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#1 DeathRabbit

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Posted 27 March 2013 - 11:02 PM

Anybody deal with this on a regular basis? My hands are almost always freezing, even at room temp; they feel like ice when I touch them somewhere close to my core. My girlfriend complains about it a lot haha, especially when I try to surreptitiously hug her to warm them up :P It may just be that my hypothalamus doesn't know how to regulate my body heat properly since I lost most of my weight, and the only bad weight I have left is at my core. But I wondered idly if it had something to do with N.



#2 munky

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Posted 27 March 2013 - 11:27 PM

My hands and feet both have always been ice cold, but in my case it's because of a circulation problem. Don't know if it could be an effect of Narcolepsy in your case.



#3 smithe32

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Posted 27 March 2013 - 11:52 PM

I almost always have cold hands and feet as well. My girlfriend is constantly complaining about them as well lol

#4 lkl

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Posted 28 March 2013 - 05:21 AM

My temperature regulation is completely out, and my hands get cold a lot. A neuropsychologist I saw once last year, told me that melatonin is involved in temperature regulation, as well as sleep. I think she said that melatonin triggers sleep and a decrease in body temperature or something like that. She didn't seem to know much about narcolepsy though. She told me I was a puzzle- referring to my sleepiness (at that point, I didn't know I had narcolepsy).



#5 DeathRabbit

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Posted 28 March 2013 - 09:30 AM

Well, presumably, our hypothalmus was damged to produce the sleep problem. Perhaps the damaged is not as localized as one would think, I guess.



#6 Megssosleepy

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Posted 28 March 2013 - 11:08 AM

My hands and feet are always cold... except when I sleep I get really really really hot!



#7 sk8aplexy

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Posted 28 March 2013 - 11:09 AM

Definitely...  And how you mentioned since 'weight loss...'

That is really relate-able for me.  I've dropped 50 lb's in the past 4 years, and around 25 in the past 9 months or so...

Always -prior- to the last year or this winter especially, I'd had near no problems with cold weather effecting me nor my hands, and my hands had always been warm to others (by touch).

This winter though my hands have been always very cold rather than warm and definitely beyond noticeable.

I still prefer cold to hot, but damn...

 

Maybe sleeping temp suits would help us:

"Manipulation of skin temperature improves nocturnal sleep in narcolepsy." (2008)

http://www.ncbi.nlm....pubmed/18653548

 

Here's a couple of links, regarding body core temperature and Narcolepsy:

"Changes In Narcoleptics' Skin, Core Body Temperatures Affect Their Vigilance And Sleepiness" (2008)

http://www.scienceda...80201085700.htm

"Research: skin temperature and core body temperature affects sleepiness and vigilance in Narcoleptics" (2010)

http://www.nisfornar...-core-body.html

"The 24-hour rhythm of core temperature in narcolepsy." (1983)

http://www.ncbi.nlm..../pubmed/6878983



#8 drago

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Posted 05 April 2013 - 02:36 PM

I still have cold hands some times, but my issue is related to a postural issue called Pec Minor syndrome - basically, I have rounded shoulders... and in my case, the slouch is extreme enough to cause compression of some artiries. There are a series of stretches that help me bring my shoulders back -- physical therapy. Hopefully it will stick eventually.

 

drago



#9 salomeforever

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Posted 12 April 2013 - 07:30 PM

I have cold hands, feet and a cold nose almost always.  I also find that I shiver a lot, usually on days when I haven't had enough sleep and my Adderall makes me feel on edge, and that this shivering doesn't always feel like a reaction to cold. Conversely, when I sleep I am a fireball, I have to have the air turned way low and I'm attached to this ratty comforter that belonged to my 45 year old uncle in HIGH SCHOOL because it's the only one I've found that keeps the chill off while letting my body breathe. 



#10 Starbuck

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Posted 22 April 2013 - 09:36 AM

Yeah, my hands and feet are almost always cold. I think since I'm frugal with how much I move to conserve energy, it keeps my circulation low.

I tried doing a _fast walk_ recently using the Zombies Run app and I noticed my extremities kept warm well into the evening. Too bad I did something to my ankle so I can't try it again until I heal because it was so much fun!

#11 sk8aplexy

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Posted 22 April 2013 - 02:35 PM

Both 'Mixed Connective Tissue Disease' and 'Raynaud's Syndrome' (both autoimmune related) were mentioned to me at my last visit with a doctor.

In the process of reading into those two, 'Polymyositis' (an autoimmune 'wasting of the muscles' or 'chronic inflammation of the muscles') appeared and is quite, fitting like a nail, to a large extent for me.  As many of my matters have been described by Neurologist as well as other doctors, as Muscular Skeletal; but no official diagnosis which I am aware of has been made, nor did they offer or show any interest in pursuing.  I really don't like, nor try, attempting to self-diagnose. 

Although, certain things are and can be very apparent to ones self.  And especially when both, one can not afford or be offered without a lot of pushing for, all of the appropriate test to diagnose.

Not to leave out the fact that many autoimmune and/or especially when diseases, syndromes, conditions, etc.. (like Narcolepsy) are not even (nor simply near) 100% diagnose able, to begin with.

 

It can all be frustrating but then again, words are words... 

 

There are many times I wish for access to say, an actual free health care system rather than the money driven, money first, system.  Being poor, yet thankfully with insurance for now, is quite painful and rough; I would assume many agree, at least to an extent. 

One should not have to go to over a handful or two handfuls, of doctors before the obvious, is noted (willingly or unwillingly). :/



#12 Mmartens3

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Posted 22 April 2013 - 04:21 PM

I get cold hands. I just get cold period. I always attributed it to my hypothyroidism.

#13 napper3

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Posted 18 May 2013 - 11:56 PM

Doc says I have raynauds. This came few months after n diagnosis. I have read its common to generate from n meds. Very painful in feet.

#14 DeathRabbit

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Posted 20 May 2013 - 09:41 AM

I'm getting the distinct impression Reynaud's is just a cop out diagnosis when you have cold extremities and they're not sure why. Since so many of us report this change in temp, and I think it's been seen in studies too, it's obviously something dysautonomic that comes with the crappy sleep.



#15 Hank

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Posted 20 May 2013 - 07:48 PM

I get hot flashes, hot feet and hot hands when a sleep attack (aka Crash) is coming on. I would welcome cold flashes during these times. 



#16 wisher

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Posted 23 May 2013 - 01:44 PM

Yep, my hands are always cold. I remember brushing hands with a very old lady who was bagging my groceries one time. She was SHOCKED at how cold my hands were and ask me if I was okay! I thought it was funny, and also weird, considering elderly people are usually the ones with cold hands. Oh well.



#17 CarlaWilS

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Posted 11 June 2013 - 08:55 PM

I've read that Narcoleptics commonly have circulation problems, much like we're more likely to have blood pressure issues, anxiety, and cardiovascular problems. Just one of those things that our body doesn't do properly because of poor sleep quality, I guess.



#18 DeathRabbit

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Posted 12 June 2013 - 09:32 AM

I'm experimenting with OTC vasodilators actually. I realized that every med I've responded poorly to has been a vasoconstrictor, including all the stimulants. Possibly why I crashed off them so hard. Meanwhile, some of the meds that have made me feel better are vasodilators. So, I'm gonna give this a shot and see what happens. Taking Gingko and Niacin currnetly, as well as my Lamictal XR, which causes vasodilation, as well.