Oral Shingles--Four Week and Counting Nightmare

Dear Amy,

I literally feel your agonizing excruciating pain and balance issues and other symptoms. You have Ramsay Hunt Syndrome, which affects the mouth, throat, and ear. The Cranial Nerves V, VI VII VIII IX X can all be affected with this Herpes Zoster-Shingles, and it is with me.

It was not diagnosed with me, either, and I received no analgesics or antivirals.

I felt I was giving birth through my ear canal while being tased. I have/had severe swallowing difficulties due to jugular foramen syndrome with every recurrent episode that occurs in my right ear every three to five weeks for the past 21 years.

I saw two ENTs who thought I was narcotic seeking, until I saw a Neurotologist who diagnosed it.

This is why I am so active on this forum. I do not wish this disease to cause this suffering on anyone. I am so sorry for what you have gone through!

I8 Yu I literally wanted to cut out my inner ear to the center of my brain.

The fatigue and exhaustion are part of the Herpes Zoster-Shingles, and can last months. If your ear still aches, you might ask your physician for Auroguard, an Otic drop that you instill in your ear canal. It contains Benzocaine, which helps numb the nerve endings. I use it with my acute episodes. I warm it to tepid with warm water and it feels so good.

I am so sorry you went through this horrid experience. So many Physicians remain abysmally ignorant about Herpes Zoster-Shingles, and the many manifestations of it.

I felt fortunate when the Neurotologist finally diagnosed it, but it was 3-1/2 weeks after the severe pain started. I couldn't take anything, as I am extremely allergic to NSAIDS-Anaphylaxsis. Now I take Oxycodone for acute episodes, and Topiramate and Venlafaxine daily.

PREVENTION

1. Please get your Vitamin D level checked, as a low Vitamin D level will affect your immunity. My Vitamin D was 14. Once I started the Vitamin D3 supplements, the frequency and severity of episodes decreased.

2. Google Herpes and High Lysine Low Arginine diet. I am certain that eating this diet also has helped decreased the frequency and severity of episodes. The amino acid Lysine prevents episodes, and Arginine triggers the episodes.

3. There is the new Herpes Zoster-Shingles vaccine Shingrex by GSK Glaxosmithkline. It is 93 % efficacious as opposed to the old vaccine Zostavax, which had an efficacious rate if 53-37%.

I plan to get the Shingrex. It was just released this year.

Please let me know how else I can help you! Do you have any facial drooping? Look at night when you are the most exhausted!

I am a Nurse Practitioner in the States.

Best Regards

Merry Juliana

What you described is exactly what happened to me in November, only on the right side.  I went to the doctor 3 times before they decided it was shingles, and that was only because by then I had a single blister on my right collarbone, took a picture of it and sent it to my sister who is a nurse and had been listening to my ongoing illness issues since it started.  She immediately texted me back and told me I had shingles and needed to call my doctor’s office and tell them.  They too thought I had strep first and then cocksackievirus when the strep test came back negative.  I was sicker than I have ever been in my life with this, and I am a 6-year breast cancer survivor who had a mastectomy, reconstruction, and 6 rounds of chemo.  Shingles was 1000 times worse than that was!  I lost 25 lbs.  All I could eat for 2 weeks was jello.  Anything else would make me vomit.  I also had to have Phenergan prescribed for the intense nausea.  It was a good 14 weeks before I felt almost normal again.  Still haven’t gotten my tastebuds back - I now chew sugarless gum constantly to deal with the horrid taste in my mouth.  Still can’t eat a lot at a time.  My throat starts to close up and I have to stop.  Still don’t have much of an appetite, either.  Still have a slight tickle in my throat, but that has actually improved in the past week.  Spicy foods seem to set that off and send me into an uncontrollable coughing fit.  I’m also still sleeping soundly for 8-12 hours a night.  

I recently went to my dentist for my 6-month check up and told her about my ordeal.  She told me that the medical community doesn’t know a lot about shingles and she’s actually had MD’s tell her you can’t get shingles in your mouth, to which she’s responded that yes, you indeed CAN get shingles in your mouth!  She told me it’s a long recovery and it could take up to a year for the tastebuds to return to normal.  She also said that if they haven’t done that within a year, they probably aren’t going to.  Not what I wanted to hear.

The best advice I can give you is to just rest, rest, rest.  Hopefully you can do that.  It’s a debilitating, long-lasting illness and it just has to run it’s course.

Mine was on my scalp, forehead, eyelid, with a couple in my ear and nose.  OMG, I didn't know anything about this prior to getting it which occurred in earlyish Feb. of this year.  The pain and fatigue were awful at first and got worse for like the second, third, fourth, fifth, sixth, and seventh week.  "Why aren't you better now?  You look better."  I still have that "after shingles" PHN pain with my head and forehead numb and my eye stuck to the right so I cannot focus clearly and that makes me not be able to think clearly.  Today was the first day I attended my son's Little League baseball game.  This is a horrid disease and yours sounds one hundred times worse than mine.  I am so sorry you are going through this.  

Really sorry to hear about your suffering....

Our (Me and my wife) story might be helpful to other forum members

Feb 15th - We went on a road trip from Riyadh to Dubai (Apprx 10 hrs travel).

Feb 25th - My wife developed something which looked like a normal mouth ulcer. I got some Glycerin of the pharmacy and she applied it.

Feb 26th - No improvement, her pain increased, and when i saw inside her left cheek, i found red rashes along with the ulcers. Rushed her to the hospital. Doctor said it is both Bacterial and Virus infection and gave us Tabs along with Pain Killers.

Feb 27th - No improvement in pain relief, nor the infection inside her mouth

Feb 28th - Visited another doctor (family doctor of my friend), who is a MD in Internal Medicine. At the first look he said "Its a clear case of Herpes Zoster". Doctor gave some Anti-Viral and Pain killers and asked us to come the next day.

Mar 1st - Morning, i saw some blisters (like hot boils) on a lips and chin. We again went to the same doctor, and he confirmed it was Herpes Zoster which has affected V2 & V3 nerves. He doubled the Anti Virus from 400 MG to 800 MG (5 times a day) and gave a pain killer which he had to get government consent to prescribe. He said that the virus would stay for 7 days and slowly wear away. But asked to visit a ENT doc in Riyadh.

Mar 5th - There was good improvement with her infection and pain. She was able to open her mouth a bit and communicate. We had to leave Dubai to Riyadh as my vehicle Insurance was expiring.

Mar 6th - Drove back to Riyadh and visited an ENT. Nothing much changed on the medication.

Till March12th - She started having shooting- unbearable pain. She used to jump up and down and cry....felt bad for her. We were just 2 of us in Riyadh, and she needed someone 24/7 beside her. I was compelled to fly her to India under her mother's care.From day one, an inhouse doctor is treating her and obviously prayers to gods has played major role in her come-back

She is feeling better now, but has numbness and some pain/irritation (on/off) on her cheek.

What did you guys do to lessen the pain?

* Sorry if my English is not good ....

I just found this. I thought I had Googled it all. Add me to the list of people getting over this madness. I am currently 5 months in. After about 6 weeks and an experience like most folks here I was able to return to work but life has not been the same since. I really have no appetite and most foods I used to love are not good to me at all, especially the former treats of morning coffee and an occasional beer. I used to love both, not overly so, but enjoying either is gone. My worst problem, and how I found this page, is the nagging constant metallic taste in my mouth. It comes on soon after I eat/drink something and doesn't go away until I eat/drink something else. Brushing teeth/mouthwash only help for a time. Alcohol? No way. Spicy foods? No thanks! Anything remotely vinegary? NO!!!!!!

I am so happy to know I am not alone. The frequent itchy throat (on impacted side) leading to coughing fits is maddening, as is the sensitivity where one tiny mistake of swallowing wrong or swallowing saliva accidentally can lead to several minutes of coughing hell. My other issues are mild depression, I think due to basically how this sickness has robbed a lot of my hunger for life, no pun intended. I don't eat much so I'm not as energetic, I no longer eat full or regular meals and life is generally not as enjoyable as it was. I can say that thankfully, compared to some poor souls here, I am not in active pain, just perpetual discomfort.

Also, of course my doctors didn't want to label what I had. I saw several during the first weeks of this, an ENT who gave me lidocane pops and said I'd be fine in 3 days, misdiagnosed strep, wasted time in the middle of the night in the ER when my throat was on fire, just like some of you. Eventually, all most at the end of the worst of my sickness (just before I returned to work) he did diagnose it as shingles in throat, giving me the oh-so-fabulous information that I might be dealing with this for the rest of my life. I have not been back to see him since. No pain medication worked. I couldn't even hold down nausea medication for ahwile. Couldn't take Gabapentin. Was put on the antiviral albeit too late, took every painkiller over the counter and not, nothing worked.

I'm rambling but I would love to know what some of you have figured out for metallic taste in mouth if you are dealing with it. I am almost convinced I'm stuck with this for life.

Thanks for reading,

Eric

Amy thank you for sharing your story!

this was the only place online i found that was close to my story.

38 yo Male, 2nd case if shingles in 15 years, healthy but recently covid vaccinated and exposed to covid (but tested neg mutliple times) right before onset of oral shingles.

-3 weeks ago terrible metal taste in tongue and throat, followed by painful bumps. diagnosed 2x as canker sores. after a few days if lesions a very smart 3rd doc identified as shingles in throat and immediately began valtrex, but no steroids, with gabapentin for pain.

-1 week ago they had mostly left my mouth and was feeling better, until i began waking up with zero energy, appetite and nausea. i was then put on prednisone which initially seemed to help along with zofram for nausea. . Day 2 of steroids caused extreme hiccuping (or could have just coincided) and increases nausea. my mouth continued to salivate heavily 24 hours a day, which made sleep incredibly difficult and increased nausea to the point if constant dry heaving or actual vomiting, resulting in a trip to the ER where i received fluids and scripts for Metoclopramide and pantoprazole for nausea.

The next day I Met with an ENT and zero issues with my nose, throat, ears and non answer on the hiccups or nausea. No on is aware of these issues and i had read that hicccups can be caused by prednisone so after talking with my GP he advised i stop 3 days short of completion.

The next two days spent again in bed (like most of the past 3 weeks) hiccuping, dry heaving/random vomiting and very little to no food.

Today, early week 4 and I'm starting to eat more and move around. Still hiccuping/spasming but managing to keep food down.

Q: has anyone else had these ongoing spasms/hiccups without prednisone? Has anyone determined if its the virus affecting the nerve that enacts spasms?

Mostly though did it ever stop?? I cant stand this drooling, spasming, nausea cycle.

thanks all! its great to not be alone!