Beauty OR The Beast? Napping with Narcolepsy

by julie on October 3, 2013

narcolepsy nap julie flygare beauty or the beast

I nap once or twice (or three times) every day. While napping, I may look like Sleeping Beauty, but waking up – I’m never quite sure who I’ll be – a kind calm beauty OR an angry beast.

The trouble with napping:

For me, napping is not pleasant. My naps are high-speed rollercoaster rides of consciousness – my mind races through a dark twisted tunnel and adrenaline rushes through my chest, leaving me wanting to throw up. I can’t prove this, but I believe my brain must go through this crazed REM/dream sleep multiple times a day. I hear things, see things and feel things that don’t exist, although – in my nap, they DO exist.

How long do I nap for? 

Good question. Waking up, I have no idea how long I’ve slept for. Sometimes, I get up annoyed that I wasn’t able to sleep at all. Then my boyfriend informs me I’ve been out cold for an hour with my mouth gaping open (a sure sign that I was in fact sleeping, without the beauty part).

Other times, I’m certain that I’ve slept the whole day away. An incredible sense of guilt hits me hard, and I scurry to get back to work, thinking “I will never make up my lost time.” Then, I realize only 15 minutes passed. Really? 

Emerging from my lair:

After napping in my apartment bedroom, I crack open the door and look out at my boyfriend working at his desk in the living room. Maybe I just stare, or groan, or say something nonsensical, or give him a bad look. I’m not sure. My boyfriend says this is what happens, so I believe him, but I have only a vague recollection of this. How can I be standing and walking yet totally unsure of who I am and where I am? What city? And who is that guy in the living room? I can’t explain how delayed and disorienting this transition is, but eventually I piece it together.

Hear me ROAR:

I HATE to admit this, but sometimes I wake up an angry beast.  I’m negative, hot-headed and mean-spirited. I focus in on the very first thing I can find “wrong” and attack it ferociously. Maybe it’s the temperature, maybe it’s the one dirty dish in the sink, maybe it’s my narcolepsy, maybe it’s something my boyfriend did or didn’t do. Who knows. Within 30 minutes, my feelings shift and my anger melts away entirely. I’m utterly ashamed of the beast’s thoughts and actions. 

Many of my biggest fights with roommates, family members and friends came right after naps. I’m just realizing how much my post-nap beast has been hurting me.

Strategies for Taming the beast:

1. 20 minute limit: In last month’s #Nchat, I learned that other PWNs experience poor mood regulation around naps. Community members recommended limiting nap time to 20 minutes to decrease mood issues. I have tried this once and it seemed to work. I will keep trying.

2. 30 minutes of silence: If I’m feeling like a beast, I vow not to speak to my boyfriend at all for 30 minutes post-nap. This usually gives me enough time to reclaim my sanity. 

3. Be honest: Before napping yesterday, I approached my boyfriend, hugged him and admitted that I needed to nap but I was scared of napping, for fear I may wake up an angry beast. I think this simple confessional went a long way. 

In closing:

Have you experienced something similar? Any coping strategies you’ve found useful?

Thank you for listening – this was a hard but important post to write – narcolepsy isn’t always a fairytale ending, but I hope to continue to get more in touch with myself and my disorder to become the best me I can be!

{ 17 comments… read them below or add one }

Nichole October 3, 2013 at 6:46 am

Thank you for this post!
Even though they’re usually needed, I too find daytime naps to be disorienting and not such a great experience. My roommate always says I look angry after sleeping in the day and I always thought it was just residual annoyance at my recent diagnosis. It’s nice to know that this grumpiness is experienced by other people with narcolepsy.

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Lars Ickenroth October 3, 2013 at 6:55 am

Very recognizable. Especially the guilt part. Not getting enough done in a day, or having no energy to do so really bothers me. Especially if it is accompanied by many naps or long naps. The 15-20 min rule works very well. But sometimes I do feel I need more. I think there’s something in our brain that just ticks off a box saying ‘waking up in the right/wrong stage of sleep’. The sleep itself doesn’t affect me very much, it’s the moods and the constant rumination of a lazy/sleepy mind that does. I feel I’m less sociable by the day, though people can’t see it.

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Bridgette October 3, 2013 at 8:00 am

Julie,

Since I usually nap at work, I had to find a way to limit my nap time from the get go. It sounds silly, but a kitchen timer actually works perfectly to help time naps. I bought a cheap kitchen timer to work, and I use it to keep my naps within 30 minutes without having to fuss with alarms when I’m tired.

I also find that simple breathing exercises help with grumpiness. Mindful breathing before AND after naps really helps me ground myself and keep me from letting tiredness dictate my actions. Doing something constructive immediately after the nap also helps me have something to concentrate my energies on, instead of letting my mind wander, or get wrapped up in what someone else is doing (or not doing, as is sometimes the case).

Hope this helps, and thanks for sharing!

Bridgette

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Samantha Vandeberg October 3, 2013 at 12:12 pm

LOVE this idea of mindful breathing, Bridgette!

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Katie October 3, 2013 at 11:18 am

Wow – so familiar! Thanks for sharing Julie. I also tend to be the beast right before a much needed nap. I’m not sure if others have experienced this, but I find if I lie down flat I sleep for an hour and awake as the beast. If I don’t sleep fully flat, but rather 1/2 upright – such as propped up pillows or in a halfway reclined seat of my car (while parked) – I don’t go through as much of a rollercoaster ride and my body tends to naturally wake up after 20 min. I usually set my alarm just in case, though.

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TV September 17, 2014 at 2:13 am

I’ve noticed differences with laying flat vs laying propped up. Good to know others have experienced this!

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Audrey October 3, 2013 at 11:39 am

This is actually a major topic in my Narcolepsy Institute support group. One older woman comes with her sister who’s become quite a Narcolepsy activist herself and loves our group. Recently the sister has brought this up a lot. She said she used to think her narcoleptic sis hated her, because of these rages. Then, she started to see the pattern of mean behaviors from her generally very sweet sister as following naps. I will share this post with them when I see them for sure.

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Mike S C October 3, 2013 at 11:51 am

Its hard to know wether or not N contributes to my mood when i wake up after a nap..I am often grumpy after, which is odd as i normally feel quite refreshed but i suppose i have always thought that is was normal to wake up in a bad mood.. I get most frustrated when I have slept longer than normal especially when im at home. Usually my partner gets the short end of the stick here, as i tend to blame her for not waking me……….
Julie…I do love reading your blogs and other literature.. I dont really have anyone to talk to about my N… so you really help on the bad days…. Thanks…

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Samantha Vandeberg October 3, 2013 at 11:53 am

Oh, I needed to hear this so much. There have been so many tears and temporary wounds inflicted in our house due to waking from sleep demonically possessed. For me, this is my most hated aspect of Narcolepsy. Not the EDS, not the Cataplexy, not struggling to sound intelligent when my brain is completely fogged… those things frustrate me, but they don’t inflict any pain on someone I love. The reality that something within me can rise with such a mean spirit, say truly awful things and then only vaguely remember what I’ve said that caused someone pain… it stinks. I always feel like the bottom of the barrel scum. Guilty and yet unsure how to apologize because I’m not entirely sure what happened. Thank you so much for sharing this. Narcolepsy is black and white and every shade of grey. Even in our community, I think we have a tendency to focus on the good aspects or what ails the individual, but admitting the darker, nastier aspects that affect the ones we love is difficult. Big hugs and lots of love from Virginia. <3

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Nicole October 3, 2013 at 2:43 pm

GREAT post!! I’m definitely a beast when I need a nap and lots of times I wake a beast. Give me about 15 minutes and usually back to me. (Unless of course someone continues to push buttons). The 20 minute max nap helps a lot. I like the honesty tip. I’m going to try it. Thanks Julie.

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Katherine October 3, 2013 at 2:48 pm

I can relate. Naps don’t seem to necessarily make me feel rested or new and improved, but I must take them. My neurologist told me not to set an alarm, so I sleep for 1 to 2 1/2 hours.

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Lucy October 3, 2013 at 9:41 pm

I have never had a restful sleep, nor have I ever woken up NOT as angry as a bear.

… and in my case, you can forget about naps entirely.

If I go down for a nap … I’ll wake-up hours later (like, 12 hours later!). … and forget about the alarms too, I have 27 of them in my bedroom, and regularly sleep through all of them.

By definition, I get stuck in REM sleep from 2-5 mins of closing my eyes, until … well, for the DURATION. Is it any wonder I wake-up like a bear?! So, I try not to feel guilty about it. But of course I do!

Imagine you wake-up a member of the non-N society right in the middle of THEIR REM sleep. I can guarantee you they’d act like an angry bear too.

Don’t sweat it. There’s nothing you can do about it.

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Jamie Brantner October 4, 2013 at 1:38 am

If I take my nap on the couch I usually wake up in a decent mood. If I take a nap in the bedroom and I get woken up before I want to, beware. But, my husband doesn’t like me sleeping on the couch. Not just me, anyone really. I’ve tried to explain that if I go into the bedroom for a nap I’m going to be out for hours, but if I sleep on the couch I can get 20 minutes and be ok. My brain has the crazy idea that the bed is for real sleeping, and the couch is for napping. Until it’s the middle of the night of course. Also, because of the sleep paralysis my family has the idea that I can sleep through anything so no matter where I am sleeping they are not always considerate, which generally results in my waking up and exploding until I’ve been upright for at least 30 minutes.

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Stacia October 4, 2013 at 1:56 am

I also get really cranky right after napping. I also am very irritable after waking up, but more so when I have pushed through my sleepiness and haven’t taken a nap at all. That’s when I’m the worse “beast” of all. I always advise my family that when I’m really sleepy to please give me some space, try not to hold any deep conversations with me, and give me at least 15 minutes after I wake up before talking to me. The not talking to me the first 15 minutes after waking up really helps a lot as it gives my brain some time to “figure out what’s going on” before I have to start processing new information from others. So far, these tips have helped keep my “beast” tamed after my naps.

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Mike Duffer October 7, 2013 at 12:23 pm

I have had my best naps on the kitchen floor. (willfully and unwillingly) lol!
If I nap in the bed room, it lasts for hours and if I surface during REM I am irritated due to the fact that my body is still in sleep mode and my brain hasn’t finished what it needs to do. These are totally random. Structured naps never seem to help. So for me, I have to nap when suffering the sleep attack for my brain to reset to get any relief from the foggy world of dream. Structured or planned naps sometimes make me worse than I was before the nap.
If I am to get a few hours of productivity done, I take my meds then kick back in my easy chair and BAM! I’m out until the Meds absorb and I actually wake up feeling like I did before Narcolepsy shrouded my world. This only gives me an hour or two then it is back to the haze of Dream intrusions and groggy thinking and C attacks. I have found the older I get, (I was 23 when Diagnosed, I am 50 now) the less I am able to cope with all of it…Narcolepsy w/cataplexy and the treatment side effects. I also am seeing more and more memory problems and more occasions of getting reality mixed up with dream. So I guess you can say that the waking up benign or beastly is a constant among us.

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The Dreamer October 9, 2013 at 10:25 pm

Napping is also a huge ordeal when you have sleep apnea….have to use my AutoCPAP if its a planned nap.

If its unplanned….it depends on what position I was in when I had the nap…

The strong desire to nap while sitting in front of my computer at work were usually surprisingly refreshing, when allowed to finally happen…so I started letting them happen…to eventually they just happened without checking with me first.

It was complaining that I had lost control, that finally led to my first sleep study (that and my BP was through the roof and I had inexplicably gained 40lbs in a couple of months….)

Naps in other positions have been terrifying….would have bizarre HH. Though I also had bad onset HH for most of the naps in my MSLT.

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Nicole Monte December 29, 2015 at 10:07 pm

I go through the exact same things you go through when I wake up only I am unable to take real naps because I have four children ages 14,12,8, and 2. So when I fall asleep its uncontrollably for short periods of time. Sometimes I will go for weeks at a time where I am falling asleep every 15-20 min and nothing I do keeps me awake. I am usually awoken by someone and when ever I get awoke I get this horrible startled feeling. If my fiancé is home though he will just let me be and sleep.
My biggest problem is my neurologist is convinced I have narcolepsy which is causing issues for me because I am severely epileptic, I have seizures near daily. My neurologist is convinced of the narcolepsy and has even witnessed it first hand but is unable to prescribe me any medication for because my insurance (I am on state aid so I have state health insurance ) won’t cover it without an official diagnosis by having a sleep study done. Yet they keep denying me to have the sleep study done!!
So I am stuck and suffering. I feel like my life is just slipping away from me and I am missing so much of my children’s lives.

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