This is a long post so I’ve split it in two parts for readers’ convenience.
As I’ve covered previously, the last few months I’ve traveled and trained more than in the last year or more after my diagnosis. My cortisone replacement therapy – that I felt was I finally starting to make sense of – proved to be completely inadequate for the compound stressors I put myself under. Of course, my whole life from the diagnosis forward has been a one big learning curve. At times, there seems to be a lot banging your head again and again to an old but hardy wooden door full of rusty nails and splinters…
It seems almost laughable that as I have secondary adrenal insufficiency, I actually am lucky compared to primaries. I don’t lack aldosterone, the hormone body uses to control blood pressure, so my possible adrenal crisis situations are much less common, not so fast occurring and far less deadly. Still, feelings of passing out and losing control of your body are never pleasant, and they’re scary as hell. Since my diagnosis, I’ve had two close-call scares of pre-adrenal crisis. In hindsight, both could have been preventable – maybe.
In adrenal insufficiency the adrenal cortex – the outer part of adrenal glands – dies, but the adrenal medulla on the inside keeps on working just fine. Actually, the adrenal medulla is part of our sympathetic nervous system. In distress, our sympathetic nerves signal the adrenal medulla to start churning out adrenaline (also called epinephrine) and noradrenaline. They enter the bloodstream, and whoosh! Your heart starts to beat faster. Your muscles get more oxygenated blood, ready to burst into action. Your digestive organs go to rest mode. Your pupils constrict so you’ll see the danger better. Your other senses sharpen as well.
This fight or flight -response has evolved for a reason, to keep us alive in the face of danger. But what if the danger / stressor is an angry boss yelling at you about a job deadline? Or a nice granny driving in front of you at leisurely 50 km/h on a no-pass zone with 80 km/h speed limit when you’re late from a meeting? Banging your fists on the wheel – or your boss’ ugly face – while shouting obscenities as your forehead veins bulge out doesn’t appear to be a winning solution anymore – at least in hindsight. Today’s stress is more complex than running for your life as a hungry saber-tooth is coming after you. It can still be as deadly, though – at least if you suffer from adrenal insufficiency, where any kind of stress can literally kill you.
After the adrenaline-powered stress response that starts to kick in in seconds, your adrenal cortex follows suit with cortisol aka the big bad stress hormone. That is, with people who still can produce cortisol… With AI, when we’re out of cortisol it’s do or die. Literally. Our body panics as the cortisol it needs to keep on functioning runs out or is absent altogether. The only way to keep us up and fighting is to release more and more adrenaline to prevent blood pressure and glucose levels from crashing and us going into coma and eventual death.
My first really frightening pre-adrenal crisis situation happened at our holiday in Copenhagen. Read more about my trip here:
In Copenhagen I had my back tattooed in a long, over 10 hour session on Thursday. I had to take a lot of hydrocortisone during that day – I estimated I took over triple my normal amount and the day went really well. But… Just as I’d congratulated myself on perfect dosing for my tattoo session, I totally blew it on Friday. First I forgot my afternoon HC dose. Really. I hadn’t forgotten a dose of hydro for over months then. When my alarm rings – I have med alarms on my phone and FitBit bracelet – I instantly take the pill or otherwise I’d forget. Well, somehow the vacation and an unfamiliar setting made me do the mistake I normally never do. I simply put out the alarm and continued typing on my laptop, somehow thinking I’d take my pill later. Guess who forgot the whole thing?
Later on Friday evening we went to the Tivoli amusement park with my boyfriend to celebrate our last night at Copenhagen. I was already feeling weirdly anxious and as we tried to find a restaurant to get something to eat, I was getting really angry and aggressive all the sudden. The first signs of adrenal rush. When we found an Italian place we liked and went in, I had progressed to feeling dizzy and had a minor headache. I’d taken two 10 mg tablets of HC under my tongue when we waited to be seated but they had no effect. I was getting worse by the minute. The room was spinning slightly, and I was light-headed, feeling drunk, and unable to focus my stare. Cold trickles of sweat ran down my back and my heart raced. It was nearly 45 minutes since I’d taken the extra cortisone.
I was scared. I took another 20 mg of HC and drank nearly a litre of water. I’d never had to inject myself before. The first aid in adrenal crisis or a near crisis situation is to give yourself, or even better, have someone to give you a shot of 100 mg of hydrocortisone (in Finland, Solu-Cortef) in liquid form intramuscularly, usually in the thigh, where it absorbs instantly into bloodstream and can save your life. I already told my boyfriend that if I won’t start feeling better soon or will pass out, he’d have to inject me if I’m unable to do it. Thankfully after sitting another 30 minutes or so, drinking more water and eating a really salty pepperoni pizza I started to feel better. I could stand up and not faint. I didn’t want to ruin our evening, so I said to my boyfriend who was of course really worried, that I’d be okay and we should go and have fun as I had already bought us unlimited ride tickets. My body just wasn’t in the cue of having fun…
When we got out of the restaurant I was still in total “fight” mode and still felt antsy, angry and aggressive. Everything annoyed me. People walking too closely or laughing too loud. Other noises. Bright lights. The guy who nearly brushed my jacket with his cigarette. The middle-aged woman who sat too widely on the bench when I needed to sit down or I’d faint and didn’t give me any room. I wanted to punch someone in the face so hard to break their nose. Someone. Anyone. I was fuming. And my poor boyfriend was there in the middle, trying to keep me calm and prevent me from mutilating some poor bystander in my adrenaline raged state, at the same time worried about my health and whether I was fine, or manic, or something else.
It took over an hour of walking around the amusement park and eating a bag of candy, lots of ice-cream and other treats to get my blood sugar to rise until I felt any better, and then I was so tired the only thing I wanted was to get back to the hotel and fall asleep. Needless to say, going to any park rides got cancelled that night. At least, I didn’t end up in a Danish emergency room. But I was more than slightly embarrassed the next morning after going crazy on my boyfriend…
End of part one, more to follow: