Frustrated that GP's Still no nothing about shingles!

Posted , 4 users are following.

I'm a woman in my 3rd decade (doesn't let me say my age!) who has experienced nerve pain, numbness, tingling, spots, rashes and a whole host of other symptoms like twitching, severe fatigue and balance issues (too many to type!), for around a year and a half. My right side is affected, my ear is constantly sore and muffled, my skin, glands and lymph nodes hurt most of the time and my jaw feels dislocated and feels like it needs clicking (slight swelling). The pain worsens just before the spots appear (I get them around my scalp, nape, face, in mouth and upper back), and my blood work showed that my white cells returned to normal after a dose of acyclovir......but according to my GP and others I have seen, it can't be shingles! Their theory rests upon the fact that it is recurrent and on two occasions, it had crossed the boundary and appeared on my scalp above my left ear and along the front of my hair line. Also, my family (mother, 2 of my brothers and 2 of my sisters) have also been suffering with it! My mother had it first in the same places as me, my sister (a hairdresser) had it a few weeks later on her wrist (she had done mums hair and then mine the next morning), then I got it and then the others also caught it. My sister also cuts a guys hair who had been suffering from shingles of the scalp for over a year, before any of us caught it. They say you can not catch it but I had it twice around 6 years ago on my trunk, and I had been working with people who had shingles on both occasions. I wonder if perhaps my family are susceptible to the virus and perhaps struggle to shake it off. My pain and skin irritation is constant, but I get flare ups of the rash/spots regularly. I recently spoke to a GP about a recent flare up in my mouth which appeared on the inside of my cheek and soft palate at the back of my throat, he issued acyclovir and it had halved the pain! In fact, whenever I have had it this happens, but it comes back within a week or 2. I wish the doctors in the UK could see past their set view of the virus and how it behaves, because so many people seem to be experiencing shingles these days. I often wonder if the virus had mutated or if there are different strains, because medical professionals don't seem to know enough about it and the studies are exceptionally poor. This virus has taken over my life and has turned me into a bogged down recluse, I work because I have to but I am too exhausted to do much else and my colleagues do not understand it or take it seriously at all. I take something for the nerve pain but not a strong dose as I have to be as alert as possible at work, and I take codeine when I get home. I just hope that one day it will disappear, that I will be free of the pain and that my children can have their mum back.... I hope that happens to all of us that are affected by this horrible virus. I also hope that we can be heard by the many medical professionals who are letting us down through sheer ignorance and a complete lack of research! Thank you for listening to my ramblings!

1 like, 13 replies

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  • Posted

    You are right, generally shingles stays on one side of the body(except when affecting the mouth ). But there are cases when it does cross for some reason. I would say you know your body, trust your gut. Only thing I wonder is if you have something else going on? Autoimmune disorder, weakened immune, exposed to mold? for you to be constantly getting shingles. Hope you can find a better doctor, one who listens, or at least understands they are one person and can not have all the answers to everything and are open to the possibility of what you are saying. Trust me it is difficult finding a doctor like that in the U.S. at times also. Best of Luck!

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    • Posted

      Thank you for your kind comment. Yea, I think you may be right about the immune system thing, so I will talk to my doctor about that. I recently changed GP, and my new one is much more empathic so I think he might at least hear me out......hopefully! Thank you again!

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  • Posted

    Dear Victoria,

    I have been struggling for 23 years with this. I get Herpes Zoster Shingles every 3-5 weeks for the past 23 years in my right ear, mouth , throat, and entire scalp.

    Many physicians are abysmally ignorant regarding shingles. I believe you are in the UK as you are prescribed acyclovir.

    I will post to you later today a much longer letter regarding what I feel you need to do regarding treatment. I am a nurse practitioner in the States. Best Regards,

    Merry Juliana

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  • Posted

    I am so sorry to hear this Merry, and thank you for your reply. Any advice you can offer would be greatly appreciated, so thank you!

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  • Posted

    I am so sorry you are suffering from this disease. Herpes Zoster-Shingles is more than a rash and some pain. For many, it can be a life-altering disease with implications for the future.

    This post is meant as a guide regarding the course, treatment, and management of the disease. It is not a substitute for the accurate diagnosis and treatment by a clinician.

    I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles every three weeks in my right ear, mouth, and throat for 23 years, and more recently extending to my entire right scalp. I have included the knowledge I have learned from the wonderful friends on this forum.

    You cannot catch Shingles from Shingles. You can infect an individual who has never had chicken pox from an exposed shingles rash with chicken pox. The “varicella virus naïve” people would include the babies in utero of pregnant women, unvaccinated children, immunocompromised individuals, and anyone who has never had chicken pox. Remember, often times, a pregnant woman often does not initially know she is pregnant.

    Shingles is the reactivation of the varicella virus when your immunity had waned.

    PRE-ERUPTIVE PHASE

    The Pre-Eruptive Phase includes the following:

    Sensory phenomena along 1 or more skin dermatomes, lasting 1-14 days. Mine lasted 21 days before the rash appeared!

    Phenomena usually are noted as pain or, less commonly, itching, or tingling.

    The pain may be preceded and /or accompanied by the following symptoms: headache, photophobia, aches and pains, chills and sweating, mild fever, exhaustion, fatigue, and malaise.

    ACUTE ERUPTIVE PHASE

    The Acute Eruptive Phase is marked by:

    Patchy redness, occasionally accompanied by hardness, in the dermatomal area of involvement.

    Swollen lymph nodes adjacent to the rash

    Grouped herpetiform vesicles-blisters developing on the red base (the classic finding)

    The skin findings typically appear on one side of the spinal cord, stopping abruptly at the midline.

    Vesicular shrinkage: Vesicles initially are clear but eventually cloud, rupture, crust, and shrink.

    After vesicular shrinkage, slow resolution of the remaining red plaques.

    Almost all adults experience pain, typically severe. The pain is described as burning, lancinating, excruciating, agonizing, electric. The slightest breeze can set off agonizing spasms of pain.

    A few experience severe pain without a rash. This is called “Zoster Sine Herpete!” Many physicians fail to diagnose this as Shingles!

    Symptoms tend to resolve over 10-15 days, but can take much longer! Complete healing of lesions may require up to a month.

    Please note:

    Shingles can recur many times, can occur on both sides of the body (right and left) and on multiple dermatomes!

    Many physicians are unaware of the above paragraph.

    Shingles occurring in the head, ie eye and ear and scalp can cause more devastating consequences.

    POST HERPETIC NEURALGIA PHN

    Post Herpetic Neuralgia PHN is defined as persistent or recurring pain lasting 30 or more days after the acute infection or after all lesions have crusted.

    Pain usually is confined to the area of original dermatomal involvement.

    The pain can be severe and incapacitating.

    Pain can persist for weeks, months, or years.

    Slow resolution of pain is especially common in the elderly.

    PHN is observed more frequently after cases of Herpes Zoster Ophthalmicus (HZO), Ramsay Hunt Syndrome- Herpes Zoster-Shingles Oticus, and in instances of upper-body Shingles dermatomal involvement.

    TREATMENT and MANAGEMENT

    Antivirals are the Cornerstone of Treatment!

    Famciclovir 500 mg 3X daily 7-10 days

    Most Efficacious Antiviral

    Least Resistant to Varicella Virus Easiest to Swallow

    Easy Dosing Regimen

    Valcyclovir 1000 mg 3X daily 7-10 days

    Related to Acyclovir . Some Resistance to Varicella Virus Difficult to Swallow for some Easy Dosing Regimen

    Acyclovir 800 mg 5x daily 7-10 days Oldest Antiviral

    Most Resistant to Varicella Virus

    Difficult Dosing Regimen

    For those in whom the rash is still spreading, or the antiviral didn’t seem to work, you need to see your physician, NP, PA ASAP and demand a different antiviral and another week to 10 days of the antiviral. This occurs more often with the head, and those who are immunocompromised. The virus has become more virulent in some, and can be resistant to Acyclovir.

    ANALGESICS

    For pain control of the excruciating pain that is Herpes Zoster-Shingles, you often have to combine a cocktail of oral medications and topical medications and treatments to work synergistically.

    OPIOIDS- Still the most effective painkillers for acute pain

    • Oxycodone

    • Hydrocodone

    • Codeine

    ANTICONVULSANTS

    • Gabapentin-Neurontin

    easier to wean off of than Lyrica

    with less side effects

    • Pregabalin-Lyrica

    ANTIDEPRESSANTS

    • Cymbalta

    • Venlafaxine

    • Amytriptylline-Elavil

    • Pamelor

    Please note: the dosage of the anticonvulsants and antidepressants need to be titrated up to work effectively! You need to be seen many times for evaluation of your pain.

    Often the pain of shingles increases in the second week!

    Ask for a referral to a Neurologist or Pain Management Specialist.

    OTHER MANAGEMENT TIPS

    • ICE OR COOL COMPRESSES- effective in decreasing or numbing the pain, hot showers often increase the pain.

    • Lidocaine or Benzocaine creams, ointments, sprays, patches help numb topically. You should use 12 hours on, 12 hours off, so that the nerve fibers do not become conditioned to the use and stop working.

    • Corticosteroids creams or sprays to reduce inflammation, use low potency

    • Cotton clothes light weight to allow your skin to breathe.

    • Do not wear synthetic clothes over your rash as they often do not allow your skin to breathe.

    • Cover your rash when in public to avoid transmission of chicken pox.

    • You need to rest and sleep!!! You cannot power through this disease! Take off from work! Ask friends for help! Exhaustion, Fatigue, and Depression usually accompany this disease.

    • Get the Shingrex Immunization

    US Available for:

    Individuals who have had Shingles

    Individuals 50 and over

    UK 70 and over

    • Google High Lysine Low Arginine Diet and Herpes. The amino acid Lysine is protective in preventing Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate and Nuts and Legumes are High in Arginine!

    • Sunlight and menstruation also are triggers for recurrent episodes of Herpes Zoster-Shingles.

    I hope this helps you. If you are having frequent episodes of Herpes Zoster-Shingles, please get yourself evaluated.

    Best Regards,

    Merry Juliana

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    • Posted

      Hi Merry Juliana,

      Wow, this is amazing! Thank you so much! I will go through this thoroughly and make notes to take to the doctor, when I have my next appointment. I will certainly look into the diet too, I am vegan (recently) so I may need to change my dairy alternatives! This is incredibly kind of you to go to the trouble of typing all of this out..... Especially during such awful weather, so a big THANK YOU once again! I hope the winds are calmer where you are now?

      Kindest regards

      Victoria

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    • Posted

      My pleasure!

      Your very welcome!

      The diet makes a huge difference. I was eating nuts &

      legumes, in an attempt to eat a more healthy diet. I then noticed that when I did, my Herpes Zoster-Shingles was more painful, and the duration longer. I stopped all nuts and legumes. Fortunately, I dislike chocolate.

      Remember, it is the ratio of Lysine to Arginine that counts.

      I am immunocompromised, and therefore will probably always have issues. I am seeing an infectious disease specialist in a couple of weeks to see if he can help me. He is young, and not burnt out.

      I did have the Zostavax, and the Shingrex, 2 stage Vaccine, but neither helped.

      Please keep me updated on how you are doing!

      Best Wishes

      Merry Juliana

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    • Posted

      diagnosed 3/26/19. My PCP acted promptly and got me on antiviral and prednisone. My facial paralysis, pain, and hearing loss have all fully recovered . But i am two months past and still have constant vertigo and neuralgia of my affected ear (itch and sporadic pain). I have discovered IBUPROFIN helps "calm" the jumpy feeling with the vertigo. Any other advice?

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  • Posted

    Hi Victoria,

    I found for RamsayHunt Syndrome that I still suffer from vertigo and get orthostatic changes with my BP ie feel faint upon rising from a chair or bed. Most practitioners have not even heard of Ramsay Hunt Syndrome. So many are abysmally ignorant of diagnosing and treating Herpes Zoster-Shingles. Unfortunately, many do not receive appropriate analgesics for the excruciating pain.

    In addition to what I wrote below, I use

    Auroguard Otic Drops 2 in my right ear 4x daily (formerly Auralgon Otic drops). They contain Benzocaine, a numbing solution similar to Lidocaine, and is effective in soothing and relieving the pain and itching.

    I would suggest seeing an excellent ENT for follow up regarding your hearing, PHN, and vertigo. I lost much of my hearing in my right ear re redue to the Herpes Zoster-Shingles. I use Dramamine for the vertigo, and it helps, even though the books say it doesn't.

    Because the Herpes Zoster-Shingles is recurrent, and severe, I am on Venlafaxine, Topiramate, an anticonvulsant similar to Gabapentin-Neurontin, that is used for migraine prophylaxis. I use Oxycodone for severe pain.

    I did have the Shingrex Vaccine two injections, but it hasn't seem to reduce the frequent episodes, as yet. I am immunocompromised.

    I am so sorry you are suffering from this disease. Herpes Zoster-Shingles is more than a rash and some pain. For many, it can be a life-altering disease with implications for the future.

    This post is meant as a guide regarding the course, treatment, and management of the disease. It is not a substitute for the accurate diagnosis and treatment by a clinician.

    I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles every three weeks in my right ear, mouth, and throat for 23 years, and more recently extending to my entire right scalp. I have included the knowledge I have learned from the wonderful friends on this forum.

    You cannot catch Shingles from Shingles. You can infect an individual who has never had chicken pox from an exposed shingles rash with chicken pox. The “varicella virus naïve” people would include the babies in utero of pregnant women, unvaccinated children, immunocompromised individuals, and anyone who has never had chicken pox. Remember, often times, a pregnant woman often does not initially know she is pregnant.

    Shingles is the reactivation of the varicella virus when your immunity had waned.

    PRE-ERUPTIVE PHASE

    The Pre-Eruptive Phase includes the following:

    Sensory phenomena along 1 or more skin dermatomes, lasting 1-14 days. Mine lasted 21 days before the rash appeared!

    Phenomena usually are noted as pain or, less commonly, itching, or tingling.

    The pain may be preceded and /or accompanied by the following symptoms: headache, photophobia, aches and pains, chills and sweating, mild fever, exhaustion, fatigue, and malaise.

    ACUTE ERUPTIVE PHASE

    The Acute Eruptive Phase is marked by:

    Patchy redness, occasionally accompanied by hardness, in the dermatomal area of involvement.

    Swollen lymph nodes adjacent to the rash

    Grouped herpetiform vesicles-blisters developing on the red base (the classic finding)

    The skin findings typically appear on one side of the spinal cord, stopping abruptly at the midline.

    Vesicular shrinkage: Vesicles initially are clear but eventually cloud, rupture, crust, and shrink.

    After vesicular shrinkage, slow resolution of the remaining red plaques.

    Almost all adults experience pain, typically severe. The pain is described as burning, lancinating, excruciating, agonizing, electric. The slightest breeze can set off agonizing spasms of pain.

    A few experience severe pain without a rash. This is called “Zoster Sine Herpete!” Many physicians fail to diagnose this as Shingles!

    Symptoms tend to resolve over 10-15 days, but can take much longer! Complete healing of lesions may require up to a month.

    Please note:

    Shingles can recur many times, can occur on both sides of the body (right and left) and on multiple dermatomes!

    Many physicians are unaware of the above sentence.

    Shingles occurring in the head, ie eye and ear and scalp can cause more devastating consequences.

    POST HERPETIC NEURALGIA PHN

    Post Herpetic Neuralgia PHN is defined as persistent or recurring pain lasting 30 or more days after the acute infection or after all lesions have crusted.

    Pain usually is confined to the area of original dermatomal involvement.

    The pain can be severe and incapacitating.

    Pain can persist for weeks, months, or years.

    Slow resolution of pain is especially common in the elderly.

    PHN is observed more frequently after cases of Herpes Zoster Ophthalmicus (HZO), Ramsay Hunt Syndrome- Herpes Zoster-Shingles Oticus, and in instances of upper-body Shingles dermatomal involvement.

    TREATMENT and MANAGEMENT

    Antivirals are the Cornerstone of Treatment!

    Famciclovir 500 mg 3X daily 7-10 days Most Efficacious Antiviral Least Resistant to Varicella Virus Easiest to Swallow Easy Dosing Regimen

    Valcyclovir 1000 mg 3X daily 7-10 days Related to Acyclovir Some Resistance to Varicella Virus Difficult to Swallow for some Easy Dosing Regimen

    Acyclovir 800 mg 5x daily 7-10 days Oldest Antiviral Most Resistant to Varicella Virus Difficult Dosing Regimen

    For those in whom the rash is still spreading, or the antiviral didn’t seem to work, you need to see your physician, NP, PA ASAP and demand a different antiviral and another week to 10 days of the antiviral. The longer duration of a continuation of an evolving rash and/or agonizing pain occurs more often with the head, and those who are immunocompromised. The virus has become more virulent in some, and can be resistant to Acyclovir.

    ANALGESICS

    For pain control of the excruciating pain that is Herpes Zoster-Shingles, you often have to combine a cocktail of oral medications and topical medications and treatments to work synergistically.

    OPIOIDS- Still the most effective painkillers for acute pain

    • Oxycodone

    • Hydrocodone

    • Codeine

    ANTICONVULSANTS

    • Gabapentin-Neurontin

    easier to wean off of than Lyrica

    with less side effects

    • Pregabalin-Lyrica

    ANTIDEPRESSANTS

    • Cymbalta

    • Venlafaxine

    • Amytriptylline-Elavil

    • Pamelor

    Please note: the dosage of the anticonvulsants and antidepressants need to be titrated up to work effectively! You need to be seen many times for evaluation of your pain.

    Often the pain of shingles increases in the second week!

    Ask for a referral to a Neurologist or Pain Management Specialist.

    OTHER MANAGEMENT TIPS

    • ICE OR COOL COMPRESSES- effective in decreasing or numbing the pain, hot showers often increase the pain.

    • Lidocaine or Benzocaine creams, ointments, sprays, patches help numb topically. You should use 12 hours on, 12 hours off, so that the nerve fibers do not become conditioned to the use and stop working.

    • Corticosteroids creams or sprays to reduce inflammation, use low potency

    • Cotton clothes light weight to allow your skin to breathe.

    • Do not wear synthetic clothes over your rash as they often do not allow your skin to breathe.

    • Cover your rash when in public to avoid transmission of chicken pox.

    • You need to rest and sleep!!! You cannot power through this disease! Take off from work! Ask family and friends for help! Exhaustion, Fatigue, and Depression usually accompany this disease.

    • Get the Shingrex Immunization

    US Available for:

    Individuals who have had Shingles

    Individuals 50 and over

    UK 70 and over

    • Google High Lysine Low Arginine Diet and Herpes. The amino acid Lysine is protective in preventing recurrent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate and Nuts and Legumes are High in Arginine!

    • Sunlight and menstruation also are triggers for recurrent episodes of Herpes Zoster-Shingles.

    I hope this helps you. If you are having frequent episodes of Herpes Zoster-Shingles, please get yourself evaluated.

    Best Regards,

    Merry Juliana

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    • Posted

      Thanks . I think your reply was for me. my PCP after prescribing the meds made me an appointment with an ENT and he is the one that immediately diagnosed the RHS so I was blessed that i had a physician that knew exactly what it was . He ordered hearing tests and a VNG. He gave me a cream foe the itch to try but it didn't really help. i have been using NEOSPORIN + and it helps but doesn't totally relieve. I am going to ask about the drops. He didn't set a follow up appt until next year - I've seen him 3 times. He just said the vertigo could take a few months to recover . My hearing is good. I just want to make sure I (and my doctor) are doing everything to aid in my recovery. Thanks again.

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