Nocturnal Grand Mals

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Patricia

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I was just offically diagnosed with E last week. All of my seizures have happened at night. Presently I am scared to fall asleep. How do I get past this fear?
 
First, recognize that the fear you're experiencing is very normal. Also, once your seizures are better controlled with medication, the fear will likely subside substantially.

In the meantime (assuming you live and/or sleep alone): is there family or a close friend you can stay with until your seizures are under better control? Trial with a "seizure alert" device to see if this detects your seizures may work in conjunction to staying with someone, so that they can come into your bedroom and monitor you during the seizure. No one likes to feel like a burden to others or feel like they are suddenly becoming dependent on others, but for your own piece of mind staying with someone may be the best thing to do until your seizures are less frequent.
 
If you can't stay with someone or have someone stay with you, consider asking a friend to have a nightly pre-bedtime phone chat with you, and maybe one in the morning too.

You might also try some soothing rituals to help you fall asleep, such as listening to favorite music or reading a pleasant story. Make sure your bed and bedroom are comfortable and conducive to good sleep -- avoid looking at your computer or screen devices, especially within an hour of your target bedtime. And as silly as it may sound, writing down positive affirmations at night before you sleep might help as well: "I will have a good night's sleep." "I will feel refreshed and happy when I wake up."

One more thing to try is progressive relaxation: While lying in bed you slowly tense and then relax your muscles, starting with your feet and toes and working your way up to your head and neck. You can read about it here: https://www.anxietybc.com/sites/default/files/MuscleRelaxation.pdf

Good luck. I hope you are able to get good seizure control and good sleep as well.
 
Patricia

As masterjen has said this fear is very normal, mind you that may not be much help to you. The thing about this fear is it overtakes your mind and then you suffer from a lack of sleep which means more seizures, however the good news is that at some stage we have all had this fear, if you are going to have a seizure, you will have a seizure and there is nothing you can do about it. It does not matter if they are nocturnal seizures or not and none of it is your fault, nor can you do anything about it, so the first thing you have to do is accept that you will at some time have a seizure and it does not matter that they are nocturnal, you will have a seizure. I have nocturnal seizures as well and there is nothing I can do about it so why should I lose a nights sleep over something I cannot control, you already know from your previous experiences of the seizures and you woke up after them, so tell yourself there is nothing you can do about it and its not your fault so when it happens it happens, that is the unfortunate part.

Nakamova has some very good suggestions as well.
 
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Hello Patricia,

I also have nocturnal seizures so I understand many of these fear systems. Although my day seizures are now under control with medications, the ones that slip through at night do cause some stress.

I have created a pleasant nightly routine so I can ease into sleep peacefully. Rituals like a warm bath, lavender body lotions.... I always keep my bedroom serene. Easy to do as I live alone and my pets are happy sleeping elsewhere. I turn off all distractions and never use my smartphone or laptop once I am in that sacred space. Reading helps me as long as it is not an intense book! Having a journal ritual is a nice thing, too.

I take a larger dose of anticonvulsants at night. In addition I take Clonazepam in the evening so it makes me very tired and has been good for seizure control. I put on white noise ( I like the rainfall setting on my machine) as I turn off the lights.

I also have a prescription for Clonzepam troches which are specially made at a Compounding Pharmacy. I use them if I ever feel a seizure coming on or in its aftermath. I always keep them with me during the day & by my bedside in case of a nocturnal event.

Meditation helps me. I use a simple Buddhist mantra or go over the things I am grateful for in life as I start to ease into sleep.

You have my compassion. I remember how it felt to be diagnosed ( for me in 2003) and living with unknowns. Please stay safe.
 
I have nocturnal seizures as well. I've woken up where I couldn't speak for 30 minutes yet knew what I wanted to say. I get by the fear by telling myself that the seizure will pass there isn't anything that can be done so you roll with it which did work for me. The worst nocturnal grand mal that I've ever had was in a hospital so the neurologists could pin point where the seizures came from. I had it around 2 in the morning and it just about killed me.
 
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