Advice Needed: Helping Nurses Recognize a Dangerous but Obscure Condition

1 What is the best way for a patient to alert you to and educate you about autonomic dysreflexia (AD), an emergent, potentially life-threatening medical condition most doctors and nurses have never heard of?

Autonomic dysreflexia (AD) is a condition that can occur in anyone who has a spinal cord injury at or above the T6 level which causes the blood pressure to rise to potentially dangerous levels. The primary risk of Autonomic dysreflexia is stroke. It is a potentially life-threatening condition. If Autonomic dysreflexia is left untreated, the body's attempt to control blood pressure will severely decrease the heart rate. This, combined with uncontrolled high blood pressure, can be fatal. For this reason, it is very important to treat this condition as soon as possible.

However, getting doctors and nurses, especially ED triage nurses, to recognize and respond to autonomic dysreflexia is an ongoing challenge for people with spinal cord injury/damage (SCI/D).

It happened to me during a recent trip to the ED for a gallbladder infection, the pain from which triggered AD. When I arrived at the hospital, my BP had spiked to 215/119. I was sweaty and had a severe headache, blurry vision, and anxiety, all of which are symptoms of AD. Yet despite alerting both the nurse who took my vitals and the triage nurse that I was having autonomic dysreflexia and showing them the wallet card I carry about AD, neither recognized my condition as potentially life-threatening -- I was actually taken back for treatment after a pre-teen boy with an ankle injury who was in no apparent distress. Luckily, I made it through this bout of AD without incident (except for the pounding headache).

I wish I could say that my experience was the exception, but it's not. Almost everyone I know who is prone to AD has had problems at one point or another with getting health care professionals to recognize and treat autonomic dysreflexia, even when we bring educational materials about the condition with us. While there are a lot of nurses out there who listen to what we're telling them, there are still too many who dismiss us as demanding patients who have self-diagnosed off of the Internet and are trying to tell them how to do their job.

So I'm coming to those of you who work the front lines of medicine for advice. What's the best way for someone suffering from AD to help you recognize the condition and help get us the immediate treatment we need?
I wasn't there to witness the interaction objectively, so I can't comment on the actions of the medical team. However, by your account it definitely appeared you were in distresss, and hopefully next time (if), you'll be treated immediately. Even someone without a history of AD is in danger of stroking with a BP that high. Were you bradycardic?

i would think a nurse who works neuro, would be alerted to this risk.working with sci pts, most, if not all nurses would know what to expect...even a wrinkled sheet could precipate this crisis...as can constipation.re the er nurse, i don't understand why you wouldn't have been immediately eval'd.even if the triage nurse didn't know about ad, a bp of 200+/100+ is enough to warrant immediate assessment.leslie

Get a Medic Alert bracelet or pendant; and carry a note from your physician, which you have had copied and shrunken in size and laminated. You can do the same for some text which explains the basics in a nutshell.

Do you see a neurologist that works at the hospital? Maybe you could see if he could give an inservice and ask to tell your story there.

I did an inservice on autonomic dysreflexia in pregnancy when I worked L&D. Hope I did my small part to spread the word about this condition. The nurses I worked with had never heard of it but now they have

I actually just wrote an article about that for Complex Child Magazine! :-) I was inspired after caring for a patient who had a history of that. Very scary stuff! This patient was in the med-surg unit and although I'm sure they could figure out the patient was in danger, they might not have known to check for whatever was triggering the event in order to stop it.

Quote from NeoPediRNEven someone without a history of AD is in danger of stroking with a BP that high. Were you bradycardic?

Quote from No Stars In My EyesGet a Medic Alert bracelet or pendant; and carry a note from your physician, which you have had copied and shrunken in size and laminated. You can do the same for some text which explains the basics in a nutshell.

I don't know any physician or nurse who doensn't know what autonomic dysreflexia is. How strange.

I am far from the front-lines, being a student- but you are taking an excellent step right here by being vocal. It seems the overall tendency is to punt to the specialist or someone else though, doesn't it?Education is key!Thank you for sharing.

I know of this because of the old Discovery Health channel!

Quote from thehipcripIt happened to me during a recent trip to the ED for a gallbladder infection, the pain from which triggered AD. When I arrived at the hospital, my BP had spiked to 215/119. I was sweaty and had a severe headache, blurry vision, and anxiety, all of which are symptoms of AD. Yet despite alerting both the nurse who took my vitals and the triage nurse that I was having autonomic dysreflexia and showing them the wallet card I carry about AD, neither recognized my condition as potentially life-threatening -- I was actually taken back for treatment after a pre-teen boy with an ankle injury who was in no apparent distress. Luckily, I made it through this bout of AD without incident (except for the pounding headache).