Hello fellow sufferers of Bells Palsy and Ramsey Hunt Syndrome.
Any sharing of experiences when one is unfortunate enough to suffer a debilitating medical condition must be helpful and I would like to relate what has happened to me over the past few weeks for all members of this community.
I am a 69 year old male professional working still within the Educational sector in the South East of England. Enjoyable work but much stress.
Four and a half weeks ago on the Sunday evening I felt s few tingles on the right side of my jaw and thought this could be the onset of the common cold. By the Monday I developed a terrific headache on the right side of my head and Tuesday morning went to the GP who upon looking into my throat and both ears could see nothing and sent me away with a course of antibiotics. Wednesday to Saturday I spent in bed with no appetite, no energy feeling very sorry for myself. At midnight on the Saturday my wife called for advice from the NHS 24 hour helpline as the right hand side of my face was beginning to drop. The advice was to go to A&E at the nearest Hospital which we did. I was taken into the ICU resuscitation room as I was having difficulty swallowing and examined by doctors and various preliminary tests carried out. They then found me a bed and I spent nine days under their care diagnosed with Ramsey Hunt Syndrome. To cut a long story short during this period I had a gastric nasal tube fitted and they fed me through this until I felt confident enough to swallow. I had anti viral, antibiotics, steroids and paracetamol intravenously or through the gastric tube with oromorphine occasionally when the pain was bad. To eliminate other causes such as a stroke I had an MRI on my head and neck, a brain CT scan, a scan of me swallowing liquids in real time, a hearing test showing I had lost fifty percent mid level hearing in the right ear and was discharged with a printed list of all medication to continue taking thereafter at home. All in all a very thorough service under the NHS.
I am now some four weeks after that first Sunday and three weeks after the following Saturday's facial palsy occurrence recovering at home with my dear wife nursing me like Mother Teresa.
I have no energy, but from what I read this is not unusual.
Upon taking the steroid medication mid morning I go into a period of four hours of nausea, debilitating pain and discomfort with my sight jigging to the right. This wears off early evening.
I am eating using the left side of the mouth only but not huge amounts and have lost about ten kilos over this period with leg and arm muscle wastage as I have to lay down during the day and doze to relieve the discomfort.
I sleep intermittently at night but this is not surprising due to the days lack of activity.
I am using lacrilube all day on my right eye which does not close and wear a pad with more lube at night to protect it.
I gave up taking paracetamol analgesics after about one week from hospital discharge as they were giving me more discomfort than pain relief.
So now I have twelve more days of the accursed steroids and will then be off all medication. At least then I can eliminate side effects from these and evaluate any improvement.
I am seeing EN&T, nerve and Opthalmologist consultants over the next ten days and will report back.
I hope my tale of woe is helpful and appreciate any feedback.
I am hopeful that the pain will subside and the palsy will go and am grateful that this is not a life threatening disease however it is not a bundle of laughs either and I feel for all of you with similar conditions.