Night sweats, hot flushes and wonky thermostat (new poll)
Today we are setting out another poll to investigate how our members handle temperature regulation. This appears to be a common complaint of those with CLL for which the physiological mechanisms are poorly understood. Temperature regulation can vary from a difficulty being comfortable in a room or in bed, to extreme cases of ‘night sweats’ with the definition being ‘drenching night sweats without any sign of infection or fever', resulting in a shower being necessary and a complete change of bed linens. Regular night sweats for more than 1 month without evidence of infection can be one indication for commencing CLL treatment. These frequent soaking night sweats should be considered however as a red flag, to take into consideration with other factors in a pre-treatment discussion with your doctor.
Other factors besides leukaemia or infections can affect temperature regulation, with known triggers for night sweats including menopause and obstructive sleep apnea. If you have other known or suspect causes, please add this in the comments section.
Also in the comments section by all means add as much additional information as you think could help others, such as have you been treated or are you on watch and wait.
Previous related posts on this subject that you may find interesting to read are:
My wife has developed the technique of rotating the duvet after drying out my half in the morning. This give us two days out of one when I am in a sweat phase . I totally relate, often wonder what it must be like when the water is running off me for my wife. A thin duvet with a blanket on top allows my wife to fold the blanket over her and me to kick off my side or grab the blanket if I can, I always use an absorbent cotton t shirt, that I can swap in the night. I look forward to contributing to the poll.
Hi When I first started having what I call clammy nights I asked whether these were panic attacks as I felt like I was going to die. Over the years I have got used to them but still dislike them. I tried HRT because of my age but it made no difference so stopped taking them. I feel that this symptom which can cause distress to ourselves and bed companions is often dismissed.
It's pleasing to see an early high participation in the associated poll, but I'm not surprised, given the poor understanding and lack of ready solutions to help with this inconvenient and frustrating symptom that many of us live with.
Dick had hoped to achieve a more scientific study, but we couldn't see how to achieve this at present. Hopefully responses to this poll will provide evidence of the need for a serious study into the underlying causes and thereby provide some breakthroughs, so please join in with replies to the poll and provide feedback that could help attract some serious research interest in the future. Your replies will be of great interest!
Am feeling more normal after reading these responses! I get sweats and dizziness for no apparent reason when just sitting doing nothing. It is even more frustrating to be enjoying a walk with a group only to find sweating and shaking means I have to drop out then everyone worries about me. I don't want pity just a way of stopping these attacks!
I have had hot flushes/mild sweats for many years, mainly due to the menopause. We have 2 single beds pushed together with separate sheets and separate duvets, so I do not disturb OH through the night when I often throw my duvet on the floor - works really well. Also find standing bare foot on cold tiles and holding wrists under the cold tap helps with the cool down.
This summer in Southern California has been brutal, at least for me. I haven't been able to ride my horses or do any chores outside. I'm usually better in the heat than I have been this year. I was dx June 2012. There was a time, this summer, I would have horrific day sweats... due to persistent infections. Had a sweat around 4 am a couple weeks ago but my onc said it was probably not the "real night sweat" luckily. I usually run cold and enjoy cold weather, our night time temps are in the low 50s and I still stay warm and have only a sheet. I changed riding helmets which has a lower profile and is also a cooler helmet. The first time I rode in the helmet after I cut my hair short, I felt comfortable in mid 90s but ended up with heat exhaustion. I did wonder if my body is regulating itself properly. I believe I finished with menopause in 2005 so I'm not contributing any of this with menopause. I did get blood red cheeks and ears with menopause, I'd carry a pack of ice and a can of soda to apply to my cheeks. My cheeks got so hot, my eyes would dry out and feel wind burned / sunburned. Haven't gone thru that in years, thankfully.
My internal thermostat is soo wonky, I have to keep a small fan at my desk. I thought it was all menopause until the hot flashes were happening every 20 min around the clock. I knew the symptoms, CLL runs in the women in my family. I finally had to make a drs appt. Just diagnosed last night...damn genetics!
I'm so sorry you've received this diagnosis. It sounds like you have a lot of information about CLL if it runs in the female family line but it doesn't make the reality any easier and I'm sending my best wishes to you. Please let us know if there's any way we can help on here.
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CLL and Heat (Night and day sweats)
Night sweats 
