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Old 03-18-2012, 05:21 PM   #1
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Join Date: Mar 2012
Location: Chicago, IL
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toddersk HB User
Bell's Palsy: 6 months in

Hello everyone,

I just passed my 6-month anniversary of my Bell's Palsy onset and in the spirit of giving back to the online resources that helped me through my situation, I thought I'd post a recap and share some thoughts. I'm an otherwise healthy 33 year old male if that matters to anyone. Here we go:

T-1: The day before onset, my sense of taste was greatly diminished (I had a spicy Jimmy John's Italian Nightclub sub and it tasted like nothing). Weird, I think. But then I thought nothing more about it.

Onset: I wake up and my eyes feel funny, kind of puffy. It is early September and I think it just must be really bad hay fever. I head on into work. When I get there, co-workers are like "why are you talking out of the side of your mouth?" I go to the bathroom to look at myself in the mirror and see the paralysis setting in and make a doctor's appointment for that afternoon. I think maybe I got a spider bite or something while in the woods that weekend. Before the appointment, another co-worker comes into the office, sees my situation, and says she think's it's Bell's Palsy, which I had never heard of. We wikipedia it, and the picture on the entry looks a lot like me. This seems to explain it. A few hours later, after ruling out stroke, lime disease and everything else, the doctor preliminarily confirms the diagnosis and starts me on a week's worth of steroid treatment. My symptoms include: facial paralysis on the left side of my face (including: a left eye that won't stop watering, difficulty keeping food in on the left side, occasional drooling, 50% eye closure), diminished sense of taste, sensitivity to loud noises, occasional shooting pains in my head/face emminating from behind my left ear, occasional twitches in eyebrows, and difficulty with bright, sunny days due to my inability to squint (can't wear sunglasses because I can only wear them with my contacts, which I can't wear).

T+1 week: The week has not gone well, my daily dose of steroids are at dinnertime, they make me jittery and, combined a heightened anxiety level over the condition, I have a tough time sleeping. My eye patch is uncomfortable so I switched to one of those "sleep on airplanes" masks. I take a few days off here and there, mostly because I'm exhausted.

T+10 days. I go back to the doctor, this time my PCP passes me along to the neurologist. Course of steroids has run out 2 days prior and the shooting pains picked up in frequency. I also had a 24-hour period where the the left side of my face also felt bruised to the touch. I am told the inflammation probably came roaring back after the steriods ran out (it is harmful to be on this steroid for too long; usually after a week standard practice is to see if your body can fend for itself.). (I believe but was never told by a doctor so take it for whatever it's worth that the bruising sensation were the nerves shutting down; the steroid only postponed it a week.) I am told to do facial exercises 4x a day and am "prescribed" 200 mg a day of vitamin B-1. (Neurologist also recommended a brain MRI to rule out brain tumor. I told him it would be $2,700 out of pocket (hadn't hit my deductible yet) but that I'd be happy to get it if he thought it was really medically necessary or he thought I might have a brain tumor... he said I didn't need to as long as I started showing some signs of improvement in the near future.)

T+2 weeks - my sense of taste begins to return and is all the way back within a week, my first sign of recovery. Vitamin B1 makes me get up to pee once or twice every night, this is kind of a nuisance.

T+4 weeks: My hearing has returned to normal and I have some movement in my eyebrow. Weather has turned colder and I notice my eye waters more in frigid weather.

T+2 months: I go to the eye doctor for a routine visit. He says the lower third of my cornea is nicked up and I really need to be taking my eye drops. I had kind of blown these off because I figured "my eye waters constantly, it's certainly not drying out." But I learn it is watering for 2 reasons: 1) the eye muscles aren't strong enough to hold moisture in it and 2) it is watering in response to the fact that it is irritated. he prescribes "Refresh" brand drops, I get one bottle for home and one for the office. The good news is he says I have full eye closure when I really try to shut them (only 3/4 closure when I blink involuntarily).

T+2.5 months: I finally get a little bit of movement in my cheeks. This concludes the toughest stretch of the whole ordeal - at about 2 months, you know it's too soon to expect a lot of improvement but it's also been awhile since you've had any meaningful recovery. It's also been long enough that you're not crazy for thinking you might see something soon.

T+3.5 months: After a month of steady improvement, my mouth/smile is now back to where most people wouldn't notice anything was wrong unless they were looking for it.

T+4 months: Now that I know what to "look" for, I can feel some improvement around my eyes starting.

T+4 to 5 months: I start getting weird headaches that get worse as the day goes on. I'll spare you the details on how I diagnose it, but the long & short of it is that I had been cleaning my glasses with paper towels, not microfiber cloth, and though technically the right "prescription" they got blurrier and blurrier. Because I had never worn my glasses on a daily basis, it had never been an issue before. I chalk this up to "unintended consequences of Bell's Palsy."

T+6 months: I start wearing my contacts again with no problems.

So that's where I currently stand. Not fully recovered, but a lot better than where I was 6 months ago. I still can't 1) raise my left eyebrow all the way or raise the part of my eyebrow nearest the nose hardly at all; 2) flare my nostril; 3) pucker my lips. I assume that the nerves, which regenerate by branching out from the root at the base of the year, are still making their way across my face.

Key Points of Advice:

1) Don't freak out - there's very little you can do about Bell's Palsy, and it doesn't do much good to stress about those things which are beyond your control. You basically just need to give it time and take care of those things that ARE under your control (exercises, vitamins).

2) It's all about probabilities - about 80% of people get "mostly" back to normal around 3 months. So there's a good chance you'll fall into this group but there's a very real chance that you won't. If you are not elderly and otherwise in good health, your chances are probably a little better than the averages. But you can't do anything to improve your chances, so just be hopeful that the odds are in your favor and aware of the reality that there's a group that has a longer recovery, and a very small percentage that never recover at all.

3) Don't expect your body to go exactly back to how it was before - my doctor says that relatively few BP patients "fully" recover - most have a 97% recovery, where there's at least something that never reverts to its old form, but it's just something that most people, unless it's a doctor or your spouse or someone's who's looking for it, wouldn't pick up on.

4) Everyone is different - no two recoveries are the same, so it's hard to say exactly what is normal or what to expect. Just try to roll with the punches.

Sorry for being so long-winded, but as I went through the process, I always I thought that more information was better than less. Hopefully you found it helpful.

Todd
Chicago, IL

 
The following user gives a hug of support to toddersk:
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