Tuesday, August 6, 2013

AD at 3 AM

After my accident I went to a rehab hospital to learn how to live as a disabled person. I would never physically be the same, so my mom and I needed special education and instruction to learn the finer points of living with a high-level spinal cord injury (SCI). I was starting a new life, and there was a lot to learn since I now had to be aware of lots of things that were never an issue for me when I was able-bodied.
One of the things we learned about was Autonomic Dysreflexia (AD) which is something that affects people with SCIs. Autonomic Dysreflexia is a potentially life-threatening condition that can be considered a medical emergency, requiring immediate attention. AD is a response to painful stimuli below your level of injury (where your spinal cord sustained damage) that you can't feel, but your body recognizes as painful. (Meaning something is causing you pain/discomfort, although you might not physically be able to feel it since the majority of people with SCIs have impaired sensation.) [If you're interested in more information about Autonomic Dysreflexia click here for a great overview.]

There can be any number of things that cause the pain that brings on dysreflexia. Here are some examples:

– full bladder (the most common cause)
– full bowel
– uterine contractions, especially during childbirth or delivery
– tight/restrictive clothing
– pressure ulcer
– blood clot in the legs
– a cut or abrasion
– sunburn
– gallbladder attack
– ingrown toenail

and a list of symptoms:

– very high blood pressure 
– blurred vision
– throbbing headache
– sweating
– flushing
– raised body hair
– nasal stuffiness
– increased spasticity (muscles spasms)
– nausea

I had my first two experiences with dysreflexia at the end of June. However, up until that time I'd never gotten dysreflexia before, which I think is amazing since I've been paralyzed for nearly 10 years. Dysreflexia is fairly commonplace and something that paralyzed people can expect to deal with from time to time. Some people are afflicted with horrible bouts of dysreflexia on a regular basis, and for others it's more sporadic. I'm so glad that I'm not one of the ones that gets dysreflexia often (or at all, up until this past June) because I'm sure it's really debilitating/discouraging.

Now that I've joined the AD "club," I'll tell you about my experiences with dysreflexia. One afternoon (about 30 minutes after my mom and sister Chandra finished giving me my bath) I was watching TV while my mom and sister got dinner ready. My head started hurting really badly, and it felt different than any headache I'd ever experienced. It wasn't your typical headache, but more of an acute, sharp  pain. After my bath I'd also been feeling like my bladder was full, and I thought that maybe my catheter wasn't draining properly. I asked Chandra to check it out to make sure that it looked okay, and she said  that everything appeared to be fine.

Even though I've never experienced dysreflexia firsthand, I'm well aware of the signs/symptoms, so once my head started throbbing, I was positive that I was experiencing dysreflexia, and that the cause was a full bladder. [Sometimes catheters can be positional, meaning that they aren't draining as effectively as they should (or at all) due to the catheter and/or bag that collects the urine being in a weird position, or there may possibly being a kink in the tubing, etc. This is actually quite common and just takes a quick second to remedy.] I called Chan again and told her what was going on and she helped me out. We did a little adjusting of the bedside drainage bag, and then my bladder was able to drain.

My second experience with dysreflexia was much more serious and happened about two weeks later. I woke up in the middle of the night and I was in severe pain. I didn't know what time it was (because I don't sleep in my contacts and I take my glasses off when I go to bed) but all I knew was that something was seriously wrong with me. The back of my head/neck (think where your skull and spinal column meet) was throbbing/pulsing. The pain was excruciating and it was far more intense than the headache I'd had the first time I got dysreflexia. That was intense enough; but I couldn't believe how much worse the pain was the second time around.

I was in absolute agony, and I'm pretty sure it was the worst pain I ever remember experiencing. With every beat of my heart (which was beating pretty quickly) I would receive another burst of pain at the base of my skull. I clicked my tongue a few times, which is what I do to wake my mom up if/when I ever need her at night. (We have a baby monitor, and that's how she's able to hear me, even though we sleep on different floors of the house.) It only takes her a couple minutes to wake up and walk downstairs, but on that night those two minutes seemed to take forever! When she came into my room I said, "Quick, turn on the light..." (I'm usually very calm, but I was in so much pain that I was trying to let Mom know something was seriously wrong so she would wake up faster. (NOT that I fault her for moving a little slowly; I had just woken her out of a dead sleep, after all!) :-)

I could tell that my bladder was full. Even though I'm paralyzed I can still feel, and it felt like I had to pee really badly. I had my mom check to see if my bedside drainage bag was draining, and she said it appeared to be draining just fine. I knew my bladder was full, so I told her she needed to change my catheter. We paused for a brief moment to offer a quick prayer, and then my mom got down to business. (My mom is a pro at changing my suprapubic catheter, since she's been doing it every month for the past 9+ years. In the beginning it was something that terrified her and always got her adrenaline pumping.) She went down to the basement (where we keep my medical supplies), got a catheter and a catheter insertion tray and then changed it. It probably was only 15 or 20 minutes tops after I woke Mom up before she had it changed, but when you're in unbearable pain, you don't feel like time could move any slower!

Getting that new catheter in felt sublime! (Words I never thought I'd utter, considering that the actual removal/insertion process causes pain, but being able to pee never felt so amazing! I know that this is probably TMI and it probably doesn't help that I'm not using ladylike terminology like "urinate" or "go to the bathroom," and am opting for the more uncouth phrase "gotta pee." But imagine the sensation of having to pee so badly that you WISHED you could PEE YOUR PANTS, but you physically COULDN'T, not to mention the discomfort of THE WORST headache of your life as the icing on the cake... now that puts things into perspective! :) I'm very open and honest when it comes to paralysis and what my life is like, and I just like to tell things the way they really are in order to "keep it real!"

I went back to bed about 4 AM, and still had a terrible headache. When I woke up a few hours later my head still hurt (although not as badly as it did in the middle of the night), and my neck was pretty sore, too. Actually, it took a week for the headaches/neck pain to go away completely. Even six weeks later, I'm still get twinges of pain at the base of my head, which is something new that wasn't happening before all this started.

If I hadn't had that first experience with dysreflexia, I would've been much more alarmed when I woke up in the middle of the night in excruciating pain. Because of my first experience, I was more prepared to deal with the second, more serious onset of dysreflexia, and I was better able to direct my mom as to what I needed her to do for to fix the discomfort in my bladder so that the dysreflexia would subside. As I said earlier, dysreflexia can be life-threatening since it causes your blood pressure to go sky high, which can cause you to have a stroke.

I'm glad that my mom and I make such a great team, so that she could help me resolve my issues.


Julie said...

That must've been so scary. I'm so glad your Mum heard you when you clicked your tongue & was able to get things sorted out. The power of prayer really does work:)

I hope your headaches & the pain eases soon. Are there any pain killers that you can take for this or don't they help very much?

I don't like you using words like pee & about the bag etc. We say loo here rather than bathroom & I think explaining it with the words you use is much more down-to-earth.

Thank you for being so honest in your blog, it's something that I really appreciate & helps me to understand a bit more about what your life must be like.

Take care.

Julie said...

I meant to say I don't mind you using words like pee, not that I don't like you using them. The edit part didn't come up properly.

Heather (Paralyzed with JOY!) said...

Thanks, Julie; I knew what you meant! :)

Kate said...

How frustrating! Thanks for sharing, I am always fascinated about your your medical condition and the territory that comes with it. Thanks for keeping it real! :) Love ya!

Lisa said...

Such an enlightening post... I've never thought of pain as a tender mercy but without the Autonomic Dysreflexia you could have an even more serious medical problem! So sorry that you have to experience the pain and hope you are pain free soon. Keep on blogging, girl. You are a fantactic writer!

Kathe said...

you and your mom are one of the most amazing people I know. I didnt know about dysreflexia. You are so strong Heather and I can't imagine the pain you went through that night. You continue to inspire me...I always enjoy reading your blog. You do such a great job with it.

Anonymous said...

I found your blog via 2 Kids A Mini Van and a Mortgage.
What in inspiration you are! You have the best attitude.
I like you click of the tounge, to get your Mama's attention! :-)
Thanks for sharing your story!

Leah Mastilock said...

Sounds awful! At least, as you said, you were more prepared this time. I love the you're focused on the positive in life and I look forward to your future posts! I'm co-hosting the Bloglovin' hop and am now following you!

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