Q. I’m in my second year as a T5 para. A buddy of mine who has been a T2 para for 14 years sometimes mentions he’s feeling “dysreflexic” and needs to get out of the heat or empty his bladder or take care of whatever is causing his dysreflexia. In rehab I learned that autonomic dysreflexia is very serious and can be life threatening. I’m kind of freaked out about the casual way he mentions this. Am I overreacting? How serious is autonomic dysreflexia?
A. Mike, you pose a very important question. Autonomic dysreflexia is very serious — it can cause a rapid rise in blood pressure that could result in a stroke or be fatal. Although it sounds like your friend is adept at recognizing and addressing symptoms of AD early on, it would be better if he was more diligent about trying to avoid AD symptoms by cooling off sooner, or emptying his bladder before it’s full enough to cause AD symptoms.
Diedre Bricker, RN, of Craig Hospital’s Nurse Advice Line, explains that anybody with a spinal cord injury of T6 and above is at risk for AD. SCI between T6 and T10 puts you at moderate risk of AD; below T10 you are not considered to be at risk of having AD.
Bricker explains that AD is caused by some type of stimuli below your injury level — usually something painful — like an overfilled bladder. The body sends messages to the brain that something is wrong, but the messages are blocked by the SCI. When the pain stimulus continues, even when you can’t feel it, your body activates nerves that cause blood vessels in the legs and abdomen to squeeze and get smaller, which causes the blood pressure to go up, often to dangerously high levels. The brain tries to send a signal to the body to lower the blood pressure, but that message is also blocked by the SCI, so the body responds by opening up blood vessels in the upper body.
It is important to know what the physical symptoms of AD are and pay attention when they appear. Symptoms include one or more of the following: pounding headache, goose bumps, drenching sweats, splotchy rash, reddened face and neck, stuffy nose, a feeling of anxiety or apprehension or blurry vision. “Symptoms of AD are the body’s way of telling the brain: ‘Hey, something is going on down here and you have to fix it,’” Bricker says.
It is important to know what your normal blood pressure is, because the most dangerous AD symptom is the one you can’t physically feel — a sudden increase in blood pressure. Bricker says at Craig they consider a sudden increase of 15-20 points an indication of AD. Many pharmacies have free blood pressure monitor stations so you can get a baseline. A blood pressure monitor can be purchased for around $30-$40.
“Because AD causes extremely high blood pressure, it puts you at serious risk of having a stroke,” Bricker says. “You need to identify and eliminate the cause. If you are not able to find it, or if the AD continues, you need to go to the emergency room as soon as possible.”
To find and eliminate the causes of AD — as well as understand it — Bricker suggests a copy of the PVA consumer guideline on autonomic dysreflexia that is available for free download (see resources). It is also important to discuss AD signs and symptoms with friends and caregivers. Bricker also recommends printing out an autonomic dysreflexia wallet Card (see resources).
Causes of Autonomic Dysreflexia and What to Do
According to PVA guidelines, if you have AD, it is vital to sit upright and lower your legs, if possible. Lying down can make blood pressure go even higher. Stay upright until your blood pressure goes down.
The most common cause of AD is a full bladder. If you are on intermittent catheterization, cath to make sure your bladder is empty. If you have an indwelling catheter, make sure all extension tubing is free of twists and kinks and your leg bag is empty. Be sure the catheter is flowing. If not, gently irrigate with no more that two tablespoons (30 cc) of saline solution.
The second most common cause of AD is constipation or bowel blockage. Do a bowel check to verify.
Another cause is pain or irritation from binding or pressure. Loosen clothing, shoes, leg-bag straps, anything that might be binding. Check your skin to see if there are red areas from tight clothing, shoes or straps. Make sure your cushion is working properly. Be sure you aren’t sitting on a hard object. Check for pressure sores, ingrown toenails, blisters, burns and insect bites.
For men, AD can be caused by sitting on the scrotum or epididymitis (infection in testicles); also vibratory stimulation to induce ejaculation can cause AD. For women, AD can be caused by menstruation, pregnancy, labor and delivery, and breastfeeding (see “The Longest Minute,” February 2004, about Ellen Stohl’s pregnancy). Other potential causes are sunburn, frostbite, DVT (blood clots), broken bones, appendicitis, extreme hot or cold temperatures or sudden temperature changes.
If AD symptoms persist, have somebody drive you to the ER or call 911! Crowd to the front of the line at the admitting desk and tell them you are experiencing autonomic dysreflexia. Ask for immediate treatment, beginning with a blood pressure check.
Bricker recommends putting together an AD kit that includes a blood pressure monitor, catheter and supplies, AD prescription medications, and a copy of the PVA AD guidelines.
People that have repeated episodes of AD should discuss this with their physician and ask whether you should have a prescription for a medication that will bring blood pressure down in case of an emergency, such as Nitro-Bid ointment or Procardia (nifedipine) pills.
AD can strike at anytime. New Mobility contributing editor Jeff Shannon, 50, is in his 33rd year as a C5-6 quadriplegic. He had been healthy and free from AD for 30 years when out of nowhere his bladder became hypersensitive and he started having severe bouts of AD, complete with drenching sweats, pounding headache, debilitating spasms, and extreme high blood pressure. The AD bouts have been so bad that he’s had to call 911 and go the emergency room 15 times in the past 18 months. His doctor wrote a prescription for Nitropaste, an emergency medication that lowers blood pressure, and Shannon has had to use it on many occasions. At press time he is getting second and third opinions on bladder management options he hopes will quell the AD, including suprapubic, bladder resection, and bladder removal with an external urine bag.
Mike, it sounds like you are ahead of the game when it comes to keeping AD at bay. Staying informed is our best defense.
• Craig Hospital Autonomic Dysreflexia Education Module, including Autonomic Dysreflexia Wallet Card and link to PVA Autonomic Dysreflexia Consumer Guide: www.craighospital.org/Healthinfo/EM_AD.html.
Advice in this column is supported by Craig Hospital’s SCI Nurse Advice Line, a toll-free hotline for people living with SCI, a community service partially funded by grants from the PVA Education Foundation, Craig H. Nielsen Foundation and Caring for Colorado Foundation. For non-emergency nursing information about SCI health, call 800/247-0257 between 9 a.m. and 4 p.m. Mountain time.