Extreme temperature deregulation post craniotomy

[ZeeandMe]

So I have been experiencing extreme deregulation in body temperature for the last 21 month since my craniotomy and subsequent ABI. It not in response to the environment around me and can be sweating through my clothing outdoors at -3 degrees or wrapped in everything I can and heat pads etc in the middle of summer. When I have a freezing spell my body seems to react in a hypothermia way in that I loose consciousness/fall asleep? Uncontrollably wherever I may be. Does anyone else experience this and have any idea what's going on? I'm currently pushing for answers with my neurological team but last year under a different neurologist it was totally dismissed.

[Morinagirl]

Omg I so sympathises ! I have had this problem since my tbi in July 21. I too have asked for answers and because my.bloods aren't showing any imbalance have basically been told suck it up buttercup. It positively drains me some days.

[ZeeandMe in reply to Morinagirl]

Thank you. Its awful isn't it!

[cat3]

Same here. After referral by my neuro doc to an endocrinologist I was told it's a result of damage to the hypothalamus and that the only effective option is HRT.

I can't have HRT owing to other health issue so, like you, I've been stuck with the extremes of heat and cold since 2012. Maybe it could work for you though Zee&Me ? Hope so ; it's exhausting 😒..... x

[ZeeandMe in reply to cat3]

Sorry to hear that you you've had no help and the only suggestion you can't use. I too won't be able to HRT if it were suggested due to the original brain problem and a far older hormone related disorder so that won't be an option for me either. Thanks for responding though. I helps to know I'm not alone!

[Morinagirl in reply to cat3]

My consultant said not hypothalamus in my case it's just brain damage so I'm completely screwed unless it sorts itself out

[cat3]

With no medical solution, I rely on constant showers and fans throughout summer. Winter is a joke ; so unpredictable with plenty of overheating in freezing cold situations ......then shivers galore out of the blue.

It's very much guess-work and adaptable clothing for me. Hateful for those of us with this disorder.

I feel for you..... x

[brokenin]

Mine was very bad in the first 6 months but has stabilised since then. In the first few weeks I couldn't take a bath because I started sweating instantly! During the summer, I keep a USB hand fan in my bag, and during the winter I just make sure I have a variety of layers I can choose from. I also drink water frequently.