Uncontrolled body temperature.

[SEADIVER]

My wife has had PSP for six years, but over the last year she has suffered with uncontrolled body temps. She is always hot to the touch and sits around in her underwear with the French doors open to the garden to try and cool down. I sit in the same room with a jumper on to try and keep warm. Has anyone experienced this with a PSP patient. If so what can be done

[Sun-flowerwearer]

Hi

Yes I have read that the disease affects the part of the brain that controls autonomic functions which includes body temperature so they can feel very hot when it’s cold and visa versa.

[crwban]

Dear Seadiver, My wife lived with PSP and FTD for 12 years and suffered with bouts of sweating especially during the night, resulting in change of bedsheets and clothing etc.

The internal body temperature is regulated by a part of the brain called the hypothalamus which can be affected by PSP, resulting in the body being unable to control the body temperature back to around 37 degrees C. Apart from using light cotton bedsheets and clothing and keeping the bedroom as cool as possible, it was so difficult to manage. The following day after such an episode my wife would be exhausted.

The Rare Dementia Support team at University College London might be able to offer further advice as I know how challenging and upsetting PSP can be without the added complication of the body temperature issues.

[e-mail] is the easiest way to get in touch and to become a member of RDS.

You can also leave a voicemail message on 020 3318 0243

Please try and get as much support as you can.

[Zerachiel]

Hi SEADIVER

My wife was the similar, there was one thing I would do that helped sometimes when she was shivering uncontrollably because she believed she was cold; I would make sure I had her full attention and convince her it was her brain and she was not cold by touching her and explaining that if she was that cold I should feel hot against her, after a few minutes of reassurance and logic the shivering would start to ease.

[timbowPSP]

Hiya all you 'hot-and-coldies'. I am male 82, PSP diag 6 yrs. Yes, yes, I suddenly get bloody cold on some warm nights and I put on loads more clothes and covers, then within minutes can get sweaty hot! The doc ran tests and said "No problems ..... it must be your PSP". So thanks for the hyothalamus and the Cambridge info. 'Please Stay Positive' . TimbowPSP

[Husbandof]

I wondered about this. My wife has PSP and recently started feeling overly warm all the time and now sets the A/C at 65-68 degrees. Brr for me, but I thought it might be a PSP effect

[Junky60]

my husband who was always cold until PSP then he experienced the same thing and did the same thing, underwear only just a sheet to cover up with when needed, this disease has so many weird symptoms

[Pinkcamelia]

my husband has PSP. He has bouts when he sweats so much, feels warm. You would think he’d had a bucket of water over him. But this usually goes hand in hand with the full body tremors he has. It is very exhausting for him. Awful to see.

[Jewel23]

My father who passed away over a week ago began having those sweating episodes from time to time. He would get drenched in sweat. Since he was bedridden, we would need to change his bedsheets and T-shirt afterwards. He would sweat profusely and the feel cold afterwards. My suggestion is to try to keep her with a fan and cotton clothing, etc.

[PineEater]

Sorry to learn your wife has PSP. Regarding the uncontrolled body temperature, I would like to know, what medicines has she been taking, particularly over the last year. Best wishes