12:23:53 AM
So I have arrived a day 28, 4 weeks of hell's bells. Thought I 'd share the good, the bad and other random bell's thoughts. This was headed for the Bell's Palsy Network but it doesn't like how long it is so it is here.
Prednisone free for 5 days.
I have about 80% movement in my forehead :-)
I have maybe 20% movement in the side of my mouth/cheek :-)
I started with closer to complete paralysis than I thought. Nothing moved, nothing. It didn't droop too much but movement was non-existent until about 2.5 weeks. Most people say, "oh, I thought you'd look much worse, I can't tell at all".
I was able yesterday to tell that the waiter at the restaurant switched my coke with someone else's diet coke :-) It is getting better. Sllllllloooooowww but considering at about 2.5 weeks I still had no improvment, I am quite happy.
Taste is currently a little better but still miserable. This to me is much harder than the face at the moment. I'd absolutely love to be able to taste stuff again. Even water just isn't the same.
Bell's side gets really tired sometimes when eating, especially pizza. I am sticking with the cheap pizza for now as it just isn't the same.
With a little cheek movement, eating is much easier. Talking too. Bottom lip seems to be regaining a little strength when I pucker, top lip not putting up any resistance.
Most days the mouth feels metallic and salty. Candy sometimes helps to ease this mostly by distraction I think. The candy tastes very different depending on the side of the mouth. Bell's side still can't tell it's candy, non-bell's tastes just a bit.
Haven't felt pins and needles in my cheek in about a week, I kind of grew to like this as it made me feel that there was nerve repair going on. I also felt I was able to cause this by trying to close the bell's eye. When I would do this and keep trying for 10 seconds or so, the asleep/pins/needles would always follow. Usually stayed for quite some time too.
Can close eye completely if I scrunch real hard. Get about 75% if I just try to normally close them. Still far from sleeping without a eye patch. It falls off at least once each night but has become part of the routine. Sometimes the cats snatch the gauze which is between the patch and the eye before I wake up an realize it has fallen off.
The new glasses which replaced the 10 year old "goggles" are fantastic. Being addicted to my contacts, I don't think I'd have ever upgraded the glasses lest I encountered the Bells.
One interesting eye problem I have created a few times is when I put too much pressure on they eye at night like when I tried to switch from patch to the airplane like blindfold. I would put the same amount of gauze patch between the blindfold and the eye and because it was much tighter, I'd wake up with a very blurry eye. This lasted much longer than I expected, a couple days it lasted 12 hours or so. I have this routine down now and I'm not changing it. Eyesight is so nice to have.
I use less drops during the day as I can scrunch it closed. Probably should still be using more. Still use gooey stuff at night, don't like it but seems best to do.
Have learned a lot out in the cold about how often you blink and close your eyes. I am constantly covering my eye from the wind and even holding it closed with a finger most days.
Key apparatus at this point is still a straw and swimmer's goggles for the shower. Eye patch too I guess.
My biggest problem is lack of energy and ongoing cough from hell. Cough is almost croup (sp?) like at times. Doc says I'm still "wheezing" and has me on asthma inhaler and meds to try to loosen up the bronchial airways. I still feel like I have big lumps in the back of my throat. I get winded easily and if I am up around and about for 3-4 hours I get so tired. Doc says not Bell's related. I tend not to care why, just want my body to bounce back sooner rather than later.
I have constant nasal draining from somewhere up in the Bell's side of my head. I keep thinking as this side of my face gets better this will go away. So far it's staying.
By the end of most days, if I'm out and talking, my voice is toast at the end of the day.
Nose on Bell's side still has no movement or tone. Breathing causes it to collapse. Breathe rights were/are fantastic for fixing this but look awful bad. For first few weeks, I didn't care what I looked like but now I have given in to the vainer side of life and don't wear them out at all. Breathing is over rated when you can't smile, blink or taste ;-)
Ear pain is actually quite severe today and different as usual. Comes in spurts and thankfully leaves too.
Bell's side of head still sore many places. Occasionally when getting a hug from the wife it gets bumped and is quite painful.
Prednisone ? took 30 mg for about 12 days then 60mg for 7 days (for 160# male), tapered 10mg a day and then off. Has it helped ? from what I can tell, not at all. Think it helped the appetite in the early days. Only regret in hindsight is that we didn't force the general doctor to dig deeper and get the higher dose as the neurologist directed at about 12 days.
Oh and the blood tests the neurologists had us run just in case, flunked the liver tests, bilirubin and something else I can't remember. General doc said likely because of the Pred and we will retest in 2 weeks.
So, hope this helps someone else who is either ahead or behind me, I have experienced so many things it's hard to keep track but this stream of conscious bell's brain dump is my contribution for this evening.
Keep your chin up and a stiff upper lip as my grandfather would say, I have the chin up most of the time, Sheri (wife) might tell you otherwise. As for the lip ? well how about half a stiff upper lip ?
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