Bell's Palsy - My Experience

This blog is for my children but I felt compelled to detail my experience with Bell's Palsy as to not forget this struggle and to possibly help someone else going through the same thing.  After diagnosis I remember how much it helped me by reading countless blogs of people, my age and even younger, who shared their experience.  It helped me understand and know what to expect over the course of my recovery.  So thank you to everyone out there for being so forthcoming... we have nothing to lose.     

In early February, I traveled to FL to visit my mom and dad and take my mom to St. Augustine for a sight-seeing weekend.  Little did I know that during that weekend I was experiencing the early stages of what is known as Bell's Palsy which would strike me exactly 1 week from the day. 

This picture was taken on Friday after arriving at the hotel Casa Monica in St. Augustine.  When I first saw it, I thought it was strange that one side of my face wasn't smiling but at that time I was suffering from a massive migraine.  I suffer from migraines at least once a month but this one was one to reckon with.  It was an excruciating drive from Orlando to our destination and at one point I had to stop and give myself a pep talk in the restroom to just make it there and then I could rest.  Sure enough after a some time on the couch in the hotel and several Excedrin migraine pills later the pain was subdued enough to get up, grab dinner and start planning the weekend with my mom.  And the rest of the trip was great... cold but great!  I came home the day before my 34th birthday; February 14th.

February 18th Outside the Alamo

Friday,  February 18th I remember being at work and the left and right side of my tongue was tingling; almost like when you burn your tongue but it was strange because it was to the back of my tongue.  (Surely I couldn't have burned my tongue back there on last night's dinner I thought.)  That evening Wade and I had plans to celebrate our birthdays together by staying downtown at the Emily Morgan hotel and eating dinner on the River walk.  Not feeling well but I put on my happy face and headed out for a nice evening.  We drank at the Piano bar at Pat O'Brien's and it was strange that I couldn't taste much of anything and the carbonation from the beer burned my tongue even more.    

Saturday, February 19th, we get home and I am not feeling well.  I start to feel tingling in the left side of my face and decide to lay down for a nap.  When I wake up after 5pm, the left side of my face is practically paralyzed.  Still not panicking I call my parents and commit that if I am not better in the morning I will go to the doctor. 

Sunday, February 20th I wake up at 6am in dismay.  My left eye is stuck wide open and I have no response on the left side of my face.  Being Sunday, every walk in clinic was closed till 10am so I wait only to be turned away and sent directly to the ER.  Now the fun begins... little did I know that anytime you complain of numbness they have to rule out a stroke 1st and foremost.  So I had an EKG, a chest x-ray, a CAT scan and an MRE (like an MRI but checks blood flow in the brain.)  Scared as ever I cried the entire time.  They confirmed no tumors or sign of stroke and the best they could tell I had classic Bell's Palsy.  Diagnosis was steroids for 10 days and symptoms lasting up to 6 months.  Although I was thankful to hear I wasn't dying it was tough to think about being in this condition for 6 months.  So I come home and sleep.  Monday starts the process of finding a neurologist and a physical therapist. 

I call into work for the first part of the week and spent the day searching for neurologists.  With every call I start to feel more and more depressed with either no new patients being accepted or a 4 month wait to get an appointment.  I spent the rest of the day waiting for a referral from my primary care doctor which came after 4pm and several follow up phone calls on my part.  Thursday is the day I get to be seen.  Until then, rest as much as possible.  What I failed to mention while this was happening to me, Wade's father passed away that Saturday night in Naples, FL and he left on Monday morning.  

I was able to manage throughout the week with the help of friends and neighbors and my mother in law who came in for 2 days.  Thursday, the day of my appt, was the 1st time I really attempted driving further than a mile or two.  Not being able to close my eye, I taped it closed most of the time but to drive I had to keep it open and try to focus as best I could.  (You know when you try to keep your eye open without blinking, it waters right?  Well, with Bell's Palsy your eye doesn't water, and not being able to blink it burns so you fill your eye every hour with artificial tears which then blurs your vision.)  

1st appt with the neurologist was quite discouraging.  After waiting 3 hours beyond my scheduled appt time, he walked in and said, "So, you have bell's palsy... what do you want me to do."  He treated me as though I was wasting his time but I managed to keep my head and not explode in anger or tears... what I didn't realize through all my online research was the cause wasn't just an inflammation in the nerve but an actual severing of the nerve which meant that the nerves have to regenerate.  If they regenerate too fast, they can connect incorrectly which means facial expressions may be over exaggerated and the opposite holds true if they regenerate too slowly or fail to do so at all.  Basically a waiting game - come back in 12 weeks to see my progress and pursue physical therapy if I wanted, "even though there is no proven research that physical therapy helps with recovery." 

The first 2 weeks I was in and out of work doing as much as I could but even when I was there it was almost impossible to focus.  I end up taking the rest of the week off and literally shutting down the phone and email, trying not to even think about work until the following Monday.  Time to rest... 

Week 3 - Now I am back at work and starting physical therapy twice a week.  You know when you get a twitch in your eyelid and it won't stop... how annoying that can be?  Well, with every muscle reconnecting, the left side of my face was always twitching.  Everyday was a new muscle tingle but I stay positive telling myself that it means I am getting better rather than be annoyed by it. This continues for a few weeks and then the pain starts. 

I woke up one morning and had an indescribable pain in my face.  Physical therapy didn't help the pain and they said there was nothing they could give me.  Follow up with the neurologist, he recommended nerve testing to check my progress.  Although interesting, I left with a huge headache on top of the pain I have already been experiencing thanks to the electric shocks to my face to measure my blinking and muscle reflexes.  Not to mention this was another 6 hr trip to the neurologist.  This pain lasted for almost 3 weeks - the masetor muscle which is the strongest muscle in your body, was in hypertension.  I will say this pain was one of the worst pains I have ever felt in my life.  The only time I wasn't in pain was when I fell asleep.  Every morning when I woke up it was to the same pain from the day before; I remember being depressed and lots of tears during this time.  Hopefully there's no long term damage to my liver with the combination of 2 Tylenol and 2 Motrin I took every 4 hrs just to get through it.  Finally the muscle pain faded and the newest symptom was muscles seizing up and getting stuck, literally. I was told to exercise my face, make a pucker for example and when I would my left side of my lips would get stuck in that position for 10+ seconds.  Unnerving to say the least but I keep with my exercises and pray that this too will fade.  At least I am no longer in such pain. 

Next week will be 4 months since the start of this ordeal and I am beginning to worry again.  Work and life in general has me at or above the same stress level I was prior to getting sick.  And I can say I am feeling it in my face all over again.  I can notice some digression in my facial movements and more twitching than I have felt in weeks.  And my left eye seems to be tired, at least it feels that way.  I have to force it closed sometimes and when I do the muscles down to my chin are pulling when I do.  With everything going on at work I have put myself last again; missed my final follow up appt with the neurologist and stopped physical therapy with 3 sessions to go.  For now I am trying daily to remember to exercise my face on my own and relax as much as I can.  Any symptoms that remain after 6 months apparently will become permanent so I am hoping for the best.  I worry about reoccurance too.  Although it's a small percentage (10%) of people who have had Bell's Palsy get it again and typically it's years later when they do, I think about this a lot.   I need some positive change, just not sure what that is just yet.