Disabilities Spinal Cord Injuries

The Battle with Autonomic Dysreflexia

What is Autonomic Dysreflexia?

Autonomic Dysreflexia (AD) is a very dangerous side effect for those with spinal cord Injuries. According to Miriam Webster’s Medical dictionary, Autonomic Dysreflexia is  “a disorder of spinal reflex activity occurring in those with spinal cord injury that is characterized by a sudden onset of hypertension, bradycardia, excessive sweating, and headache”.  These are just some common symptoms, each person is unique when they have episodes of AD. It frequently occurs early after an injury, may go into remission but often occurs with a higher frequency as time progresses.  In common language, a sensation or stimulus is not transmitted to the brain.  Examples are full bladder or bowel, injuries such as cuts or burns, overheating, becoming too cold, being in pain, pregnancy contractions, and sexual intercourse. tight clothing, wrinkles in sheets, or pressure on a part of your body that you may not feel. The list is huge. The normal body transmits these stimuli to the brain and a person reacts to correct it.  But when you have an SCI, these signals don’t get to the brain. The blood vessels become constricted, causing the high blood pressure.  Since the original noxious, or sometimes non-noxious, stimulus never got to the brain, the body doesn’t know to kick in the BP regulation system. Autonomic Dysreflexia is very dangerous.  It can cause stroke, heart attack and even death if the blood pressure isn’t reduced.

My Experience with AD

Blood Pressure CuffI had my initial episode of AD shortly after my first spinal surgery in 2003.  They removed my foley catheter but didn’t realize how quickly my bladder filled up and I could not urinate on my own.  Within a very short time, my head felt like it was going to explode.  I had severe pressure behind my eyes, felt flushing on my face and my blood pressure shot up to around 230/115. My normal blood pressure is around 115/74.  I could see the urgency in my nurse’s reactions and the worry in my husband’s eyes.  They rushed me for a head CT which was negative. Once back in my room, one of the nurses questioned when I had urinated last.  Bottom line, they inserted a catheter and got well over 800cc of urine out.  The autonomic dysreflexia symptoms resolved rather quickly after that.

That episode helped me develop the habit of urinating frequently although eventually, that wasn’t enough, because I was unable to empty my bladder completely, resulting in high residual urine volumes.  This, in turn, caused me to start getting a lot of bladder infections.  I went on to have a Mitrofanoff procedure done. Developed in 1982, by Dr. Mitrofanoff in France, a conduit is formed from the appendix or other small piece of bowel, a valve built-in, attached to the bladder and the inner portion of the belly button (or skin on abdomen) and presto…an easy way to intermittently catheterize right through my belly button.  The valve keeps it continent. That’s the extremely abbreviated version of a Mitrofanoff.  In reality, it is quite a complicated surgery which requires the skill of an experienced urology surgeon.

I had very few episodes of autonomic dysreflexia from the bladder after the procedure because I cathed generally every 2-3 hour.  Sometimes I got just a small amount but I was able to keep the volumes down to around 300cc, which is what my urologist wanted.  As anyone with a spinal cord injury knows, bowel and bladder can both be severely affected and I was no different.  My bowel regimen could also bring on my AD at which point I would stop and resume either later or the next day.  When I had the Mitrofanoff placed they also did an ileostomy, where they bring out a section of the small intestine to drain into a bag, with the goal to bypass my colon and prevent the daily battles a person with an SCI has.  To a lot of people this is an embarrassing and scary procedure but for me, (I have medical experience) my only thought was why didn’t I do this sooner.  No more 2-3 hour-long battles with my colon at night and no more painful urethral cathing since the Mitrofanoff replaced that.  Sadly, in 2015, my Mitrofanoff developed stenosis and I had to resume urethral catheterizing.

Dynamic in Nature

As far as my Autonomic Dysreflexia, it clearly settled down for many years.  Eventually my colon, which was only bypassed but not removed, developed disuse syndrome. This causes it to over produce mucous.  I was right back where I was, spending mass amounts of time in the bathroom, so a decision was made to remove it.  Again, I was much relieved.  In 2015, I had a second spinal surgery at C6-7 for a left radiculopathy.  Ironically, it fixed that, but there must have been compression on my spinal cord not visible due to the hardware from the initial surgery because I lost significant function in my right arm and hand.  We also discovered that both my shoulders had multiple partial thickness tears and severe degeneration from times that I would use my manual chair or walk with Lofstrand crutches.  That was pretty much the end of my ambulation and I have accepted that I will be in a power chair from now on.

Fast forward to 2018, my Autonomic Dysreflexia reared its ugly head again. My pressure shot up to 220/110 with the classic signs (severe headache, eye pressure, flushing). Myself and my care team looked for every possible thing that could be causing it and could not find anything consistent.  Sometimes I would have a higher than normal bladder volume but the AD would resolve fairly quickly with that.  My AD seemed to be more like it was on a yoyo…everyday. My SCI specialist gave me Nifedipine to take to bring the pressure down but it never would come down to my normal…just to the threshold where I wouldn’t need to take another Nifedipine.

Finding the Cause

Eventually we started becoming suspicious of pain.  I was on Nortriptyline for neurogenic pain. It worked very well but eventually it started to bother my stomach.  It felt like I dropped a rock down every time I took one.  They removed me from that and tried Lyrica – as years before, I couldn’t stand the sedation.  Same with Cymbalta, deep sleeps and waking up in a total stupor.  In the meantime, I had an upper GI done which was pristine – no ulcer, no irritated spots – everything looked perfect.

Final answer, slow stomach emptying (common in SCI) and overproduction of acid. They started me on a medication to coat my stomach.  All the while, I had to rely on tramadol for pain and I was having daily AD episodes which left me with a blood pressure of anywhere between 148 and 200 systolic.  I started to see a pattern – the Tramadol would wear off, pain got worse, pressure went up.  After a lengthy discussion with my SCI doctor, we decided to retry the Nortriptyline since I was on the medication to coat my stomach, and also to go up on the Nifedipine when I had an episode.  I also take my Nortriptyline with pudding.

If my legs were working, I would have jumped for joy when a few days ago, my BP was 115/74.  It seems like the cycle finally broke loose.  I still have pain but am able to take less Tramadol.  I know the Nortriptyline is kicking in because I have the dreaded dry mouth syndrome.  I’ve got one more step up on the med to be where I was before so I am optimistic that we found the culprit.  I’m also realistic enough to know that I will no doubt have many more episodes of AD throughout my life.  It’s just one of those terrible side effects of having a spinal cord injury.

Helpful Suggestions for those with Autonomic Dysreflexia

Because Autonomic Dysreflexia is such a dangerous thing, I encourage anybody at risk for it, to research and learn as much about it as you can.  The Paralyzed Veterans of America (PVA) has a wonderful resource on AD as well as other spinal cord injury issues.  These consumer guides can be found in pdf form on the PVA website. While a lot of physicians are familiar with AD, there are many who are not. You need the tools to inform them.  If you’ve had AD previously, make sure you carry a card or wear a medic alert bracelet or necklace.

I would also encourage you to have an Autonomic Dysreflexia kit that goes everywhere with you.  It should contain at a minimum:

  • information about Autonomic DysreflexiaAutonomic Dysreflexia kit
  • any information unique to your situation
  • a blood pressure cuff and stethoscope or auto machine
  • a catheter if you self cath
  • medication that might have been prescribed by your doctor to bring your pressure down while you look for the source of the AD

I carry a manual cuff and stethoscope because I find them to be much more accurate.  I also have two kits.  One never leaves the back of my wheelchair and the other one is for home use.


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