretty expensive or I'm not certain if it'd work or not. Living paycheck to paycheck so we can't afford something huge right away, but I'd like for my husband to be able to get more sleep as he tends to stay up if I have a seizure and sometimes I have a few more so he ends up staying up all night to make sure I'm okay. Any devices that work to alert him if I had a seizure and would offer us all some peace of mind?
 
I don't know if these ideas will help or not, but they are not expensive to try:

1) Try sleeping on you side using a body pillow to support your torso and top leg (recommended for sleep apnea which can be related to seizure activity).

2) If you sleep on your back, elevate your head when you sleep - either a larger pillow under the head, or a wedge pillow that supports the upper back, neck and head (recommended for sleep apnea which can be related to seizure activity).

3) Try meditation before going to bed to calm the mind (release stress of the day before going off to dreamland)

4) Get at least 10 minutes of direct sunshine every day (helps your body produce sufficient vitamin D and regulate hormones).
 
I try to sleep on my side if I know I'm having problems because that's safest. Last evening was a bit crazy because I fell asleep on my back, and woke up to my head feeling so weird and then I felt like I lost muscle tone or something in my arms - they suddenly felt weak and I had tremors so I turned myself on my side and remember having a tonic clonic on my side, but I know that type of scenario isn't going to be the case every time. I tend to lay on my back in my sleep and it feels more comfortable being elevated, but I usually have two pillows stacked against each other, which I don't know if that'll be as effective as a wedge because they could slip or slide.

Generally I feel pretty good getting into bed at night when I'm tired so I'm not sure stress is even a factor.

The thing that puzzles me is that I've been getting out more earlier in the day to walk around in direct sunlight. I've fixed my sleep schedule to wake up earlier in the day and go to bed earlier at night so I get adequate sleep. I have been getting out, about, and walking around most of each day throughout the week - unless I'm sick. I've been losing weight and that's been working for me, but the nocturnal epilepsy has been kicking my butt and it's getting hard again to function in the day. All I want to do is lay in bed. I'm thinking I'm having seizures that are causing sleep deprivation, which is aggravating my brain and causing more seizures. It's not feeling like a win-win right now. I really wanted to go out today, but I already had 3 seizures in my sleep yesterday and my husband stayed up all night because he was worried about me and he didn't get any sleep so he didn't go to work today. Feeling pretty helpless about this because it keeps happening.

I thought with the healthier adjustments I was making I'd have less seizures instead of more....kind of a mystery.

The neurologist upped my dose of medication since I'm on the lower end, but I know that stuff takes time to build up so in the meantime I don't know what else to do...:(

Thank you for your tips :)
 
... I usually have two pillows stacked against each other, which I don't know if that'll be as effective as a wedge because they could slip or slide. ...

I would think that is fine. Sorry to hear about your seizure activity.

Have you ever been tested for sleep apnea? Have you asked your husband if you snore at night or if he is aware of you having short periods where you stop breathing (not during/after a seizure)?
 
I would think that is fine. Sorry to hear about your seizure activity.

Have you ever been tested for sleep apnea? Have you asked your husband if you snore at night or if he is aware of you having short periods where you stop breathing (not during/after a seizure)?
With my weight gain that I wouldn't be surprised if there was sleep apnea going on at times. Once in a while I snore, but it's not frequent from what he mentions. No pauses in breathing have been noticed by him.

I've had times where I've flat out stopped breathing after a seizure without sleep apnea issues.
 
Sounds like you don't have a severe apnea, so that's good.

Have you talked to your doc about your medication schedule? Maybe adjusting when you take the pills could make a difference. Ie. taking them at night versus in the morning or taking extended release verses regular formulation might improve the blood serum levels at night.
 
My neurologist switched me to the ER version of Levetiracetam and for a while, that was going well. Started having more nocturnal seizure issues and she switched it to all at nighttime and that helped for a while, too. Now I'm having issues again so she upped the dose since my medication dosage is already at the low end. I've been having less seizures as the days go on as far as we're aware. Unfortunately, I'm still having noticeable seizure activity at night.

I'm also noticing that around this time of the year last year, I was having these issues a lot more and then it calmed down so I'm wondering if there's a possible environmental trigger or if it's just that time where most people get sick and that alone could be the trigger since I had been sick.
 
I don't remember where you live - is it summer or winter for you right now?
 
Hi XxBlaqkxX,

As Bernand mentioned I have no idea where you live but my neuro found out that I have more seizures in the fall and
winter compared to the spring and summer and he calls them "seasonal seizures". The reason why I have fewer seizures
in the spring and summer is because there's more serotonin out this time of yr. compared to the fall and winter so he
told me to sit around bright light when fall and winter came and that has helped me a lot.
Wishing you the best of luck and May God Bless You,

Sue
 
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