Body temperature regulation can be challenging with Huntington’s
Overheating has affected both my brother and late father
“Heat, like gravity, penetrates every substance of the universe, its rays occupy all parts of space.” — Jean Baptiste Joseph Fourier, a mathematician who studied heat conduction
Our dad died in May 2020 from Huntington’s disease, and my brother, Gavin, was diagnosed with it just over two years ago at age 42. The disease also took the lives of our grandfather and great-grandmother.
Unfortunately, some people with Huntington’s — including Gavin and our dad — have reported having difficulty regulating their body temperature. This can have a negative effect on their mood, motivation, and general well-being.
Very little research has been done on the topic, though. As a review article published in the Handbook of Clinical Neurology in 2018 noted, “evidence for bona fide thermodysregulation in human HD patients remains anecdotal.”
Currently, it’s thought that damage to nerve cells in the brain and changes in metabolism, both caused by HD, can trigger this issue. My family has noticed that our dad and Gavin seemed to experience an impaired sense of touch, affecting their interpretation of the air temperature.
‘Boiling on the inside’
In the middle stage of Dad’s disease, he would turn on the heat and shut all his windows, even during summer. But in the later stages, Dad often felt hot and sweated profusely as a result of his condition. It caused him great discomfort and distress, and discouraged him from performing everyday tasks like hanging up his clothes to dry or washing up after meals. At this point, he was still perfectly capable of performing these tasks, but he said even a small amount of physical movement would trigger an attack of sweating or make a current episode worse. He said it felt like he was boiling on the inside.
During an episode I would try to reassure and calm him by measuring his body temperature with a thermometer. It always gave a normal reading. One winter, Dad felt so much hotter than everyone else that he didn’t turn his heat on and left his windows wide open. Any visitors had to wear coats, hats, gloves, and scarves to keep warm in his lounge, while he was dressed in summer clothes!
Just before Gavin was diagnosed, he would happily sit in a heated room with a winter coat and hat on. However, my brother now suffers from feeling hot and sweating excessively. He opens windows at home in winter and feels more comfortable at lower temperatures than most people would. His clothes, bedsheets, pillows, and duvets get drenched in sweat.
This is becoming more difficult to deal with because Huntington’s seems to have damaged Gavin’s sense of smell. This means he believes everything smells fresh and is clean, and so he refuses to launder and change his clothes and bed linens for long periods of time. This leaves an unpleasant odor in his flat.
Gavin is aware he feels hot and is able to articulate this to us. But while most of his symptoms seem to cause him more distress than they did for our dad, interestingly, feeling hot isn’t one of them.
Checking that Gavin feels comfortable and keeping an eye out for signs that he’s too hot or cold can help prompt him to wear appropriate clothing. Persuading Gavin to have extra blankets or ice packs to hand, depending on the season, is also a good idea. Although, with Gavin’s behavioral issues and refusal of our help, this isn’t always easy!
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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Sandra Dredge
My husband also suffers from feeling very hot. It becomes so overwhelming that he strips off his top.
Becky Field
Hi Sandra, it does indeed seem to be a common symptom of HD. It must feel so uncomfortable. Thank you so much for reading and commenting.
Tailliez
it would be interesting to know if these disorders in temperature regulation are linked to disease intensity (repeats number) or chorea. it would be logical that chorea induces excess of temperature (??)
Becky Field
Hi Tailliez, it would be interesting. My dad had 42 repeats and Gavin has 45. Dad was more affected by the temperature issues, than Gavin has been. Thanks so much for reading and commenting.
Erica Salamone
I care for a loved 1 with HD and wondered if the disease affects the sense of taste. Do they loose that sense, I find that he eats things that he may never had when he was younger? As for temperature my loved one used to feel cold clamy. I used to think it was his mess. Thank you for sharing.
Becky Field
Dear Erica, thanks so much for taking the time to comment. I have noticed with my dad and Gavin, that they both developed a taste for more salty, sugary, fatty foods as their disease progressed. It seems to affect their sense of taste.