Personal Experiences with Bells and Facial Palsy
I guess its about time I got my story written and put up here. Mine is a touch different then a typical Bells palsy story. It is long and boring so if you are interested in this type of thing pull up a chair, sit down by the fire and enjoy. :) Okay okay.. there's no fire but still.. sit down and read.. lol
I really don't know where to begin, So much has happened in the past 4 years with my face that things tend to blend when it comes to what happened when and which came first. Anyway my first bout of BP is a good place to start I guess..
In 2002 I woke up one morning to find half my face was gone. It just stopped working. Coffee spilt out my lip, I couldn't close my eye, couldn't smile on one side ect.. It literally stopped working on me. I went to the ER where my grandmothers suspicions were confirmed. I had Bells palsy..Grandma had it 30 years ago you see. So she assumed that's what I had as well. I was then sent home with instructions to keep my eye well lubricated, take pred and an anti viral and rest. In time it will go away.
Over the next few days I talked to grandma about all the things I could do to help speed healing along, E-stim was one thing she told me as well as doing facial exercises as much as I could. So for a few days I did as I was told. Grandma healed why wouldn't I?? Then I decided to do some research on my own and came across the "Bells Palsy Information Site" I read as much as I could, posted and read some more. I found out that E-stim is actually more harmful then good, exercises weren't needed and all I could do was wait it out and in time I would heal. Slowly over the course of 7 weeks my face started to heal, My eye could close a bit more, my smile became less lopsided, the pain lessened and finally I could move my eyebrow.. I was ecstatic with my progress. I made sure from that point on that no matter where I was I was going to live my days smiling *grin*
Now fast forward 9 months and here we are at my second bout of what I thought was Bells palsy and turned into a nightmare for me....
December 2002 - here I was Sunday morning getting ready to go out with my husband and children when my husband informed me that my smile was starting to go crooked again. I immediately checked it out and he was right. My stomach dropped, I was terrified.
I knew there was a chance of getting bells more then once but within 9 months? I was starting to panic. I ended up at the docs a second time claiming I had Bells palsy. My doctor agreed but wanted an opinion from a neuro. So began my 2 year adventure of doctors, testing, wrong DX and alot of turmoil, stress and tears.
I was told I have Facial palsy of an unknown cause not Bells palsy and along with losing my smile came vertigo, migraines, pain, twitching, numbness, muscle spasms ect.. My doctors swore I had a brain tumour and sent me for an MRI. They were clueless as to what was wrong with me once my MRI came back normal. Then my dx was bells palsy with residuals and migraines.. They shot me in the back of the head with Novocain type stuff and sent me home. It didn't work! Another was Multiple sclerosis which my neuro wont confirm nor rule out still.
Months went by and things got progressively worse. I was so ill I couldn't get off my couch at times as the pain was unbearable. I was taking Tylenol 3's like candy and begging my husband to help me. I was going to the ER to get pain killers and nothing seemed to work. My life was falling apart and there wasn't a damn thing I could do about it
With more doctors appts, more tests and even more tears they came to the conclusion that I had a B12 deficiency and that's what was causing alot of my neurological problems. They put me on a B12 shot once a month and told me this was a life long thing now. I was then told to come back in 6 months time if I wasn't feeling better.. Guess where I ended up in 6 months?? lol
I finally went back to the doctors and told him I couldn't live like this anymore. My kids and family were suffering along with me. It wasn't fair. It was at that point that I started all my meds. By the time I was done I was on 8 different medications just so I could get through a day. My life became a routine of sleep, medications and very slow calm days. At certainly times even my meds didn't take it all away. I was in short, living in hell.
I would stop breathing at night, shake uncontrollably, still have tons of pain and the migraines were not giving up. I wasn't sure what to do anymore. I had given up on doctors at this point knowing full well that the medications were covering the problems and nothing could be done until I was off them. I was living a semi normal life on the meds but I wanted to see how I would do off them. After about a year on medications I knew it was about time to stop. I slowly started to get off each medication. The last 2 were the most difficult and I ended up unconscious in bed throwing up for 12 hours without any memory of things that happened. I awoke to find one very tired husband looking quite scared. Of course the neuro was called and back on the pills I went. This time she told me to wean off them instead of coming off cold turkey like she originally told me. After that one scare with medications everything went smoothly coming off..
So a few months go by medication free (other then my B12 shot bi-weekly and migraine meds taken as needed) and my husband and I decided to start trying for another child, life seems perfect. Other then the tolerable pain, shakes and migraines I seem to be functioning properly again. (well as good as I was able anyway) I think I gave into my hope that life was going to be okay a little too soon.. *sigh*
In April 2005 my face went again. My eye could hardly open, I am slurring my words again, my face is drooping and the pain is back with a vengeance. I rush to the doctors thinking my sinus infection is causing the setback. The doc sticks me on prednisone right away and sends me home. (walk in clinic doctor).. I call and make an appt to see my family doc and he confirms what I was afraid of. My facial palsy is back!!
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