Oral Shingles--Four Week and Counting Nightmare

Posted , 8 users are following.

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....

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  • Posted

    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

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    • Posted

      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...

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    • Posted

      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

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  • Posted

    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.

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    • Posted

      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

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  • Posted

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

    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.  

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    • Posted

      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!
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  • Posted

    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 .... smile

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    • Posted

      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.
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    • Posted

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

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