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digdonn

temperature and sleepiness

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Has anyone noticed a connection between temperature and sleepiness?

My sleepiness seems related to temperature in the following ways:

1) temperature changes, especially going from cold to warm, induce sleep attacks

2) When I am sleepy I freeze even though the temperature around me has not changed

3) When I have a fever I do not get sleepy during the day (I feel noticably more alert than "normal")

I am curious whether others have similar experiences, or if this is just my quirk. I have idiopathic hypersomnia and a phase advance circadian rhythm disorder. I do not have narcolepsy.

Thanks.

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I do have a similar problem, the doctors have always called it a 'temperature regulation issue'. I was in a car accident and had severe brain trauma, which lead to pituitary gland damage and narcolepsy.

(Information from wikipedia below)

Individuals with narcolepsy often have reduced numbers of hypocretin in their brains. Hypocretin is produced in the hypothalamus, and the hypothalamus links the nervous system to the endocrine system via the pituitary gland. The hypothalamus controls body temperature, hunger, thirst, and circadian cycles.

That is the explanation for my temperature problems. I used to be extremely cold alllll the time (I would wear a fleece winter jacket at work during the summer!). The doctor prescribed me Provigil for narcolepsy and thankfully that increases the metabolism which warms me up a little bit. I feel bad for my husband because I'll have the airconditioning on, then 4 minutes later I'll turn it off bc I'm cold, then 10 minutes later I'm hot! grr!

I understand you do not have narcolepsy, but I hope this helps. :)

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I can absolutely relate to this topic. I've had a busted internal thermostat for most of my life. On my last trip to Orlando I purchased a sweatshirt and pants to wear during the day...it was July!

I've also noticed that my sleep attacks increase when the temperature goes up. Not the best reaction. I'm cold so I turn the heater up (even in the summer), then I fall asleep. To try and stay awake, I cool it down, but then I'm freezing again. Bummer, eh?

Until I was diagnosed with N, I had no idea being sleepy and chilly were related, but it looks like they just might be.

Thanks for posting this. I know it doesn't give us solutions, but it helps to know that others get it.

Megan

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I always have a sleep attack during lecture on Monday night because the room is particularly warm!

Beyond that, before my dx of narcolepsy (w/o cataplexy) I had an unexplained low-grade fever for 9 weeks. I wonder if this was simply another errant rhythm?

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I've thought about this quite a bit. I think it's probably just due to the advanced state of sleep deprivation that narcolepsy is. I started Xyrem last week; so far it's been great. But I had to stay up to write papers the past couple of nights, and got no sleep for about 36 hours. I took Provigil 800mg at a time, I'm really not sure how I'm alive right now. In my first class yesterday, I asked my friend if it was just me, or were the fluorescent lights really loud? He of course told me he had no idea what I was talking about, but I couldn't hear the professor over the magnified hum. I talked to about ten people yesterday who didn't exist: I'd stop myself and realize it was just me talking to an...idea? Then there's the fact that I saw my cat a few times yesterday. He lives about 300 miles away from me, but he sat on the couch and relaxed with me, off and on. My recent romantic interest told me we ran into each other last night, and that I told her I would explain to her why I wouldn't remember our conversation later. Ech...sleep that knits up the raveled sleeve of care.

Plus: I wrote 4000 words of fiction, apparently, between the hours of six and nine p.m., and let me just say now that I'm really looking forward to reading what I wrote, since I can't remember any of it.

Anyway, when I get that tired, in between the hallucinations and the time warp sensation of forgetting several hours of time at once, my feet not only get cold, but they're very numb, and nothing will warm them. I finally passed out last night. Awkward really, I was half-dreaming while checking my email on the couch, where my monitor is. I remember telling myself I need to get up and get my Xyrem as soon as I finished checking mail...and bam. I woke up seven hours later, and now I feel absolutely terrible, but at least my feet have feeling again.

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800mg of provigil at a time? I am on that amount but two in the a.m. to help get me up and two more at lunch to fight off the sleepiness. Isn't that a bit dangerous at once? Does anyone else have issues with emotions? Sometimes during a cataplexy attack it seems that emotions come overwhelmingly fast, and tears will fall down my face while I am paralyzed and unable to move. Sometimes I just feel emotionally numb, with or without meds.

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Deborah,

Sleep is a very basic need. I feel that PWN (or at least THIS PWN) just often can 't muster up much emotion about anything else when they are desperately in need of sleep. As Snoopy once replied when Lucy asked him if all he ever thought about was sleep, "Only when I'm awake!" I take 600 mg Provigil--400 mg AM and 200 at noon and still need a nap. Am trying Xyrem in hope of improving things.

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Protectionlady: I've read up on Provigil, and I remember reading about "overdoses." If I remember correctly, even at 1000mg or so it was well tolerated.

Anyway, it was just enough to keep me going.

About the emotions. I was never medicated until about a month or so ago when I started Provigil, and now Xyrem. Before college, I didn't cry for years, really. I've always been the king of deadpan, always called the "relaxed" "laid back" "calm" "apathetic" "composed" guy. Then I got to college, and turned into a complete sack of maudlin emotional jelly. The sleep deprivation, the drama of girls and friends and life all really don't help. The only people who noticed the difference: myself and my (then) girlfriend.

I experience quite a bit more...strange, unstable thoughts, I suppose, on Provigil. It's a weird hanging feeling, anyway. I can't take the Xyrem consistently, because I need a huge block of consistent time to sleep, which I don't have. So I take a lot of Provigil, a lot of caffeine, and a lot of unwanted naps.

My social life is crap, I rarely see people, but the girls keep calling. I don't mind if they don't :)

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Has anyone noticed a connection between temperature and sleepiness?

Well, I can say that I am extremely sensitive to the cold weather. If it's cold in my bedroom (which usually is - I live in Boston in an old house), I have trouble sleeping... or doing anything really.

I am also sensitive to hot temperature as well. Ever since I was little.

I get overheated, drowsy, sick, etc. I also cannot sleep in this weather.

But if its warm due to a heating element - i am fast asleep.

Also, this may be of interest:

http://www.medicalnewstoday.com/articles/95940.php

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Most of the articles and new research state that narcoleptics always have warm hands and feet. I don't! During the day, my feet and hands are almost always freezing (all my close friends have commented on that). In cold temperatures, the minute I walk outside, they start to feel numb, and if I'm out too long, I can barely move them.

Yet when I'm in bed trying to sleep, I always need my feet sticking out, or able to stick out, from under the covers since it bothers me to have them too hot. I also have a hard time regulating my body temperature and can go from cold to hot (and vice versa) in very little time.

I find that I get really tired if I'm cold and try to warm up. In the winter I seem more tired because I'm always trying to warm up. In the summer it's not so bad unless I'm in air-conditioning. But I get bothered going back and forth between hot/cold temperatures so quickly. I find I can't sleep if it's too hot, and will often use air-condioning in the summer to cool the room and use blankets. I'm not sure if it's the temperature of the room that makes me tired, or the change in my body temperature going from cold to warm.

Does anyone else suffer from "ice hands" or notice this temperature-changing cause of sleepiness?

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I'm so glad we are talking about this. I am always cold in the winter, especially my hands and feet. I find that being cold makes me very sleepy, and spend most of the day snuggled in blankets whenever possible. I am definitely more awake and alert if I crank up the thermostat.

I also have the same problem in the summers if the air-con is up too high.

I wonder if this is why I seem to struggle more with my EDS more living in Ohio than I did living in Hawaii?? --lisa

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We should all move to Hawaii. I lived there (Oahu) for 6 months and found it to be the perfect climate for me. I didn't notice being as sleepy as I am in Illinois. My internal clock seemed to work correctly. It was easy to get up in the AM and go to sleep in the PM. The only times I had problems there was going into businesses who ran their air conditioners on the icy setting.

Perhaps the constant temperatures and plenty of sunlight cause less sleepiness. Is there anyone here who lives in Hawaii who suffers terribly from narcolepsy?

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Has anyone noticed a connection between temperature and sleepiness?

My sleepiness seems related to temperature in the following ways:

1) temperature changes, especially going from cold to warm, induce sleep attacks

2) When I am sleepy I freeze even though the temperature around me has not changed

3) When I have a fever I do not get sleepy during the day (I feel noticably more alert than "normal")

I am curious whether others have similar experiences, or if this is just my quirk. I have idiopathic hypersomnia and a phase advance circadian rhythm disorder. I do not have narcolepsy.

Thanks.

Absolutely! If I am warm, I am asleep. In fact when I start to pass out in the car, I turn the AC on full blast (or open the window if wintertime) to try to make myself cold.

Julie A

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But if its warm due to a heating element - i am fast asleep.
Exactly me.

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I agree with Helios about the underlying cause of being cold most of the time. I have found that when I am well-rested, I don't have severe fluctuations in temperature. In other words, my internal thermometer is working properly when I've given it enough rest time. When I haven't had enough sleep, I am cold.

Giving my "theory" credence has been the onset of menopause - err - "surgically induced" menopause. So I got full blown menopause and all its glory "overnight". So, I now have hot flashes...BUT...when I am well-rested, the hot flashes are minimal. Likewise, when I'm not well-rested, I get them frequently and with greater intensity.

I also have Reynauds Disease which is a circulation problem caused by constriction of periphery tissues. It mostly affects hands and feet. So, when my hands and feet start to react, the circulation to my hands and feet is poor. My hands and feet get very cold; sometimes even turning blue. I try to do exercises to keep the circulation flowing and preventing the constriction that starts the process. I have met many people with narcolepsy who also have Reynauds. Reynauds is also an autoimmune disease. Interestingly, people who live in warm climates don't often know that they have Reynauds until they move to or visit a colder climate.

When I go to sleep at night, I find that I can't have the room too cold or too hot. Like Mama Bear, it has to be "just right". I take a hot bath and then go to bed. The sudden increase and then lowering of my body temperature helps to bring on sleep.

Provigil dosing....look up work done by Rosa Hayuk. She was one of the principle investigators during the Provigil efficacy trials back in 2000 - 2002. I don't recall the exact findings, but know that they trialed dosing at 200, 400, 600 and 800. I know that there was a point at which "additional" mg didn't make a difference. I want to say that there wasn't any difference between the 400 dose and the 600/800 doses in terms of response, but am not sure that I remember correctly. This could help anyone from "overdosing" and suffering unwanted hallucinations or ear-ringing...again, look for the research and make your own decision. Too much asparin or ibuprophen will make the ear rings too!

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I don't think I have an Internal Thermometor , lol. :lol:

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Shooze-

Interesting about the Reynaulds. I, too seem to have that. In cold weather, my hands and feet get so cold they also will turn bluish. And my hands will get so dry they turn bright red and crack (very embarrasing since nothing usually helps and it looks like I have red gloves on). However, once in warm weather, such as a few days into a tropical vacation, it clears up and I no longer notice it.

Is this an autoimmune blood circulation problem? Or a problem brought on by inadequate temperature stability in those parts? Or both?

I'm prescribed 400mg of Provigil but sometimes take 600, spacing out the last dosage. There are times I feel like I should stop taking it altogether so I don't build up a resistance to it. Would that help?

I'm currently in a struggle to get permission to use a space heater at my desk since the office is freezing and I can't change the thermo. When I'm cold, I'm tired. Hot temps seem to wake me up more. Do you think narcolepsy counts as a reasonable diagnosis for needing constant heat?

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Can i just say i'm new here and SO excited to be reading all these things and know i'm not alone! oh my gosh.

Temperature definitely affects the severity of the N, and i have reynauds disorder too. I never thought about them being related. wow.

On a different note - for the ladies out there - has anyone else ever noticed a difference in sleepiness (increase) the week before their periods? I can usually take a nap in the afternoon and be okay the rest of the day but that week it just doesn't seem to help. and i know there are temperature increases in your body when you menstruate and i'm just wondering if it's all connected....!!

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800mg of provigil at a time? I am on that amount but two in the a.m. to help get me up and two more at lunch to fight off the sleepiness. Isn't that a bit dangerous at once? Does anyone else have issues with emotions? Sometimes during a cataplexy attack it seems that emotions come overwhelmingly fast, and tears will fall down my face while I am paralyzed and unable to move. Sometimes I just feel emotionally numb, with or without meds.

My Doctor said that increasing the dosage of provigil does not help but just costs more money. She said if provigil did not work for me she would give me Adderall. I don't know what dosage is dangerous, but I have found the best way to find out about medication, is not to ask the doctor but directly the drug company, they have pharmastists who can answer questions related to their medication, side effects, interactions with other drugs exctra.

One of my best friends started having seizures out of no where. She broke her hip bone in one seizure, reinjured it after a month in a hospital and overnight rehab facility, and fell down a flight of stairs because of these siezures. So I started calling drug companies. She called Flomax, a medication she was given samples of to help her pass urine with ease. The pharmasist at Flomax told my friend that the type of siezure she was experiencing was the #1 side effect of the medication, which her doctor never meantioned, even after she visited him inbetween siezures when she reported her siezure activity.

One thing I have learned is that as patients we have to be proactive. Doctors are human, just like the rest of use. They may forget things, or maybe never learned some information that is important to our recovery and treatment. So, my best advice is to call Provigil and ask them if your dosage is dangerous. You might also want to tell them what other drugs you are on and what symptoms you are having.

Let me know how things turn out for you.

Good Luck! Take care of #1!

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I know through reading the "Sleep Bible" that body temperature does vary throughout the day, and now I don't remember where I was going with that...

Chris-zZz-"Toph4er"

Oh yea, body temperature is the closest cycle tied in with the circadian rhythm that researchers had thus far discovered, but it is not always, and often isn't, accurate. Basically, temperature, inside and out, does have an impact.

I find I sleep best in a cold room with a warm blanket. I don't do well in warm rooms, but if I am cold in the morning it makes my SP much worse so it's a fine balance. I need a way to have a cold room with a warm blanket at night and a warm room when I wake up, all without bothering the rest of my family.

Chris"Toph4er"

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I find I sleep best in a cold room with a warm blanket. I don't do well in warm rooms, but if I am cold in the morning it makes my SP much worse so it's a fine balance. I need a way to have a cold room with a warm blanket at night and a warm room when I wake up, all without bothering the rest of my family.

Chris"Toph4er"

I am the same way. I keep the house at about 65 degrees at night with a nice warm blanket and my hubby warms the house in the morning. At night, I find it difficult to sleep if I am warm. Also, during my naps, I prefer to be in bright light rather than a dark room but at night, I like it dark.

Sometimes I feel that the sun on a bright day tires me, in regards to temperature and light. Anyone else notice the same?

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Currently, I am at my boyfriends house and We haven't spoken to each other in 8 hours.

This is because my hands and feet have been FREEZING all weekend and the only thing that seems to help is putting them on his warm skin.

But, well, obviously he doesn't like that and is currently super mad at me.

:(

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I can be in my living room.. ready for bed.... brush my teeth and then by the time I get under the covers, I am FREEZING. It's not at all uncommon for me to fall asleep with my teeth chattering I'm so cold. I've never, never understood this. My body temperature will seem fine, then the second I try to get into bed to sleep.. frozen.. beyond frozen... I used to try and put layers on to go to bed, as the freezing feeling is so horrible.. but without fail, layers or not, I'm soaked in a layer of sweat shortly after I go to bed...

go to bed teeth chattering, wake up in a sweat an hour later... doesn't matter the season either...

So interesting to read this is a common thing with us... huh!

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Changes in barometric pressure can also trigger C. My mom met a teacher who had a barometer on his wall so he'd know when he was going to have a bad C day. She also noticed that the N dogs and I always seemed to have the same bad C days. But I'm not sure if anyone's actually researched it scientifically. Pretty interesting tho.

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Ugh.

Changes in barometric pressure indeed!

Which is why jenji's system (yes, I'm talking in the 3rd person) is SO not looking forward to tomorrow's big bag of weather beans:

In the a.m it's supposed to be 54 degrees and by 5pm it's supposed to be 18. jealous?

I should just move to san diego and be done with it.

(bracing)

jenji

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