Irritating temperature struggles after brain injury

Immediately after my brain injury I was constantly freezing. 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 over heat. 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.

temperature issues after brain injury

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.

Having temperature problems after brain injury

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.

Do you also struggle with temperature regulation? Are there any tips that work for you?

 

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9 Replies to “Irritating temperature struggles after brain injury”

  1. 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 !!!

    1. 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.

  2. 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.

    1. 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.

      1. 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!

  3. 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

  4. 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.

    1. Gosh that does sound difficult. Maybe the doctors haven’t come across it before and can’t think what would help.

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