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I have shingles on my face scalp and eye has anyone had same experience?

Posted , 14 users are following.

josh10005
josh10005

Rash appeared Saturday the pain is unbearable and right eye swollen shut and left eye is starting to swell today. I've been to eye doctor and he said eyesight is ok. Scared to death my hair is going to fall out. I haven't been able to eat in almost four days. Any advice would be appreciated.

1 like, 33 replies

33 Replies

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  • mila64566
    mila64566 josh10005

    Posted

    Hello josh10005 I'm so sorry about your situation and I understand how you feel. it's a good that your eye doctor evaluated you and your eye sight is not affected, my shingles was in my left leg but as soon as I take the medicine (acyclovir 800mg 1 x a day) I notice that it gets better after 2 days, all I can tell you is to hang on and I know it's easy to say to calm down because not able to eat won't help your immune system to fight that virus, for me I took vitamin c, try to sleep and have a good bit of exercise and eat anti inflammatory food like adding turmeric to my food or ginger, also ask your doctor for pain medicine put ice pack on part that is painful I hope it helps,

  • jen53477
    jen53477 josh10005

    Posted

    Yes i have. You need to very careful when washing & combing your hair. No scratching. I used olive oil & coconut oil mixed together. And applied it to my scalp after i washed my hair. I will say the rash on my scalp wasn't so bad. I also had a swollen eye & rash on my face. It is very painful. Hopefully your doc gave you something for pain. Hope you feel better soon

  • Shoe_Lady
    Shoe_Lady josh10005

    Posted

    That is awful. I'm so sorry. I put Greek yogurt and 100% zinc oxide mixed together on my rash. It eased the pain and itch, and, I believe, it helped dry it up. Are you taking acyclovir and something for the pain?
  • jukym
    jukym josh10005

    Posted

    In future. if the symptoms before the re activation, please start the anti viral drugs. You must have a standby prescription at home and it will help not to have a full blown of it.

    Stay away from nuts and drink more green tea.

    You must start to take supplement like lysine or olive extract or garlic to build up ur immune system.

    Take care

  • josh10005
    josh10005

    Posted

    Yes I'm taking antiviral meds and hydrocodone 5mg for pain which isn't helping at all. I wish I could post a pic on here to show you guys. My doctor said it's the worst case he has ever seen. Thanks everyone for your advice it's greatly appreciated. If you have anymore pls feel free to comment
  • Azbella
    Azbella josh10005

    Posted

    Omg ,, hugs my heart goes out to you , I had ( have) shingles on my scalp & excruciating eye pain ... I've now found blister like bumps n scabs on my scalp again n eye pain is returning though it's not constant ..I'm away from my PA . N hope to see her in 2weeks , my new dr ... Is a tough nut to crack I take neuronton 300 1 every 6-8 hrs I did loose hair sorry to say , actually the texture changed curly to not so much . Feel better 👍
  • jukym
    jukym josh10005

    Posted

    Hello Josh

    The only way is to build up your immune system on your daily intake and cut down on nuts and chocolate.

    Daily green tea will help to do detoxification with good supplements like lysine, olive extract, green tea and vitamin c.

    Exercise twice a week and must do a regular routine of your diet and full supplements.

    Standy the anti viral once u feel the shooting pain arrives and must take the anti viral to prevent it from getting out of hands.

    I knew it is awfully painful as my attack on my lower arm and buttock crease,

    But it did get lessen in lesions after the shingles jab,

    Say Your Daily Prayers too.

  • Puddenpop67
    Puddenpop67 josh10005

    Posted

    The whole package is so very hard to get over.  The pain is so unbearable that you actually feel like you will never get through it.  Josh you will feel better!! You need to make sure your on antivirus mess and nerve meds.   They will help you.

     

  • Merry19451
    Merry19451 josh10005

    Posted

    Dear Josh,

    I am so sorry for your suffering. As you were seen by an ophthalmologist, he has confirmed the diagnosis of Herpes Zoster-Shingles, correct? The reason I am asking is usually, unless you are severely immunocompromised, Herpes Zoster-Shingles only strikes the right side, or the left side of the body, and does not cross the midline. It made strike one to two dermatomes adjacent to one another on the same side of the body. May I ask how old are you and if you have any diseases that cause you to be immunocompromised?

    Your other eye should not be involved is what I am saying if you are essentially a healthy person. If this is Herpes Zoster-Shingles, you should not lose your hair.

    Do you have any blurry vision? Did the ophthalmologist see dendritic lesions in your Right Eye?

    The ophthalmologist should have prescribed oral antivirals such as Acyclovir, Valcyclovir, or Famcyclovir. They often prescribe an anti inflammatory eye drop, as well as an analgesic. As you are experiencing severe pain, and most people who have shingles do, you should have received an Opioid such as oxycodone. Shingles in the eye is one of the most excruciating painful conditions of the human body and you need to have appropriate medications for it. Hopefully, you are able to take off from work and rest.

    I have had Herpes Zoster-Shingles in my right eye twice, but usually have Herpes Zoster Oticus in my right ear every three to five weeks for the last 20 years. The Zoster in my right eye was the extension of the Zoster to another dermatome. I am immunocompromised with autoimmune diseases and cancer. The cancer is curable, however.

    Usually, with Herpes Zoster-Shingles, it starts with a prodromal phase with symptoms such as headache, joint and muscle aches, malaise, weakness, sweating, chills, fever, and fatigue. Then the pain starts followed by the crops of rash. The rash looks like vesicles-blisters, which crust over. This takes up to a month. The pain can take longer to dissipate. It is better to have excellent pain control in the beginning, which helps lessens the chance of getting post herpetic neuralgia.

    This is a manageable condition, but you need an excellent ophthalmologist who knows how to treat the disease comprehensively.

    Let me know how I can help you. I am a nurse practitioner in the States.

    Best Wishes

    Merry Juliana

    • jen53477
      jen53477 Merry19451

      Posted

      Juliana,

      I understand that shingles normally only effects one side of the body. Unfortunately, i don't fall into the normal box when it comes to medical issues(never have). I am not severely immunocompromised. I have seen an infectious disease doctor & neurologist. Between them & my PCP they can not figure out exactly why i keep getting shingles and why i have had them on both sides of body numerous times.

      I know why my intial attack happened and that had alot to do with emotional stress and lack of rest. So imy immune system suffered. That was 2 years ago.

      Broke my ankle last April had another outbreak and it's been reoccurring ever since.

      I can't stop taking my antiviral or I'll have crazy outbreak all over. I have learned to live with the nerve pain because I am a light weight with the neurontin.

      However i am learning what triggers my outbreaks & taking supplements.

      Just remember not everyone falls into the normal box of things. There are oddballs like myself.

      Have a good day

      Jen

    • Shoe_Lady
      Shoe_Lady jen53477

      Posted

      My second episode happened in the exact same spot behind my shoulder blade on the opposite side!! When I started having the same pain, everyone kept telling me that shingles can't come back on the other side. They also told me you can only get it once. Because of this I did not start treatment and my pain then became excruciating and my skin tingly and sensitive to touch. Exactly the same symptoms that I had experienced before, so I started myself on my left over antivirals. I wish there was a shingles specialist!!
    • jen53477
      jen53477 Shoe_Lady

      Posted

      Me too! I asked about the vaccination after my 1st outbreak and was told no by my insurance company because I'm too young to get shingles. Even though i had it. Crazy! Since i can't seem to go more than 2 weeks without an outbreak it's out of the question for now anyways. So like i said learning to live with pain. And changing my diet & supplements to keep my immune system up.

      Just remember if you feel like that again get those antivirals and finish the whole course of treatment.

    • Merry19451
      Merry19451 jen53477

      Posted

      Dear Jen,

      First, I am very sorry for your suffering. I am aware that in certain patients, Herpes Zoster-Shingles does cross the midline. I do not speak in absolutes in my posts. I have dealt with many abysmally ignorant physicians regarding multitudes of diseases, and I keep an open mind. When Herpes Zoster-Shingles keeps recurring, your immune system is not working properly, your stress levels may be high, you may be be immunocompromised, a cancer may be lurking in your body and undetectable at this time. Breast cancers take 7-10 years to grow before they become detected. Every cancer starts out small. But your body mounts a response immediately. I am speaking from a perspective of having cared for individuals with many diseases and who developed Herpes Zoster-Shingles and subsequently discovered almost two decades later, that she had autoimmune diseases and cancer. I know that Herpes Zoster-Shingles does not read the text book when it strikes us. It is also misdiagnosed, underdiagnosed, and diagnosed too late to start antiviral immediately.

      Best Wishes

      Merry Juliana

    • Merry19451
      Merry19451

      Posted

      Please also spread the word for people that they need to find a clinician they can work with if they have recurrent Herpes Zoster-Shingles, have a supply of antivirals on hand to start the antivirals immediately upon onset of symptoms, do not wait for the rash to appear. I know you know this. Others do not, however.

      Also, they need to have a supportive clinician who will give them a supply of Opioids for the excruciating pain when Herpes Zoster-Shingles strikes.

      Best Wishes

      Merry Juliana

    • Shoe_Lady
      Shoe_Lady Merry19451

      Posted

      Hi Merry. Thank you very much for sharing your knowledge on shingles, since it seems to be so hard to get knowledgeable answers. So, for those of us with recurring shingles who are young, should we be requesting to be tested for cancers? Or how do you suggest we implement your advise? Be aware that there may be a cancer growing I our bodies that we cannot yet detect? Do you have any recommendations on preventative measures we should be taking to help us catch any problems before it is too late? I feel that my dr doesn't seem to understand shingles very well. She doesn't seem to think that the antiviral does any good, but she will prescribe the neurontin over the phone????? I luckily have a way to get the antivirals on my own, and if I start them at the beginning of the pain onset, I don't get a rash and the pain lessens in a couple days. My mom took acyclovir, one a day for the past 30 years and she is almost 80. She swears by this way of keeping the singles at bay. I'd appreciate your thoughts.

      Thank you again

      Michelle

    • Merry19451
      Merry19451 Shoe_Lady

      Posted

      Michelle,

      If you are able to switch clinicians, please go ahead. I abhor ignorant providers who refuse to update themselves. Most young people do not have cancer. Only if there is a family history of cancer, or you are symptomatic would I be screened. My identical twin and I were diagnosed with the same breast cancer at the same time within two weeks last May, same type of tumor, same breast, same area of the breast, same size within one mm, same genetic testing, same everything. We did not test positive for any known genetic mutations, however. Fortunately, the cancer was caught early, is non-aggressive, and had not spread to the lymph nodes. We believe in the usual PAP smears, mammograms, colonoscopy, etc at age appropriate intervals. I have autoimmune diseases that were diagnosed much much later. Many physicians have tried to tell me I must have Herpes Simplex, not Herpes Zoster-Shingles in my ear, as I have so many recurrent episodes. I do not even have antibodies to Herpes Simplex, but test positive to acute and chronic disease of Herpes Zoster-Shingles. I eat a lot of fruits and vegetables. My stress level when I first started having Herpes Zoster-Shingles was extremely high, as I was a single mother of a young son escaping a violent husband, and fighting him in court. I won total custody, etc, but the stress of it all caused a lower immunity.

      Certainly, taking an antiviral daily helps some prevent recurrent episodes of shingles. I would try Valcyclovir or Famcyclovir, as they are more readily bioavailable than the oldest antiviral, Acyclovir. I must say, taking an antiviral did nothing for me, but it certainly works for many people. Your doctor sounds terrible, frankly, and you need to find someone you can work with as a team. Trying to control the disease process is key, and the antivirals are the mainstay of that process.

      Please keep me posted on your progress as I like to know how we are helping one another.

      Best Wishes

      Merry Juliana

    • jen53477
      jen53477 Merry19451

      Posted

      I completely agree with you. I do realize that i am lucky to have 3 doctors who are working hard trying to figure this out.

      Cancer was the 1st thing that came to mind when i started having reoccurring shingles. My mother passed away from lung cancer that spread to her liver. So far everything is normal. I work in a hospital as an aide and i have seen countless people come in for one thing then be told they have cancer.

      I completely agree about the stress being a trigger. I know for me it is.

      Have a good day

      Jen

    • Shoe_Lady
      Shoe_Lady Merry19451

      Posted

      Thank you Merry. I have been under a lot if stress myself for over 10 years now. I am a mother of 9 kids plus one, my husband. We are blended, which adds a whole additional level of stresses. My husband is gone a lot. He does some work away, but has a lot of hobbies that take him away from home. In summary, I am basically a single mom. It is a crazy amount of responsibility. I'm sure this has had an effect on my immune system. I exercise regularly and do yoga for stress relief. I am now researching diet and have found that a lot of foods I eat are high in argenine (mostly nuts and seeds), which help keep me full. I am going to try eliminating nuts along with using the antiviral, olive leaf extract, lysine, and silver supplements. Thank you for sharing your experience and expertise with me. It helps more than you know.

      Michelle

    • Merry19451
      Merry19451 Shoe_Lady

      Posted

      Michelle,

      I knew that we had texted one another recently, but with a blended family of nine children, I should have remembered! The posts do not follow by person on my phone. Your stress levels have to be exponentially high. Hopefully, the children get along and help with the chores.

      Merry Juliana

    • Shoe_Lady
      Shoe_Lady Merry19451

      Posted

      I'm very blessed! They get along wonderfully. Not so good on all the chores! Constant battle.

      Thanks for all your help. : )

    • Merry19451
      Merry19451 Shoe_Lady

      Posted

      My pleasure.

      Good luck to you with your family and fighting the scourge!

      All the best

      Merry Juliana

    • josh10005
      josh10005 Merry19451

      Posted

      I'm 28 and very healthy and my other eye is not affected with the rash just a lot of swelling in the area under the eye but no pain in the eye I'm taking acyclovir and anti inflammatory eye drops. I just started lyrica it helps but hate the way they make me feel I guess I'm forced to just ride this out thanks everyone for the advice
    • Merry19451
      Merry19451 josh10005

      Posted

      Josh,

      The Lyrica can make people feel dopey or cognitively impaired, or lightheaded. Is that similar to how you are feeling? The reason it is important to take the meds is to reduce the pain, especially the chance of getting post herpetic neuralgia. When people do not get adequate pain relief with acute pain, and ophthalmice Herpes Zoster is one of the worst pain there is, it develops into the feared chronic, relentless and agonizing pain of post herpetic neuralgia. I hope the ophthalmologist gave you an Opioid, as well. I cannot tolerate an episode without the Opioid, just for the first three days.

      If you just have swelling around the left eye, that is just the edema from the right eye shifting. It takes awhile for the blurry vision to lessen. Continue to take your medications. Please rest, rest, rest! Let me know how you are doing as I do care.

      Best Wishes

      Merry Juliana

    • jane97743
      jane97743 Merry19451

      Posted

      How long does the severe head pain last? I have had it for 2 weeks constantly now and it hasn't got any better, I am taking Ibuprofen and Paracetamol,
    • Merry19451
      Merry19451 jane97743

      Posted

      Jane,

      You need to ask your physician for Neurontin or Lyrica and Oxycodone, an Opioid. You are taking essentially nothing for your pain. You will feel much better if you are on stronger medications. If your doctor refuses, then switch doctors. As I stated before, shingles is an excruciating disease and they can and should give you stronger medications. I always gave my patients strong analgesics. The really terrible pain lasted a month or so for the first episode, but I never received any antivirals or Opioids either. I wanted to literally cut out my ear a la Van Gogh.

      You might go to a A&E, Urgent Care, tomorrow.

      Merry Juliana

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