Oral shingles not getting better.....discouraged!

I had oral shingles November 2017. It took 3 visits to the doctor over a 3 week period to diagnose it. By then it was too late for antivirals. I was THE SICKEST I'VE EVER BEEN IN MY LIFE and it went on for months. I am an almost 8 year breast cancer survivor who had a lumpectomy, mastectomy, reconstruction, and 6 rounds of chemo, and shingles was 1000x worse than all of that put together. I couldn't eat anything but jello for 2 weeks due to nausea and lost 22 lbs. Here I am almost a year and a half later and my taste buds are still toast. I have THE WORST taste in my mouth all the time. I still sleep a good 10 hours a night and have to force myself to get out of bed every morning. I had the Shingrix vaccine last spring and I really feel like it's helped keep another flare up from happening because it seems like the virus is trying (sore or itchy ear, sore tongue). So... I hate to tell you, but it probably is the new you... it will get somewhat better, but probably won't completely leave. I found the best thing to do in the beginning was just rest and get lots of sleep. I'm gonna say it was a good 4 months before I began to feel normal again. Best of luck to you.

Hi

I have been getting Herpes Zoster Shingles in my right ear, mouth, tongue, throat, and now entire scalp for the past 23 years.

Needless to say, I have been through the ringer. You need Magic Mouthwash below.

One part viscous lidocaine 2%

One part prednisolone your physician's dose

One part Maalox (do not substitute Kaopectate)

One part diphenhydramine (12.5 mg per 5 ml). use the clear liquid, undyed Benadryl

*****The prednisolone and viscous lidocaine are essential. These will soothe and numb the lesions.

You cannot swallow the lidocaine, as it interferes with your gag and cough reflex, but you can hold and swish the solution in your mouth, then spit. Use 4-6 x daily.

Your physician should prescribe prednisolone for at least 2-3 weeks to decrease the pain and inflammation in your mouth.

Never drink hot or spicy foods. You may find cool or icy drinks easier to tolerate.

Ask for a referral to ENT. They may have other ideas to help you.

Do not go back to work. Just rest and sleep.

I found Valcyclovir impossible to swallow, but I had Jugular Foramen Syndrome with the Shingles. Famciclovir is a smaller pill, and thus easier to swallow.

I am a Nurse Practitioner in the States.

I hope this helps.

Best regards,

Merry Juliana

Hi Cindy

all your symptoms sound like i was a out 5 years ago. For years I suffered with horrendous pains in my mouth right through to my ear. The dentist thought it was my wisdom teeth causing the ear ache so she removed all of them but nothing got better.

After years of seeing doctors and acupuncture, my mum mentioned that a meal she had containing peanuts made her tongue flare up and burn. I suddenly realised that around the time this all started I had introduced almonds and almond milk to my diet on a daily basis. I immediately cut all nuts out and found my five year nightmare came to an end. I could finally talk without being reduced to tears. I could enjoy eating again.

Please look at your diet. I am annoyed nobody I saw mentioned this.

Also take high doses of Vitamin B complex.

Cindy,

Also Google Hi Lysine Low Arginine Diet and Herpes Diet. This means no nuts no legumes no chocolate, but the Herpes zoster episodes are reduced. The intensity of pain is decreased.

Merry Juliana

Dear Cindy,

I'm so sorry you have acquired this curse, my sympathies.

I started having pain in the trigeminal nerve in the right side of my face in my early 20's after years of cold sores on the same side on my upper and lower lips. I'm 63 now. When I was 34 weeks pregnant at age 36 I had my first bout of shingles, the worst case my doctor had ever seen she said. Since that time I have had shingles about 16 times, usually on my trunk and only with a few blisters but with all the burning pain/itch/flu-like symptoms. Since I have reduced the stress in my life 5 years ago the episodes of shingles have dwindled.

I had only one episode in my face, caught early and strangely without blisters, but very painful and involved my ear, eye, scalp, lips and skin which were on fire. I couldn't wash my hair, brush my teeth or touch my face. My ear was howling and I now have tinnitus in it and mild hearing loss.

When I get my teeth cleaned the hygienist cannot probe my gums or I will get an outbreak. To add to the pot, I am currently suffering from nerve damage in my gum after a broken tooth from a restaurant meal last fall and the subsequent dental treatment. I am taking Lyrica for the pain, but that is another story.... but related to what I believe to be the herpes zoster virus situated in my trigeminal nerve.

When I have an outbreak I take Famvir, a prescribed ChlorHexadine mouth rinse and salt rinses. On a daily basis I take B complex, magnesium, Vit D & C and do not eat chocolate or almonds/cashews or beans. I have reduced sugar to nearly nil and increased my water intake, no juice or pop and have reduced my coffee/tea intake. I know stress plays a big part for me. My situation is not nearly as severe as yours by comparison, but all to say I understand your feelings and pain and am so sorry.

I think the mouth rinse Merry Juliana suggested sounds like it would help, worth a try anyway. I hope your mouth gets some relief.

All the best,

Sue