Since I was diagnosed with Ramsay Hunt Syndrome, I’ve been trying to learn all I can about what is happening to me and what the future holds. Let me share what I have learned so far — if you want a true medical explanation, this link is the best article to understanding the science behind it all.
Here is my layman’s attempt to explain what is going on.
What is Ramsay Hunt?
Ramsay Hunt Syndrome is a term used to describe a group of symptoms caused by a Shingles infection in the nerves of the face and ear. It usually only causes symptoms on one side of a person’s face. Patients will usually have a palsy from their eyebrow to their chin and facial muscles, including those for the the eye, do not function. Loss of hearing, taste, touch, and balance are common with the nerve damage from Ramsay Hunt.
The Phases of Ramsay Hunt
This is where patients start to show outward symptoms of nerve damage — usually facial palsy is the first symptom identified. It can often take doctors weeks to diagnose the source of the problem as a Shingles infection. I was incredibly fortunate that my doctors recognized the symptoms very early, and I was put on medication as quickly as possible to minimize permanent damage.
During this phase patients are given large dosages of anti-viral and steroid medications. The anti-viral medicine is used to stop the virus. The steroids are used to reduce inflammation of the nerves. It is crucial to stop the nerves from becoming inflamed. Nerves can be permanently damaged because of the inflammation caused from Shingles. If they are permanently damaged, it will result in loss of function for a lifetime.
The acute phase lasts several weeks. The medications are usually given at full strength for at least 14 days, then tapered off for another 7 days.
During the entire acute phase, there is often significant pain in both the face and the ear. Doctors may add additional medication to help with this pain.
The recovery phase for Ramsay Hunt can be weeks, months or years depending on its severity. As the swelling in the nerves reduces, patients will see symptoms decrease and function return.
How has it effected me?
I’m still in the acute phase of Ramsay Hunt. I have been tapered off the anti-virals and the steroids, but I am on Gabapentin and Tylenol to help with the pain.
One significant symptom at this point is the vertigo or loss of balance. At this point I can only walk around for about 10-15 minutes before needing to sit. It feels like I’m on a roller-coaster all of the time and I often shout “Whee!” as I turn a corner because it feels so strange. I walk around the house holding onto objects to reassure myself I’m not falling over.
Sensory overload is another difficult symptom to learn to manage. It’s like living in what I think of as a ‘house divided.’ If you draw a line right down the middle of my face, I feel completely different things on either side. I see different, hear different, touch different, taste, smell, and even breathe different. It’s like having Beethoven playing in one ear and Metallica in the other. All the time. This is exhausting for my brain to interpret all of these signals and I have sensory overload and exhaustion fairly quickly. Sitting in a quiet, dark room helps to calm everything down.
Currently I have mild hearing loss in my right ear. I can also really listen to one thing at a time. For example, if someone is talking and opening a Rice Krispie treat at the same time, I can’t hear the talking, just the crackling of the wrapper. After some experimenting, I can tell at the piano that my right ear cannot hear notes below the B seven tones above middle C. Sound location is very different between my two ears and can be disorienting.
I am very fortunate that my facial palsy is mild. I can move my mouth and cheek if I concentrate. I can talk, but my mouth does get tired and I slur words together after a bit. The more I talk, the more the facial palsy will manifest itself and my right side will show more of a drop.
My eyelid still works(it is common that eyelids won’t close in Ramsay Hunt patients) but the facial nerve has stopped signaling to my eye to make tears. Because my eyes are dry, I cannot wear contact lenses and have to put eye drops in frequently to prevent damage to the cornea. Luckily, I ordered a bunch of cute eyeglasses in December, so I’m all set there.
My sense of taste has diminished significantly and my tongue does not work the same. I can’t drink out of a can or cup — only straws for now. I had lost all sensation in my tongue completely for about a week, but I can now at least tell that I have teeth. I can’t feel cold or hot on my tongue, so when I take a drink of ice water, I don’t feel a temperature change until it hits the back of my throat. So strange!
When will I get better?
I get this question often and I wish I had a good answer. Every patient who has Ramsay Hunt recovers differently. Because I was treated so quickly, I do have every hope of recovering most functions.
What is it like living with Ramsay Hunt?
As of today, I can tell you where I am, and what my daily life has become. My main goals have been reduced to the following:
- Get my kids off to school in their normal routine
- Accomplish one to two other things daily. Depending on how much effort, I can usually take on one or two small projects like cook a meal, laundry, drive to the store
- Walk 2,000 steps daily — this is essentially my physical therapy for the vertigo, and I will start trying to increase activity slowly over time
Other than that, right now I sit in a chair and either read, rest or watch tv. My body just simply can’t take much more, it gets too woozy when I move around. I am incredibly tired, so I sleep often. However, I am noticing that each day I am slightly more stable, and I try to push just a little more when I can accomplish.
Throughout the last three weeks I have seen incredible blessings in action as I have started my journey with Ramsay Hunt Syndrome.
Despite my hearing loss, balance loss, and slight facial palsy, I am so lucky to be as functional as I am — most Ramsay Hunt patients are either hospitalized with surgeries or completely bed-ridden at this point in their Ramsay Hunt experience.
I can drive, I can move, I can talk, I can be a mom to my kids. I am incredibly blessed to be able to do this. Fortunately, I also know that this is likely as bad as it’s going to get and things should get better from here. Recovery is going to take a while — I’m going to have to fight my way back to where I was before this started, but right now I have all the hope that I can get there.