Facial warmth and cloudy-headedness

[Guest guest]

Hi guys,

I've been diagnosed with PSC for about a year now and this group has

been really helpful. Lately I've been having problems with temperature

it seems. When I take a hot shower in the morning I get very warm in

my face and almost light-headed for about an hour. It's hard to

explain but I just feel like my head is cloudy. The same thing happens

to me when I'm at the office and it gets warmer in the building

(usually when I come back from lunch in the afternoon).

It really bothers me and makes me feel crappy for most of the day. Has

anybody had this problem before? Any suggestions on what this could

be? Thanks for your help!

Jed

[Guest guest]

Jed,

I think if you do a search of this sight, you may find that several of

us have " hot flashes and/or night sweats " . I went to the doc because I

though I might be going through menopause, but it was diagnosed with

PSC not menopause. I cannot take hot showers and also have to be

careful drinking hot drinks. I also get overheated at work and feel

like I could pass out. I don't do hot tubs either now. If I get to hot

sleeping I wake up feeling like I could pass out, sometimes I go and

lay on the tile floor in the bathroom once I cool off it seems to

pass. Staying well hydrated helps me. Just today I went and stood in

front of an air conditioner vent, work does not know I have PSC, so

they tease me about going through an early menopause!

PSC 5/07 Listed

[Guest guest]

Thanks for the comments about it. It sounds like there isn't too much

you can do about it, except just try to stay as cool as possible. I've

brought it up to my doctors and haven't gotten much response from them

either.

I guess it's good to know that I'm not imagining these problems and

other people have experienced them too. Sometimes you feel so alone

when you get a rare disease like this and people don't really

understand.

Jed

[Guest guest]

Thanks for the comments about it. It sounds like there isn't too much

you can do about it, except just try to stay as cool as possible. I've

brought it up to my doctors and haven't gotten much response from them

either.

I guess it's good to know that I'm not imagining these problems and

other people have experienced them too. Sometimes you feel so alone

when you get a rare disease like this and people don't really

understand.

Jed

[Guest guest]

Thanks for the comments about it. It sounds like there isn't too much

you can do about it, except just try to stay as cool as possible. I've

brought it up to my doctors and haven't gotten much response from them

either.

I guess it's good to know that I'm not imagining these problems and

other people have experienced them too. Sometimes you feel so alone

when you get a rare disease like this and people don't really

understand.

Jed

[Guest guest]

Jed and all,

I have the same problems, it is worse in the evenings and at night.

Especially when I lay down in bed or on the sofa. I have found a

wonderful product that has helped me so much for sleeping. It's

called " Chillow Pillow " . You can do a search of where to order them

from. They are about 18 " x 12 " and about 1/2 inch thick, but soft.

You actually open the plug and put water in one time only, squeeze out

the bubbles and magically they get cool. By 3/4 of the way through the

night they warm up for me, so I toss them aside. Within in a an hour

or so they are cool again. So ready for the next day or night. I put

one on my pillow (inside a separate pillowcase) and one under my back.

I even pack one in my suitcase now when I travel.

Now with those and my rifampin, I actually get a good nights sleep most

nights now.

Hope this helps someone else out.

Karyn

[Guest guest]

Jed and all,

I have the same problems, it is worse in the evenings and at night.

Especially when I lay down in bed or on the sofa. I have found a

wonderful product that has helped me so much for sleeping. It's

called " Chillow Pillow " . You can do a search of where to order them

from. They are about 18 " x 12 " and about 1/2 inch thick, but soft.

You actually open the plug and put water in one time only, squeeze out

the bubbles and magically they get cool. By 3/4 of the way through the

night they warm up for me, so I toss them aside. Within in a an hour

or so they are cool again. So ready for the next day or night. I put

one on my pillow (inside a separate pillowcase) and one under my back.

I even pack one in my suitcase now when I travel.

Now with those and my rifampin, I actually get a good nights sleep most

nights now.

Hope this helps someone else out.

Karyn

[Guest guest]

Jed and all,

I have the same problems, it is worse in the evenings and at night.

Especially when I lay down in bed or on the sofa. I have found a

wonderful product that has helped me so much for sleeping. It's

called " Chillow Pillow " . You can do a search of where to order them

from. They are about 18 " x 12 " and about 1/2 inch thick, but soft.

You actually open the plug and put water in one time only, squeeze out

the bubbles and magically they get cool. By 3/4 of the way through the

night they warm up for me, so I toss them aside. Within in a an hour

or so they are cool again. So ready for the next day or night. I put

one on my pillow (inside a separate pillowcase) and one under my back.

I even pack one in my suitcase now when I travel.

Now with those and my rifampin, I actually get a good nights sleep most

nights now.

Hope this helps someone else out.

Karyn