When you live with spinal cord injury, a sudden headache, sweating, flushing, or a strange sense that something is wrong should not be brushed off as “probably nothing.” For some people with SCI, those signs can point to autonomic dysreflexia (AD), a potentially life-threatening rise in blood pressure.
I know how much AD can disrupt a day and how hard it can be to explain symptoms that other people cannot see. This article is education, not an individual treatment plan. Follow the instructions from your own clinician and emergency care team.
What is autonomic dysreflexia?
AD can occur in people with spinal cord injury at or above the T6 level. A trigger below the level of injury can set off an abnormal body response and a sudden increase in blood pressure. It can be mild, but it can also be a medical emergency. The U.S. Department of Veterans Affairs describes a blood pressure rise of roughly 20 to 40 mmHg above a person’s usual level as one possible warning sign.
Possible warning signs
- A sudden, pounding or severe headache
- Flushing or sweating, often above the injury level
- Goosebumps or chills
- Blurred or spotty vision
- Nasal congestion or a feeling of anxiety
- A blood pressure reading notably higher than your personal baseline
People do not all experience AD the same way, and some may have few obvious symptoms. Knowing your usual blood pressure and the signs your care team has identified for you can make a difference.
Common triggers are often ordinary
Bladder issues, a urinary tract infection, a kinked catheter tube, bowel problems, skin injury, tight clothing or shoes, pressure, pain, or temperature changes can all be triggers. In other words, a trigger may be something that would be a nuisance for another person but can cause a serious body response after SCI.
This is one reason that having a clear plan matters. When symptoms begin, people nearby need to understand that AD is a real possibility and know how to follow the plan created for you. “Wait and see if it passes” is not a substitute for knowing what your care team wants you to do.
Build the plan before you need it
- Ask your SCI clinician for a written AD action plan and an AD wallet card or other quick reference.
- Make sure your regular caregivers know your baseline, common triggers, and whom to call.
- Ask what equipment or measurements you should have available, such as a blood pressure cuff, based on your clinician’s guidance.
- Discuss when to seek emergency care and what information to give emergency staff.
- Review the plan when your bladder or bowel routine, medications, health status, or care team changes.
The VA’s patient education sheet advises sitting upright if reclined, loosening tight clothing, checking for possible triggers such as catheter drainage, and seeking emergency care if symptoms continue. Your own clinician may give you specific instructions based on your health and bladder or bowel program. Keep those instructions accessible, and do not try medication or procedures you have not been taught to use.
Care teams: believe the person who knows their baseline
A person with SCI may recognize that something is wrong before anyone else can see it. Listen, ask about their AD plan, and tell emergency personnel clearly that the person has a spinal cord injury and may be experiencing autonomic dysreflexia. It is not the moment to debate whether the symptom is dramatic enough.
AD education should reach the people who may need it: family, personal care attendants, clinicians, school or workplace staff, and first responders. A printed plan in a drawer does not help if nobody knows where it is or what it means.
If you suspect AD and symptoms are severe, continuing, or you are unsure what to do, use your emergency plan and seek urgent medical help. This article cannot diagnose you or replace your care team.
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