A short time into my stay in rehab at Saskatoon City Hospital I began having a regular problem of sweating. Of course, my first instinct was to cool down because, obviously, I was too warm. Being that my stay was during the winter months it was easy to go outside and try to cool off. What was bizarre to me was that I already felt far too cold and I very seldom felt comfortably warm since my injury. However, after going outside with only a light jacket, beads of sweat freezing on my face, the only way to stop it seemed to be to get out of my borrowed wheelchair. With no answers from the physiatrists, nursing staff, occupational therapists or physiotherapists it was up to us to find the problem and solution. It's nothing new to have to be your own advocate for your healthcare, but to a newly injured quadriplegic this was a little bit frustrating to have no suggestions from the professionals who were caring for me and specialized in my circumstances.
My dad, a heavy duty mechanic with very little computer or Internet experience – this was 1996 with the Internet being still somewhat exclusive – used his access at work to search for the cause of this problem. It was a good day when he called me from work, on my cell phone, another technology still with a degree of exclusivity, and told me to, "Take off that leg strap!" Because I was in an average sized wheelchair borrowed from the hospital it was a couple inches too narrow for someone as tall and large as I was. This necessitated me to strap my legs together at the knees, which narrowed my hips, so that I could use the narrower wheelchair without wearing holes in my pants or skin from the rubbing of the wheels.
It was the pressure area being caused by the prolonged use of that strap on my legs that caused pain I could not feel which manifested itself as profuse sweating. This condition is known as autonomic dysreflexia, an autonomic nervous system response when a signal sent from an area lacking sensation reaches the spinal cord lesion, cannot make a connection to the brain, and bounces back. This results in a sharp increase in blood pressure with symptoms such as tingling in the face and head, sinus congestion, flushing of the skin, a general feeling of anxiety, slow or rapid heart rate, profuse sweating and throbbing headaches. At worst, the potential for high blood pressure related conditions such as stroke, aneurysm or heart attack are real and the reason it should always be taken seriously.
Autonomic dysreflexia typically occurs in people with a spinal cord injury above T6 but it may vary, along with the symptoms individuals may experience, and is not limited to people with a spinal cord injury. People with multiple sclerosis, or other neurological disease or disorder, may experience this and their symptoms can vary just like they do for anyone else who experiences it.
Medical professionals are better than they used to be about being aware of this condition and its potential seriousness. When I was in rehab I was warned to make certain that anyone about to perform anything that may cause pain below the level of my sensation use standard anesthesia procedures. The pain caused by being cut open without appropriate anesthesia could easily be one of those times that causes a bout of dysreflexia which could cause one of those life altering conditions mentioned above. If the pain cannot be removed something such as nitro spray may be required in an emergency circumstance to lower the blood pressure and prevent the potential consequences.
My model and good friend, Paul, pictured above, described his typical autonomic dysreflexia symptoms as the pounding headache, flushing which makes him feel flashes of heat, combined the sweating which makes the air feel like ice. He is a prime example of how much dysreflexia can vary. Paul still has much of his sensation, his motor function below his injury is fully impaired, yet he still experiences dysreflexia when he is in pain below the level of his normal sensation.
As serious as autonomic dysreflexia can be, being aware of it, the level of severity, and the areas in my head and face that I can feel the tingling and sweating, make it much easier to determine the location of the discomfort and alleviate it. Some doctors will overreact to the point that they insist blood pressure medication be taken on an everyday basis just because of the minor bouts that occur from entering the freezer section at the grocery store, feeling the urge to drain my bladder, or even pass gas. Unfortunately, that doctor lost all credibility with me by thinking I should be lightheaded and woozy all of the time from the blood pressure medication because of minor tingling in my forehead when I need to pee! For the record, there were other ways that doctor believes quads should compromise living for the sake of a longer life, which also lead to his lost credibility with me.
As unpleasant as it might be, bowel care, performed by digital stimulation, well lubricated or not, and the application of a micro enema, causes dysreflexia in many. It has to be done, isn't pleasant, but I still do not believe it warrants blood pressure medication (we take enough, already), unless it were to become life-threatening. If it were that serious I imagine there would be alternative methods to consider beyond putting a bandage-medication over something that escalated.
Knowing that when I feel tingling or perspiration at the top of my cheek, below my right eye, means that my left foot is bothering me makes a world of difference in easily managing the condition. That is one example of where I know the resulting cause of pinpoint dysreflexia. The same can be said for when I experience dysreflexia anywhere else in isolated areas in my face, head or neck. Sometimes, though, I just do not know where the source of the pain is and it is trial and error to find it and alleviate it. A good friend of mine, Heather, had problems with dysreflexia for a long time and could not seem to find and solve the problem. Finally, someone suggested that the rods in her spine may be causing her problems. An x-ray revealed that they were broken and were clearly the cause of her prolonged problem. Her story is much deeper than just what I've said and you will find enjoyment digging into her very well written posts.
Regardless of the cause, most people get the profuse sweating and have their designated sweat towel. Mine is pictured above and is employed during most bowel cares and the occasional time that I need it until the cause of my sweating is determined and resolved. At worst I have had to take a second towel as the first had become completely saturated and was dripping sweat more than I was. Thankfully that was years ago, and only very seldom since the cause of my problem was surgically resolved, just as Heather's required a surgical repair.
If you are someone with a disability who may be susceptible to autonomic dysreflexia, consider it before undergoing even a small procedure, getting that next tattoo, or any other time you will be knowingly experiencing pain below your level of sensation.
Solutions: Determining and removing the source of pain, pain killers or if it is serious enough, something as strong as nitro spray may be employed by medical professionals to reduce your blood pressure until the pain can be resolved.
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