For those of you with Narcolepsy can you tolerate cold?

[klynnk1]

This year has been the worst and it is making it hard for me to do anything social. Once I get chilled my skin will radiate heat but make me feel cold ... like a sunburn chill.  

[specialmom]

That is too bad.  Are you on medication for the narcolepsy?  This only happens when in social situations or all the time?

[klynnk1]

I take Xyrem for narcolepsy - my sleep issues are controlled.   The cold feeling can happen anywhere it is less than 75 degrees.  So it is more a going out thing since our house is 75 degrees and I am comfortable here

Leaving the house and going places is the issue, in the summer everyone has their Air Conditioning cranking, and in winter no one has their thermostat set to 75.  

Most places are only 70 degrees or maybe 72 which you wouldn't think would be a big deal but it totally screws me up.  70 degrees to me feels like I am standing in front of an open refrigerator.   Even with extra clothes on, I will start feeling chilled after an hour of being at someone's house or at a meeting.  There is something about getting chilled that sets off this uncomfortable and weird feeling.   It is like my body is trying to regulate my temperature but can't figure it out - and instead, I get confused signals ...  Radiating heat but feeling cold.  This will continue till I go to bed and affects my sleep cause it doesn't matter how many blankets I pile on I can't get warm.  I won't feel warm again until around 3 a.m. when I have a hot flash and then I am ok.

It does make it hard to be with other people.  I'm less willing to pay the price these days.