Facing Ramsay Hunt Syndrome
RHS Treatments
Day-to-day dealing with Ramsay Hunt; some days are harder than others.
I shot this video in September that I FINALLY got around to editing and uploading, while the video is shot for fun, it definitely feels like my current path:
Chaotic, back-and-forth, blurry, unclear as to the direction it’s going.
Do you know what I miss?
My smile.
My ability to sing (really miss this one).
Blinking.
Not having to drink using a straw.
Eating Sushi.
Whistling.
The ability to read. (my vision is screwed and my eyes hurt after a few hours)
NOT having vertigo when sleeping.
Non-chapped lips
Not feeling nauseous every day
Not having my eyes water ALL the time.
My energy.
My ability to brush my teeth (yes you lose your ability to spit)
Not drooling… yea I know REAL sexy :/
Recovering from Ramsay Hunt Syndrome
RHS (Ramsay Hunt Syndrome) is not something I ever expected to happen to me (didn’t even know it could happen). It's not forgiving as there is no end in sight. I am exhausted on a daily basis. I can’t focus on what I need to do. My energy level is basically non-existent which REALLY makes it hard to recover from knee surgery! It takes a lot and well some days, I have NOTHING to give.
They do not know when it will end, that "maybe" at some point, it will and my face will go back to being normal.
Do you know how that feels?
Not having control, knowing the doctors don’t know if there is an end! Not knowing if this will EVER go away? I’ve taken the meds that are “supposed” to help. The virus in my ear is gone. No more pain there. I’m done with the steroids and let me tell you, I don’t get how these became a thing in the “gym”. Why anyone wants to put their body through what steroids can do you is beyond me. I definitely did not feel like myself.
I noticed a massive drop in my energy as I came off the meds, and I’m pretty energetic normally. I walked roughly 10k steps a day before I had the TKR and RHS occur.
Right now I feel like I’m a test rat and they are seeing what works; experimenting on my RHS just to “try” something. I’ve been scheduled for an MRI at the end of the month. Hopefully, it will provide more answers as to what is actually preventing my face from working. It may mean surgery, which I REALLY don’t want but if it is the ONLY option, then it is and I will deal with it then. Until then I will continue to research alternative options. My ENT doc wants to put weight on my eyelid to help it close. THAT freaks me out more than the knee or any other surgery I’ve had.
My eyes, well they are kinda important to me. As a photographer, you really do need them. I mean I tried contacts and sticking them in my eyes and removing them was not something I could do, I tried, and tried. I now wear glasses.
I’m debating, at this time, no. I don’t want the surgery. I may change my mind in time but...eh.
Using Acupuncture to Help with Ramsay Hunt Syndrome
I did finally schedule an acupuncture appointment this past Tuesday. I was a bit nervous but knew that regardless the needles would not hurt as bad as getting a new knee.
However...my friends and family know I have never been a fan of needles..yes I have tattoos but that’s different, they aren’t sticking me with a giant-HUGE-gonna-make-you-really-bleed needle.
I was unsure of how I would handle having Acupuncture needles stuck in me. I explained to her that I was not a fan and she made me feel relaxed and at ease. We discussed what was going on with my face, and had a 30-minute consult. She discussed what she was going to do to help with the nerves to try and get them firing again.
It wasn’t as bad as I thought. No real pain, just pressure. Not only did I have the needles in my facial nerves, but they were also in the four points, or as they call it Meridian*, on my feet and hands. She then attached electric stimulation with the help of a tens unit to the needles in my face. This generated electrical pulses in my nerves. The sensation of the nerves reacting was a relief however I’m not noticing any real change, not yet anyway.
Over the last couple of weeks, I’ve had instances of the nerves in my face, nose, and mouth reacting with quick sharp pings but is only briefly and then disappears. It’s hard to describe, it’s like I’m being tickled, well I react like I’m being tickled. It makes me tighten up and shake my head. It’s an unpleasant feeling but it does give me hope.
However...each day I wake up and I have the same face doesn’t want to work.
(*In acupuncture and Chinese medicine Meridian means any of the pathways along which the body's vital energy flows. There are twelve such pathways associated with specific organs.)
Support for Ramsay Hunt Syndrome
I started looking into support groups for people that have Ramsay Hunt because while my friends and family are really supportive they don’t know how this feels. They can guess, sympathize and give me all the encouragement that it’s going to go away and that it’s looking better but I think I need to find people that have had the same experience and hear their stories.
Last night was rough. Yes, I cried again for the millionth time. Screamed and then I just got pissed. Not understanding why this happened to me.
I went to dark places.
I wonder… what happens if this never goes away?
Today, well today is better. I did cry some more because this thing that prevents me from feeling normal is still here.
I then got a phone call, in the middle of trying to mentally put myself back together, from my brother.
I needed it.
We both have the same two voices in our heads when we get low and having that weird connection helps us get through our hardest times.
“Get up!... Move Forward.
“Stop feeling sorry for yourself and solve the issue.”
“This to in time shall pass”
These are the cliff-notes quotes. The real versions typically happened over the kitchen table, over the phone during long discussions, arguments, and talks.
Some people may think these are not the quotes you should remember from growing up. They are however the voices we hear and they keep up moving forward and pushing on so we can get past the low points, the times when you think you are alone.
What you don’t hear is the love that is behind those voices. It may not have been easy sometimes having a father that I am EXACTLY like and a mother whose voice I hear every day playing devil’s advocate!
They are however the voices that taught us both how to get past struggles, overcome obstacles and figure out how to chase dreams. So a little shout-out to the folks that raised us, Jack and Janet;
Thank you.
I know I will get through this but DAMN days are hard! I KNOW that this paralysis, while depressing knowing I may have no end in sight; I am living. I am surviving and right now it’s teaching me the definition of patience. Me = Not patient
So I had my day. My meltdown. Today, well, today I change my attitude and chip away at the projects, plans, and future.
