Oral Shingles--Four Week and Counting Nightmare

Infections
1

Wanted to share my experience to see if anyone else has had something similar and hopefully if I document my horrible ordeal this might help someone else. 

I'm 51 year old female, no health issues or stressful events recently:

-Day 1: Started with 2-3 days of tingling burning sensation in my mouth, metallic taste, I thought I burned my mouth or tongue was irritated by toothpaste or something else.

-Day 3: Developed painful sores on one side of tongue and left side of tonsil and back of throat

-Day 4: Extremely painful to swallow, not able to eat or drink, went to Urgent Care. Tested negative for Strep; they mis-diagnosed me with a viral sore throat, gave me steroid pack and said I would be feeling better in 48 hours.

-Day 6: Still could not eat or drink. Shooting pain in left ear, and from left jaw up side of face to scalp. New blisters on center/left of roof of mouth. Went to primary care. Asked about shingles since everything occured on left side. They said, no, you cant get shingles in your throat. Diagnosed me with viral infection and canker sores, possible caused by Coxsackie virus. I asked for anti-virals, and they said they didn't work for what I had. They said the shooting pain was due to swollen glands pressing on the nerve and that this was common. I asked for pain medication and they prescribed me Lidocaine to numb the pain so I could eat, and said I could take 800mg of Motrin. This does NOT work!

-Week 2: Suffered horribly and just waited for the 10 days-2 weeks to be over thinking that is how long the viral infection should last. Lost 8 lbs, became very weak, pain bad at night, trouble sleeping.

-Day 12: Blisters started to go away, was coughing up yellow stuff, thought I was getting better, but very weak and still had shooting pain in ear, face and head. Could not taste food, or tolerate anything but liquids or soft bland food.

-Day 16: Became nauseas and developed hiccups that would last for hours for three days. Could not eat without gagging and throwing up. Developed airway coughing fits after trying to eat or drink.

-Day 18: Back at Urgent Care: Had lost 10+ pounds, very weak and dehydrated, was given IV fluids, and they took bloodwork to see if there was underlying cause. Bloodwork came back "normal". Extreme pain in throat and ear, conjunctivitis in left eye, thrush on tongue, shooting pain in head, extreme fatigue. Still diagnosed with a viral throat infection.

-Day 20: Went to ENT. They did a Laryngoscopy. Ear and throat looked "normal". Based on all of my symptoms and continued pain, was finally diagnosed with shingles. Put on anti-virals even though it was probably way too late for them to be effective.

-Day 28: Went back to primary care to get nerve block Gabapentin. 

-Now (Day 32): Developed balance issues--walk, lean and even drive to the left. Earache. A lot of throat pain each evening and nighttime. Can eat better, but sometimes develop searing pain on tongue or in throat on left side after eating. Nagging throat cough. Extremely fatigued. Finally went back to work, but not myself yet.

-No way of telling how much longer this will last....

2

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

3

Hi Amy,

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.

4

Merry,

Thank you sooooooo much for all of the wonderful info and insight! You are a tru shepherd on this forum!

Ive been so lost and singularly focused on surviving this, and now trying to slowly crawl out of the fog to become a human being again. I’m also still processing/accepting my diagnosis and questioning why this outbreak happened and the timing, etc. I was in really good shape, exercising daily and eating healthy, and very low-stress compared with other times in my life. Ive wondered if it could also have been brought on by fluctuating hormones given my age? It occurred right before my period when i usually feel more run-down. 

I cant believe how little the medical community seems to know or care about this, and are so easy to dismiss it as a possibility if you are younger than 65, and dont present the classic outward signs. Three out of the four doctors  were so dismissive of my very viseral pain and in general are so reluctant to prescribe any kind of narcotics these days. I felt i needed my husband there to help corroborate my story as i pleaded for help, and got nothing!

Now I feel like everyone expects me to be better and I have to explain that yes i am better than I was, which was feeling close to death, but Its not over and its not getting over quickly, and i honestly dont know if it will be another week, month, or year.  There is a stigma attached to chronic pain and thats the next hurdle I will be facing...

5

Hi Andrea

You are correct.

Breast Cancer surgery and treatments were easy compared to this. My problem is the choking and aspirating on saliva.

Merry Juliana

6

Andrea,

Thank you!!! I am in such need of support and to hear from others out there so I dont feel so alone and crazy and lost in all of this!

What’s hard to process is that the doctor says its really rare to get shingles in your mouth/throat, and secondly, only 10-15% get the post-nerve pain. So how did I end up with 2 very rare circumstances? Makes me question whether I need to explore other underlying causes that may have compromised my immune system? 

I cant imagine what you have endured with both cancer, surgeries and shingles!!! You are a very strong person! This really kicked my butt, took me down several notches and caused me to lose touch with the strong person i thought i was. I feel like i have such a low tolerance for pain now, since i was under such assault for an extended period without relief.

Its good to hear that yours took about 14 weeks, helps me to plan, gain perspective of where i am at 4 weeks. Im just going to take it easy, one day at a time and definitely REST, thats the best advice, and all I feel like doing anyway!

Amy

7

Oh, Amy, I am so sorry.  That sounds so awful.  Lots of hugs and healing thoughts to you.  

8

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.  

9

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 ....

10

We’re  all in the same boat here! Pain is pain and the journey to regain our health is a daily struggle and not a linear path. Im going to try to stay as mentally strong as I can while I can only slowly work on getting my physical strength back. This involves trying to block out the well-meaning, but negative influences of friends and others who have never experienced this and simply don’t understand, so question and doubt our situation, which makes us feel the need to explain, or defend ourselves, which is exhausting!

11

I am so sorry to hear about your wife’s ordeal, and what you endured since you were right there with her! How horrible to have this while travelling—but sounds like you did an amazing job of getting prompt medical attention! You are so lucky she was diagnosed early and properly treated with antivirals and pain meds! Besides ibuprofen around the clock, I slept with bags of ice around my head to numb the shooting pain. Aside from that I suffered and cried through the pain. The severity has lessened greatly, but the lower-level constant burning pain is still where the rash had been in my throat and on my tongue.

12

Also, now Im on a nerve-blocker for pain, so that would be the next step if she is still suffering....

13

Dear Amy,

The medical community currently, in general, is uneducated regarding Shingles. Many are not empathetic to the pain and suffering that we Zoster-Shingles sufferers experience.

Many females do experience Shingles around the time of their periods, so there is a hormonal component. You are very sharp to notice that correlation.

I would have your husband read some of these posts on the forum. The old saying, the human race would have died out if men had to give birth, is true. Many husbands neither comprehend or empathize with pain or suffering, but are the first to want to be waited on, hand and foot, when they have a hang nail. My apologies to men who are caring individuals, caretakers to significant others, and the stoics. There are wonderful men out there, I know!

It is difficult to say when you will feel 100% better. As I have had some "issues" in my life, ie a former stalking, violent, murderous husband, whom I left, two strokes, severe back and neck problems requiring "salvage neuro surgery," concussions, breast cancer-with excellent prognosis, and the Herpes Zoster-Shingles in my right ear, I have learned to thrive and remain optimistic. I removed all toxic individuals from my life. (I listed this only to let you know I have am not a survivor, but overcome "ordeals" and diseases and continue to love life!

You need to answer questions to no one! Your body needs rest and sleep to recover. If you need to let the house work slide, so be it. If you need to have food/grocery delivery, go for it. You still are very sick. Be assertive with your husband. This is your health, your body, and your life. I know exactly how you feel, and it isn't pretty. The Herpes Zoster-Shingles can reoccur, as it does with me, if you don't protect your health. Your body is a sanctuary.

If your mouth is still sore, I have a recipe for Magic Mouthwash,( gargle swish, and spit,) that decreases the nerves firing. (Post Herpetic Neuralgia PHN) I will be happy to send it. Unfortunately, it needs a prescription.

Best Wishes

Merry Juliana

14

Oh yes, that happens to me often, also.  Usually in public.  It’s scary and embarrassing.

15

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

16

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!

17

Wow. I started reading this and thought I had written it. Your story is exactly mine over the past month. Tell me it gets better with time!!

18

Hi All,
Amy, I am Amy too, I sympathize with you and all who have shared here. I am now 65, and got the Shingles in my throat on January 1, 2020. I suspect my husband and I had one of the first cases of Covid 19, contracted from my son in December 2019, who had been in Asia and was deathly ill when he returned. We both got what we thought was a virulent form of flu. Remember the government did not reveal information about Covid 19 until about February, and shut-downs began in March. The ulcers on the right side of my tongue, right inner cheek and right side of my throat occurred first, and one very painful sore in my right ear. I could not eat without gagging or throwing up. I slept with a heating pad on my ear for relief. It also affected my salivary gland, and I lost taste on that side.
I went to Urgent Care on January 2, 2020, and saw a truly juvenile “doctor” who entered the room with a 2020 tiara with spanglie parts and she acted like a child. She seemed bored by my case, and told me I had a virus. But ordered antibiotics, so that made no sense. I don’t think she could have diagnosed a broken toenail if she tried.
A couple of days later, when the pain in my ear and mouth became debilitating, I went to my own doctor. I had trouble swallowing my own saliva. He had no idea either what to call it. He could see the sores on my tongue and throat and said it was just ulcers, but gave me steroids and dilaudid, and a nausea drug. The dilaudid helped with the pain, but I had to get off the steroids in 3 days, as it made me crazy. I lost feeling in my tongue, and found myself biting it at night until it bled. I asked him if it was shingles, he said no, that doesn’t happen.
Then he sent me to an ENT after a few more weeks, who did the camera thing down my throat to look around. He could see the one ulcer on my throat, but my gagging stopped him from seeing the one in my esophagus. The sore in my ear had disappeared, but severe pain would remain for MONTHS. He did a hearing test which revealed I had moderate hearing loss in that ear, but not the other. One would think these things would all point to Shingles, but he could not say either. He wanted me to get a CT scan, but by that time everything was shutting down and I could not get a CT scan. Not that that would have told what was going on anyway.
So, Covid19 took over the world, I could not get any care. The ulcers retreated, my tongue healed and taste and feeling eventually came back, hearing did not, and pain comes and goes in that ear to this day. But the damage to my espohagus seems permanent. I have to imagine after the little bit of research I was able to do, that the Vagus nerve was damaged by the shingles, because I still cough 3 years later, have trouble with saliva and phlegm causing coughing fits. I have to keep lozenges and water with me at all times in case I get a coughing fit. The Vagus nerve goes from the stomach all the way to the brain.
Funny thing is, I was talking to my cousin’s husband who is now a retired internist, and related all this to him and my concern that I never actually got a diagnosis. I told him my doc said there is no such thing as shingles in the mouth, and he said he had been treating an 86 year old for it before he retired!
Only NOW is information coming out that Covid and or the vax may be causing Shingles in some people. Nice to know 3 years later. I guess I have to live with it now. I hope you all recover or have learned to live with it.

19

hi 47 years old.
day one- sore throat
day 2- liquids tasted metallic metallic, by nighttime food burned and tasted like acid all liquids, except warm liquid burned and was spicy. left side was the worst.
day 3- only was drinking, warmed hot clear liquid very diluted broth still tasted overly salty baking soda like. gargling, baking soda, salt, mouthwash, in with coconut oil concentrating on the back of my throat. Actually stung. Earache pain on left side and neck. I went to local Beacon MedPoint starting to get scared and worried. Dr. dismissed it and quickly swabbed for strep and Covid. Both came back negative went home with no medication he said hang in there. Barely looked in my throat yet I had looked in my own mouth prior and saw the raised red sores on the back of my tongue, the white yuck spots on the left side and left back of my throat and tongue . Directly drove to my retired father-in-law, who is a doctor and he suspect an oral thrush possibly shingles and got me on the antiviral anti-fungal and prednisone. wanted me to get in w my Beacon DO next day for cultures and labs.
night time extremely painful to try to sleep. Pulsating pain earache in the channel down my neck, disgusting acid like dripping from the left side in the back of my throat causing over salivation extremely extremely painful.
day 4- visit in my Do.. I could tell this was not going to be a good visit because he was already perplexed as i was describing my symptoms .. He did run strep, mono and Covid again, which came back negative. I had to beg him for cultures to test the white spots which did come back as yeast, but he said it wasn’t the right kind of yeast for thrush. I didn’t tell him initially the medicine I was on because I wanted to see his conclusions. His course of action was only amoxicillin. And then oral lidocaine. . I then disclosed I was put on the three other medication‘s because of the symptoms. He didn’t think they were necessary and felt the amoxicillin should take away my ear infection within a day.
day 5 - ear pain got worse to the touch where I could not even lay on it, moving into my head where it was hurtful to touch. Still only able to consume, hot mostly clear liquids.. bumps seem to going down a tiny bit. but on roof of my mouth now.
day 6-8 kind of a blurr of pain, getting depressed, by end if day 8 mouth soreness had gone done enough to where I am trying to transition to cold.peior to that it was like i was pouring acid in my mouth. now It was tolerable. So I was able to add frozen avocado, ice, coconut, milk, smoothie to my diet. still prefer hot water and honey.
day 9 back to DO. - he still was teetering on if it is hand foot and mouth. I again begged for blood work and I wanted antibodies done. With some resistance, he finally put the orders in. Again left with no other medication..
day 10 - called the doctors office back pretty much yelling at the nurses to do something. I needed a new referral wanted to go to an ENT was not getting any better. Doctor prescribed closazpan . ENT office called. They said it was not registered as an emergency and they could not get me in until October. Complete horse hunkle. Completely feeling dismissed and not taken seriously and clearly they did not know what they were doing. Ended up calling my own ENT. I have a sooner appointment now..
day 13- meanwhile waiting… antibodies test came back positive for shingles. Other tests or -8 vials of blood later and nutrition levels were fine but gave me no specific information. Call from doctor office was cold no compassion or asking how i was doing just said i should be feeling better by now. i literally laughed in their face and clearly they had no compassion or understanding the severity. I again explained my ongoing symptoms, weight loss, head pain, mouth soreness etc. I could not believe that they not push through an ENT appointment and take it seriously. I could have gotten an ear drop to help numb nerves..
day 20.- pain in the ear and the head. Still there’s random kind of electrical pulses. Pain in the throat and tongue are better but I still there have kind of a swollen throat feeling like I could choke on my food. The left side of my tongue still feels like it’s healing from a bad bite. . I have yet to get back to work because of fatigue and now the new coughing and head pain.. waiting on ENT this week.

20

Hi NH user. I know whis is a little late to the post but I just came across and had to write back because I am going through the same thing. Saw 4 different doctors and dentists and not one could diagnose shingles until 2 weeks later it finally appeared on my face