- CASE FILE
Had onset of facial paralysis, inability to close my eye and hearing issues, diagnosed with RHS (Ramsay Hunt Syndrome)
ABOUT THIS CASE FILE
We need more input and insight to this horrible condition of Ramsay Hunt Syndrome (RHS) It began with hyperacusis/tinnitus in my right ear to having a severe bout of vertigo within a few days. By Saturday July 13th my face stared to droop and my right eye would not work. Went to the ER the following AM and diagnosed with Bell"s Palsy. When I saw my PCP the following day I had a vesticle on the outside of my ear and diagnosed with RHS (Ramsay Hunt Syndrome). Place on high dose steroids (2nd round now) and antivirals. I have complete paralysis of my right face, eye and neck muscles, continue with hyperacusis and tinnitus, eye still does not blink well or close ( I patch it at night), right face does not move nor do right neck muscles. Facial droop to right face and numbness to right side of tongue with numbness extended to left side chin and lips. I drink with a straw and can only chew on the left side of my mouth. Still continue with right ear pain (shooting at times), taste is affected along with balance issues at times as well. Constant painful muscles in right side of my face and neck due to it being flaccid and they do not work.
I have not been able to work my regular job due to my eye doesn't work, increased fatigue most days and a heaviness to my right head, neck and face is constant. Daily routines are most days hard to do. Difficulty driving due to having to instill eye drops to keep it moist since it does not close. I usually wear contact and I had to go to prescription glasses and sunglasses to see. I am an avid golfer/outdoors person and I am not able to fully enjoy being outside most days.
I have done antivirals, steriods, B 12, lysine, curcumin, turmeric, CBD, gabapentin(to sleep at night from pain), seen neurology and had an MRI that showed nothing, labs, Speech therapy (no new things to try at all they were stumped and knew nothing about RHS). I have had facial massages and that does loosen the muscles some for relief.
This condition has no timeline or cure. It affects every part of your daily life and changes most lives drastically. There does not seem to be a lot of research ongoing that I have been able to find and here in the US it is even less. We need to bring a spotlight to it.