HOT, Every night, I'm to hot... very hot..

[johnniebear]

It's not the sexy kind of hot,  every night I seem to get very hot.  It happens when I first lay down for the night or just after I fall asleep.

I would ask the wife to leave to bed, however we have a house guest for another week and they don't have a need to know about my MS just yet, and Kouper  ( over sized boxer & my baby)  won't move no matter what.

I have a remote for the ceiling fan, the a/c  in on and I keep wet cloth nearby & water,  I think I might be freezing my wife, so she throws on more covers & doesn't complain.  

I'm laying there with out any blankets,  at some point  during the night I seem to get my temp regulated. But I wake up exhausted sometimes.

Haven't started any DMD'S yet if that matters,  I  go back the Dr in mid July..

Any suggestions?

thanks
John..

[Csativa]

It's really difficult for me to maintain an ideal temp.  I seem to be perpetually overheated.  I think the only time I've been chilled in years was when I had a bad reaction to alpha interferon for hep c.  

I run the A/C in the bedroom as soon as the temp outside hits about 65 (it's a small room and it can get quite warm with two people sleeping in it.)  Anything higher and the puddle factor sets in (I melt like the wicked witch)   For me, the heat intollerance is a difficult pill to swallow; as I am sure it is for many of us. The one saving grace is that my wife does not sleep well in a room that is too warm.  She would rather have the room very cool and sleep with blankets.

John, you mentioned that you sometimes wake up exhausted.  Is that because you just don't sleep well when overheated, or is it due, in general, to the lousy things this disease does to our bodies?  Hopefully you will see some positive change after being on one of the DMD's after awhile.

Frank

[essdipity]

Hi again.

I haven't heard of using these things for sleep. I suggest consulting with a manufacturer or two. The one I listed above does carry a cooling pillow or pillow case, which sounds interesting at $24.

Some of this gear is meant to last only for a few hours at a time, as in being outdoors. I saw another that somehow manages to stay at 58 degrees fahrenheit. There are some very basic and rather cheap items, and some that cost the big bucks indeed. They may be worth it, I don't know.

My particular problem comes from some mixup in the thermo regulating system, so it's disproportionate to the actual temperature, which is comfortable for others (who look at me oddly as I stand there dripping!)  It's different from normal response to heat that aggravates MS symptoms. I think most who have posted here have what I do, but I wanted to say that there can be lots of reasons for overheating, including hormonal ones. If you are menopausal or perimenopausal, a consult with your gyn is a good idea. A lot of night sweats come from that, not to mention hot flashes. Thyroid conditions mess with temp too, as do other ills. It's really a good idea to check with your PCP if you have this problem.

In any event, cooling garments can help.

ess

[helen41]

I too sleep without covers under an open window. My husband says that to touch my skin doesn't feel hot, but I would swear i was burning up. Bless him, he keeps covering me when I sleep for fear I will get frostbite or something! I'm undiagnosed and my GP keeps refering to it as hot flashes. I've had those, and this is different. Not as intense, and it goes on for hours most nights

[shermay]

Hi,

Me too!!!!  It's terrible.

It can be minus15 outside and I STILL have to leave the windows open!

My Husband can't stand it, so he sleeps in another bedroom:)  

At least it's good excuse from getting away from his snoring :)

However,back to basics I know It's not a joke, it wakes me so many times in the night, I'm going for Ess's idea of wearing a cooling jacket -  I wonder if it it will work during the nightime without being too uncomfortable??  Ess any ideas???

Debs

[supermum_ms]

I have temp regulating problems, in summer i get floppy from the never ending heat. I cant really say that i feel hot per say, its more what the heat does to me now. I feel so light headed all the time, stars are constantly swimming in my eyes and if i lift my head above horizontal on somedays it would be a miracle. I have 0 energy and cant seem to rest enough to get some back, aircon is on all day and night and i'm not going out in the heat enough to explain it.

In the cold (like now in OZ) i cant feel or get warm, i'm so cold, limbs are icey cold both on the inside and to touch. I can put the blanket on its highest and below the waist i cant feel anything, i'm still really really cold. Funny but my tremor started a few years ago but because it was more noticable in the colder months i always assumed i was just cold and shivering lol i know differently now.

I have too hot or too cold, funny but i think better in the cold but not that much better lol!

Cheers.......JJ

[essdipity]

Forgot to say something important!

If you qualify, you can get assistance to pay for cooling equipment, or maybe get it free. Some chapters of the NMSA have these programs, and the MSAA definitely does.

Here is one source of cooling garments--there are lots of others. Prices vary considerably.

http://store.polarsoftice.com/polarshop/pc/home.asp

ess

[essdipity]

One thing you can do is use cooling garments for outdoors. This might be particularly good for you, Shirley, since your work requires you to be in and out constantly.

We've had quite a few discussions about these here. There are various types, including hats, neck wraps, wrist wraps and vests, maybe others too. I'm awaiting delivery of a new neck wrap that I hope will help me a lot. I ordered one that Michelle recommended.

I believe some of these must be soaked in water, but that sounds pretty awful to me, so I chose a kind that holds small ice blocks. You can buy extras of the ice if you want, but I've got room to keep the whole wrap in my freezer, easier still.

You can Google to find examples, using 'cooling garments,' and we can talk more about ones we like if anyone wants to.

ess

[serenity402]

HiI also suffer from unbarable overheating, I am always hot, even when its cold and even when the temp drops to below 0 I still sleep with the windows open, much to my housmates dislike, I am even worse in summer and can only just tolerate a light blanket over me and minimal clothing otherwise I sweat profusly ad during the day i get neauseouse and headches fron the heat, so I know what you are going through. My specilist physician sais i have to try keep lots of cold drinks with me in a little cooler bag, but it is difficult in my profession as I work on an ambulance and dont always have the chance to cool down, then I am a real monster to be around as I dont know what top do and my concentration goes down and I cant think straight.
I wish there was a mirical drug out there to help but there isint.
Good luck and if you find a good solution please let me know

Shirley

[PheonixAbove]

I have severe issues with heat. It is so bad that I have 2 air conditioners going in my bedroom during the summer months, both set at 66. It kills me to think of the electricity I'm using but I simply can't function for more than 15 minutes in anything above 80 degree heat.

A simple ride in the car? Forget it if the car doesn't have AC. It's really frustrating. Summer used to be my favorite time of the year and now I absolutely despise it. From what I've read over different boards, it looks like a lot of MSers have problems with temperature regulation. Doesn't make you feel better but at least you know you're not alone... or worse, crazy.

[addicted2harleys]

My body temp exactly mimics goofysmom.  I drive my mom crazy with it.  Haven't figured out how to make it just be normal.

I am undiagnosed.

Addi

[goofysmom1]

I have problems regulating my body temp too.  Either too hot or too cold - the cold I hate, and the hot makes me feel disorientated...I agree with ess - this is different from the overheating - which makes me walk like a drunk sailor....


Hugs,
Chrisy
undx'd

[Eyesnlegs]

I have issues with regulating temperature too and have been informed by my MS nurse it is a 'normal' sx if there is such a thing.

I mostly have a problem with sweating and just thought that my flashes were going on forever! but when I am overtired I get very cold and just can't get warm.

Be well
Pat

[cali1892]

Yeah, I do.  I didn't know it had to do with MS.  I thought it was due to my hypothyroidism.  Which is now regulated.  Over this past winter I could not get warm, and now I have a very hard time staying cool. I hate it.  I would rather be cold than hot.  I will be a hermit most of the summer.  

Anyone know what's up with the temp regulation?

[essdipity]

Anyone else with temp regulation problems?

ess

[gypcwmn]

I keep my A/C at 63. All winter i slept with no heat and windows wide open. My poo hubby.

[johnniebear]

Guess that's just how us MS'ERS systems work...

[socrates2k1]

Wow, I'm just the opposite, no matter how hot it is, in my home, my body still tells me, I'm freezing.  The temperature in my home, stays around 79 degrees, yeah I know warm, but comfortable.  My wife is burning up, she has fans on her, etc.  Now, as for me, I sleep with a cover sheet, and two blankets, also we have a warming mattress cover.  The warming mattress cover lays between the mattress and fitted sheet.  It has a range of off to 5, 5 being the hottest setting.  I keep mine at 5, at night, which means half of our bed is overheated, if you know what I mean.  This makes my wife's side of the bed hot as well.
I can't help it though, because I feel so cold.  Oddly enough, I have a low normal body temperature of 96.7 degrees.

[essdipity]

You are TOO funny!

I suffer from overheating too, not the same as yours. If I keep it cool enough inside I'm okay, but if the temp goes over 70 indoors, I'm cooked. 65 is much better.This applies 24/7, though. I can start sweating in an instant.

Outdoors, of course, it's awful at this time of year. I turn into a miserable mess without cooling devices of some sort, within a few minutes. This humid climate sure doesn't help. I can even get nauseated from it.

This is not the same as worsening of symptoms due to heat. That doesn't really figure into it. It's my growing inability to regulate my body temp normally. I've tried to look into how this may be related to MS, and I'm mostly just confused.

Wish I could be of help to you, but you're already doing everything I can think of. Have you mentioned this to your doctor?

ess