Shingles in the mouth

My situation is almost identical to yours.  My shingles is also in my mouth . . . "triggered" by a root canal earlier in the week.  It scares me to think I could get this again, and possibly again.  The only relief I've had thus far is chloraseptic "mints" with 20% benzocaine and topical analygysics (like orajel).  The pain is simply unbelievable.  The doctor prescrived anti-virals (and I pray I got them soon enough to make a difference), and hydrocodine.  I cannot see where the hydrocodine is workig more than 20 minutes at any given time.  Let's all pray for each other.  I am with you -- I have never experienced anything like this -- other than childbirth and that does eventually end (ha).  Let's al pray for each other.

God Bless.

Lisa 

Could be shingles in the nerve on that side of your face. Shingles usually attacks one side not both. You should see a doctor as anti viral meds are needed soon as poss, within 72 hours of start of outbreak. Urgent care or A n E, (UK only) ER in US can supply a prescription for them. Good luck,

Hi Catwoman!

It certainly could be Herpes Zoster Shingles, especially with your history of excruciating burning pain like a live wire, coming off of steroids for rheumatoid condition (Rheumatoid arthritis? )

The symptoms of feeling rundown (fatigue and exhaustion) certainly are part of shingles, as well. You can also have a low grade fever, chills and sweating, headache, malaise, and aches and pains.

Shingles without the rash is called "Zoster Sine Herpete."

I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right eye twice and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twentyone years.

Unfortunately, it would be too late for antiviral medications, but I would urge you to ask your physician for strong analgesic.

I am sorry you are going through this disease, once again.

Best Wishes

Merry Juliana

Hello Merry 19451

I have recently recovered from either oral shingles or Herpes simplex, very painful experience.

My doctors here in the U.K. have been less than sympathetic and couldn't diagnose what it was.

I wondered if you know if there is a blood test to diagnose either, my doctor says that there isn't and was very dismissive.

I hope tht you don't mind me asking you this.

Kind Regards.

First, I am so sorry you are going through this process with Herpes Zoster Shingles or Herpes simplex. As you have recently gone through this process, hopefully within the last month, they might be able to do Titres of IgM and IgG Immunoglobulins of Herpes Zoster Shingles and Herpes Simplex. The IgM informs of an acute infection and IgG, of a chronic or past infection. If you have no antibodies to Herpes simplex, at all, but Positive for IgG and IgM, then it is definitely Herpes Zoster Shingles, as it was for me.

This test would not differentiate between your having chickenpox and shingles, just the presence of antibodies to the varicella virus.

If you had positive antibodies to IgG and IgM Simplex, but none to Zoster, then it would mean you never had chickenpox or shingles.

It becomes more complicated if you have positive IgG antibodies, but no IgM antibodies. It means you were infected with the disease in the past, but not have had the disease very recently OR...

The antibodies have not yet started production.

Timing is everything with this test.

Perhaps, you could describe the details of the Herpes episode in great detail.

Did you have symptoms preceding the oral rash such as headache, fever, chills and sweating, aches and pains, malaise and fatigue, exhaustion, enlarged lymph nodes adjacent to the rash. Was the rash on one side of your mouth? What did the pain feel like, sharp, burning, lancinating? How long did the blisters last?

Did they give you any antiviral medications and analgesic to help with the pain?

Frankly, physicians can be abysmally ignorant regarding Herpes Zoster Shingles, the diagnosis, treatment, management of the symptoms, and avoidance of sequels such as Post Herpetic Neuralgia PHN.

Whether it was Simplex or Zoster, the treatment is the same, an antiviral, preferably Famciclovir, and a strong analgesic, and if the lesions are affecting your swallowing ability, sometimes to soothe your throat.

There are lab tests they can do if it ever comes retuns called a PCR,in which they scrape the fluid from fresh vesicles-blisters and send it for identification.

Please let me know if the blisters only occurred in one side of the mouth or all over the mouth. Also, let me know if you had any of those other symptoms.

I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye.

Best Wishes

Merry Juliana

Dear Merry Juliana,

Thank you so very much for the information.

I'll try and explain what happened.

Monday  13th Jun, started with  burning and numbness on balls of both my feet......put it down to shoes. 

Tues & weds, dealt with a stressful family situation,,,,,put that down to my tiredness, and not feeling well.

Thurs,burning lips inside started & tip of tongue along with a lump on the  R.H, inside my top lip, but also smaller bumps across inside top & bottom.

Fri, woke up with swollen eyes,burning nerve pains in both legs, sharp electric pain R.H.side of temple and jaw.

 [ N.B. I had my very first attack of genital Herpes simplex, 2 years before 

Was never told whether it was simplex 1 or 2.]

I recognised that the pains in my legs were the same but nothing on my vagina. I got a 5 day viral medication prescription that day fearing a repeat attack.

Sat. & Sunday Felt so poorly with all the symptoms.

Monday,. app' with doctor who thought unspecified viral infection, { no vaginal probs]  mouth, poss' allergic reaction!

Tues, still unwell symptons continued, doctor very reluctantly gave me another 5 day prescription, she ruled out shingles as no rash appeared.

Weds,/thurs 1 large extremley itchy lump on right knee.earlier symptoms continue.

Sat 24th June, started to feeling better.

Monday July !0th, 3 extremlet itchy lumps on my right foot in, in a diagnal line.

The end!!! 

Thank you so much , would really welcome any comments you might have Merry Juliana.

Hi KelcM

I am so terribly sorry you are dealing with this disease, the partial paralysis of your tongue with difficulty eating and swallowing.

If you feel you are having a relapse, have the ENT obtain fluid from the vesicles-blisters and send it to the laboratory for DFA or PCS testing. Also, you must start on an antiviral STAT with each relapse!!!!!!!!

Famciclovir is the easiest to swallow-smallest tablet and 3x daily. It is more efficacious than Acyclovir which is 5x daily.

I would seek the help of a speech pathologist/therapist pronto to help with your speech and swallowing issues and tongue atrophy.

I would not allow another biopsy at this point.

Do not allow the head and neck surgeon near your tongue !!!!!! Nerve tissue can regenerate.

How do I know these things and what you are going through.

I have been an RN BSN since 1973, 44 years.

I am a Family Nurse Practitioner for 18 years.

I was a single mother raising my son when I first had my first episode of Herpes Zoster Shingles in my right ear, tongue, and throat.

I also had two strokes with weakness of my tongue ( and each side)

I get Herpes Zoster Shingles in my right ear, mouth, throat, every three to five weeks for the past twentyone years and twice in my right eye. I understand more than you know your fear that this won't improve.

Please seek the help of a speech pathologist pronto.

My speech and swallowing are almost perfect, except during an episode. But they healed from the stroke. So did my cognition and motor deficits.

Please know that you have my warmest thoughts and hugs.

Merry Juliana

Hi Showtime!

First, I am sorry you are going through this process with Herpes Zoster Shingles!

Do you take an antiviral when you notice the blisters on your gumline/roof of mouth? Which antiviral?

First, in order to have Herpes Zoster Shingles, you must have had a case of chickenpox. The chickenpox could have been so mild that you could have had just one or two vesicles that your parents and you didn't realize were chickenpox and didn't call the doctor and therefore were never diagnosed.

The other possibility is that you have Herpes Simplex, which occurs on the mucus membranes.

If the lesions occur on both sides of the mouth, it is more likely Herpes Simplex. If the lesions occur on one side of the mouth, it is more likely to be Herpes Zoster, especially as you have fatigue and exhaustion, depression with the blisters. (Herpes Zoster can cross the midline, btw.)

No matter what, you should be starting an antiviral when you notice the symptoms. Do you have burning pain in your mouth or gum area before the blisters start?

Do the blisters start around your period?

The way the varicella virus works is that you contract chickenpox, usually as a child. The chickenpox virus (Herpes Zoster Shingles Varicella Virus) then lies dormant on the sensory nerve, just waiting until your immune system is weak. Then the virus replicates, causing severe pain and rash on one dermatome, one sided, usually not crossing the midline. Why it chooses that dermatome is unknown.

Physicians often misdiagnose shingles, are abysmally ignorant of the pain, the treatment of the shingles, the management of the PHN.

Perhaps you could tell me if the rash occurs in both sides of the mouth or one side, if your lymph nodes get enlarged, do you get headaches, aches and pains, malaise, trouble swallowing with the recurrent episodes?

I am sorry I didn't respond straight away, but I have been recovering from a rather severe illness, myself.

I am a Nurse Practitioner in the States and have had Herpes Zoster Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye.

Looking forward to hearing from you!

Best Wishes

Merry Juliana

Showtime,

There is a rather weak Shingles vaccine Zostavax that has about a 57% efficacy rate, depending on your age and whether you already had Shingles. It doesn't help as well for those of us who have recurrent episodes of Herpes Zoster Shingles.

There is a better Shingles vaccine, Shingrex by GlaxoSmithKline submitted for approval to the FDA and UK and European Counterpart authorities last autumn. It is 93-97% efficacious. I do not know if will help us.

BTW, Zostavax did not help me, and is not given to those in the UK until 70 years.

Merry Juliana

Showtime,

Just getting over another illness, LOL. Sorry for the delay... It sounds like shingles, for certain, then. You might try putting ambesol or any baby's teething gel on the ulcers to numb the pain. You could ask your doctor to prescribe prednisone to decrease the inflammation in your mouth.

What I recommend most is following a high Lysine low Arginine diet!

Best Wishes

Merry Juliana

You're our Angel Merry! So sorry to hear you've been ill, pray that you get better soon! We all appreciate you so much - Hugs from everyone 💐 

Hi kelcM, I can sympathise with you and your shingles. I got shingles 14 months ago, in the back of my throat, the left hand side of the roof of my mouth, left half of my tongue, my ear, and, I suspect, my sinuses. I didn't realise at the time that I had also had an outbreak on my upper leg (about 10 days previously) and though the strange rash was from a caterpillar in the garden. i had great difficulty eating and drinking, because of the pain and also nausea. I lost 11 kg in weight in 2 weeks and ended up in hospital dehydrated, even though I tried to eat and drink. I still have altered taste sensations, a dry mouth (so I chew sugar-free chewing most of the time) and a persistent cough. If I cough it's followed immediately by sneezing, so I'm assuming my sinuses are affected. To relieve symptoms, I use a sinus rinse twice daily, take a non-drowsy anti-histamine daily and use a nasal spray. These ease the symptoms, but they haven't improved, even after 14 months. I have been to a dietician, to get some weigh back on, and an ENT specialist to confirm no structural damage to my throat etc. My next step is to visit a speech pathologist to see if i can get any help there. The persistent coughing, losing my voice at times when I talk and sneezing are quite tiring. I try to stay well-hydrated. One positive - I'm sure my sense of smell has been heightened. I also had an injection to (hopefully) alleviate nay further attacks. Good luck with your symptoms and progress.

Hi Andrea, It's encouraging, in a way, to find someone else who has similar symptoms to you. However, unfortunately I have to say that 18 months later I still have them. Easting seems to trigger a huge coughing attack, and, yes, I also then usually follow that with sneezing. i find I have to remember to drink something before I eat as that can often help. And water is not always sufficient, sometimes it needs to have a bit more 'substance', so maybe some lemon added to the water, or some other drink. In fact, last night I was out with the family at diner and had to go out of the restaurant because of a huge coughing attack, one of the worst I've had, right at the end of the meal. Afterwards I had trouble speaking, which is sometimes another problem. I've been to a speech pathologist, an ear, nose and throat specialist and a dental / mouth specialist. they all tell me there's no damage, i don't have a throat or mouth cancer, I can swallow normally, but the problem continues. I'm now considering trying acupuncture, as I'm willing to try anything if it will help, It is all very tiring. I'll report on how things go. I also can only eat smaller meals, as i lost 11kg in 2 weeks.