Bell’s Palsy aka Spoonie Surprise

So… yeah. I woke up yesterday morning with an odd numbness on the right side of my tongue and my right upper lip. But had waaayyy too much to do, being in the middle of packing to move (movers come tomorrow, and we’re way behind on packing) so I went about my errands after thinking “hmm, that’s odd”.

By noon, the numbness had spread to most of the right side of my mouth, my right cheek had started twitching, and my right eye had started burning like it was dry. Really dry, like Sahara dry.

I mentally said several VERY vulgar words and took myself off to the bathroom mirror with my phone camera to do some stroke assessments. Effects limited to the face. Ok, that’s good. No problems speaking, and the fact that I remember all of the stroke assessment means my cognition is probably fine. Probably no need for 911. Did the rest of the detailed assessment and I was 99.9% certain I was dealing with Bell’s Palsy and not a stroke or anything else, really.

I’m going to interject some nurse education stuff here. What I did was damned stupid and you, Gentle Reader, should NEVER, EVER, EVER, do what I did. If you or anyone you love develops facial weakness or numbness on one side, you should hasten to an emergency department and let them determine what’s going on. I’m not a doctor, I am not trained or equipped to diagnose anyone, including myself. That we nurses and other medical professionals do it with ourselves and our families is well known, but it doesn’t make it smart. I’m not just saying this to cover my legal butt here. I’d feel horrible if anyone who read this decided they were having similar symptoms and postponed care only to find out they were having a stroke instead. When it is a stroke, time is brain. Let the professionals figure out what’s going on, don’t waste any time.

Anyway, I didn’t delay care for long, because even though I was pretty certain it wasn’t a stroke, it’s imperative with Bell’s Palsy to get steroids started as soon as possible, so I got into my doctor’s office quickly, got my diagnosis confirmed by the doc taking walk-ins (love my doctor’s office), and got a shot of steroids in my butt. I’ll be on a high dose of steroids for a week, tapering off — hello, jitters from hell — and with any luck the facial paralysis (which is MUCH WORSE this morning) will start reversing soon and be over in a few weeks.

I *so* didn’t need this right now. Which of course, is why it hit right now. The medical literature insists that Bell’s is not caused by stress. However, the main culprit in Bell’s is a virus called herpes simplex virus 1 (HSV1). This is the virus that causes fever blisters on the mouth (typically), and yes, its close sibling HSV2 is the dreaded genital herpes. You can get HSV2 on the mouth and HSV1 genitally as well, but they tend to prefer their normal sites of infection. I have horrible fever blister outbreaks, my primary doc has never seen anything like mine. It’s been confirmed to be HSV1, so it’s most likely the cause of my Bell’s.

My fever blister outbreaks have specific triggers, and while stress doesn’t usually cause it all on its own, like so many other chronic conditions like my autoimmune ones, stress primes the pump and makes flares or outbreaks that much more likely. So the stress of the move very likely primed the pump and my lovely reservoir of HSV1 virii decided to jump from one nerve bundle to another and play havoc with my life this week. I developed an allergy to the medication they treat HSV with, so all we can do is hit it with the steroids to take out the inflammation.

Oh, and having migraine disorder also puts one at higher risk of Bell’s Palsy as well. Joy.

Once one has had an episode of Bell’s, they are also more likely to have repeat episodes. So I have that to look forward to.

Life as a Spoonie is often one surprise like this after another. All I can do is roll with it and try to keep a positive attitude. After all, Bell’s Palsy is a temporary and treatable condition. It’s annoying as all hell, but it’s not debilitating.

So for all my Spoonies out there, I hope you’re able to find at least one positive in your life to focus on today.