Shingles in the mouth

Infections
21

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

22

Hi! I have been battling Shingles on my tongue and dealing with the residual damage/pain for 7 months now. I only got it on my tongue, not on my face, lips, or anywhere else and so it took 3 months for the EnT to even consider this as an option. In the meantime I was on steroids for 5 weeks (didn't help and probably made it worse) and told to take Tylenol. They acted like I was just being a baby when I tried to explain how much it hurt and the only reason we even got the Shingles diagnosis was because I started crying in the office when I was once again being sent on my way with no solution and no help (so the doc finally decided to take a picture and ask some other people). They put me on antiviral but I was 3 months in so they did nothing and then the doc was surprised that I hadn't improved after having them. I've had 2 biopsies to verify that it isn't cancer and now (7 months in) the new specialist (head and neck surgeon) wants to do ANOTHER biopsy because he wants to prove again that it's not cancer. My primary care doctor has been the most helpful and treated me with IV vitamin C daily for 2 weeks which showed the most improvement. We've cut back on the IV's but I still go once every 2 weeks. Last week I felt like I was having a relapse so I did another 5 days of IV's. I'm going to have this new biopsy done but my concern is that it will strain my immune system further trying to heal it. I have such bad nerve damage from the Shingles that the left side of my tongue has extreme neuromuscular atrophy and I can't move it. The surgeon has started talking about removing it rather than continuing treatment to try to help it heal but my primary doc thinks if I keep supplementing with the right vitamins and give my body time the nerve can heal and I may be close to normal in 1-2 years. This has been extremely difficult for me because I have had such a hard time eating and now I can't talk very well. I have 1yo and 2yo daughters and it's been so hard on them and my husband too. I wanted to say thank you to all the people posting on here for convincing me again that I AM dealing with Shingles because I've had all the things you all are talking about. I'm hoping I can get through this and never have to experience this again. I already know I will always have weakness in my tongue at the very least. Anyway, thank you and I wish all of you healthy times ahead!

23

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

24

Hi - just found this discussion. Wow. Have been suffering intermittent outbreaks of this on the roof of my mouth/ gumlines on occasion for around 20 years. It followed an outbreak of chicken pox at my sons school. I didnt have chicken pox as a child so somehow I got this as a response. Can anyone tell me how chicken pox immunity works with this disease? Is there a vaccination for this? It always blindsides me- I will feel tired and depressed for weeks before, and will not know what it is till the blister breaks out on the roof of my mouth. When I got the first outbreak I was told Id never get it again- and no one knows anything about this issue...hallelujah at finding this thread..hope someone reads my post. Many thanks! 

25

Hi Merry! - just found this discussion. Wow. Have been suffering intermittent outbreaks of this on the roof of my mouth/ gumlines on occasion for around 20 years. It followed an outbreak of chicken pox at my sons school. I didnt have chicken pox as a child so somehow I got this as a response. Can anyone tell me how chicken pox immunity works with this disease? Is there a vaccination for this? It always blindsides me- I will feel tired and depressed for weeks before, and will not know what it is till the blister breaks out on the roof of my mouth. When I got the first outbreak I was told Id never get it again- and no one knows anything about this issue...hallelujah at finding this thread..hope someone reads my post. Many thanks! 

26

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

27

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

28

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.

 

29

Hi Mary,

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

30

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.

 

31

I was diagnosed with shingles and it was in my left side of stomach and but cheek. They started me on zovirax and steroids and wrote me pain medicine. The rash went away and then my mouth started hurting. I had a painful knot in roof of mouth and entire tongue swelled and had bumps and then my lips started burning and corners got sores. This is so incredibly painful. I don't know what to do.

32

Hi June I started with what I thought was an ulcer on the roof of my mouth 2 weeks ago. I went to the dentist about 4 days after as it wasn't healing. he prescribed a big dose of metrodiazole. but after two days the pain was going worse could hardly eat with it and also had pain going down the right side of my face and cheek  bone.so that evening I went back to the dentist again as an emergency and he said straight away it was shingles of the mouth. he said it had changed since he had seen it n the tues. and was like someone had got a pen and played dot to dot on the mouth also my bottom lip was very swollen and also blistered as was my tongue and to get to a drs asap and get some anti virals as he could not prescribe them. my drs was shut but managed to get an apt with the out of hours.after some humming and arring the dr finally got an 2nd opinion as she had never seen it in the mouth before two drs both came in and said it was indeed shingles and started me on the anti virals. I finished the course yesterday but  although I feel a lot better I know part of the ulcer is still there and still getting some pain down the right side of my face. so I don't know wheather I need to make another appt to the dr to get some more antivirals or how long it will last f0r what I don't want is it to come back with a vengeance again as the pain was awful.and still feel quite drained from it  can anyone help me thank you. 

33

Hi Yvonne, I would definitley go back to the doc. I'm not sure if they will have you do the antivirals again...see what they say. They do say you have to have them within I think 72 hours of the attack to be effective. I have found relief  from pain, duration and severity by taking high strength echinacea capsules, calcium ascorbate and zinc frequently while under attack. I get attacks of varying severity in varying intervals since I first got it after a chickenpox wave at my sons school. I was told then it is a response to the chicken pox virus...also that it would never re occur- that proved to be totally wrong. Stress, tiredness and sometimes food additives make it break out..some canned foods - which I hardly ever eat and mostly avoid will make it happen...its a weird syndrome, and like you i had an 'ulcer' on the roof of my mouth that wouldnt heal...that first outbreak was the worst, as i recall. I can still recall the pain, and it was like a crater suddenly in the roof of my mouth. It really is a nasty mofo of a thing! I hope someone here can help. But do see the Dr again...try my remedies- they help the immune system. Best of luck, tell me how you go!  

34

Shasta read my reply below...I hope you are feelin better. <3

 

35

Thanks Merry! Only just found your post. Will look into ths! 

36

H Merry, only just found your post...One side, yes, malaise etc...I will just feel shaky, weak, disoriented, eye sensitvity, fatigue, many random malaises, and after a few weeks the spot appears, on gumline, or roof of mouth, one side only. I have found high strength echinacea, calcium ascorbate, zinc wil help...echinacea seems to lessen pain also...thank you for your kindness, Im srry to hear you have been unwell...may you receive health and healing Merry xo

37

Ok hun thank you very much that sounds like really good advice. I just don't want it to come back with a vengeance.il do all that .many thanks again Yvonne.x

38

I hope it doesnt! I think, as I recall, the 'first was the worst' ...but they are all really debilitating. Wishing you good health and happiness  

39

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

40

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 💐