Updated: 9/16/2005; 12:00:59 AM.
Hell's Bells
Kevin's Bell's Palsy experience

Saturday, February 08, 2003

  1:44:37 AM  

Hell's Bells day 50:  Missed seven weeks by a day.  So how is the face ?

It is improving slowly but steadily.   Forehead is great, cheek and side of mouth able to be lifted.   Still can't close the bell's eye without scrunching, It is about 90% Sheri says.  This means I still have to keep it covered at night :-(   The elastic broke off both sides of the eye patch so now we have a guaze pad on the eyelid, the eye patch without the elastic covering it and the plane (not plain, plane as in airplane) blindfold thingy holding it all in place.  The eyepatch keeps the blindfold from putting too much pressure on the eye.  Have found it very hard to get the eye gauze patches which are really gauze on both sides and some cotton like material in between.   This is key as the expanding cotton in the middle applies gentle pressure to keep the eye closed.

For those in the NW suburbs of Chicago, see Mark Drugs in Roselle.  They have everything.

Best thing learned lately ? If you have any strength in the lower lip, if you put it outside the upper lip, you can brush your teeth without blowing water up your nose.  This is great.

I can taste the toothpaste now. This is great also.  I still don't have much taste on the bell's side but it is improving.  For many weeks I couldn't tell I was using tooth paste.   This is most evident when you go to eat something you haven't eaten in awhile.  You go to put it in your mouth and the brain automatically seems to sense what it is supposed to taste like and then when you do get it into your mouth, there is a rude awakening.  Otherwise, you get used to what you are eating and what it doesn't taste like so it becomes normal.

Other good stuff ? Two straws in parallel allows you to dring the volume of water you usually drink.  You don't realize that when you dring water you drink more volume than other stuff.  When you try to suck through the straw to generate the usual water flow, you will be disappointed.  I always keep two of them in the glass.

I can now drink somewhat normally from a glass, can or bottle but it's a pain.  The noise can be funny still and if it's a Coke can, you will find little rings around the bottom of the can on the table because though I think I'm drinking well, actually I'm not and little by little is running down the can.   The squirt water bottles work best as you just aim it and shoot.

Biggest problem ? the cough from hell.  I still can't kick the cough which appeared about the first of the year.  This cough is disabling, I mean explosive.  When driving, have to pull over :-(  When eating, it's comical, well if you are not me.   Key seems to be if I don't eat or talk, the cough is managable.  Early morning is best and overnight seems to go good.  Docs have tried more antibiotics, asthma meds, nothing seems to help :-(

So much for the first nurse at the doctor who said it would be much better in 3-4 days.   Current best guess says it will be about 4 months if things continue at this pace.  Please lord don't let this cough last that long.

Friday, January 17, 2003

  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 ?

Tuesday, January 07, 2003

  11:58:59 PM  
The Bell's ear continues to have all kinds of strange sensations in it whether just on it's own or when I put the phone up to it.  Have fouind the the old cutip in the ear feels really good to.  Not recommending sticking things in your ear but gently and rotating it makes for much more pleasant sensations from the ear.

  11:56:55 PM  

Hell's Bells day 19:

Longest day yet I believe in trying to bounce back energy wise.  I still am amazed how quickly I tire and both arms and legs get shaky.

Today the Bell's eye has started much involuntary twitching.  If I was healthy it would probably bug me to no end.  In this predicament, I am thrilled to see movement.

Sheri guessimated 80% eye closure when I work really hard to try to close the left eye.  This appears to be an improvement.  Without the big scrunch it goes about half way :-(

I am able to move my Bell's cheek ever so slightly and the forehead is really wrinkly now.  Happy happy, joy joy.


  11:52:57 PM  
Some pics on this page of this wonderful nerve in my face which is unhappy.

Monday, January 06, 2003

  11:28:57 PM  
The best place we've found for sharing the Bell's experience is The Bell's Palsy Network.

  11:13:34 PM  

Today's excitement ? I can begin to move a little of my left upper lip and cheek :-)   It is not much but it is moving.

Other strange stuff ? My taste seems to be changing.  Can't taste per say and tooth paste doesn't even register yet when eating some plain stuff like an apple today, I am overwhelmed with a bad and very strange taste or I think it is taste, not sure just know it is different and far from normal.  I think this is good.

  11:10:53 PM  

Hell's Bells day day 18:

At 18 days, I am still coughing my head off.  I still get winded and incredibly tired after just 2-3 hours of activity.  This is a drag and the worst of it currently.

The eye seems to close a little more but still doesn't close.  Seems to blink a little but since it can't close it is not very effective.

I constantly have ants running around in my cheek.  Feels like when your limbs fall asleep and then come back.  The pins and needled feeling is in my cheek on and off all day.  

Bell's side ear is hyperacccusis (very sensitive) most times.  If I use the phone on this side it causes the most amazing tingling in this ear.  The ear seems to alwasys have fluid moving around in it.  I can feel like there is stuff swimming around in there.  Docs say it looks great and is clean in there, sure doesn't feel that way.  Good news is it is the same movement I felt before Bell's set in but at least it is not painful.  It is uncomfortable and strange but thank god it doesn't hurt.

  11:03:03 PM  
Kevin's Hell's Bells story.

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Hell's Bells

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