20 replies to this topic

[sleepzone]

I am always very cold. Does this have anything to do with Narcolepsy?

[Saraiah]

There's a documented thermoregulation problem which tends to happen in people with narcolepsy with cataplexy (and maybe in N without cataplexy and idiopathic hypersomnia[IH] too, but who knows, since there's very little research on the latter two). PWN with cataplexy tend to have a low core (torso) body temperature, and high extremity (lower arms and hands, and lower legs and feet) temperatures, when compared to healthy people. I'm cold a lot as well, and bought a vest wired like an electric blanket which runs on a battery. Expensive, but very nice to wear.

I've asked quite a number of PWN and people with IH if they get cold when trying to sleep, as I do. I've found only two other people who, like me, experience intense chills and even shivering right before they fall asleep, and on bad nights throughout very restless sleep. If you also tend to be cold when trying to sleep, a heated mattress pad can help.

[Lisa Kato]

I am always very cold. Does this have anything to do with Narcolepsy?

Dunnoh, but my feet are always freezing and my blood pressure runs on the low side of normal.

[dejavu]

I have Raynaud's Syndrome. Vascular surgeons test for it. It's cold weather test. My hand, feet and ears have circulation problems in the cold. Plus, I'm colder in the winter than others.

[Marcia.was.here]

I am always cold. my body temp has always been lower than that of other people. I have a millions blankest on my bed even in the summer and it has been years since I wore shorts or anything not warm. I have been told this is because my metabolism is off due to my Narcolepsy. I seem to remember talking to someone at the conference that said it was kinda normal for us.

[petitelinguiste]

My body temperature has been 96.7ºF my whole life. I also have Raynaud's (which is a form of vasculitis often described as an overreaction to cold temperatures, but stress can provoke it, too). I tend to become cold more easily than others, but I'd say I prefer it that way. I'm more concerned by how uncomfortable I feel if my surroundings are too warm... not to mention, heat puts me to sleep!

[wisher]

I am always cold, too, and have a low tolerance for cold. It is not uncommon to see me in my office (and I have worked at various different offices as a contractor) swathed in sweaters and coats, replete with hoods and gloves and everything.

I also find that I get especially cold when I am about to fall asleep, so it's one of my earliest warning signs that a sleep attack is imminent. This also means that when I get very cold, I get very sleepy, which can be difficult in my work environment which is usually freezing!

[lyndawn2]

I've always been cold, too. My husband and I fight over whether it is hot or cold. But, I usually sweat at night while I'm sleeping. At least I did almost every night when on the xyrem.

For those with actual low body temp (which I have also), check out info on Wilson's temperature disorder. The meds do help with a lot of different symtoms and they are all natural. Still, make sure they won't interfere with N meds.

LYnette

[angeline]

I get cold easily. I always have gotten cold since I was a child. My hands and feet get cold even in the summer. Sometimes my hands & feet turn blue or bright red when I am cold. I always take a light jacket or sweater wherever I go just in case I get cold.

[whitney037]

I'm always freezing. I have to have a sweatshirt in my car for when we go places in case I think it's cold. If I'm too cold, then there's no way I can fight sleep off when it comes for me.

[sueno]

Always cold here too.

[sleepyk]

I've always been cold, too. My husband and I fight over whether it is hot or cold. But, I usually sweat at night while I'm sleeping. At least I did almost every night when on the xyrem.

For those with actual low body temp (which I have also), check out info on Wilson's temperature disorder. The meds do help with a lot of different symtoms and they are all natural. Still, make sure they won't interfere with N meds.

LYnette

This is interesting. I have had a low temp my whole life. In fact, Mom could always tell when I was getting sick because my temp. would be "normal"! My feet are always cold, and I sleep with 3 blankets. Winters suck, especially in Ohio!

[narcose.]

Strangely enough, I find that I'm normally really hot. Like right now. My feet, though, are usually freezing and often very red or even purple...go figure

[Sleepingcrow]

Humidity or being overtired lowers my core temp significantly, but if I know what the weather is going to be, I can prepare and make sure my spine is not overly warm, but comfortable, all the way up to my skull. Over tiredness is prevented by going to bed when I'm tired right from the get go.

[AYCV]

I am always very cold. Does this have anything to do with Narcolepsy?

I'm always cold.....ever since I could remember. I'm not sure if it has anything to do with N.

[songbird]

I used to be pretty hot-natured as kid, but once I hit adolescence, I switched. I live in Nashville, of all places, and I've been wearing the same hoodie over my work clothes almost every day since September 1st. I joke that I'm cold-blooded. Sit me on the back porch under a 98º sun, and I'll bake like a lizard. When I get cold, it's like I stop functioning. I can't think clearly, I start shivering, and I just...shut down. Makes me sleepy as hell.

In the colder months, I'll wear a head scarf, since I can't really wear a cap or a beanie to work or anything. It helps a lot!

My temp has also always been in the mid 96º's. Kinda weird for a big girl to be cold! We're supposed to be personal heaters, lol!

[818sis]

I have not been diagnosed, but I have always been 2 things: cold & tired.

I had my sleep study yesterday. I have to wait to hear the results.

[LauraL]

I've always run hot. I'm the first to shed the jackets in spring, and I don't tolerate heat well. Both of my brothers are the same. Inexplicably, about a year and a half or two years ago, I started to get cold a lot. Had to bring in a blanket for my office! Now that I think about it, that's about when the sleep problems started. Very strange. Funny thing, though, my body temperature has always been low--both when I was always feeling hot and always feeling cold. And my blood pressure has always been either on the low side of normal or too low. I've had more than one doctor instruct me to eat more salt!

I'm new to narcolepsy, but wow--so many weird changes happening to my body!

[Bexterina]

This is a really interesting topic. I am always cold unless it's about 90 degrees and sunny outside. I find that when I begin to fall asleep, I get much, much colder. I assume my body temperature must be dropping. Sometimes it is so bad that I put the covers over my head for relief. I would be very interested to see if there are studies on a possible correlation of being cold and narcolepsy.

[818sis]

This is a really interesting topic. I am always cold unless it's about 90 degrees and sunny outside. I find that when I begin to fall asleep, I get much, much colder. I assume my body temperature must be dropping. Sometimes it is so bad that I put the covers over my head for relief. I would be very interested to see if there are studies on a possible correlation of being cold and narcolepsy.

I think I remember studying about how body temps normally drop during sleep. Maybe we've stumbled onto something here.

Where do we look to see if any studies have been done on this already? How do we bring it to the attention of future N researchers?

Especially if I wind up diagnosed, I'd love to begin heavily advocating for N awareness. People really don't understand it, and really should. Also, I'd like to see more research on Nw/oC. I am already dreaming up ways to raise money for research and ways to raise awareness.