From 0 to 100 – My Medical Scare That Put Me to Sleep (Part 1)

I recently had a pretty major shift in the status of my health in a pretty awful way. I was living and loving "normal life," as I had just recently been allowed to go back to work part-time.

But only a couple of months in, I had a major medication reaction that led to anaphylaxis.

Dealing with extreme exhaustion

The onset of this illness hit me like a tidal wave, and I had no immune system to fight off my body's response to the medication. With that wave of illness and then another wave of strange symptoms came incredible exhaustion – not "just" tiredness or normal fatigue.

This type of exhaustion was so evident – after an event of syncope, I would sleep for 11 hours. Yes, 11 hours!

I'd then try to get some nutritional supplements down without becoming ill, then go right back to bed for the rest of the day. For someone who has struggled vastly with sleep disorders for their whole life, when your sleeping pattern changes, the things around you quickly change, as well.

An increasingly alarming situation

That wasn't me, though. I can't even take naps without messing up what a person with severe insomnia would refer to as a "normal, weird sleep cycle."

I began to feel extremely fatigued just walking from room to room. And the number of times I would experience syncope was at an alarming, terrifying rate.

As the days went by, more of these events happened at an extreme rate to the point where I was not safe at home alone. The only time I knew I was safe was when I was lying down horizontally or sleeping. And of the 24 hours in my day, at least 20 of them were spent dead asleep.

I knew something was wrong

At this point, I knew something was wrong. I had just gotten out of the ICU from a major adverse reaction (anaphylaxis) to the medication I had been administered just days previous, so I made an assumption that things would slow down and I would regain my strength and stamina back. Oof, was I wrong. Slow down – THAT, I certainly did!

A perfect storm to trigger POTS episodes

Of course, there is a medical (re)diagnosis, post orthostatic tachycardia syndrome (POTS), and explanation for the sudden onset of the incredible exhaustion I feel, but this new feeling of being out of breath walking to the kitchen is a first for me.

The medical diagnosis, POTS, is not something I'm unfamiliar with. In my early college years, I did all of the sweat and tilt table tests, resulting in a confirmation that I had a form of autonomic dysfunction, a mild case of POTS.

Apparently, with the magical concoction of dehydration, malnutrition, a very suppressed immune system, and my anaphylactic reaction, it was a perfect storm to trigger a massive series of POTS episodes, which you may see me refer to as events or syncope.¹

There's more to my story

There is a lot more of this story to come – both good and bad. There have been some major events that have had a massive impact on my sleep, my sleep quality, and eventually, some scarce beginning of feelings that things will/are starting to get better very slowly.

I also talk about some of my current treatment plans that my care team has collaborated on, involving my input. (Always be involved in your care team's decisions!)

Continue reading my story in Part 2!