The Most Disturbing Symptom of My Dysautonomia

There are a lot of things I hate about having dysautonomia. The dizziness, the lightheadedness, the tachycardia, the salt, the fluids, the compression socks (even though mine are cute), the occasional need for a wheelchair in public that makes people question me because sometimes I can walk and sometimes I can’t (many people don’t understand invisible disabilities.) But one of the main things I hate about dysautonomia is part of the reason I have been writing less and less as time goes on, and why what I have written hasn’t exactly been stellar.

Brain fog.

This is not just a getting-older-I-forgot-where-I-put-my-keys kind of thing. I am not normally a forgetful person. I remember things I have no business remembering (ask my childhood friends).

 

What I’m talking about is actually quite disturbing to me.

Brain fog in dysautonomia, specifically POTS, is likely caused by the physiological decreases in cardiac output and cerebral blood flow that occur in the upright position in patients with this disorder. (And remember, we already know my cardiac output decreases in an upright position thanks to my hemodynamic test.) Patients often describe symptoms of lightheadedness, impaired awareness, mental fatigue and cognitive deficits. Interestingly however, symptoms are not typically relieved when the patient returns to a supine (laying down) position. I thought I knew what brain fog was, but now I realize I was completely missing the picture before.

Now, whenever I have a thought about something, I need to act on it or write it down within about 30 seconds, or I will forget it. This is the one that happens most frequently out of all my brain fog manifestations. When I got the idea for this post, I had to immediately create a draft with a title telling me what I wanted to write about to remind me I even had the idea in the first place. When I was just searching for a sticker to put in my planner to remind me to do something, I was searching for the sticker, searching for the sticker…and then suddenly could no longer remember what it was I wanted to put in the planner to remember. Aaaand it just happened again with a different idea: I get an idea. I look for a sticker. But as I’m looking for the sticker, I forget what the idea was and therefore what kind of sticker I’m looking for. There’s that 30-second rule again…

I have trouble remembering what things are called. Last week I called a pickle jar “the thing that the pickles are in” because I couldn’t remember the word “jar.” And this wasn’t just a “brain fart;” I literally could not remember the word.

I have trouble spelling words. I was writing in my journal a little while ago and it took me a good five seconds to remember how to spell “where.”

I forget if I’ve taken prn (as needed) medications, like an antiemetic or painkillers. So if my symptoms don’t go away, I don’t know whether it’s because I thought I took the pills and I didn’t, or if they just didn’t work. So I’ll usually end up struggling for a few hours longer because some of this stuff you can’t safely double dose. I may need to go back to writing down every time I take something, if I can remember to write it down in the first place.

This one isn’t as big a deal, but I forget to respond to emails and comments on my blog, Facebook, Instagram, etc. Please don’t hate me if I don’t respond; I may have just forgotten.

These things may not sound like a big deal to some of you. I know you may be thinking, “Oh, I forget things all the time.” But this is different. I would sometimes forget things in the past, too; it’s a pretty common occurrence for anyone in general.

But. This. Is. Different.

I can’t adequately express how frightening some of these things are when they happen. Occasionally misspelling a word, OK. It’s more of a fluke than anything, just rushing as you’re writing and your brain mixes the letters up. But how often when you’re writing do you actually forget how to spell something you’ve known how to spell since at least kindergarten? My brain doesn’t normally forget. So forgetting ideas I had? Word-finding difficulties? Forgetting how to spell? Forgetting if I took medications? This is not characteristic of me at all. And I really don’t like this new version of me.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Cattallina.