Now I lay me down to sleep… coping with narcolepsy related sleep issues
Here is the text that I used to create the video. It is not 100% in sync with the video. The FaceBook version of the video is on the Positively Narcolepsy page HERE and has closed captioning. The YouTube version of the video is below:
I’m not a doctor or a mental health professional but I’ve had narcolepsy since I was 11, so 38 years now. That’s a long time lol, I’ve learned a lot of coping strategies in those decades and wanted to make a video about my perspective on how I cope with them. As with anything I put out here on social media you have to take my experience and put it through the YOU filter, because we may all have the same diagnosis but we are all very different.
OK so let’s dig in. I’m going to talk about Nightmares, Hallucinations, Sleep Paralysis and Insomnia. I’ll hold up a paper each time so if you want to skip everything and go to Insomnia, you can forward the video til you see that sheet or go to the text version on the blog.
The first thing I want to talk about is, giving up your fear of death. This is at the core of my coping strategy for everything that happens in the narcolepsy realm. In many ways, it’s like you live two lives. Your waking life and your sleeping life. That’s how it kind of is for most people but in the narcolepsy realm you get crossovers… like when The Flash went on Super Girl… the characters are the same but they may be out of place or out of time. Conversations… did they happen in reality? Or, in the narcolepsy realm?
What I finally discovered, is that while I can most certainly die in the real world, I cannot die in the narcolepsy realm. I just wake up. Usually lol. I know this because one night I was having this dream, I had spiderman’s abilities and was loving it, then this giant Ogre showed up and I’m not quite used to my web slinging abilities, I mean – I played the Xbox game but that was 12 years ago lol, so all I really feel confident doing is hopping. So I’m hopping along from rooftop to rooftop and the darn Ogre just kept up with me! How was he doing that? This is exhausting. I’m so tired. Finally, I gave up – I turned to the Ogre and said, “Look! I have to work in the morning. If you’re going to eat me, just eat me because I’m spent.” The dream dissolved.
Something inside of me clicked that day. I realized that even though all of these things were scary as all get out… none of them could really kill me. I had been brainwashed by Freddie Krueger into thinking my dreams could kill me. After that I became more and more bold. Instead of running from the bad guys, I’m charging at them. And winning. Facing that fear is something that you have to consciously decide to do. Once you try it you’ll see if it makes a difference for you. Nothing ventured, nothing gained.
That type of coping only works if you’re aware you’re dreaming. I may do another video later about lucid dreaming but if you don’t know anything about it, give it a google. Fascinating stuff. I can literally do anything in a dream once I’m aware it’s a dream.
OK, so now we have the mindset that we’re not going to die. That our brain is just some sort of horror show junkie that likes to feed us all these weird dreams. We can do what I like to call, rationalizing with your tired brain. This leads us to the first topic: Nightmares
For me, once I’m aware it’s a dream, I just end it and go straight to my soothing techniques. The scary dreams don’t bother me much at all but I still dream about my daughter who disowned me and that will have me waking up bawling. Here are my soothing tips:
- Ground yourself in reality upon waking. Look at your stuff, look at your room, your hands, realize you’re awake now and it was just a dream. You’re safe.
- Have a “sign” on your wall or a comfort item. “It was just a dream.” I kept that on a sign next to my bed for a long time, it helped. Significant other, stuffed animals, pillows, pets… cuddle what’s available and comfort yourself like you would a child who’s had a nightmare. We all can kind of revert back to children, especially if we’re sleepy. “There, there dear, none of it was real. You’re safe now.”
- Speaking to someone. Whether it’s in person, on the phone or even just on social media where someone is always awake in the middle of the night. Talk about the dream or just talk about something else. The sooner you get it out of your head, the sooner you can get on with life.
- Pull an Elsa and let it go. This is tough for many of us because our dreams can be so very very horrendous at times. Terrifying even. But, you need to realize it’s just like watching a bad virtual reality game. None of it was real. It may have looked real and felt real but it wasn’t. So, put your goggles down and let it go!
- Play a guided meditation or some instrumental music as you go back to sleep, preferably in headphones. It will help you shake off the remnants of the dream and, for me, it keeps me from slipping back into the same chaos I just saved myself from.
If you can go lucid, work on developing a “tell.” I can hover and even fly in my dreams so if I’m not sure I’m awake, I kick my leg up and if I float, I know I’m dreaming. This is especially helpful if you dream the kind of dreams that it’s hard to tell if they’re dreams or real.
I really struggled with these for most of my life – visual, auditory and olfactory hallucinations. Then I used a coping technique of just ignoring them. If hallucinations are something you have regularly, you’ve just got to accept that they’re a thing and find a work around. I’ve had some really frightening ones and fortunately I had a great black lab named Bob for 17 years RIP. I knew if Bob wasn’t barking, none of it was real.
It can be challenging at first, especially when you hear a gang of guys walk into your room and you’re in full on sleep paralysis and instantly panic. But, I cover my eyes when I’m sleeping, so I know if I’m looking at 3 guys in my house, my bulldog is still on his bed and my husband is still sleeping, I have faith that I’ve slipped into the narcolepsy realm. So I just lay there, until it passes, knowing my dog would be barking at them or at least be out of bed. This also leans on the giving up your fear of death. I literally get so tired, I really don’t care if those guys kill me or not lol. Some soothing tips:
- Try to change your perspective away from being afraid to ignoring or curiosity. Ignoring works best for me.
- Focus on being aware that it’s not real, and that you’re safe.
- You have to give yourself permission to not be afraid. Coping with the fear will help you avoid the symptoms that fear brings (crash). It will also help your brain overcome the hallucination faster because you’re not flooding it with cortisol (which activates fight or flight) and exhausting yourself.
This was absolutely terrifying when I was a teenager. It combined with those dreams that felt real. I would feel myself coming up off the bed, like levitating. A freight train noise in my ears and the room had turned black. I really felt if I didn’t wake myself up, I was going to die, be abducted by aliens or have my soul stolen by some demon. I would often have it in the car while my mom was driving. Eyes open, not cataplexy, I would just realize that I couldn’t move my foot. I found it funny. I kept telling my foot to move and it was just stuck. So, I just sat there, trying every now and again to move my toe, eventually it would break and I would have full mobility again. Sleep paralysis while awake. When it happened in bed, it never bothered me unless it was accompanied by a hallucination.
It’s been over 3 decades now of dealing with it on a regular basis, I just came to accept that it is what it is and it’s part of who I am now. I got there with the following coping techniques:
- Reassure yourself. This isn’t your first rodeo. As long as you’re not in actual danger, like the house is on fire for real, reassure yourself that you’re safe and try to relax.
- Don’t struggle. Trying to scream and kick and force yourself out of it that way is just going to frustrate you more. Relax. Breathe. Ever 30 seconds or so try to move your finger, or your toe. Don’t even shoot for the whole body lol, just a finger. Soon as you can move the finger, you know you’re on your way to it being over.
- Rationalize with your brain. You may or may not be “awake,” with us it’s so hard to tell. So, until you can move, just tell yourself none of it is real. Going back to the giving up my fear of death… I’m not gonna jump in front of a bus but if there’s one in my bedroom, I will… it’ll wake me up!
The key to dealing with this one is primarily to trust in the fact that you’re safe, even though there’s a bus in your bedroom.
And when you sleep eat, it’s insomnomnomnia lol. Yes! Narcolepsy and insomnia co-exist. So many people have their doctors tell them they can’t have narcolepsy because they have insomnia. Ridiculous, a simple google search would show them otherwise, they don’t even look! Baffling lol.
You need to keep trying different things to find a way to cope with this. So tweak, journal about what you’re trying, tweak some more. Journaling is important because it’s easy to forget when you started something or whether or not it helped. I don’t remember diddly about Monday and it’s only Thursday as I write this. Insomnia is something you may never overcome. Yes, that sucks, but if meds don’t work for you to get to sleep, the only thing left is trying things to see if something eases it, or at the very least, gives your brain and body more rest. Therefore, my coping tips for insomnia are:
- If both your mind and body are tired, you must rest, even if you don’t think you’ll sleep.
- If your body is tired but your brain is fairly active, listen to some guided meditations to try and turn your brain off. If you’re not into guided meditations, think of it as boring your brain to sleep
- If your body is awake and your brain is awake, get up and go get something done. Nothing like folding laundry at 3 am to make you want to go back to bed and rest.
- Narcolepsy is a segmented sleep disorder. So it’s very easy to find yourself wide awake in the middle of the night. Accept this. Try some new techniques to try and get more rest, even if they seem super weird.
- Cover your eyes and use headphones.
- Be mindful of being too warm or too cold. They say people sleep better in a cold room.
- Try strict sleep hygiene and see if it helps. At the very least try going to bed the same time and getting up the same time.
There’s always something you can be trying. I want to plug a few things here, I’ll put links in the comments of the videos.
Going Beyond Coping
I do all this in my spare time and without compensation. If you’d like to help me keep putting out this kind of content, please read and share the posts, purchase some recommended products from Amazon via my Recommended products page, or simply make a donation on my Support This Site page. I really love doing this and I really love eating so yeah, every bit helps lol. I also am doing fee based one-on-one coping consulting, visit my Contact page for more info: http://goingbeyondcoping.com/contact/
Positively Narcolepsy Group
If you’re looking to talk about narcolepsy in a positive environment, to find new coping skills or just hang out somewhere where everyone is tired and we all have a decent sense of humor, check out the Positively Narcolepsy group on Facebook. https://www.facebook.com/groups/PositivelyNarcolepsyGroup
If you’re looking to try diet to improve your symptoms, search Madcap Narcolepsy on Facebook, there’s also a website at madcapnarcolepsy.com. Many people with narcolepsy are using a modified version of the ketogenic diet to get more wakefulness and Gina Dennis works tirelessly, for free, to help them. https://www.facebook.com/groups/593963047382442/
If you’re interested in trying l’citrullene malate, an amino acid that is helping a lot of people with narcolepsy get more wakefulness, and some even reduce or get off meds, there’s a group called the L-CM project, search for it on Facebook. Brian has become quite the encyclopedia of info on it. https://www.facebook.com/groups/1763120317275697/
Also on Facebook, the group Narcolepsy Naturally is full of people finding a benefit to their symptoms through exercise. David also offers a pay-course. https://www.facebook.com/groups/NARCN/