Caregivers usually have time to consult someone if they are unsure how to perform some of their duties. With autonomic dysreflexia, time is very limited and immediate action is needed to prevent serious consequences.
Autonomic dysreflexia (AD) can cause strokes, heart attacks and even death. Probably the most troubling fact is that most doctors don’t know that it exists. If they’ve heard of it, some just don’t believe it’s a real condition. A caregiver needs to be very aware of AD and be confident enough to assist or advise bystanders and medical professionals if it happens to the person for whom they care or someone else.
You need to know who gets AD; the symptoms that occur during AD; how to prevent it; and what to do until medical assistance arrives. Most importantly, you need to know the naughty tricks that an individual with an SCI can pull to bring on AD. It should always be at the forefront of your mind.
Only people with an SCI of the sixth thoracic vertebra and higher can experience AD as it relates to damage to the autonomic nervous system (ANS), which regulates the functions of organs, heart and blood vessels.
It has two components that work together with largely opposite functions. The sympathetic system is responsible for quick responses, whereas the parasympathetic system is responsible for organ maintenance. With an SCI, the parasympathetic component (which comes directly from the brain) largely survives, while the sympathetic system can be damaged.
The extent of sympathetic nerve damage depends on the level of the SCI. It is either non-existent or only functions partially or erratically. The interactive functionality of the two components of ANS is disrupted, often with dramatic consequences for the organs.
The disrupted interplay between the sympathetic and parasympathetic nervous system can play havoc with blood pressure. It can push it up very high, with the extreme risk of causing a stroke, a heart attack or other complications.
If an AD attack is suspected, look out for complaints of a pounding headache and nausea; a flushed, red face; red blotches on the skin; sweating above the level of the SCI; and a cold clammy skin with goose bumps.
As the caregiver, you need to spot the triggers, and a doctor with knowledge of AD should be consulted. Many of the causes of spastic jerks or spasms are also potential causes of AD. Check for the following:
• An overfull bladder or rectum;
• Pressure sores, haemorrhoids (piles), ingrown toenails or any injury, burn wound (including sunburn), sprain or fracture below the level of the SCI;
• Suctioning of the upper airways.
Intercourse can also cause AD. If no obvious cause is identified, consult a doctor, as gallstones, kidney stones, renal tract infections and other hidden problems could also cause AD. Keep a written checklist on you at all times.
A comprehensive care programme will go a long way to preventing or limiting the incidence of AD, and includes:
• Good bowel and bladder care, including meticulous urinary catheter hygiene;
• Pressure relief to prevent pressure sores;
• Caution with water temperature during showers or bathing;
• Avoid sunburn and use sunscreens;
• Maintain a reasonable body temperature by avoiding environments that are too hot or cold, and dressing appropriately;
• Frequently check the entire body for injuries, burns and even fractures.
If the person suffers an AD attack, do the following:
• Sit the patient up to help lower the blood pressure;
• Loosen all tight clothing;
• Check for all the things that trigger AD (which is why a checklist in your wallet or pocket can be useful);
• Call a doctor with AD knowledge.
Athletes with an SCI are just as competitive as any other athletes, but have lower blood pressure and compromised blood flow regulation, which affects their performance, as they tire easily. In order to boost their performance, athletes with SCI might increase their blood pressure with actions that could also cause AD.
They might tie down catheters, so that their bladders become overfull, or they injure themselves (like breaking their big toe). My personal favourite in ridiculous acts is twisting and sitting on their own testicles. As Ouboet from Orkney Snork Nie used to say: “Ook maak lekker stupid.”
Facing off with AD
Anthony Ghillino shares his own experience with autonomic dysreflexia.
The most concerning aspect of AD is that there seems to be a lack of knowledge among medical practitioners in general hospitals. I’ve had a few hair-raising encounters.
On one occasion, I called an ambulance as I was feeling absolutely terrible due to AD. The medical personnel in the emergency room took my blood pressure. They thought the machine was faulty as my blood pressure was so high. They tested again on a different machine and stared in disbelief when they got the same reading.
They argued a third time that it could not be right and put the blood pressure machine on my leg despite the card I gave them with information on AD from QASA that I keep in my wallet. They got the same reading.
It is also extremely frustrating trying to convince the doctors that you’re having an AD episode and explaining to staff how to make you comfortable. Unfortunately, they always feel they know better and often make the episode worse.
For example, I try to avoid spasms during an AD episode, as spams seem to trigger a spike in AD. When people touch and work with me during an episode, it triggers spasms. Hospital staff might reposition a pillow under my leg, which will trigger a spasm and, in turn, trigger a spike in AD.
It’s important to listen to your body and learn how your body reacts during an episode. When symptoms start (in my case, sweating and goose bumps), try to find the cause.
I’ll make sure my urine bag is not full and check my catheter for any obstructions. Thereafter, I’ll check for pressure on any part of my body. In my case, it is normally my foot or hip that is not positioned correctly. If all appears fine, I might change my position and see if that helps. I will also check my clothing for any folds.
My episodes are normally triggered by a bladder or catheter issue. I’ll try to resolve it as quickly as possible. The longer the episode lasts, the worse the symptoms become. The headaches are literally indescribable. The pain is unbearable. It feels like someone is smashing me with a four-pound hammer on the back of my head every time my heart beats.
I know a number of quadriplegics who prefer to stay at home during an episode of AD rather than go to hospital, as their regular caregivers are aware of AD and how to respond. They would rather take the risk and stay at home than go to a hospital and have to deal with a lack of information. It is a dangerous situation.
Ida’s Corner is a regular column by George Louw, who qualified as a medical doctor, but, due to a progressing spastic paralysis, he chose a career in health administration. The column is named after Ida Hlongwa, who worked as caregiver for Ari Seirlis for 20 years. Her charm, smile, commitment, quality care and sacrifice set the bar incredibly high for the caregiving fraternity.