Twice now I have gone to an ER with classic AD symptoms (pounding headache, BP spiking, sweating above my injury level) and had to explain the condition to the doctor myself while feeling terrible.
What do people carry or say to shorten that conversation? Does a printed card actually help?
Yes, a card helps, but only if it is the right card.
Mine is a laminated A6 in my wallet and a photo on my phone lock screen. It says, in this order: "AUTONOMIC DYSREFLEXIA — MEDICAL EMERGENCY", my injury level, the sentence "Sit me upright, loosen anything tight, check for a blocked catheter first", my normal resting blood pressure (mine sits at 95/60, so 140/90 is a crisis for me and looks unremarkable on a chart), and my consultant's number.
The resting-BP line is the part that changes how staff react — without it, a nurse sees a normal-looking reading and deprioritises you.
Causes in order: blocked or kinked catheter, full bowel, pressure sore or ingrown nail, tight clothing. Bladder is the cause maybe 80% of the time — get that checked before anything else.
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