So I pretty much spend every night awake trying to fall asleep. I can't take sleeping pills otc or prescribed because I have a bad reaction that does not involve sleeping.....my boyfriend and everyone I know thinks I am crazy because of it but honestly if you have ever had seizures and felt that feeling of falling and waking up and not remembering where you are or why or what day or why your tongue hurts... then you get it?...I hope? Any suggestions? Help? I'm just sick of being scared, because there are times when I didn't wake up.
Scared to fall asleep
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It's sort of like the old Nightmare on Elm Street movie - scared to sleep because of what may happen.
However, you have to realize that sleep is an integral and necessary part of living to maintain proper circadian rhythms, neurotransmitter levels for brain function, etc.
If you seize, you seize. Deal with it then (or afterwards). Don't let the fear of it ruin the times when you are not seizing IMO.
Here's some tips for insomnia (trouble falling asleep).
However, you have to realize that sleep is an integral and necessary part of living to maintain proper circadian rhythms, neurotransmitter levels for brain function, etc.
If you seize, you seize. Deal with it then (or afterwards). Don't let the fear of it ruin the times when you are not seizing IMO.
Here's some tips for insomnia (trouble falling asleep).
Georgiagirl88
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Hi there,
I absolutely understand the feeling of "afraid to fall asleep". I am new here and posted about trouble breathing/sleep etc. It is a terrible feeling. When I do not sleep...I go into bad cycles and I feel horrible for days. Plus more seizures! Sleep is so essential. For me I get these nocturnal seizures/spells. Sometimes as I am trying to fall asleep or they wake me up. I feel so shallow and faint. This week has been very hard. My suggestion would be to talk to your neuro or Drs. specializing in sleep or seizures. There has to be some help. I also understand the fear of meds to sleep. For me I feel so shallow and barely breathing and I think I will really get even worse with meds. Well last night I took a small amt. of valium after speaking to the Pharmacy and I slept better. Which also can help seizures I think. So try to talk to your Drs. Maybe try a relaxing bath before bed if someone is with you. (I know baths are a no-no for seizure people alone.) But warm baths do have a calming effect. Just know you aren't alone! I hope you feel better and catch some peaceful sleep!! I know how it feels!
Take care!
Michelle
Michelle
I absolutely understand the feeling of "afraid to fall asleep". I am new here and posted about trouble breathing/sleep etc. It is a terrible feeling. When I do not sleep...I go into bad cycles and I feel horrible for days. Plus more seizures! Sleep is so essential. For me I get these nocturnal seizures/spells. Sometimes as I am trying to fall asleep or they wake me up. I feel so shallow and faint. This week has been very hard. My suggestion would be to talk to your neuro or Drs. specializing in sleep or seizures. There has to be some help. I also understand the fear of meds to sleep. For me I feel so shallow and barely breathing and I think I will really get even worse with meds. Well last night I took a small amt. of valium after speaking to the Pharmacy and I slept better. Which also can help seizures I think. So try to talk to your Drs. Maybe try a relaxing bath before bed if someone is with you. (I know baths are a no-no for seizure people alone.) But warm baths do have a calming effect. Just know you aren't alone! I hope you feel better and catch some peaceful sleep!! I know how it feels!
Take care!
Michelle
Michelle
RanMan
Too Much Experience with Epilepsy
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halcyon,
Have you considered the possibility that you could have a form of Sleep Apnea?
This happens at night when there is a restriction in the airway and your brain isn't getting the oxygen that it requires.
This is somthing you may want to look into.
I have been diagnosed about a year ago with Chronic Obstructive Sleep Apnia.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I have recently purchased a CPAP machine which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.
Now maybe my Neurologist can reduce my meds.
I'm surprised that finally after 28 years I finally get an answer.
All this came about as a result of my wife's complaint to her Dr. about my snoring.
Randy
Have you considered the possibility that you could have a form of Sleep Apnea?
This happens at night when there is a restriction in the airway and your brain isn't getting the oxygen that it requires.
This is somthing you may want to look into.
I have been diagnosed about a year ago with Chronic Obstructive Sleep Apnia.
After my sleep disorders test the Dr. showed me the EEG from one night, I would stop breathing up to 50 times/hour and had 3 seizures and that I was waking up "post ictal" (moody and spaced out)
I have recently purchased a CPAP machine which provides constant air pressure and have noticed a vast improvement.
No more snoring (the whole family sleeps better now), more energy when I wake up, better REM sleep, improved memory (less short term memory loss), and most of all ~ NO MORE NIGHT SEIZURES.
Now maybe my Neurologist can reduce my meds.
I'm surprised that finally after 28 years I finally get an answer.
All this came about as a result of my wife's complaint to her Dr. about my snoring.
Randy
Georgiagirl88
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Hi Randy,
I just read your post and found it interesting. You and I have opposite stories. After yrs. of Drs. not listening to me or trying to tell me I was crazy, I finally was diagnosed with Ob. sleep apnea/restless leg syndrome. I've been on cpap for a few yrs. My sleep seizures however continue and come and go. I've very recently also been told after an abnormal eeg that I most likely have seizures also. Now being treated for them. From what I've read these 2 conditions can be connected. I am glad you are doing so well with your cpap and noticing an improvemnet!! That's great! For me...I did not notice a big change. : (( Anyways I thought I would say hello!
Michelle
I just read your post and found it interesting. You and I have opposite stories. After yrs. of Drs. not listening to me or trying to tell me I was crazy, I finally was diagnosed with Ob. sleep apnea/restless leg syndrome. I've been on cpap for a few yrs. My sleep seizures however continue and come and go. I've very recently also been told after an abnormal eeg that I most likely have seizures also. Now being treated for them. From what I've read these 2 conditions can be connected. I am glad you are doing so well with your cpap and noticing an improvemnet!! That's great! For me...I did not notice a big change. : (( Anyways I thought I would say hello!
Michelle
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Wow I am definitely going to talk to my neuro about that. I wake up about 6 times a night and I am horrible in the morning or I simply don't sleep and pace about..not a good cycle I'm in right now. The thing is I've been like this since I was about 7 (the not sleeping) so my neurologist thinks it is just something I've always dealt with, it was oly after the seizures and mono that I actually became scared of falling asleep. It never occurred to me that I might be having seizures in my sleep although it woud explain a LOT. I know that sleep is the main thing that keeps my seizures away. My mom hasn't had one in 32 years and she swears it is because she goes to bed at 9 pm no matter what (she is on no meds by the way). Thank you for the post.
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Here's more info on the sleep apnea - seizure connection
RanMan
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halcyon,
As well as helping reduce nocturnal seizures, if you read the liturature on Sleep Apnea, you'll see that conytrolling Sleep Apnea is good for other health problems as well, IT ALSO STATES THAT ON THE AVERAGE, IT CAN ADD 20 YEARS TO YOUR LIFE.
1) Prevention of snoring ~ this could be causing a restriction of oxygen in the airway.
This could be from something as simple as the way your head is positioned on the pillow or laying on your back.
2) Prevention of nocturnal seizures ~ which could allow you (through your Dr.) to reduce your dosage of meds.
3) Better blood circulation
4) Slower heart rate
5) More energy
6) No more "post ictal" feeling in the morning and feel more rested, and more.
Randy
As well as helping reduce nocturnal seizures, if you read the liturature on Sleep Apnea, you'll see that conytrolling Sleep Apnea is good for other health problems as well, IT ALSO STATES THAT ON THE AVERAGE, IT CAN ADD 20 YEARS TO YOUR LIFE.
1) Prevention of snoring ~ this could be causing a restriction of oxygen in the airway.
This could be from something as simple as the way your head is positioned on the pillow or laying on your back.
2) Prevention of nocturnal seizures ~ which could allow you (through your Dr.) to reduce your dosage of meds.
3) Better blood circulation
4) Slower heart rate
5) More energy
6) No more "post ictal" feeling in the morning and feel more rested, and more.
Randy
I have those feelings too. I try to talk it out with a lot of my family. I talk to my aunt's and uncle's about my fears of sleep. I talk to a few friends who are close to me about my fear of sleep. I have calmed down quite a bit. Most of my fear of sleeping had to do a lot with my anxiety. I was also diagnosed with high anxiety disorder. My body curls up and I shake out of fear at times from the pain, depression.
If you are in a loop. Ask if you can sleep over at a friend's place or talk a bit on a helpline. I've tried everything. In the end I felt so scared that I ended up going to the hospital emergency.
Just remember there are a lot of people that care about you, and you can talk to them. Don't be afraid to let your feelings loose. It'll really help.
If you are in a loop. Ask if you can sleep over at a friend's place or talk a bit on a helpline. I've tried everything. In the end I felt so scared that I ended up going to the hospital emergency.
Just remember there are a lot of people that care about you, and you can talk to them. Don't be afraid to let your feelings loose. It'll really help.
Eyes_herself
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I feel afraid to fall asleep as well. I have seizures in the process before falling asleep and waking up. You NEED to sleep though.
Finding peace with the effects of epilepsy is hard. Sometimes finding people who understand is even harder.
I'll pray for you. I wish you the best. We're always here.
Finding peace with the effects of epilepsy is hard. Sometimes finding people who understand is even harder.
I'll pray for you. I wish you the best. We're always here.