Personal Experiences with Bells and Facial Palsy
In June 2003 everything seemed to be going pretty good for me. I was happy although a little confused in my life. I had recently switched jobs and was enjoying the added responsibility and pay, plans were being made in my personal life and I thought things were finally on track in how it would all play out.
The only problems were a bout of ear infections over a couple of months that I was tired of. Another hit me at the beginning of July, this one was different in that in came with extreme pain unlike I had ever felt before; sharp fast pains behind the ear to the back of the head and along the jaw line. I sought medical attention immediately with a doctor in town so I could get it dealt with quickly.
The Doctor diagnosed me with an inner ear infection with a possible ruptured ear drum and gave me medication. I asked about the unusual pain I was in and he told me it was normal and would clear up in a couple of days. 4 days later the pain had become even worse, I was unable to get any sleep or even lie down because the pressure was unbearable. I saw another Dr and he checked me out again, but had the same conclusion as the first Dr, but added that the pain I was feeling behind my ear meant that the infection had spread to the mastoid bone. I was given more meds, painkillers, shot so that the ride home would be more comfortable and told me to be patient. The shot gave me 4 hours of uninterrupted sleep, but that was the last 4 hours straight that I had for a long time.
After I saw this 2nd Dr, I spent most of my time in a fog, taking my medicine, walking the floors until I was so exhausted I�d doze off for 20 minutes or so until the pain woke me. There were bouts of dizziness that made me nauseous and as much as my boyfriend and my family tried, there was nothing they could do for me. On July 14th my Mother came by to check on me. She was horrified at how I looked, I was pale as a corpse with deep black circles under my eyes and now the left side of my face had swollen like a football. I knew myself that this was not normal, I had plenty of experience with ear infections and how I reacted to them and this was beyond anything I had ever been through. I went online and typed in the search pain behind ear and the first site I saw was the BPIS. I went there and read everything on the site. It all made sense except I didn�t have any paralysis. So I left there and went to read up on infections in the mastoid bone and in turn scared myself half to death.
During that week the swelling didn�t go down. I did not start feeling better but slowly I started to lose function on the left side of my face. By the following Sunday July 21st, the paralysis had set in completely. The eye wouldn�t close, I was slurring when I spoke and drooling when I tried to drink. I could not smile or move any part of that side of my face.
I was taken to the ER in a neighboring State. The Doctor there said the words Bells Palsy as soon as he saw me, but he said something is not right as the lymph nodes in my neck and jaw were abnormally swollen and my blood pressure was sky high. He called an ENT and I lay on the table, hooked up to an IV listening to him talking to her about me. I remember wanting to either go to sleep or die and I didn�t care which one it was.
The Dr and ENT both believed I had Bells Palsy caused by the ear infection. He gave steroids to take and he told me I needed to see the ENT the following day. I was sent home with prescriptions for steroids, an antiviral, an antibiotic and more pain medicine and a promise that in a couple weeks I�d be all better.
Because she was booked up I didn�t get to see the ENT until the end of the week. By then some of the swelling had gone down and I had been getting some sleep. She ordered all the standard tests and gave me a second course of both the antiviral and the steroids. I was so miserable waiting for the results of the tests. Completely exhausted, still in pain and suffering dizziness off and on. The steroids made me grouchy and I was terrified.
The only comfort I found was when I registered with the BPIS forum. I started reading the posts and saw that I wasn�t alone. At first I never even needed to ask a question because there were answers already there to all my questions. The first and most important thing I learned on the forum was that chances were good I wouldn�t be recovered in 2 weeks, so when I found that I hadn�t, I didn�t get depressed and was able to stay optimistic. I did ok despite the fact that I was going through some rough personal problems then. When I hit that 3 month mark I had to face the reality that I wasn�t going to be a �quick healer� and that was a tough time that I wasn�t prepared for.
My Dr recommended decompression surgery, which terrified me after I read the posts about it, so I passed. She told me that after 3 months if you hadn�t healed then chances were you weren�t going to. I found it difficult to hear about others and their quick recoveries although I was very happy for them. I had the same pain, repeated infections and I could wake up any morning and find my face was swelling again. I didn�t understand why this was all still happening. There were still no answers. But I got past the depression quickly after forcing myself to look at what others were going through.
At the 3 � month mark I noticed I had a slight lift in my smile, I wasn�t having to lube my eye as much and I didn�t seem to get as dizzy as before. I thought I was starting to recover although it was slow. I was doing ok except I was still having some personal problems, which were not helping the situation. But I found solace in the people I had met on the BP chat.
The next month was ok but the recovery had stalled completely so they did that torture they call checking the viability of the nerves. By Christmas I was worn out, emotionally and physically.
I was trying to work but finding it impossible much of the time. I was trying to maintain a relationship, which was going through shaky times. I felt overwhelmed by all the things I couldn�t do and all the things I didn�t want to do but felt that I had to do. I was being forced into situations I knew I wasn�t able to handle and I was falling apart. I believed I was neglecting everyone that I loved and I was often accused of allowing my illness to control my life. All I wanted was to be left alone; I couldn�t take care of anyone else when I couldn�t take care of me.
But I was hanging on albeit by a thin thread, until the 6 month Dr�s appointment where I was told all that could be done had been done. I was told I would either have to wait patiently and hope for recovery or possible answers after a 6 month waiting period and retesting or even worse I would need to learn to live with the fact this may be as good as it gets for me. I didn�t take this well.
I had no definitive diagnosis just a bunch of maybes, there has been no explanation for why I seem to be getting worse over the past month or why the dizziness has come back stronger and the headaches are often as intense as at the beginning, I lose my vision at times and I have a problem with my hearing. I may get the answers next month when I see the a new doctor, but I am also trying to prepare myself if the situations remains the same and I am still in the dark...(continued on next page).