Wednesday, February 21, 2018

My Battle with Ramsay Hunt Syndrome (The First Year)

So I am going to warn ya'll now. This is not my normal "happy" post but I wanted to share with you the battle I am currently facing (no pun intended).  I was recently diagnosed with Ramsay Hunt Syndrome as a result of Shingles.

Yes, my age! Who knew this was possible!!? Where and how did it start?

Photo by Mayo Clinic

Three weeks ago I started with a sore throat that was slowly moving into my ear.  I debated going to the doctor but had no fever.  I called "Tele Doc" and was given an antibiotic.  Three days later, my throat was more sore, swallowing was difficult, I had a fever and I start vomiting.  Hubby brought me to urgent care where they suspected Strep and a possible tonsil abscess.   Ironically, while sitting on the exam table, I noticed one red bump on my back, but didn't think much of it. The Physician's Assistant dismissed it as a bug bite.  I was given a new/replacement antibiotic and a steroid for inflammation. 

I rested at home for four days, but felt worst each day.  My fever was still around. I had a few more bumps on my back.  And just didn't feel good.

For lack of a better term, "all hell broke loose" when I woke up on a Thursday morning.  (This would be six days after starting the first antibiotic for possible Strep). I could barely hold up my head. My world was spinning. My vision was blurry.  I quickly noticed that my mouth felt odd. (Was I having an allergic reaction?)  A quick look in the mirror showed me that something was off (but I couldn't pin point it) and I was having trouble closing my eye.

Husband brought me to the Emergency Room.  The fear was that I was having a stroke.  Within minutes, there was a room of technicians and doctors working on me.  (Thankfully it was calm. No high drama like you see on TV).  I was immediately sent off for a CT scan of the brain and tons of bloodwork was ordered. 

Fortunately, the Emergency Room doctor was thorough.  We spoke about my recent sore throat and ear ache.  She asked if I had a rash.  I showed her my back, and she immediately said to me, "You have shingles!"  Anti-viral medication and steroids were started immediately.  A stroke was ruled out and I was told that I also had "Bell's Palsy".  Basically, the right side of my face was paralyzed but the left side worked just fine!

The first few hours were the toughest.  I had to learn to "tape" my eye shut to protect it. I was given large pills to swallow, but only half of my mouth worked!  I couldn't use a spoon the correct way, so I had to basically lick yogurt off the back of spoon.  And even with IV fluids and meds, the vertigo grew!   I stayed in the hospital under observations for 48-hours.

Day 1 (in the hospital)

Back home (Day 3) was exhausting.  I just wanted to sleep but at the same time, I wanted help. Heck, I needed help.  I could not take more than 3 or 4 steps unassisted.  I honestly have never felt so sick and "out of it". My kids were afraid. Everyone was "waiting on me" and our routine was off. 

Day 3 to Day 12: The next few days were filled with appointments: Primary Care, ENT, Ophthalmologist, Neurologist, MRI scan, etc. My bedroom side table was full of prescriptions. Thankfully I have a wonderful husband who kept me on track.  I was continually being told at my appointments, "Rest and have patience!"  I felt very little improvement. (In fact, around Day 8, one doctor debated putting me back in the hospital!) I lost 13 pounds (as my diet consisted of mostly yogurt, pudding and nutritional drinks).  The right side of my face was a total mess. I still couldn't blink, couldn't lift my eyebrow, couldn't smile, mild hearing loss, blurry vision and dizzy.  I was getting frustrated and almost feeling hopeless. My energy was slowly coming back, but I realized this would be a journey.

Here are a few tips that helped me in the beginning and hopefully they can help someone else down the road.  (Note: I'm not a medical professional. These are just my opinions.)

  • Let other's help you! My husband had to wash my hair. Friends delivered meals to my husband and kids.  Other helped drive my kids to and from school.  
  • Turn off your cell phone or give it to a family member. You need to rest.
  • Meclizine and Xanax helped with my vertigo. And helped me sleep at night. 
  • I had to take Zantac twice a day as the steroids caused a cough from acid reflux.
  • Lots of web sites recommended B-12. I found a lozenge that I could put under my tongue.
  • I'll say it again...Rest! Some days I would take a 3 hour nap! Listen to your body. 
  • Drink lots of fluids. Water and Gatorade were constantly on my night stand.
    • As for eating, take it slow. I started with pudding and yogurt. I enjoyed Ensure nutritional drinks over ice with a straw. Eventually, I was able to eat chicken noodle soup, watered down mashed potatoes and noodles.  
  • The Ophthalmologist I saw said to use lots of eye drops during the day and eye gel at night. (She told me not to get the artificial tears in the bottle, but to get the ones in the little vials such as Refresh. Make sure to get preservative free!)  She also recommended this goggle (pic below) at night as it traps in the moisture.  It's available in full goggles (both eyes), but I chose the single eye version. Available on Amazon.  

Day 13:  I saw a second ENT.  He is the one who confirmed "Ramsay Hunt Syndrome".  Basically, Ramsay Hunt is more complicated than Bell's Palsy.  I was told that Bell's Palsy was caused by the herpes virus and Ramsay Hunt was caused by Shingles.  Bell's Palsy improves in 3 to 6 weeks,  whereas Ramsay Hunt Syndrome takes longer (average 3 to 6 months). The good news is that the medications are the same for both conditions, antivirals and steroids, so I didn't miss any treatment. 

My ENT believes the shingles was in my throat (not necessarily in my ear canal as classically seen in Ramsay Hunt)  The ENT also said the facial nerves on my MRI were "lit up" meaning lots of inflammation. There were no signs of a tumor or stroke.  On the plus side, a ENoG was done and the prognosis is great (meaning I should heal completely with time).  ENT will said he see me again in 2-months for a follow-up; and in one-year they will repeat the MRI. 

Being confined to home is HARD. I've always been an active person, so patience is getting the best of me. I miss my weekly trips to Disney World.  I miss walking the aisles at Target.  I miss coffee and beer (hell, I miss not being able to use a cup like a normal human!).  I miss cooking dinner for my family. I miss picking up the kids each afternoon and hearing about their day at school. I miss work. I miss putting on makeup each morning. 

Day 13: Little improvement (Right-side facial nerve paralysis)

Day 14 - 18: Small improvements.  Finished the anti-virals and began to taper off the Prednisone. I can do more around the house (like helping pack kids lunches or help prep dinner).  Total weight loss is still at 14 pounds (probably because I haven't had a coffee, Coke or beer in so long!).  I spend most of the days on the laptop (playing on social media or updating my blog) and watching TV.  I don't quite feel like doing much more. The vertigo makes me feel like a prisoner! It's hard to do much when the world is constantly spinning. (Meclizine helps but I try to only use it when I have to leave the house for an appointment.)

Day 19: Began vestibular therapy.  I didn't realize how bad my balance had been affected!  I can't stand on one foot longer than 3 seconds!!  I can barely walk a straight line. Insurance approved 12 visits total and I was given many exercises to do at home twice a day. The physical therapist also reminded me that I am still in the "rest and relax" phase. She told me not to get over-stimulated. As for the facial paralysis, I started to get some feeling back in my nerve endings (near the corner of my lip and the inside corner of my eyebrow). Still not able to blink, but I can now shut my right eye with effort! 

Day 20:  I can pretty much chew anything now.  I eat slow and it's not pretty but I can do it!  Taste buds are still gone. I still need a straw to drink (as drinking out of a cup just doesn't work for me yet). Today was, my first "outing". A friend picked me up and we went to get pedicures. I was only out for about 90-minutes, which was perfect. The nail salon was not busy (thankfully). I was worried people would stare and ask questions, but no one said a thing. Ironically, the owner of the shop suffered Bell's Palsy years ago. She highly recommended acupuncture to me.

Day 21-29:  I continued with vestibular therapy and at home exercises to work on my balance. I started getting ice pick headaches above and behind my ear. The doctor gave me a RX for Gabapentin to take at night.  (I tried one dose. I didn't like it and don't plan to take it again.) People say I am looking better, but I don't see it. I am still spending my days at home as I don't yet feel comfortable being out and about (due to vertigo).

Day 30: I still have a crooked smile.

Day 31-35: Trying to get out of the house a little bit each day. It feels odd but I need to get back to my life.  I like to have a person and/or shopping cart with me to help my balance.  I'm starting to move my (right) lip and eyebrow a little bit more!  I still don't blink my right eye, so I continue to use preservative free eye drops several times a day. My taste buds are waking up. 

Day 36: Bronchitis set in (not related to RHS). Starting a steroid pack and antibiotic. Vertigo improving some thanks to continued Physical Therapy. I'm doing yoga (online classes/streaming video) two or three times a week as well.  

Day 47: UGH - Set back! Just as I was starting to drive and get out more, the shingles rash re-appeared on my back! It was mild and I recognized it early. The vertigo came back somewhat too! (Not as bad as Week 1, but more than I had been experiencing.) I called my doctor and was prescribed a 7-day course of Valacyclovir (Anti-viral med).

Day 52: Easter Day. I decided to go to mass and brunch with my family.  I didn't have time to find a new dress for Easter. this year (not top of my priority list). I decided to wear last year's dress.  When I compared a "side by side" from 2017 and 2018, I was really depressed. (In hindsight, I should not have compared. It was the worst thing I could do!)  I posted the below pic on my FB support group page.  Many reminded me that I am only at week 7.  Ramsay Hunt takes TIME.  Many take 6 months to heal, so I have a ways to go. (Ugh that would be another 128 days! Patience is hard for me!)

Someone else suggested that I try to part my hair to the other side so I am showing my good side and hiding my affected side. That's a great idea, I may try it soon.

Day 60: Hard to believe it's been two months since this journey began. My vertigo is about 90% gone; however, I continue vestibular therapy twice a week. (And I try to do light yoga at home three times a week to build up my strength.)  I can go to the grocery store on my own now!  Oh, I am driving locally (within a 5 mile radius).  As long as I have on my sunglasses, I feel others don't notice the symptoms.

Brain fog is an issue at times and I take a nap each afternoon. (Thankfully, I work from home and have flexibility with my schedule.)  I still don't blink my right eye, and I still have a crooked smile.  However, my taste buds work again. I don't take shingles medications at this point, but I continue to take a multi-vitamin each day, along with extra Magnesium, Vitamin D3 and Vitamin B-12. I also take high doses of Probiotics in hopes of rebuilding my immune system. 
Day 12 vs Day 60 (No makeup)

Day 68: Saw the nurse practitioner at my ENT's office for a two-month follow up today. (Really a waste of time.)  Yet again the words "time and patience" came up.

There is a lady in my online support group who got her smile back in one week.  Yes, one week!! On the other end of the spectrum there are folks in my group who still have facial paralysis at 3 years. Why some people heal quicker than others is a mystery! ( Ugh, I am really missing my smile!)
Day 68: Resting face, smile with lips closed versus smile with lips open

Day 79Reality hit me hard today. THIS SUCKS! (Yes, some days are harder than others!) I went out to Dapper Day at Disney World today.  The pictures of me are horrible.  I don't even recognize myself anymore. 
Before RHS vs Day 79
Day 101: My face is finally starting to look "normal" again. My smile is coming back as you can see below, but my eye still does not blink. The vertigo comes and goes, but mostly good days now! I continue with physical (vestibular) therapy once a week.
(Day 7 vs Day 101 ABOVE)

Day 110: Well darn it. I am had a major setback or perhaps a relapse.  I have had "ice pick" headaches for a few days and tried to ignore it.  But then woke up with a horrible earache on the affected side and felt "tight" in my face.  Sadly the Bell's Palsy was trying to set back in as you can see in the picture below.  I saw my doctor and was put back on steroids (4 weeks!) and Antivirals.  So frustrating because I was really feeling better and I was ending this terrible journey!!! 

Day 132: (or Week 19)  Finishing up the last couples of days of Prednisone (half-pill each day/weaning dose)--and yikes, my complexion is a mess (acne). I am no longer in physical/vestibular therapy as my vertigo is so so much better now. I drive within a ten mile radius of my home but haven't felt safe going much further. In total, I think I did about 12 sessions of PT. They were really helpful for me, especially in the early days of this awful syndrome!

I am now able to drink with a normal cup if I have to, but I usually end up with spills or dribbles.  I still prefer a straw if one is available.  Watching me eat is probably not fun for my family.  Maybe it's just me, but I feel like I chew very loud.  And I will admit that on occasion food will fall out of my mouth. Ugh, not attractive!

The craziest thing is that I still don't blink my right eye (but the tear duct plug has been great!).  I use less drops than before. I would say my smile is about 80% or 85% back, I guess. It really depends on how tired I am. Some days I look better than others. I've learned that when I take pictures, it's best to tilt my head to the side.  For some reason it looks better than straight on (see pic below).

One last thing...I am in shock that I haven't gained back any weight yet.  I lost 15 pounds total (2 dress sizes) and am starting to shop for a new wardrobe.  Since this started I have added lots of protein to my diet and cut back on carbs. I try to eat "clean" and organic when possible. I also take lots of vitamins now (High potent multi-vitamin, Magnesium, D-3, B-12, Probiotic and L-Lysine) as well as a scoop of collagen peptides in my morning coffee. I also drink lots and lots of water throughout the day.  

Day 179 (roughly 6 months):  The good news is that I am finally blinking again! The bad news is that Synkensis (the development of linked or unwanted facial movements) is setting in; as well as hemi-facials. (My face feels really tight especially in the cheek area under my eye!!)  Insurance has approved the use of Medical Botox.  My optometrist will do the injections for me later this week.

I met with a speech therapist today.  She showed me some facial muscle exercises I can do at home to help with the "tightness".  She wants to try electric stim on me, but many in my online support group says it can cause more harm than good?! (I need to research and chat with my medical team.)  

Overall, my speech sound much better than it did six months ago.  My smile continues to look better. But I still have trouble with puckering, puffing out my cheeks, and drinking from a cup.  

The dimple in my chin is new. It's a sign of Synkensis.

February vs May vs August
Do you see my eye starting to squint in the last photo? Unfortunately, that's a sign of Synkensis.  

Day 180ish (SIX MONTH UPDATE): 
ENT Visit:  Hearing test showed my hearing is back in the normal range (Praise the Lord!). Repeat MRI in February at the one year mark. 
Facial Paralysis: Still present.  It is not so noticeable in still photos but when I speak you can definitely see it! I still can't puff out my cheeks or blow out a candle. 
Botox Update: I got 16 units around my eye and 4 units on my "chin dimple". The Botox has relieved the "tightness" I was feeling in my face and I look more symmetrical. See the picture below!

Day 202 (6-1/2 months): Last night I felt a little bump in my ear.  This morning, I had my son look at the ear and he sees a "red mark".  Freaking out, I asked my online support group.  Many there were worried it was a shingles blister so I ran to my primary care. A swab was done and FORTUNATELY IT WAS NOT SHINGLES!!

Day 270/9 months: My smile is still is not perfect.  (I am getting my second dose of Botox later this week!) I can see the tightness in my neck here, too. 

Day 301/10 months: I've pretty much faced the fact that I will never have my "old face" back. The facial paralysis is now a part of my life that I have come to accept.  Thankfully, Medical Botox every 90-days helps with the muscle twitching (caused by Synkensis), but there are things I will never be able to do again (puff out my checks, swish water around my mouth, lift my eyebrow, give a full symmetrical smile). But ya'll, life goes on!!!

We recently took family pictures for our annual Christmas card.  There was a quick second where I wanted to cancel the photography session, but then I remember that I would be hurting my family  I am trying to be a good role model to my kids.  I want to show them that we can't hide from our troubles. And more importantly, that looks don't define a person.

One (more) closing thought...Each morning, when I look in the mirror, I CHOOSE not to scream or cry. Instead, I am reminded of the lesson I received from my RHS journey -- a reminder to slow down and enjoy all of life's moments.

Day 324: I made it through the Christmas season and felt pretty good about myself.  Below is a picture of me when I try to give a FULL smile  As you can see my eye (still closes). This is probably the biggest "problem" I have now.  I usually try to give "smirks" or closed-lips smiles in my pictures so this doesn't happen. You can also see the tightness in my neck muscles. I haven't addressed that yet. 

(By the way....A couple of tips to others with RHS when taking pictures: 1. NEVER look straight at the camera. Instead, angle your face. 2. Don't give a full smile; give a smaller smile or a little smirk. 3. Play in the mirror or try taking a few selfies with your phone to find what works best for your face.) 

Day 362 (One year) MRI: I was nervous but stayed strong. As I have done in the past, I wore a sleep mask during the procedure and took a Xanax.  The hard part is waiting for the results (2 to 3 days). As for my paralysis -- My smirk looks fine but my full smile needs some works.

I was dizzy the past few days, and woke up once with night sweats.  I was worried I was having a relapse, but now think I was fighting a cold or virus. Funny how even a year later, I am so worried about a relapse! I guess that will always be in the back of my mind. It was a rough year!

That wraps up my first year. living with Ramsay Hunt Sydrome..

To continue reading more about my journey, please head to 

My Battle with Ramsay Hunt Syndrome (Year Two).