My Bell's Palsy Journey, Week 1

I was diagnosed with Bell's Palsy 6 days ago. The left half of my face is paralyzed. I cannot smile.

I wanted to share my experience with Bell's Palsy so far, to offer some encouragement to others who may be newly diagnosed as well.

How did it start? Well, really, it started when I was getting ready to travel to a conference in Chicago and didn't have time to get refills for some of my regular allergy medications. I have suffered from chronic allergy-related sinus and ear infections for over 20 years, and letting my medications run low is always a bad idea. I was out of Mucinex, which I'm supposed to take daily so my sinuses and ears drain properly, and while I was on my trip, I ran out of my FloNase, a prescription steriod nasal spray that keeps my sinuses from getting inflamed. The FloNase is probably one of the most important things I take for preventing sinus infections.

Well, you know how it is-- I was at a big, busy conference, running around for 14 hours a day, not getting enough rest and being exposed to sick people. By the time I returned home on Monday July 13, I was starting to feel sick. I had a sinus headache that would not quit, even after I got my FloNase refilled. Stuipidly, I didn't bother to get any more Mucinex, since it's really expensive and $ are kind of tight right now.

I was exhausted, all week probably, in retrospect, running a low-grade fever (I never thought to check). On Wed. the 15th, I felt the old familiar tingle of a cold sore coming on-- wunderbar!!

Due to insurance issues, I have been out of Valtrex for over a year, so I did what my pharmacist suggests and washed my face in the shower in very hot water with a strong soap in the lip area. Then I started using some Zovirax ointment I had lying around, and hoped for the best.

On Thursday, my left eye started driving me crazy-- weeping constantly and feeling irritated and scratchy. No cold sore, though, so I was feeling like I might have beaten that one.

Day Zero, Friday July 17th
I woke up with my left sinus feeling completely on fire-- the unmistakable sign, for me, of a bacterial sinus infection. I get them several times a year, and unlike most people, I seldom have a fever or cough, and sometimes not even much congestion, since I religiously take Zyrtec daily. My left eye was watery AND mattery, and when I checked the conjunctiva, it was red and mucus-y. Oh good, now I have pink-eye too! I started using some old sulfa eye drops we had lying around, which helped. That afternoon, I called DC at work to tell him I'd need the car to go to Urgent Care as soon as he got home. (Forget EVER getting a same-day appointment with my PCP.) DC says, no, I'll drive you-- I don't want you going there by yourself. (Hah!! If only he knew what I'd be going through the NEXT day!)

While I was waiting, I ate some yogurt and granola and was irritated because I seemed to be "losing" more than usual out of the corner of my mouth, and needed my napkin, but as my whole head was on fire, didn't think much about it. Here I was just starting to have some weakness in my lips, but I didn't realize what was happening.

I arrived at Urgent Care around 6 p.m. I was seen by a very nice Nurse Practitioner who took one look at me and immediately diagnosed bacterial conjunctivitis and sinusitis. She gave me a prescription for Vigamox antibiotic eyedrops for the pink eye, and suggested I try a Z-pack for the sinus infection, since it's only a 5 day dose. She warned me that some infections don't respond to the Z-pack and to call back if it didn't work. I've never tried the Z-pack before, but usually have good luck with antibiotics clearing up my infections, so I was willing to give it a go. I had been planning to ask for some Valtrex to make sure the cold sore didn't come on, but totally forgot.

We got to the pharmacy around 7:30 and dropped off the prescriptions, and headed off to eat at an Indian restaurant nearby. I had been craving Indian food and really enjoyed my meal. I decided to order a mango lassi, along with my meal, which I almost never do, even though I love them. Well, this one came in a stemmed glass with a straw.

Here is where I noticed the first real warning sign. I found I was having a some trouble drinking the thick liquid with the straw-- my lips didn't seem to want to close around it very well. I didn't mention it to DC, thinking it was weird, but blaming myself for taking old eye drops that I was probably having a reaction to. Or maybe just my cold sore getting worse. He was sitting across from me and didn't notice anything unusual. I did wonder fleetingly if I should get MORE medical attention now, but since Urgent Care was now closed, my options would be the ER and a $300 copay, so I decided to wait to see how things were the next day.

We picked up my prescriptions, and went home. While we were relaxing on the sofa, Huckleberry, our dog, decided this was the perfect time to jump up and start barking. It was so loud, I felt like someone had hit me over the head with a gong! It was kind of ring-y, too-- which I thought was weird, but blamed it all on the sinus infection. Although I had no way of knowing this at the time, INCREASED hearing/sensitivity to loud noises is a common symptom of Bell's Palsy.

Saturday July 18, Day 1

We knew this was going to be a hectic, hectic day-- DC had to work, and I had signed up for an all-day beading class on the other side of Raleigh. So instead of sleeping in like on a normal Saturday, we had to get up and get ready to go. While I was brushing my teeth I became very irritated that the water kept dribbling out of my mouth while I was trying to rinse. Then, I was dribbling water out of the paper cup while trying to take my morning pills. Weakness was progressing rapidly.

I definitely thought something weird was going on by now, and mentioned it to DC. My smile seemed "off" too-- we both noticed that. I said, well, I'm pretty sure I'm not having a stroke, since I have no headache, or weakness anywhere else and my blood pressure was fine yesterday. I actually said, it's either an allergic reaction to those old eyedrops, or maybe it's Bell's Palsy. I had heard of BP before, but didn't really know anything about it, except that it usually did something to people's faces.

We stopped at a Starbucks drive-thru on the way to DC's office for some quick food. I dropped him off and then while waiting at a red light, tried to take a drink of my Chai Latte, and spilled it everywhere, though, luckily, not on my clothes (for once). I tried to eat my breakfast sandwich, and food was falling out of my mouth. I figured I would be heading back to Urgent Care again after my beading class, which I had been eagerly looking forward to for WEEKS, and hoped my lips wouldn't swell up too much in the meantime.

I enjoyed part one of the beading class, and had no trouble making the project, using fine motor skills of both hands, though my blurry left eye was a hindrance at times. When we broke for lunch, I browsed around the store, and then caught sight of myself in a mirror. And realized, only HALF my face was smiling, the right side, and the left side was looking all droopy, like a stroke victim's.

I had dropped DC off at 10 a.m., and my face had looked relatively normal. It was now about 12:20, and I had lost half my smile. BP progresses very rapidly.

I immediately called Urgent Care to ask if this could be related to my sinus/eye infection and tell them what was going on. The nurse asked me if I could close my left eye, and it was then I realized that not only could I not close my eye, I couldn't move any part of the left side of my face! They said to come in. I asked, can this wait until 3 when my class is over? The nurse says, if you are having a stroke, then no, but if it's Bell's Palsy you could wait three weeks. And THIS is the first piece of mis-information I got about BP! The quicker you start treating it, the better the outcome, so NO, it could NOT wait 3 weeks!

Anger, denial, bargaining, grief, and acceptance rapidly transpired in about 2 minutes-- I was going to have to skip the last half of my bead class, the part I REALLY NEEDED!! Somewhat, but not too worried I was having a stroke, I drove off to Urgent Care, calling DC to update him on the way.

At Urgent Care, they send in a dr. to see me right away. Turns out, she's just returned from the Persian Gulf, where she was a military doc. The first thing she asks me is, can I raise my eyebrows? Well, the right one, yes-- the left one, no. She says, that's good-- you aren't having a stroke. If you were, you wouldn't be able to raise either one. You probably have Bell's Palsy.

Now, wouldn't that eyebrow thing have been a good thing for the person on the phone to have asked me?? Then I wouldn't have had to drive across town wondering if I was having a stroke.

She asks me several times if I have blisters anywhere or have been in contact with anyone with shingles. Well, as it happens, two of my friends have had shingles this year, but I wasn't around either of them when they were sick. Luckily for me, this doc is practically an expert in shingles, saying she saw them in the Gulf all the time. So she knows how to treat herpes viruses! She tells me she's sure it's Bell's Palsy, it's temporary, and I'll probably get better in 2-3 weeks. She says I have a really good prognosis, because outcomes are best if treatment is started within the first 3 days, and this is within the first 24 hours. **Actually, the research says 7 days after onset is the outer limit for drug therapy to make any difference, but of course, the sooner, the better.

She leaves to write some prescriptions for me, and then comes back to ask, do I want her to prescribe an antiviral (Valtrex) along with the Prednisone she's going to put me on. She says the research isn't really clear about the benefit of adding the antiviral. In the end, Thank God, she does put me on a very powerful course of Valtrex. Meanwhile, the poor nurse practitioner who had seen me just the night before comes in to look at me-- and says, "Wow! You sure didn't look like this last night!" I reassured her that the paralysis had not started until after I left Urgent Care. **It is very important to take BOTH the steroids for the inflammation AND the Valtrex to fight the virus, since it is very likely that our old friend Herpes Simplex I is the cause of the BP.

The doctor tells me I need to take preservative-free eye drops every hour while awake, and wear an eyepatch while sleeping. She hands me a printout of a web article on BP, urges me to see my PCP as soon as possible for a base-line evaluation, and she hopes I get better soon.

And that is pretty much all I had to go on from there!