Hot flushes and body temperature control

Does anyone else with PSP have this problem?

My mother suffers terribly and it has become quite a big issue for all of us as she gets very distressed. She has to strip off and have a fan on her and then after a short while she wants jumpers on again and then it all starts again. Sometimes she has 3 of us fussing around her with fans, cold water sprays, helping her with her clothes etc. She gets really frustrated if we do the wrong thing and cries out/shouts. Its just awful.

She has been prescribed pill after pill but nothing seems to make a difference. I'm not even sure if this is part of PSP, but if it is, none of the doctors are quite sure what, if anything will help.

Does anyone have any experience or advice?



8 Replies

  • Hi Cathy

    I have lupus and I too have these flushes.Not the menopause but the body not able well to control its temperature.I get very cold or very hot quickly,it is just awful to experience.It also makes my skin feel itchy deep inside when I get hot.

    Layers are the only solution, a hot drink or alcohol make it worse and over tiredness.My husband has PSP and he has trouble keeping warm,bad circulation, never heard him have trouble with flushes.,so I dont think it is PSP

    It is not a pleasant experience for her and sorry she has this as well as everything else and you of course.

  • Hi Pinda, Eliminate all soy products and see if this helps. I had similar issues and when I did that it went away.

  • Hi Cathy, Does your Mother consume Soy in any form? This can bring on hot flashes. I was using soy products and having bad hot flashes and when this was brought to my attention and I stopped using soy they went totally away. It has something to do with the way Soy is processed.

  • Hi

    I am allergic to Say products,have been for 10 years now,so not in my case,perhaps for the other bloggers.I thought soy products were meant to be helpful.

  • Cathy, my dad has had problems with temperature control too from the start. Some people's Psp affects the hypothalamus, although I've CBd is characterised by the sweating too. Dad has hot flushes a lots and he makes for the door to get air. So your mum isn't alone with this. Does your mum take blood pressure tablets or any other drugs? Just wondering if there might be a link we hadn't considered? Dad takes blood pressure tabs and an antidepressant. X

  • Hi Cathy

    Seems to be a problem with PSP, my late husband used to suffer a lot from hot sweats. He has been passed almost 2 years now, not sure if any progress has been made, try speaking to your PSP Nurse Specialist for advice


  • Funny thing you bring this up. For the past several weeks my mother, a survivor with PSP, has been complaining of being 'hot'. I have walked into her room to find windows open (we live in northern Minnesota where temps are cold) and she still is uncomfortable. My husband had a brain stem stroke and has temperature issues, although they are more external. I would believe that PSP does affect some area of the brain that controls temperature. We have an appointment with neurologist tomorrow and will see if this issue is related to PSP and, if so, if there is anything to be done.

  • Thanks for your replies. It seems that this is something that affects some people with PSP but not all. We have a few appointments lined up where we will try to get some sensible advice about medication and will let you all know if we find anything that helps.



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