Since February 2021, the NZ Spinal Trust (NZST) has been running an education campaign on Autonomic Dysreflexia (AD) and the feedback they’ve received has reinforced that this campaign was long overdue!
General comments included many saying “I had never heard of it before”; “It’s been so long I’d forgotten what was involved” and even “I wouldn’t know what to do”.
Horror stories included a medical specialist stating that AD wasn’t even ‘a thing’ … to someone in the middle of an AD episode!
Even NZST learned something … that AD can present in people with an SCI lower than T6 (although this is rare).
AD is a medical condition that causes a sudden increase in blood pressure requiring immediate emergency attention, and can lead to stroke, heart attack, seizures, even death. Typically, any tetraplegic with an SCI at level T6 (mid-chest) or above is at risk. For the rest of their life.
“I am tired of trying to explain to health professionals what AD is and what the treatment plan should be … When you are feeling that bad and scared, last thing should have to do is advocate for the correct diagnosis or treatment.”
AD occurs when there is a physical issue below the injury level (eg bladder or bowel distension, pressure sore, sunburn, constricted blood flow, etc). The body’s nervous system sends impulses along the spinal cord with the message “something’s wrong”. When these impulses reach the level of injury, sympathetic neurones activate and cause the release of chemicals which in turn cause blood vessels in the skin and abdomen to restrict, and blood pressure to rise. This rise in blood pressure is detected by sensors in the heart and neck (baroreceptors), which signal the brain. The brain then sends a message down the spinal cord, effectively saying “message received and action will be taken” and the blood vessels open up and pressure is relieved. But in AD, the message can’t get past the cord injury and so only vessels above this level dilate – vessels below keep constricting as they believe the original “something’s wrong” message isn’t getting through … and blood pressure keeps rising.
Symptoms of AD include:
- Flushing and sweating above the injury level
- Nasal stuffiness
- Goose bumps and paleness below injury level
- Sudden high blood pressure (hypertension)
- Pounding headache
- Slow heart rate (bradycardia)
- Blurred vision or spots in vision
- Irregular heart beat
- Anxiety or apprehension
It is possible to have no symptoms apart from increased blood pressure … this is known as ‘silent autonomic dysreflexia’ and it’s important that those at risk of AD are aware it exists. Any unexplained rise in blood pressure could be silent AD.
Many medical professionals have not experienced a patient with AD and as a consequence may not be fully aware of the gravity of the situation.
Treatment must happen quickly – this is the key. And it can be as simple as sitting the person upright and lowering their legs. Or loosening belts, footwear or binders. It could be straightening a kink in a catheter. Many who are at risk of AD are very aware of the symptoms and the action they need to take. Some keep Glyceryl Trinitrate spray handy to help keep symptoms at bay while the cause is dealt with or professional medical help arrives.
If there is any doubt or the person isn’t responding it’s vital that 111 is called, and the operator told it is Autonomic Dysreflexia or a spinal hypertensive crisis.
The NZST’s AD education campaign is aimed at spreading this information to everyone who may interact with someone at risk. Posters, leaflets, wallet cards have all been produced and given out to pharmacies, medical clinics, hospital wards etc, as well as made available to download on NZST’s website. A short informational video is also available on the NZST website. For those who find themselves admitted to one of NZ’s two spinal units, NZST’s “Back on Track” includes a chapter on AD, and all patients at most risk of AD get a wallet card.
All of this is produced to be as informative and easily understood as possible so it can be shared far and wide … with family, friends, workmates, employers, sports clubs, support workers etc.