I already posted about this on Twitter (and thereby Facebook), but I know some of you guys don't read those, plus I wanted to get all the details down. And then I put it off, but I need to stop doing that.

Okay. Last Tuesday I had an earache. The kids have had a cold so I figured I was getting that. Wednesday it was worse, and in the evening my tongue felt funny, like it had a coat on it. Thursday morning, when I woke up, the right side of my face felt sluggish and thick. I was having trouble doing anything with it. I didn't realize how bad it had gotten until my wife got home from her morning dentist's appointment and I tried to talk to her about it; I sounded like mushmouth because I couldn't get the right side of my mouth to move properly.

We called the doctor's office around noon, but nobody would be available until four. I didn't want to wait that long, so we went to the ER. After the usual poking and prodding I got my diagnosis: Bell's Palsy. What this means, in summary, is that some swelling tissue on the side of my head is impinging on my facial nerve, causing paralysis of the side of my face. (The right side, in my case.) This can be caused by a number of things, but sometimes it just happens and the mechanism is not well understood.

The ER doc prescribed me Amoxicillin in case I had a bacterial ear infection that was causing the swelling, and Valtrex, an anti-Herpes drug, for no particular reason. Apparently this is often done in these cases, although it hasn't been shown to have any real effects. I'm taking it anyway because if there's even a chance it will work I'm willing to try it, and two doctors and a pharmacist have assured me it's relatively harmless, and I know and trust two of those people.

The next morning the paralysis was actually a bit worse, so my primary care doctor added on a corticosteroid called Prednisone (to reduce the swelling - this is noted online as being the most effective treatment for this condition) and Prilosec (to combat stomach issues caused by same). She did this, bless her heart, from her vacation in Florida after taking a call from us on her cell, and told us we should call her back if anything got worse.

So that's what's up with me right now. Half my face doesn't work. The prognosis is basically unknown. A lot of cases of this go away (up to 85%), but upon digging into it it turns out that "go away" means that some of the functionality comes back. It might not be 100%, but at this point I'd take it. Some people take a long time to recover; one of my co-workers had it in high school for two months. Some people never do; Jean Chretien, former prime minister of Canada, lost the use of the left side of his face permanently. (A good line from that Wikipedia entry: he's "One politician who didn't talk out of both sides of his mouth".) So I'm just taking my various pills and hoping for the best right now. My wife has been an enormous help through all this, I have to say, both emotionally and in terms of the actual physical details. I don't know how I would be dealing with this without her.

I'm going to go into a bit more detail now, but I'll put it behind a cut for those of you who don't want to get into it, since it might be a bit more information than you wanted.

Things I Can't Do Yet

Wink. Well, I can do it with my left eye, but not my right. Luckily I don't wink that often, so it isn't a huge issue to remember which eye to do it with.

Raise my right eyebrow. I used to do this all the time. My right eyebrow was my go-to eyebrow for eyebrow-raising. So I have been slowly retraining myself to use the left one instead.

Spit. I don't spit a lot, but I discovered this one when I was brushing my teeth. Usually when you spit, you tense the muscles of your mouth to create a small point of least resistance, then exert pressure which forces material through that point, causing it to travel with some force. I can't tighten all those muscles, so the point of least resistance becomes "half of my mouth". The first time I tried it I ended up dribbling toothpaste all over the right side of my beard. I may be able to figure something out with tongue positioning or something; still a work in progress.

Talk. I sound like mushmouth and half of what I say is barely comprehensible. I can probably improve this by changing how I use my mouth; I've noticed some improvement already when I focus on using the left side of my mouth, so this may move into the second category at some point (although it'll never be great as long as this lasts).

Sing. I couldn't sing before, but now I can't even make noises that approximate singing. I just can't get the right mouth shapes at all. I started singing along with the radio the other day and it was horrifying. I don't know if I can improve this one at all or if I'm just stuck with it until this goes away (if it does). In the meantime I'm probably just going to skip doing this.

Listen to my music. I can't wear headphones because the earache is still there and it hurts like hell if I put headphones on. So about 95% of my music-listening time is now gone.

Smile. This is the worst one for me. I can do it with half my face, but the overall effect is more snide than friendly. In general, my expressions (as practiced in a mirror) have a very disturbing quality to them; there are lots of little muscle twitches that you expect to happen on both sides of the face and they just aren't there. My face isn't very emotive under normal conditions, and now I just look plain creepy. If there's anything that's going to screw me up if I have this for a long time, it's this; even just writing the last few sentences has been fairly difficult.

Things I Have a Workaround For

Blinking. If I push down hard I can blink both eyes. I can't wink, but this is better than some people get. It's helpful because it means I have to worry less about my right eye than some people do; one of the main risks even with a temporary bout of Bell's Palsy is that you can do serious damage to your eye if it gets too dry, so apart from forcing myself to blink more frequently I have eye drops and eye goop for nighttime, both of which I loathe using.

Drinking from a straw. My first try at this was pretty abysmal because I can't form a proper seal if I put the straw in the middle, but if I put it entirely on the left side of my mouth I can manage it. Since the pressure is inward rather than outward like with spitting, the natural tendency is for the other half of my mouth to remain closed anyway. So it just took a little practice to adapt to this one.

Drinking from a glass. This was a tricky one, but if I put the glass on the left side and press the rim against the right side and angle my head to the right, I can pull it off. It's hard and it takes a lot of concentration, but I can do it.

Eating. This one is actually a bit tricky as well. I have to take smaller bites, and it's easier to tear the food to pieces before putting it in my mouth rather than try to bite it. The right side of my tongue can't taste properly anymore, so if it's anything flavorful I have to stick it on the left side. (The partial signal I get from the right side makes things taste very disturbing if I let them get on both sides.) In general I focus on chewing on the left because if food particles get into my right cheek it can't compress to push them back into the center of my mouth; every time I chew on both sides I have to go rooting around in there with my tongue to fish stuff out after the fact. If this becomes a longer-term thing I can't keep doing this, because I'm sure focusing all your chewing on one half of your face is really bad for the muscles.

Sleeping. When I'm asleep, I can't be sure my right eye will stay closed. So we've been taping it shut with medical tape and putting a gauze pad over it ([personal profile] girlgonemad does this for me, since it's much easier for someone else to do things on your face while you have your eyes shut). The last two nights I have also tried a sleeping mask, because having both eyes totally occluded at once makes it easier to deal with and just to have an extra layer of protection on the vulnerable one. The tape site hurts like a motherfucker in the morning when I take it off, and my vision is blurry for a bit while it adjusts, but so far this has been working okay.

And that's it. There's nothing to be done about it that we aren't doing already, so it's just a matter of trying to keep it together and seeing what happens. How's everyone else doing?
ysobel: (hug)

From: [personal profile] ysobel

I don't have any useful advice, but I read this and I'm thinking of you. I have no experience w/ b.p. but I do know from freaky sudden medical shif, so I'm here if you want to talk. ♥ you are awesome. Don't forget that.
synecdochic: torso of a man wearing jeans, hands bound with belt (Default)

From: [personal profile] synecdochic


This completely sucks and I'm so sorry that you have to go through it. I think you've been the recipient of my flailing-about enough that I'm almost certain I could dig up half a dozen instances of you saying this to me, so I'm pretty sure you know it, but I'll say it anyway: it's perfectly natural to be angry, upset, and not dealing well with the uncertainty. Take care of yourself emotionally as well as physically, okay?

(Also from experience: if you need to take a little while to lose your shit entirely, may I suggest not punching a wall. If you are the "must express complicated emotional storms physically" type like I am, I have learned through painful experience that pillows work a lot better. *rueful*)

I love you and if there's anything at all I can do, even if it's just listening, you've done it enough for me that I don't just owe you one, I kind of owe you a thousand, and I am happy to cash some of those in whenever.

The rest of this comment is a few suggestions for how to cope with things temporarily. You should stop reading here until you are in a good place to hear them.

* For what it's worth, I do most of my chewing on one side of my face and have since my late teens when my wisdom teeth erupted (badly) and I only had them removed on one side. I've since had the other side's wisdom teeth removed, like four years ago even, but over a decade of training myself to avoid chewing on that side has kind of stuck. The only thing it's done is given me a slight tendency towards jaw-aches on that side, and the tricks I learned back when I was singing and acting regularly to loosen up my jaw (this article has some of them even though I didn't learn them for TMJ; I don't know how well they'll adapt to your situation but it might!) make those aches go away.

* If you're using tape daily, on your face, you may want to try paper tape or self-adhering ace bandages and not surgical tape. (Which you may already be doing, but still!) Surgical tape can be very harsh on skin when it's repeatedly applied and removed in the same place, and everybody reacts differently to the various adhesives, but a lot of people will react to surgical tape applied and removed repeatedly over time, and you mentioned it hurting in the morning when you remove it. (Even if you do keep with the surgical tape, or switch to the paper tape: the 8 hours or whatever that you're asleep is not going to be enough to get the adhesive to loosen up enough for easy removal; I'd suggest laying a warm wet washcloth over it for 2-3 minutes before trying to peel.) You may also want to try the method of putting the gauze pad down on the eyelid first, then taping over that; it's usually enough to keep the eyelid shut.

* The information I'm finding suggests that warm wet heat and gentle self-massage applied to the affected areas 2-3 times daily during the early days of the condition can help -- if nothing else, it will help to keep the muscles at the edges of the affected areas from flipping out because of sudden new usage. Since I know you're probably worried: it takes a very long time for facial muscles to start to atrophy, because they're so powerful and so well-developed, especially if you're doing basic exercises as part of your therapy. I mean, we're talking years here. If recovery takes you a year, or even two -- and I really hope it doesn't take that long -- you're going to be a little bit sore once you start using those muscles again, but you're not going to have muscle atrophy.

* Even with partial facial paralysis, there are many, many ways to learn how to compensate, and there are lots of therapists who can teach you how to re-learn how to speak and move your facial muscles. I found a very good list of facial exercises and a diagram of the facial muscles, both of which you are already probably aware of but I show my love via research. (When my Nana first had this happen to her, it was in the early 80s and they didn't have a lot of the knowledge they have today, but her doctors had her doing a lot of those exercises just to maintain as much control as she could over the facial muscles. Hers wasn't Bell's, it was post-stroke nerve damage, but it had a lot of the same treatment.)

* For self-consciousness and the feeling that everyone's staring at you, which I struggle with an awful lot, remember: you know how your body is supposed to move. The people you run into daily, don't. (Obviously coworkers, family, etc, are more likely to be familiar with 'normal', but even then: people don't look too closely.) Yes, there will be a certain amount of "something about how this person's face is moving is wrong" that will ping people's radar, but honestly? The human brain will fill in a lot of detail itself, and is very good at actively normalizing the input it gets, and once people you know stop actively thinking "oh, right, peas had that face thing happen" they will literally stop noticing that part of your face doesn't move right. As for strangers? Fuck 'em. They don't matter.

Yes, a large part of facial expressions are carried in the little muscle movements, and yes, your facial expressions are going to look very uncanny-valley to you personally right now -- but even if, Universe forbid, you wind up being one of the few people who have Bell's permanently, you can learn a ton about small muscle movement, control, and compensation, and you will learn how to route around the blacked-out nerve signals as much as possible.

I can personally attest to the fact that learning to isolate particular muscle groups and change the way they move is fucking annoying and tedious and difficult, but it can be done. (By this point I can twitch individual muscles in my right hip/upper thigh and my left shoulder.) The Alexander technique was designed for posture and movement through the spinal column, but it teaches you a lot about listening to what your body is doing; if your therapists don't suggest adding an Alexander class to your physical therapy regime, I'd suggest trying it out a bit and seeing if you can adapt the techniques. (I learned Alexander for theatre, and have used a lot of it in the last five years or so.)

It will get better.

I will now put another bunch of blank space in this comment so you don't accidentally read it when reading comments below it, and follow up with a picture of a kitten.

Advance notice required.


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