Any good devices for nocturnal epilepsy?

[XxBlaqkxX]

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?

 

[Bernard]

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).

 

[XxBlaqkxX]

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

 

[Bernard]

... 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)?

 

[XxBlaqkxX]

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.

 

[Bernard]

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.

 

[XxBlaqkxX]

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.

 

[Bernard]

I don't remember where you live - is it summer or winter for you right now?

 

[Porkette]

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

 

[XxBlaqkxX]

I don't remember where you live - is it summer or winter for you right now?

It's still summer here =) USA. Technically fall now, according to the calendar, but it's still crazy hot so not like that matters lol.

 

[XxBlaqkxX]

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

Technically fall, but still summer weather. We have around 300 sunny days a year so serotonin issues outside wouldn't be an issue, but it's usually hot and a lot of people stay indoors or in the shade, which may cause lower serotonin and vitamin D levels. Shortage on sunlight here is rarely ever an issue. Rainy days mess me up, though, and we usually don't get those until the summer months, but it's been a strange rainy season. It's been rather sporadic than rainy every day for like a month as it usually is. It's kind of weird because I get up, get out, and while I'm out and about I feel great moving around and getting enough sun (of course being careful not to get dehydrated and stuff). Then, around 3:00 p.m. when I'm usually feeling tired like I want to take a nap, sometimes I have stiffness in my muscles or mild muscle spasms and in my sleep it's way worse. Then this goes into the morning hours making it incredibly hard to get up. This morning I had incredibly sore muscles and painful muscle spasms in my legs until about noon. Then again, I had 2-3 seizures last night according to my husband. When I get up and walk even a little, all my energy is gone.

 

[Porkette]

Hi XxBlaqkxX,

I am beginning to wonder if it's the low pressure in the weather that could be triggering your seizures. I often have that
happen to me. My back will often bother me and then I will also have a seizure even 1-2 days before it rains or snows my
neuro. told me this happens because the air is heavier and in turn that messes with the hormones which can trigger seizures
for me. You may want to try doing what Steve mentioned and drink water 3 times a day after your meals. I can see how it
has lowered my seizures like crazy. I wish you the best of luck and May God Bless You.

Sue

 

[Bernard]

Sounds like you are on top of the obvious factors that are within your control. Unfortunately, sometimes the brain just doesn't cooperate.

 

[XxBlaqkxX]

Hi XxBlaqkxX,

I am beginning to wonder if it's the low pressure in the weather that could be triggering your seizures. I often have that
happen to me. My back will often bother me and then I will also have a seizure even 1-2 days before it rains or snows my
neuro. told me this happens because the air is heavier and in turn that messes with the hormones which can trigger seizures
for me. You may want to try doing what Steve mentioned and drink water 3 times a day after your meals. I can see how it
has lowered my seizures like crazy. I wish you the best of luck and May God Bless You.

Sue

I've definitely heard of air pressure being a trigger. I think it was you that mentioned it and then I looked more into studies about it and it's quite something. It doesn't help that I live at a high altitude and as much as I financially want to change that, there's no way we can right now. When we have the altitude with a storm, I feel horrible. We haven't had a storm in a little while, but the seasons are changing. I make sure to carry water on me to sip throughout the day. I know staying hydrated helps, but it hasn't been 100% foolproof and some days I have had a crazy time trying to stay hydrated. I have tried filtered water/added minerals, Ph balanced water, electrolyte water...and I'm still having issues getting hydrated some days. I'm not sure if it's the heat or what, but getting hydrated is difficult some days for whatever reason. Other days, I'm totally fine with the same amount I had been drinking so I don't know what the problem is there besides maybe the weather

 

[XxBlaqkxX]

Sounds like you are on top of the obvious factors that are within your control. Unfortunately, sometimes the brain just doesn't cooperate.

I'd like to think so, but I think my diet could use some serious work again to see how I do because I've tried everything else and yes, an uncooperative brain. I feel like COVID messed me up so bad.