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Is it shingles or trigeminal neuralgia

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Welsh_girl
Welsh_girl

Hi everyone!

Well my story is started at the dentist Tuesday morning after a night of what I thought was toothache! Painkillers didn't touch it dentist confirmed it wasnt teeth possiby blocked sinus so had antibiotics!

Thursday morning got into see doc!

I have come out in cold sores on my lips but I am prone to them?

Doc is treating me for both shingles and trigeminal neuralgia!200gms of Tegretol per day and aciclovir

So day 3 now of meds and ibuprofen pain is there but bareable definitely need ibuprofen!

Any advice i'm reading up on both in my heart I think it's shingles would I get a rash as well as coldoes if it was shingles? And how long does it last as it is debilitating?

1 like, 23 replies

23 Replies

  • Merry19451
    Merry19451 Welsh_girl

    Posted

    Hi Welsh Lady!

    Shingles occurs usually on one side of the body. The lesions occur in crops over several, up to five days, and do not appear the same. The pain is much worse than Herpes Simplex or cold sores. Usually, you have a preeruptive phase which is similar to the flu. The symptoms include the following : Headache, low grade fever, chills and sweating, malaise, weakness, photophobia, fatigue, etc. This is followed by the pain, then the rash. The lesions can take up to a month to crust over and no longer be infectious to those who never had chickenpox or the vaccine.

    I hope this helps.

    I am a nurse practitioner in the States.

    I have had Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years.

    Best Wishes

    Merry Juliana

    • trish82895
      trish82895 Merry19451

      Posted

      Dear Merry Juliana,

      You are always so concerned and helpful!  You're truly a Godsend!  Thank you so much for your ongoing input, knowledge, compassion and support.

      Trish

    • Merry19451
      Merry19451 trish82895

      Posted

      Dear Trish,

      I try to be...Many of the people on this site are wonderful, supportive, and informative. This site has been great for me as well. I love to help people, That is my "calling" in life.

      Thank you for your kind words. I hope this message finds you doing better.

      All my best,

      Merry Juliana

    • Bareccaboo
      Bareccaboo Merry19451

      Posted

      How do you deal with the intense (unbearable) inner ear pain?? I was just diagnosed with shingles in my left ear (on my trigeminal nerve and the pain is excruciating. 
    • Merry19451
      Merry19451 Bareccaboo

      Posted

      Hi Bareccaboo!

      I am so sorry you are going through this agony!

      I have had Herpes Zoster-Shingles Oticus, as well, recurrent, every three to five weeks for the past twenty-one years and twice in my right eye.

      I do know what you are going through.

      Has your Physician prescribed an Opioid, ie oxycodone? If not, you absolutely need to get oxycodone prescribed and take it around the clock.

      Also, Auroguard, an ear drop, contains Benzocaine, a numbing agent plus a soothing emollient. I instill 3 drops @ tepid temperature in my ear every 6 hours. I would also get Gabapentin prescribed as that also helps with the Neurogenic pain.

      (I am on Topamax, which does the same thing. They are both anticonvulsants.)

      You must rest and sleep. Any activity will worsen the pain. A gentle breeze blowing by your ear can cause severe painful spasms.

      For the first episode, I was not diagnosed for 3-1/2 weeks, although I saw four Physicians, including two ENTs who thought I was narcotic seeking.

      The fourth one, a Neurolotologist, to whom I am eternally grateful, diagnosed me when the vesicle-blisters finally appeared in the external ear canal.

      You will also feel aches and pains, chills and sweating, malaise, fatigue and exhaustion. The severe headache and lancinating ear pain hopefully will decrease with the Antivirals, but it is a process, meaning recovery takes time. I am talking in terms of a month to many months, just to prepare you. The Physicians never prepare the patients. When Shingles is in the head, it is often more severe. It is imperative to get the pain under control. Otherwise, the risk of Post Herpetic Neuralgia PHN is much higher. Also, the risk of recurrent Herpes Zoster-Shingles is higher. I am an excellent example of that.

      Please let me how I can help you.

      I am a Nurse Practitioner in the States.

      Best Wishes

      Merry Juliana

  • buttuercup00321
    buttuercup00321 Welsh_girl

    Posted

    This is extremely helpful. My situation has many similarities. The pain in my jaw happened all then sudden three weeks ago. Since, then I’ve been two dentist, cardio facial specialist with three injections, 2 Ent’s, and neurologist with a schedule MRI next week. I also have had numb, tingly, hit sensations in my feet as well as my hands. Yesterday,the heels of my feet feel like jabbing pain whether I’m sitting walking it doesn’t matter. I am currently taking Tylenol 3, 3rd round of prednisone 60mg a day for 6 days this time, valtrex (possible shingles).  I have had blood test done... nothing points to auto immune or off in that area. I have had two different types of anti inflammatories and so on. The pain today was so excruciating I couldn’t move and the worst thing I’ve ever experienced even while lying. Any suggestions while I wait on mri to relieve pain or ways not to aggravate it? Also, they feel the hands and feet issues are not related...thoughts? Today there were times it was difficult to walk. Thank you in advance for any insight and tips.
    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Dear Buttercup,

      The specialists have not been able to diagnose the cause of the pain in your jaw, nor both your hands and feet? Is it one specific spot in your jaw? Is the pain identical to the pain in your hands and feet? Do you have a fever, malaise, headache, swollen lymph nodes, fatigue, exhaustion, sweating or chills?

      Are you in good health, otherwise? What is your age?

      Best regards,

      Merry Juliana

  • buttuercup00321
    buttuercup00321 Welsh_girl

    Posted

    The neurologist  is treating for TN or TGN for the jaw. The ENTs are treating me for shingles and third round of prednisone. I did have swelling and inflammation in the tongue tonsils. The jaw pain is right where my top and bottom jaw connect along with pressure on ear drum. The only numbness I felt was the top bridge of my nose. My lips and face have swollen along with cheeks being extremely warm... this comes and goes. The hands and feet are a different: numbness, burning sensations or ice cold, coloring is like poor circulation  and tingling mainly at tips. Today was my worse day by far, I could no move the pain was so bad.  The pain was in my jaw as well  as my temples head lower jaw and eye. All of the head portion is on left side. My hands and feet are both. My eye has felt irritated but doesn’t have redness etc.  I can be hot but feet and hands are cold.  I haven’t had a temp that I am aware of.  Recently I have been under a tremendous amount of stress.

    I have alopecia due  to this and diagnosed in Jan. Overall, generally a  healthy 34 yr old mother. 

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Dear Buttercup,

      Could you have Raynaud's Syndrome in which your feet and hands change color depending on the cold temperature? White, Blue, Red, returning to normal color? with associated numbness and tingling, pain?

      I am thinking now that I got more information....I am so sorry you are going through this...

      If you could private message me regarding type of stress.

      I am a nurse practitioner in the States and have had Herpes Zoster-Shingles in my right ear every 3-5 weeks for the past twenty-one years and twice in my right eye.

      I am researching more .

      Best Wishes

      Merry Juliana

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Buttercup,

      I am wondering if you have a giant cell arteritis triggered by the Herpes Zoster-Shingles (Varicella Virus)? Another name for this is temporal arteritis. It could cause the vasomotor response in your hands and feet.

      Did they do an antibody IgM IgG of the Varicella Virus to determine if you indeed had shingles? Do you have sores in your mouth? Did you have a rash?

      Did they do markers to determine if your body shows signs of inflammation ie ESR or sedimentation (sed) rate or others?

      It is good they are covering you for both possibilities, but you need medications for the pain.

      Have they given you any analgesics for the pain? If not, please ask for a strong Opioid, as I know how excruciating Trigeminal Neuralgia or Temporal Arteritis is.

      Best Wishes

      Merry Juliana

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Did you have an MRI with gadnolium and

      MR angiography?

      Often times, the Herpes virus can be found in biopsies of the arteries of Giant Cell Arteritis.

      It often is not just in the temporal arteries, BTW. It is usually one sided. I suggest you see a rheumatologist, pronto.

      Where do you live? You might want to go to a large medical center if they haven't done all the above.

      It is not an ENT problem, BTW. I believe it is all tied together, including the hands feet scalp alopecia, face. There usually are not coincidences in medicine, especially when symptoms and signs start or cascade at the same time.

      Best Wishes

      Merry Juliana

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Buttercup,

      As your eye is hurting, you need to see an opthalmologist stat! Please do not delay. I am certain of my diagnosis. The entire spectrum of jaw pain, tongue and tonsil swelling, severe facial pain, scalp alopecia, hand and feet pain, is consistent with Giant Cell Arteritis. It could have been triggered by Herpes Zoster-Shingles, or Herpes Simplex, but you need to see an excellent Ophthalmologist and

      Rheumatologist STAT. You can lose your vision.

      You are young to have this diagnosis, but you should have had an MRI/angiogram urgently.

      I am so sorry about this, but please call. I am worried about you.

      Let me know how things turn out. The fact that you are worse on Prednisone tells me you need to see a Rheumatologist STAT and Ophthalmologist STAT.

      I shall be thinking of you!

      Warm Hugs

      Merry Juliana

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

       I am not sure what I have...the ENT's had tons of blood work done and all are puzzled.  They think the Jaw and hands/feet could be different but unsure.  Would Raynaud's Syndrome show during MRI?  Yes, when my hand and feet are cold the coloring in pruple or white...like loss of circulations.  The burning/hot sesnation only happens with feet and they are back to normal coloring.  I will try to private message you.  It was all of the sudden three weeks ago...I thought I had a severe ear infection at first and now this is where I am.  

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

      The ENT's mentioned possible Temporal arteritis due to the location.  No,I do not think so on the testing for shingles.  I have red bumps/rash on scalp but they said it was hard to tell.  iAll of this is on my left side.  I have also been using rogaine and pro biotic shamppo due to alopecia...specifically Telogen effluvium that I was diagnosed with 2 months ago. No markers for inflammation.  I have been given Tylenol 3 for pain.  When I was out of it on Monday...my face face/cheek was swollen and I was in excruciating pain.  however the most pain was last night.  My temple was even having muscle spasms...if that is possible. My neurologist said to take two of the tergretol instead of one sad  So i have been rotating ibprofen and tylenol 3 for pain along with tiger balm patches and heating pads.  The pain last night is describable.  Birthing children is nothing in comparison.  it was almost paralyzing if that makes sense at all.

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

      My eye just has burning sensations on that side but doesn't look irritated.  My teeth doesn't hurt. Not sure if this helps but it like I feel better in the morning and worse as the day goes on.  There is constant pain at the jaw line just depends when it worsens.

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Buttercup,

      The markers for inflammation can be normal and you can still have Giant Cell Arteritis. It is not just the temporal artery by your hairline that is inflamed. It is many arteries in your body, hence the name change.

      Does the pain increase at the jawline when you talk or eat?

      What dose and name of corticosteroid are you on currently? The eye doesn't have to look red as it is the artery to the eye that is inflamed. The reason I think it is Giant Cell Arteritis as it can start with jaw pain, tongue and throat pain and swelling, face swelling, and severe excruciating agonizing headache worse than childbirth. Alopecia occurs in this and the scalp is very tender to touch.

      Recent studies have shown via biopsies that Herpes Zoster-Shingles virus and Simplex virus have been found in a large percentage of the biopsies.

      A huge problem with this disease is NOT diagnosing accurately and treating this with high dose Prednisone 100 mg daily to avoid blindness.

      This is why I urge you to see an Ophthalmologist TODAY. The Ophthalmologist can see if there are changes in your eye as the retinal artery might show signs of occlusion or blockage.

      The color changes in your hands and feet would be part of the arteritis, BTW. (Skip the Raynaud's Syndrome, which is vascular, also.)

      Merry Juliana

    • Merry19451
      Merry19451

      Posted

      Telogen effluvium is a reversible alopecia that is often caused by a severe illness. Is the alopecia is over the left front scalp, temple area?

      Was the rash red vesicle-blisters on a red base that turned into scabs?

      If a dermatologist diagnosed it as telogen effluvium, it will grow back normally.

      Could the rash be an allergic reaction to the products you are using ie Rogaine, probiotics? Is it itchy?

      Merry Juliana

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

      Hi,

      The dermontologist said my hair basically went into to shock which put all of my hair into the end stage life cycle.  Therefore, when new growth happens is when my hair will release.  it is worse on my left side but it is all over.  Significantly at part my part on the left side and around my face hairline.  The rash is just red base no blisters.  I am thinking the rash could be from the rogaine.  I ordered all natural probiotic enhancers along with more all natural probiotic shampoo and conditioner.  Thank you so much for everything thus far!!  It is hard to explain to friends and family as well as the intensity.  My primary did order me Cyclobenzapine 10mg 2 times a day as well.

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Hi Buttercup,

      I still know you should see an Ophthalmologist regarding your eye. I understand the alopecia, entirely, but do you understand that Trigeminal Neuralgia would not cause your hair to fall out, nor would a case of shingles, but Giant Cell Arteritis would? Giant Cell Arteritis can cause strokes, blindness, and aneurysms, if not treated properly. I beg you to see a Rheumatologist and Ophthalmologist.

      Best Wishes

      Merry Juliana

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

      The alopecia happened several months ago and was diagnosed at the beginning of Jan.  The other systems didn't happen until 3 weeks ago.  Unfortunately, I am going through a divorce after being married for 10 yrs.  

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Oh!Buttercup,

      I am so sorry. I do know the tumult, pain, and stress that ending a marriage brings. I hope you are surrounded by warm, loving, supportive friends and family.

      Extra hugs

      Merry Juliana

    • buttuercup00321
      buttuercup00321 Merry19451

      Posted

      Thank you! Yes I have a great support system. Update:  My hand and feet seem to be back to normal. I had another pain attack on sat but only lasted an hour two. However, my scalp has broken out with bumps all over. They are like pimples most are not painful... any idea? The jaw pain is still constant  but meds seem to keep the tolerable until mri. My primary doc prescribed me cyclonenzaprine 3 times a day and Nero doubled the trileptal to twice a day.  This by no means a solution due to the constant  pain but will know

      More from mri on thurs hopefully. Any idea on the bumps all over my scalp with an increase in bumps around hairline? Thanks in advance 

    • Merry19451
      Merry19451 buttuercup00321

      Posted

      Are you using any topical products ie Rogaine, for the alopecia? They are the first suspects? Shampoos? I am allergic to many brands of shampoos and conditioners, myself. Your best bet would be to see your dermatologist immediately, of course.

      Merry Juliana

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