A very important learning curve, possibly the most important thing to know about a high level spinal cord injury. Through this chapter I have taken the posts from my blog including dates and the cause of autonomic dysreflexia and how we fine tuned and resolved each time, the problem is it’s extremely dangerous, it’s a medical emergency, not many people are aware of it (including hospital and emergency services!), but as you will see, it comes quickly but can be (with the correct preparation) resolved quickly.

(The following is my own choice to bypass emergency services, always go there first, I made my own choice to do this – ALWAYS BEST FOR THE PROFESSIONAL ‘S TO ATTEND)

My way of coping (please see above statement) is if you can bypass the emergency services and have a couple of people close to you trained to assist and resolve (I’m lucky to have my mum, sister and a friend (Andrew Butcher) able to change my cahtherter, all work/live within 40 minutes from me) if they are not available then my district nurse team.

If you are to call 999/112/911 ensure you state clearly to start that your consultant and Doctors told you to call stating it is a MEDICAL EMERGENCY, DANGER OF DEATH IF NOT ACTED ON IMMEDIATELY

To follow are posts and action taken to resolve each major autonomic dysreflexic episode during my ten years of paralysis, posts are from latest to earliest, you will see how we refined the action needed

I can tell now early signs (my own experience, yours may differ)

– You start hearing your own pulse
– You feel your pulse in your neck, low down on the right side
– Then the pulse travels up the back of your ear
– Head ache starts
– Head feels like it’s splitting with each pulse
– Autonomic dysreflexia!

Things that often trigger autonomic dysreflexia

• bladder or kidney infection
• gastric ulcers, gallstones, other GI disturbances
• tight clothing, leg braces, shoes
• lying or sitting on hard object
• pressure ulcer
• ingrown toenail
• insect bites and other minor injuries
• blood clots
• extreme temperatures
• rapid changes in temperature     
• sexual activity
• menstruation
• pregnancy
• vaginal infections
• positioning problem
• lack of circulation to limbs
• stretching and physical therapy exercises
• drug stimulants

Actual accounts from my own experience with AD, taken from www.alexwillwalkagain.com

Cahtherter blocked causing autonomic dysreflexia, July 19th 2015
Jennifer rescued… But autonomic dysreflexia woke me!

Autonomic dysreflexia two days ago…. Blocked catherdar.. Then again today.. Just going to the toilet! I made it six weeks tho, April 9th 2015

Dec 8th 2014
Blocked catherdar! Jennifer changed it very smoothly, first time ever, along with autonomic dysreflexia in the evening and again in the morning! (Impacted bowel)

Aug 26th 2014
Blocked catherdar…. Ad mum changed it at 23:00 hrs my hero again

July 9th 2014
Blocked catherdar and autonomic dysreflexia…. Not a good day 2am until 4pm!

Feb 22nd 2014
Blocked catherdar – Saturday night.. Out of hours! Changed by mum
My hero again

Feb 9th 4am! 2014
Kinked catherdar tube…. Not being able to move just isn’t enough!

Jan 25th 2014
Had an autonomic episode! First one in a while… All ok now
Lucky to have my mum about, changed it like a pro!
Love you mamma

August 4th 2013
Never a good start to my day… But still out with dexter in the semi sunshine
204/110 with a pulse rate of 37…. Extreme!

July 1st 2013
But the nurse is missing?
…….. Found them so change back on, will it be 15 seconds of pain or two weeks of AD??
Update: all went ok

March 9th 2013
15:00hrs

March 4th 2013

Changing my catherdar… Went wrong! Autonomic dysreflexia kicked in shooting my blood pressure through the roof

Things CAN always get worse!!

THIS CAN QUICKLY LEAD TO DEATH!
Please learn about it if you know a spinal cord injury “victim”

August 19th 2012
S,196 D,138 heart rate – 40
S,167 D,107 heart rate – 39
@ 05:00 hrs I ended up in an AD situation (but lacking the head ache!!), this time bowels?? No rhyme or reason.. It won’t be the last time, autonomic dysreflexia – not a friend! But always about in my world, my normal S,110 D,70 heart rate – 50

January 7th 2012
Blocked again! Mammy saved the day tho – the nurse’s work “out of hours” at the weekend, your ment to ring then wait and hope you don’t die from AD HIGH BLOOD PRESSURE leading to a possible stroke… So great being me!

Dec 10th 2011
My catherdar blocked causing high blood pressure resulting in autonomic dysreflexia! Mammy saved the day! She changed it, I called the nurses and the “emergency” number I have… They give no ETA and the last time it was five hours! So mammy did it, just as the problem was resolved the nurse came! I now have weekly bladder wash outs and four weekly catherdar changes until the new year when they will put a camera up my lil willy to look in my bladder for stones, so many great things happen to me!
All I wanted was a beer today!!

Dec 8th 2011

i completed 9.5 miles on the FES bike then 4miles into the second session the catherdar blocked (again) causing the start of AD… (again) but then by-passing the catherdar ((voluntarily) peeing) reduced blood pressure, im now booked into stoke mandaville in the new year for them to “have a look” inside my bladder! sounds interesting??
the joys of me!

May 31st 2011

After a week full of AD! Any irritation below my injury point was setting me off, at least six episodes, I felt ok yesterday but took it easy to recoup, today I have done two sessions on the RTI 300 FES Bike 9.3 and 9.6 miles without incident, I canceled Steve because that would be to much stimulant and would set off AD, but after FES and I’m now on antibiotics for an infection on the catherdar site I seem to be back on track – I even had a hair cut so I’m more good looking!

May 25th 2011
What is “Autonomic Dysreflexia?”
Autonomic dysreflexia, also known as hyperreflexia, means an over-activity of the Autonomic Nervous System causing an abrupt onset of excessively high blood pressure. Persons at risk for this problem generally have injury levels above T-5. Autonomic dysreflexia can develop suddenly and is potentially life threatening and is considered a medical emergency. If not treated promptly and correctly, it may lead to seizures, stroke, and even death.

AD occurs when an irritating stimulus is introduced to the body below the level of spinal cord injury, such as an overfull bladder. The stimulus sends nerve impulses to the spinal cord, where they travel upward until they are blocked by the lesion at the level of injury. Since the impulses cannot reach the brain, a reflex is activated that increases activity of the sympathetic portion of autonomic nervous system. This results in spasms and a narrowing of the blood vessels, which causes a rise in the blood pressure.
 
Signs & Symptoms
Pounding headache
(caused by the elevation in blood pressure)
Goose Pimples
Sweating above the level of injury
Nasal Congestion
Slow Pulse
Blotching of the Skin
Restlessness
Hypertension (blood pressure greater than 200/100)
Flushed (reddened) face
Red blotches on the skin above level of spinal injury
Sweating above level of spinal injury
Nausea
Slow pulse (< 60 beats per minute) I woke up with it at 05:30hrs! Rang the out of hours EMERGENCY number... It feels like someone is smacking the back of my head with a bat.. I need to live with a spinal doctor!! The local GP's and even ambulance staff are unaware of the severity of the situation, how quickly and dangerous it can be! It will happen again to me... It's not "if" but "when" and all they ask at the out of hours call centre is a load of un-nessasery (at that time) information... It's dangerous and so frustrating! It's a situation that normally is easy to resolve but left unattended WILL lead to a stroke or death! And it's now 08:35hrs and all I have been able to do is leave a voice mail.. Luckily my dad could come and deal with the immediate problem, giving me time to wait for a nurse January 28th 2011 Another episode at 04:00hrs with a blood pressure of S 187/D 107 then today S 229/D 120! While the catherdar was changed.. I believe this was down to the water being “hard” and furring the tube with sediment.. I now have a new graphite filter now so should minimise the risk once again… My normal blood pressure is around S 110/ D 70!  The problem here is if it’s not acted on quickly it can lead on to bigger problems, the pressure rises until the problem is solved. The great thing here is – it’s not IF it happens again… But WHEN! Just another problem for me! Autonomic Dysreflexia!!! AD… Jan 20th 2009 Autonomic Dysreflexia… its not that well known, but people should be aware of it.. since my injury i have had one episode in Miami (due to a urinary track infection) and twice here when i was in hospital at the Royal Buckinghamshire hospital, i now score 77 out of 112 for sensation on the AISA Scale, I am graded as B1(possible C) in motor function, in Miami at one stage i was an A.. so again  watch this space. AISA scale : A = Complete: No motor or sensory function is preserved in the sacral segments S4-S5. B = Incomplete: Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5. C = Incomplete: Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3. D = Incomplete: Motor function is preserved below the neurological level, and at least half of key muscles below the neurological level have a muscle grade of 3 or more. E = Normal: Motor and sensory function are normal. Due to the increased sensation (and muscle control) i have a reduced risk of Autonomic Dysreflexia.. but its still there, it starts with a “pulsing” behind my right ear, then you feel it up into your head increasing in pain, until the problem is resolved.. so things need to be delt with quickly! once resolved the pain resides instantly.. this is my experience of it. Saturday i didn’t do physio.. as i was preparing for it, when my catherdar blocked  resulting in an autonomic dysreflexia episode, my mum came to my rescue and changed it (without any drugs) my blood pressure went through the roof.. we called an ambulance and they were completely useless! in a situation like that.. i know my bp’s high! i have a drug that will reduce it (but is really dangerous because it can lower it too much) so i need to find out what the bp was…. and the ambulance woman (who had said, she had never come across autonomic disreflexia before) would not listen to me, plus she was the slowest woman to.. i was going to be taken to hospital.. and she then wanted to hoist me (which takes ages) they have a “pat slide” but still wanted the other way!! luckily my physio and a district nurse (thank you Sue) came at this point.. but by now my vision was fading and i was panicing more.. then they took over.. my mum had done the main part.. but they resolved the situation! that ambulance was more like a taxi with blue lights and a moron driving – in a situation like this you need to act fast! and especially if you don’t know – FOLLOW INSTRUCTION!! – here is a definition of autonomic disreflexia! The Five B’s When a person has an AD crisis, nurses or caregivers use the Five B’s to help get the person out of the crisis.  These are:  1. BED UP:  When the person starts to show symptoms of AD including severe headache, put the head of bed up and the feet down.  This causes the blood to flow back by gravity away from the head. 2. BLOOD PRESSURE:  If it's available, check the person's blood pressure immediately.  If it gets above 150 at any time during the crisis and cannot be brought down within a few minutes, call 911.  The person's doctor may have prescribed blood pressure medication to use in a crisis, and it should be in the AD kit. 3. BLADDER:  Does the bladder need to be emptied? When cathing someone, use lidocaine jelly to prevent more pain during the crisis.  If no one is around who is qualified to cath the person, call 911 and have medical personnel do it. 4. BOWELS:  If the bladder care did not solve the problem, check to see if the person needs to have a bowel movement.  Use lidocaine jelly to assist in this process and decrease any further irritation that can add to the AD crisis. 5. BODY:  Check the rest of the body.  Is the person lying on something?  Is a brace or piece of clothing too tight?  Is the person in an awkward position?  Is he or she too cold or too hot?  Start at the feet and visually work your way up and down the body, both front and back to see if you can figure out the problem.