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

Posted , 5 users are following.

Hi, I am a healthy 51 years old female who has been struggling with mouth numbness, right ear pain, sore tongue, burning sensation on my tongue and sores on the roof of my mouth. I have been to Drs, nauturalpaths, accupuncuture and urgent care. Everyone first thought I had a virus and then they changed it to burning mouth syndrome. It has been so awful. I have taken every natural supplement out there and 2 weeks ago my naturalpath told me that I tested positive for shingles. I went to the urgent care because of the pain I have been in and the dr. there insisted that she didn't believe I had shingles in my mouth because she had never heard of it in the mouth before. She wants my to go on gabapentin and right now I am taking valtrex. I am confused by what the drs. are saying. All I know is that I am 15 days into valtrex and I don't feel any better. I am tearful and so drained. My tongue pain is awful and now my taste buds are not working at all. Does anyone have any advice for me? I'm scared because I am afraid I waited to long to get diagnosed with the shingles and doubting that is even working at all and and with different drs. recommending different things I am confused. I am so terrified this is the new me and I am miserable! Thank you for your comments.

0 likes, 8 replies

Report

8 Replies

  • Posted

    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.

    Report Reply
    • Posted

      Oh, also forgot to mention that I have a persistent tickle in my throat. Spicy foods tend to make it worse and I'll have a coughing attack that ends in several sneezes. It's lovely when it happens in the middle of a crowded restaurant or on an airplane... And then sometimes I'll just choke on my own saliva because all of a sudden my body produces an excess of it. It's a new normal, that's for sure.

      Report Reply
  • Posted

    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

    Report Reply
  • Posted

    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.

    Report Reply
  • Posted

    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

    Report Reply
    • Posted

      Thank you! I have cut out so much in my diet and no one had told me about the Lysine Low Arginine Diet until I read it on another post you had posted awhile back. I looked it up and sure enough I have been eating tons of nuts, dark chocolate and coconut. I did realize on my own that Pop, citric acid, coffee and a few other things made it way worse. My Naturopath suggested I eat Paleo diet and so for 3 months I have been gorging on nuts because I am hungry!! She never mentioned this diet and I feel it has helped me even the last week that I have stopped the nuts, chocolate and coconut. Thanks for the encouraging words!

      Report Reply
  • Posted

    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

    Report Reply
    • Posted

      Thank you Sue for your encouraging words. We all have different stories but are here to support each other. I have been given some great advice and even was able to find out I had shingles by other people encouraging me to get tested for it. The one thing that I have added right now is oil of oregano. I put 4 drops in 16 ounces of water 3 times a day. It's quite strong, but they say it helps shingles. I take valaciclovir, magnesium, Alpha Lipoic Acid, tumeric, Vitamin D3 & K2 and Lysine. I struggle with stress and anxiety a bit so besides prayer I have added yoga to my weekly routine and I have enjoyed that. I have not heard of Famvir but I will definitely ask my dr about it. Best of luck with you and your health. Have a great day!

      Cindy

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up