Immediately after my brain injury I was constantly freezing, as I explained in Physical symptoms . It didn’t matter what the temperature actually was, or how many layers I wore. Resembling the Mitchelin man I piled on clothes, had the thickest socks and still felt like I was in an industrial freezer.
Fast forward two years, and that has moved on. I’m no longer a walking ice cube. But instead I can very easily overheat. I can tell the air temperature isn’t abnormal, it’s just me. My face will flush and sweat runs down my face and neck. I’ve got to be honest with you, it’s not the most attractive look. Before anyone asks, yes I’m female but I’m only 34, so this isn’t the menopause. My brain is just re-calibrating to decide what is the accurate response.
The hypothalamus
We need to keep our body temperature around 37 C or 99 F. A part of the brain called the hypothalamus sends instructions to the skin via the nervous system to keep things in order. If it thinks we are cold the hairs on our skin stand up. This traps air next to our bodies, offering some extra insulation. Or if we are hot, the sweat glands produce liquid so the evaporation process will cool us down.
All very clever. But if your internal thermometer isn’t working right all of this can be an overreaction.
It can be pretty embarrassing
Having a flushed, sweating face can make it look like you are nervous. Liars when questioned can typically have this involuntary response. The police are trained to look out for this when they are interviewing suspects. So I would hate to think that people got this impression of me.
Just to be clear, it isn’t anxiousness or nervousness that is doing this to me. I can be at home and it happens. I think it’s more an overreaction to slight changes. Light exercise can cause it, tiredness, almost anything. And then when I start taking layers off, or go out in the cold to cool down, suddenly I’m freezing. Maybe that’s when my brain has realised it made a mistake and wants me to reverse my actions.
Everything takes planning when you know this could happen
So we all have stood there looking at our clothes thinking “what should I wear today?” You consider the weather, and occasion you might be attending and try to decide what is going to best suit those factors. But when you have to take account of you could be freezing and boiling on the same day you need to put extra thought into it. I’m always having to think about layers which can quickly be removed, whilst thinking if the layer underneath will be creased, or I’ll just look fat.
I know in the grand scheme of recovering from a brain injury this is a minor grumble. But it’s still irritating nonetheless and adds to life’s complications.
23 replies on “Inability to regulate body temperature due to brain injury”
Oh yes the sweats! I wondered what’s been going on, I am the same. I wake up in the night wet through, urrgghh horrible. I am going with the layered look too, I wear a hat a lot, even in the house to keep warm.
I love the sunshine , lovely, the warmth on your back and neck lifts my spirit. It’s in short supply in England especially around the Pennines where I live. I also wear a hat in the sun, my head and scar soon gets overheated. Being cold and in the cold is the worst, I find I get drained quicker, must be that temperature regulator using up its power sorting me out? Not sure which is worst being too hot or too cold, either one I’ve now got a collection of hats !!!
I’m a fan of hats too…. and scarfs! Maybe it will get better, but I’m tired of this nonsense now. But at least it’s not just me.
MIchelle – I believe I wrote something on this a few months ago. In my experience, something can be done. It’s called hypothalamus/pituitary dysfunction. Apparently, those 2 glands in the brain control our entire endocrine system. A TBI can damage one or more of the functions of the endocrine system.
I was cold most of the time after my TBI. I called it bone cold because it was different than any other type of cold I had ever experienced. It felt like every inch of my body was cold including my bones. I also had extreme neuro-fatigue and foggy thinking. I had this problem with my first TBI and even worse with my second TBI.
It turned out that my thyroid was affected and I was finally diagnosed with hypothyroidism. The thyroid is considered the thermostat of the body. It was only through my own research that this was discovered. My doctors were very reluctant to give me the type pf testing that would reveal this problem because they had never heard of the thyroid being affected by a TBI.
Eventually, I found a neurologist that did the correct type of testing and found that I not only had hypothyroidism, I also had a reverse T3 problem. I still haven’t found a doctor in my area that knows how to treat this, but luckily my doctors have been willing to let me experiment with the medication to see what works for me. I’ve been guided by research from “Stop the Thyroid Madness” and “Thyroid Mom.”
It was working really well for many months–my temperature went up from 96.0 to 96.7 to as high as 97.8. I was consistently
in the high 97 range. I stopped shivering all the time!
I was also far less fatigued and could think more clearly. Out of the 90 days I was on this new medication program I actually felt really good for 27 days. At first just a day or two here and there, but eventually I was having a few days a week that I felt really normal for the first time in 4 years! I’ve actually been talking to my old clients about starting my business up again.
It has now been confirmed that this type of therapy works for me because we were just getting ready to up my medication to try and get my temp into the 98 degree range when my blood pressure went up one day at my neuro’s office and he thought it might be this medication. I had my BP monitored for a month without the medication–which turned out to be normal everyday.
My BP stayed normal but my temperature went back into the low 96’s and I became severely fatigued and more foggy thinking and memory problems again.
I had been rushing around all day and was almost late for my appointment which can cause the BP to go up. I just started taking the meds again and I’m hoping to feel normal soon.
My doctor says this is more of an indication that the endocrine system can be damaged by a TBI. Unfortunately, it’s all anecdotal and the medical community wants years of clinical trials before they accept anything new. Hopefully, doctors will at least start testing the endocrine systems of TBI patients on a more routine basis to collect data on the subject so that more survivors can be relieved of these symptoms that can continue indefinitely.
That’s very interesting. I do have hypothyroidism which is being treated but I still struggle with temperature. Although it’s improved it still leaves something wanting. I was borderline for many years anyway so I don’t know if my TBI affected it or not. But it’s interesting that you have seen there’s more to it than that.
Both of the sites I mentioned explain reverse T3 really well. I photocopied the info and took it to my doctor’s. Certain tests have to be done and then there’s a conversion ration that the lab doesn’t do that gives you the results. If they don’t do the conversion it gives the impression that it’s normal, but it may not be. Most doctors don’t know that.
They also explain what causes it–too much or too little cortisol, faulty processing of iron, surgery, prolonged stress, etc. I don’t know anyone who’s had a TBI that isn’t dealing with stress as they try to understand what’s happen to them and put their lives back together.
If anyone who reads this info finds that they have a reverse T3 problem my doctor would like to know so that he can gather info for other doctors. Please contact me by email at spectra555@gmail.com or call me at 1-530-893-3340.
Thank you!
Hiya, I also have under active thyroid, had it for 6 years before the discovery of my tumour. I read an article on a possible link with brain injuries could possibly effect thyroxine levels. I am due for bloods next week and back at the doctors, I am going to look more into this, thank you both for the information, very interesting. Jo
Yeah. I hear you. My left arm and leg are naturally so cold I have to be careful when I get undressed and into PJ’s at night my arm doesn’t touch my side, ice, it’s like icy!
My son has suffered with the sweating profusely and being chilled too. Doctors look at us like we are crazy when I mention this at any of his appointments. He suffered the neurostorming while in his coma, not sure if anyone else did too. His temperature then would go sky high. Now when you touch his skin he has multiple temperatures throughout his body.
He has no idea when it is too cold or too hot outside his body just doesn’t regulate his temperature anymore. Makes you wonder how accurate taking a temperature reading really is for illness purposes.
Gosh that does sound difficult. Maybe the doctors haven’t come across it before and can’t think what would help.
I hear you! The temperature thing is so weird, isn’t it? My left leg always feels as if I’m wearing a warm knee sock even if it’s icy cold outside. My whole left side in my 31 years post TBI has never been at the right temperature. I’m hot and sweaty much of the time and can only dress in layers. Put them on, take them off, a way of life. Nothing has helped, unfortunately. I’m hypothyroid, but regulating that has not changed the temp problems. I remember my Physiatrist telling me it was my “perception” of hot and cold that has been damaged. I can’t touch a stove with my left hand because at first a temperature won’t register in my brain until it’s “ouch”! And I almost burn my hand! It’s annoying in so many situations. And my daughter wants to move to the southern US where it’s so hot and humid??? I’ll scream for help now!!!!!
Hi Sandy, I too have hypothyroidism which is being managed but still my problem with temperature continues. It’s so annoying. I know it’s hardly the end of the world compared to many of the affects of a brain injury, but it still makes life more complicated.
My neurologist and I just found I’ve been suffering this from the being of my TBI from a concussion almost two years ago. It’s a pretty serous when the outside temperature can reach 100 and my body heats up won’t cool down and can cause dehydration pretty quickly and takes me hours in a cold shower to cool down but I’m belessed to be alive and finally after 21 long months I’m getting better and stronger everyday.
Wow 100 is hot for anyone, but super difficult if your brain and body are already struggling! I feel for you Kevin.
I’m curious if they have found anything to help you. I am in the exact situation as you from a TBI. I was at a stop light and was rear ended by a moving truck who fell asleep. The speed limit was 55 so they assumed he was going somewhere around there while I was fully stopped at a stoplight. My head broke the headrest off of my Toyota RAV4 and the entire trunk was in my back seat. I am miserable. I cannot do anything, not even make up my own bed without breaking out in a sweat like I ran a marathon! I am desperately looking for help
No I didn’t get much support with my brain injury at all. But it is worth having your hormonal levels checked out as these can be thrown out after a brain injury and cause many problems, temperature fluctuations being just one of them.
I have a tbi and have trouble feeling temperatures like taking something out of a hit stove till I burn myself. Froze everyday last winter. If it wasn’t very cold never put air condition in even if its 100 degrees?? All summer slept on sweats began to think my temperature is really off
It’s so difficult isn’t it. These days heat is the biggest problem for me because there’s only so many layers I can take off.
Since my head injury my superpower is I don’t get affected by high or low temperatures. It can be 35c, I’m working outside in the midday sun. I don’t realize it has got so hot just feels like it’s 20C. Winter it can be minus 10c or below wearing just a very thin summer hoody and one layer of clothing. It doesn’t bother me. I can be out for hours and I don’t even shiver. It feels good. Before plus 10 degrees and I was suffering. I live in Canada so winters are harsh.
Well at least you don’t become uncomfortable, which is nice. Although it must be difficult to know if you are wearing warm enough clothes when it’s freezing outside.
Thanks for sharing! I’ve also experienced this symptom since my TBI. To be sitting in church and be sweating uncontrollably. It’s an embarrassing feeling. I relate.
Yes I am so embarrassed when I’m mopping my face because it’s dripping with sweat and it’s not a hot day. But thanks for sharing your experience, at least I’m not alone and someone understands.
Yesssss!!!! I am so glad to hear I’m not the only one that deals with this!! I tried to explain it to my doctors and they look at me like I have 3 heads! It’s so weird because I when it happens I get pins and needles up and down my neck, back, and into my arms! Sometimes I get these electrical pulses up my neck and into my brain. I literally feel like I’m being electrocuted! Its crazy when everyone else in the house is comfortable or cold and I’m in a lightweight tank top and shorts in January!!! I was always freezing before the accident. But just like you I go from overheating to freezing to the point where I can’t feel my toes or fingers!! Thank for sharing your experience!! It’s good to know you aren’t alone!
Tina you’re welcome ? The upside is that I probably won’t notice when I hit the menopause ?