8 replies to this topic

[drago]

When I did the sleep study, I was fine, despite being thoroughly draped in glue, and goo, and wires and such. During the day, though, with the "nap test," I thought it was torture. If I had secrets to spill -- and they'd let me sleep for it -- I'd have spilled them all!

Several times my doctor has suggested napping during the day. Before I was diagnosed with narcolepsy, I did take naps, a lot... and with the same results: Naps left me miserable.

Excluding times of illness, when my unhappiness would be better attributed to the flu or whatever I had, napping has always made a bump in my day. After I wake up from a nap, I feel cold and uncomfortable and groggy. Even hours after I wake up from a nap - even I am out and about doing things - I still feel cold(er) than normal. My patience is lower, too. For the first hour or two hours after I wake up from said nap, I am a pretty unhappy camper, if not downright miserable person to be around. Every little thing offends me to the end of my rope -- and this turns into a cycle of anger and bitterness, where I consider every little thing annoying, and thus everyone is out to get me and no one cares about me, etc.

It's the worst feeling in the world for me, especially because it tends to poison the rest of my day, too. A part of me knows that my feelings are unjustified and are there just because I am tired, but I neither seem to be able to let those feelings go in the moment nor do I seem to be able to do anything to STOP feeling them when I wake up. In a sense, taking a nap (unless I am ill) is basically guaranteeing me a terrible end to my day.

The psychological issue is not a small one for me, here -- it seems that I become a different person altogether. When I was doing the "nap test" in the labs, the nurse became my arch-nemesis. In the past, when I had slept instead of keeping appointments or dates with friends, this same type of thinking projected onto them -- that they're a TERRIBLE person for waking ME up, with no respect for the fact that I NEED TO SLEEP -- who cares about our appointment?! This is the very OPPOSITE of the person I have worked on being all my life, so to literally 'wake up' to it is frightening.

However, I am also concerned by the lingering physiological issue. Being cold, feeling cold... like my body temperature is just off.

Needless to say, except when I am ill, I AVOID NAPS like cavities!

It seems so strange to me, though, that every doctor that I speak to about my narcolepsy immediately recommends taking naps throughout the day. When I tell them that naps make me "cold and miserable," they don't seem to get the real depth of the issue. They think I mean directly after -- one seemed to think that I was exaggerating when I said hours. Another said, "Well, you're not suppose to nap for more than 30 minutes. You know that, right?" I replied, "Yes, I napped for 25 minutes. One alarm goes off 25 minutes later, and a second backup alarm goes off 5 minutes later. I don't sleep more than 30 minutes in a nap..." (Well, not "for narcolepsy" -- before I knew I had it, I took longer naps all the time. Again, same results...)

Oddly, this issue doesn't come up in the mornings. It can be difficult for me to wake up, which is why I have a regimen of 4 alarms (1 of which is a deaf alarm clock) but I don't experience the emotional turmoil nor the physical coldness that I do when I nap during the day. The worst of it is the crusty-eyed feeling I have...

Trouble is, if I bring this up to my neurologist, she's going to want to send me off to a psychologist, who might well send me back to the neurologist, all to tell me that--nothing's wrong! that's just your body! Or something like that. I'm worried if I go to the doctor it will just plain cost too much for me to find out that... well, nothing's "wrong" or there's nothing to be done.

Has anyone else had similar issues? How did you resolve them?

drago

[Saraiah]

Hey Drago,

I get all screwed up by naps if they're too short, and I get incredibly cold right as I'm falling asleep, but that doesn't help you here. The thing that I really want to say is that the body's regulation of temperature is screwed up for a lot of people with narcolepsy, and I wonder if that's particularly true for you, and maybe that naps really screw thermoregulation up for you? Have you ever taken your temperature before and right after naps?

There were two little studies done in the Netherlands that looked at thermoregulation problems in people with narcolepsy. I read them and have been wondering how to implement what they did for myself. And I haven't figured that out yet, but I did find out that it's possible to buy a heated pad that one sleeps on, and also heated vests and jackets. I'm wondering, if for you the issue is that your body temperature goes way too low during the beginning of a sleep period and doesn't recover till after you've slept for hours, what would it be like if you had a warm pad to nap on (and maybe an electric blanket on top of you), and then a heated jacket to wear after the nap? And maybe warm to hot food and tea or whatever before and after the nap to help coax your body temp back up?

Saraiah

[Marcia.was.here]

I hear the coldness is a very common problem with people with N. I think it has to do with Metabolism.

There are heated mattress pads you can get, much like the ones used on tables during massage therapy. Heated blankets are nice too, but since heat rises, I prefer the mattress pads. If you turn it on ten minutes before you crawl in bed... they warm up your regular blankets for you!

[Marietta]

I get this as well, it always happens after I take a nap, although I take longer naps... like 1 to 2 hours because waking me up for that doesn't make me miserable, it makes me more on the violent side.
But after I wake up from a nap I'm real snippy to everyone and sort of out-of-it for the next few hours.

I get cold sometimes as well, I usually just curl up with my leg pillow, stuffed bear, and bedspread into a ball.
But I've been doing that since childhood.

[drago]

I hear the coldness is a very common problem with people with N. I think it has to do with Metabolism.

There are heated mattress pads you can get, much like the ones used on tables during massage therapy. Heated blankets are nice too, but since heat rises, I prefer the mattress pads. If you turn it on ten minutes before you crawl in bed... they warm up your regular blankets for you!

Hi Marcia:

Thanks everyone for your replies!

The thing is - I'm not cold DURING my sleeping. Actually, in order for me to be comfortable at night (and when I nap) enough to fall asleep, I have to make sure the room isn't too hot. In the winter, I turn my heat down at night usually just a few degrees - otherwise, if it is too hot, I might wake up sweaty and uncomfortable. But winter or summer, so long as the room isn't too hot, I can sleep or nap just fine under the covers.

The cold issue begins when I get up. I expect the room temperature to be at least a little cooler than my blankets/covers, which it usually is. But it's like my body temperature never adjusts or something; my body feels cold the whole rest of the day after I nap. (Oddly, this usually is not a problem when I get up in the morning.) Wearing sweaters, trying to stretch/move around... doesn't matter, I'm still cold...

drago

[Saraiah]

Drago -

I use a heated vest/jacket (wired like an electric blanket, but looks like a normal fleece vest or jacket) like the ones here: http://www.activheat...tedapparel.htm. I'm cold a lot of the time just because my core body temp runs around 97.1 degrees F, and find the battery-powered clothing helpful.

[ZombiePrincess]

Dear Drago,

I know this may sound kinda strange but I'm so excited to see this post! I have always thought I was the only person out here w/N that hates naps! I think I could have actually written this post myself! Before N...I took short naps, long naps, just naps all day and no relief! Now that I've been diagnosed my doctor suggested the scheduled naps thing even after I explained that I've always been a napper but they never seem to help! In fact, they seem to make me worse for hours afterwards! Part of me actually doubts I have N b/c I've never seen anyone else w/it that didn't get relief from naps. Either way, I'm relieved to hear I'm not alone! And even on the cold issues. I never actually put the two together but when I read your post it was like a light bulb literally went off above my head! I'm curious now that it seems there are documented thermoregulation problems w/people w/N. I know that I don't usually notice if I'm cold or hot or whatever until I just can't bare it anymore. I cant count how many times I will be somewhere feeling fine and dandy (well, you know what I mean) but all the sudden its like I'm in a snow storm because I'll realize I'm miserably cold and basically shivering. I never really thought about this being related to N but now that you bring it up I'm wondering if it isn't tied into some kind of blood circulation issues from laying down and/or being still for a good period of time? I have always had really bad circulation so I guess I always chalked it up to that but maybe there is a link to laying still for a N nap?

[Perplexed]

If I "nap", there is no way 30 minutes is enough. Heaven forbid anyone try and wake me up, I get super grumpy and my mood doesn't improve until I get more sleep. The only time I notice issues with getting too cold and not being able to warm up is in the winter...I have to sit in the hot tub for a while to get the chill out of my bones. Other than that, I have noticed that I break into a sweat at night quite often, wake up soaking wet. I've noticed I can't handle heat very well at all..this summer has been miserable.

[TiredAgain]

I also don't get any relief from naps. I still lay down everyday, but I don't always sleep. I may doze on and off for an hour or so and then I feel terrible for a few hours afterwards. I always question whether I have N even though I have been tested. I sleep terrible all of the time, I go into a deep sleep like 4am. It sounds like everyone that has N sleeps all of the time and sleeps deep.

If I let myself I could stay in bed all day and still not feel refreshed when I got up and I do feel tired most of the day, that is why I got tested in the first place. But I don't have any C symtoms and my tiredness has good and bad days. I'm on 30mg of Adderal XR, but it does seem to help much at all.