Autonomic Dysreflexia and the Sweat Towel

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.

In the Pivacy of Your Own Home

Recently I spoke about the essential technology required for paraplegics, quadriplegics and others with neurological disabilities. The non-exhaustive list included catheters, pant hooks, leg bags, exam gloves, lubricant, and suppositories and enemas. There are enough intimidating words in that list to make anyone cringe but it is all necessary for health and even survival.

Pain is nothing new to someone with a disability and the pain involved in using the above technologies is, for the most part, controllable by the person using that technology. It is fair enough to say that some people may have trouble ripping off their own Band-Aid, popping a pimple or other unpleasant task one does for themselves. But, usually if something needs to be done a person just simply learns how to do it. The same can be said for these technologies and procedures.

Where the problem really begins is when the pain is not controlled by the disabled individual. My statement still stands true, that the pain is mostly controllable by the person using the technology, but with limitations in dexterity, movement, and strength it often is used by someone other than the person in need of its benefits. It is the caregiver who is now in the majority of control of that person's experienced pain. Though they just want to get the job done, and to help the person that is in need, the caregiver still must have the understanding that what needs doing must be done, regardless of the discomfort it may cause.

A good caregiver understands the balance point between inflicting pain and completing the task at hand as very often the intensity with which a job is done coincides with the time it takes to complete it. While in rehabilitation it was frequently requested of me that I'd be a guinea pig for students working on their practicum. Most often that involved being a practice subject for student nurses to learn to catheterize. For the most part this was alright with me with the exception of one female student nurse.

Almost all of them had a hesitancy which prolonged the discomfort until the catheter would actually enter the bladder, and the worst of it would be over, but this one student's shyness caused her to have a very difficult time getting a firm hold of me and of the catheter. While she was struggling I was in discomfort both from having a full bladder and from the rubbing of the catheter on the sphincter of that full bladder. I attempted to ease the tension of the moment with a comment meant to both jokingly put her at ease and convey importance of getting the job done. It was not received as well as I had hoped.

The point is that she had yet to reach the stage of confidence and urgency needed to complete the task efficiently without causing unnecessary prolonged discomfort. As well, I had yet to find the best way to lighten the situation without causing harm to the necessary border between professionalism and familiarity.

So, how does a disabled individual deal with the fact that someone else is performing such procedures to their body such as insertion of foreign objects into out orifices? Some, I know, are grateful to have the support of their significant other or parent and thankful that the number of people involved in their most private activities are limited to very few. Depending on the couple or family, this can be a strain on the relationship. For a couple, nothing says romantic like a medical procedure before bed, though some might argue it strengthens their relationship. As for children with a disability, growing into teenagers and processing adolescence, privacy desires are a concern. There is also the question of what to do if the caregiver becomes too ill to perform those duties or is unavailable for some unforeseen reason.

The alternative is to have the care provided by someone else or some other organization. Some of the consequences of that include a set of caregivers with built-in backups but rotating staff, both scheduled due to shift rotations and unscheduled due to staff changing positions, quitting or new staff being hired. Just as one employee becomes familiar with your body and its current behavior their shifts are over and they begin days off while someone else comes on. Then, the new person needs to be briefed on the situation and adapt their care based on how things have been going, recently. Of course, some caregivers are more skilled than others and, unfortunately just like when I was in rehabilitation, you can often determine how good of the day you will have based on who is working because there is a great likelihood how good or bad you will feel by the job they do. This is not the way it should be, like it or not. We're dealing with people who are dealing with people. People with good days and bad days, varying personalities, and different preferences of doing things, and of how things are done to them.

Regardless of a person's choice of caregiving structure, it still comes down to the processes of catheterization, digital stimulation (search the Internet for that if you wish to know more about the process of bowel care because I certainly won't be photographing that to post on Challenging Reality) and other privacy invasions occurring in your own home in order to maintain health and survive. Have I mentioned that requiring the use of the wheelchair is not our biggest problem?

While the routine is at first stressful, modesty erodes and it becomes normal. Occasionally, during difficult bouts from sickness or other irregular health fluctuations, the physical pain increases for a time while the mental strain grows right alongside it. The result is productivity and motivation decreasing in tandem with perceived usefulness and optimism for at best a return to how things were before the bout of diminished health.

In The Simpsons episode "Homer the Smithers", Homer fills in for as Mr. Burns' assistant, Mr. Smithers, while he was away on vacation. Homer's ineptness forces Burns to fend for himself. By the end of the episode Burns has learned his lesson and says, "Being waited on hand and foot is okay for your average Joe, but it's not for me."

With the life of automation and ease that most of us seek, I ask you to take a minute now to be grateful for the things that you can do for yourself. Do not take for granted the ability to wash dishes, mow the lawn, shovel snow,  pump your own gas or take only 5 minutes to independently use the washroom, in the privacy of your own home.