Thank you ALL

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Hi everyone. I just wanted to say thank you to ALL. You are all very kind and I'm sorry that you suffer. I mean that.

Truthfully i never understood the true value of being in a forum until I joined this one. In a house full of people who love you and are taking care of you, which is the case for me, shingles can STILL make you feel so very much alone. The love and care is precious and so very much appreciated but you just can't know unless you've been there, not that I would wish this on anyone EVER.

The rash is back again on the right side of my nose and my right eye is swelling. So the pain is sure to follow. My husband and my young son are scrambling around, making sure everything is in place. Feels like we're going into battle. I'm just laying here and crying, while telling myself not to because it just makes it worse. After 8 years of this, you would think I would be used to this. But I fear the pain. I feel it coming on and I'm so tired of hospitals. Going to be a long night and everyone is nervous and dreading. Like so many times before, I hate to see my family go thru this. They cry nearly as much as I do at times. This is where I'm supposed to say something brave and say it's all going to be okay and the meds will help and i'm not alone and a dozen more positive things but the pain is coming and i'm afraid.

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  • Posted

    So very sorry😍so do you continue to get out breaks after having the vaccine? Have you had the series of two new vaccines? God be with you and your family. Prayers??🎉

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    • Posted

      Thank you Claudette. Yes ma'am, i'm still getting the outbreaks but I was told that it can take up to 3 months for vaccine to reach full effectiveness. I've only had the first shot and still taking 3000 mg antiviral everyday that I've been taking for years but i'm scheduled to go back on June 2nd for the second shot. I have noticed the outbreak is not as spread out and the pain meds seem to be working better than they were before the vaccine. For example, I would typically not be conscious this morning. Normally, it takes me being fully sedated just to relieve the pain. Thank you for your prayers...I will gladly accept any prayers you have to give. Hope you are doing well today

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  • Posted

    So sorry to read about your struggle. Have you been tested for the Shingles virus? I have complained for 5 years about repeat bouts of the Shingles itchy rash. Several doctors refused to believe me even tho the rash was generally in the same dermatone as my first bout of Shingles. I stopped seeking medical treatment as a result and just suffered thru each new case. Thankfully mine are mild now and mostly just itch. My Nurse Practitioner daughter attended a continuing ed seminar this month and learned that I should be tested as my symptoms are probably not the Shingles Zoster virus but rather a form of Herpes Simplex. A six months prescription of Valtrex should put an end to my repeat itchy rash. Now my problem is getting one of my docs to do the homework and treat me properly. Unfortunately my daughter got no written literature to share with any of them, and she can not treat me herself. I am hoping she can contact the speaker directly for more info. Maybe you can research this yourself? Take care!
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    • Posted

      Hi Linda. Yes ma'am, i was tested for the Shingles virus years ago. In fact, i'm tested every time i am admitted to the hospital. In the early days after it stopped showing up on my hip and I started breaking out on my face, nose and eye, I went through so much craziness with doctors too, so i know it's frustrating for you, i'm sorry. Because the antiviral was kind of masking it on my face, it made it hard for doctors to diagnose but some of the specialists I saw made me feel like I was some nutcase. I even had one neurologist diagnose me with PTSD from my breast cancer 2 years previous. I was so angry. I'm sorry you are going through this. You know your body better than anyone else and I wouldn't give up on this if I were you. Because you are having reoccurring outbreaks, you are at risk of nerve damage and that will mean a possible lifetime of pain, outbreak or not. My treatment became easier and less stressful when I ditched all the specialists and decided to work ONLY with my private physician. He knows me best and knows when I say its something, its something and he treats my needs with importance. I truly hope you get to feeling better, friend

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  • Posted

    Hay hun i dont know your name but im sure its gorgeous like you sound to me by your words.i k ow its hard .i dont even know what ive got im confused by it all myself.but one thing i do know is if it is PHN.after kind of being diagnosed with shingles without rash on my outer thigh though i did get a few blisters 18 months ago then its awful .i burn on my legs my arm mainly right side but can b both .my lower chin .my nerves cold pop randomly on my body inc head.im so down with it all and waiting to see neuro incase its ms.so now freaking out a bit as well.ive had massive stress .my husband passed lasy year after 12 years with cancer diagnosis at 42 .we lost our 3 month old Grandson 10 weeks prior .my fav cousin who hepled me through my husband and Grandsons death 4 weeks later then my husbands mum two weeks after that..i read your words and could hear your despair you lovely girl so we all care on this forum so though your alone your not but you are right at the end of the day we are all alone as no.one can get inside our heads or body.try to be strong as u can it will pass again love from me
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    • Posted

      Hi Ms Shona. Thank you for your beautiful message. So sweet of you. My name is Rhonda. I have read your message here twice but only now able to respond to you but your words did bring me comfort these past several hours.

      I am so incredibly sorry for your loss. I can barely find the words to express. To lose your sweet prince and then your little angel grandson. Then to lose your favorite cousin that held your hand at your lowest hour. What strength it must have taken for you to be there for your husband's family thereafter. Bless your sweet heart, you have been through the fire. Your body and mind must've been so very tired, it's no wonder that your health declined. We are blessed that your heart found its way here to this forum.

      I am sorry that you hurt. This pain you describe is familiar to me. I'm so sorry, sweetie. But hey, don't let the docs panic you yet with this possible diagnosis of MS. That's more stress on you that you don't need. I'm not a doctor but for what its worth, I was diagnosed with MS or Lupus on 6 different occasions, by 6 different doctors, over the years, only to find out each time that it was shingles throwing their medical minds a curve ball.

      Have the doctors mentioned shingles being in your eye? My pain is also on my right side. I still get it on my right hip and thigh but past 5 years, mostly in my eye and face. It stays on the right side, on my face, ear, nose, cheek, forehead, teeth and the top of my head. If I stay calm, I can just about time it now. I've got nearly an hour to prepare, before the "lighting in a bottle" begins but it will fire off some warning shots if I panic.

      The pain you described popping off randomly, sounds like it may be in your eye. I will be praying for you and hope you get answers soon. You have every right to be feeling confused. Make those doctors treat you good. It's YOUR body. Thank you again for your sweet message to me. I am hopeful this message to you makes sense. I was between doses when I began typing this but meds kicked in half through. You take care sweetie. Will be thinking of you. We ALL will. God bless you always

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    • Posted

      Thank you so much .no its not in my eyes at all just random pops of cold under skin anywhere on body ...i loved your message .you take care to .its a great site i agree so much support
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  • Posted

    I am so sorry. I wish for an answer also. In my left eye. I sincerely hope that it's not too bad for you.

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    • Posted

      Thank you Ms Lynn. Thank you very kindly. Sweet of you. I am sorry you are hurting too. Hoping this new vaccine will help us all. Praying for you peace and relief and healing. Please know your message is so very appreciated, I could hug everyone here. I am blessed to be here among you all.
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  • Posted

    Dear RF,

    I am sorry you are having another recurring episode. As a repeater, in my right ear and twice in my right eye, I understand the excruciating pain, the fear of pain, etc. I am not marginalizing by saying etc....I just don't feel like saying what you already eloquently said.

    I read that Physicians seem to question the Herpes Zoster-Shingles diagnosis, and test for Simplex etc.

    Also, you have been treated for breast cancer.

    We have similar stories.

    I would ask your Physician for a supply of Antivirals to keep at home so that you can start them at the first symptoms, and not wait until it becomes severe. That would not stop you from seeking treatment from the ophthalmologist, getting medications, analgesics, but would decrease the intensity of pain and the complications. The eye is a complex structure, and obviously well-innervated, hence the severe pain.

    I would ask for Famciclovir or Valcyclovir.

    I would make a list of pain relieving stategies that help you with the eye pain!

    Low or no light

    Cool compresses

    Opioids

    Gabapentin taper up

    Cymbalta or Venlafaxine

    Eye drops

    You be in control of the pain!

    Do not let the pain be in control of you! It makes a big difference in how you will view these episodes.

    Also, are you still in treatment for the breast cancer?

    Have you had your Vitamin D level checked? It should be at least 40. Mine was 14. I started Vitamin D3 2000 IU daily and my episodes decreased markedly.

    Diet Google High Lysine Low Arginine Diet Herpes. It makes a huge difference in decreasing the foods high in Arginine. My triggers were nuts and legumes. Chocolate is high in Arginine, BTW.

    My thoughts and prayers are with you.

    Best Wishes

    Merry Juliana

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    • Posted

      Hi Ms Juliana. I like your screen name "Merry Juliana". It's very pretty and peaceful sounding. Thank you for reaching out to me. I've read your story and you have suffered so many more years than i have, as I have only had seizures for 8 years now, but you still give so much of yourself to others. That's inspiring. I have gained so much from joining this forum. I am sorry you hurt like you do but admire your dedication to help others. Everyone on here has been so kind and beautiful. I am blessed to have found you all.

      Yes, it is true that many physicians have caused quite a stir of confusion with their zoster/simplex debate. It has wasted a damaging amount of time for many people. There needs to be more information out there. Shingles is destroying lives daily but still being depicted as this "once, maybe twice in a lifetime inconvenience" but that's simply not true.

      I was fortunate in the beginning to have a clear diagnosis of shingles and got the meds quickly. However, two years later when the antiviral meds masked the shingles after it had moved into my eye, the delay caused damage to the fifth cranial nerve, Trigeminal Neuralgia and mioclonic seizures that i continue to have today. Ironically, i was in one of the best facilities at that time, being Mayo Hospital but the diagnosis was simply missed. No one's fault really. Just a freak thing that no one could have predicted.

      Yes, I had breast cancer and mascectomy at age 38. I am not under any treatment for it now. Sorry to hear you experienced same. I remembering aimlessly walking around in the parking lot, wondering HOW was i possibly going to go forward from there.

      After my first couple years of having shingles, the frequency increased to every few months, then every few weeks and thereafter every week. I was eventually put on antiviral (Acyclovir) everyday and have been taking 3000 mg antiviral a day, every day, for 5 years now, even when i'm not having an outbreak. So I keep an abundance supply at all times. Even taking the antiviral everyday, i was still getting the shingles at least once a month.

      I was finally cleared to take the original shingles vaccine four years ago, even though I was only 48 years old back then. The shingles outbreaks were near continuous, so i took the shingles vaccine, while i currently had the shingles virus. I DO NOT recommend for ANYONE to take the shingles vaccine while you have shingles. There is a justified reason why the CDC says not to take the vaccine while you have shingles but I didn't have a choice at that point. It was that or my eyesight. Again, I do not suggest anyone to do it the way I did but I don't regret it either. I paid a high price for 5 days after but it did give me some partial relief for 3 years. Now, I'm hopeful this new vaccine Shingrix will be the cure.

      You are correct that shingles in your eye is excruciating. The first 20 times, I was hospitalized and, as you know, the hospital simply sedates you for several days till it passes. After many hospital stays and medical expense, I am able to be sedated at home now. I don't self-medicate EVER, not even Tylenol. I've never had an addiction problem and I don't intend to. I made the decision myself and my husband controls all pain relievers. If he is not home, our teenage son knows the routine. Plus, it's listed on fridge for EMS, if needed. I've heard enough bad stories to know that anyone under that much pain does not need to be in control of their meds. It's too risky, especially with meds like Dilaudid and Morphine. We have the same situation with my eye doctor, having the meds here at home, ready for an outbreak, when it happens.

      I've heard alot about specific diets and have wanted to try them over the years but have not yet had the chance to because the shingles came too often and often I'm not able to eat or drink anything for days anyway when it hits.

      I can offer some promising news though. As you know, i took the first shot of Shingrix on April 2nd and have been trying not to get my hopes up too much but my latest outbreak began yesterday and i have been sedated several times since, as is the routine, but it has taken less meds to stop the pain and the dose I took an hour ago was so little that I am still awake to type this and I am in mild pain only, when normally I would be screaming if I were conscious. Also, my rash is not getting worse. Its not gone but its not worsening like it normally does. My husband, bless his heart, has been sitting with me, while I have typed this, with the other half of my med dose in hand if needed. I will probably take it, as a precaution because the pain is hard to stop after it starts but right now, i can say, i'm not well yet but i'm not doing too bad either. Hope? Yes? Maybe? Fingers still crossed.

      Thank you again Juliana for your sweet message. Thank you ALL and God Bless all of you. Your sweet messages have been a blessing each time my eyes have opened thru this. Much love and hope, ~Rhonda

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    • Posted

      My dear Rhonda,

      Thank you for your beautiful reply. Although I never ever would want anyone to suffer with this dreadful disease, the friends I have found on this forum and the overwhelming love and support individuals give and receive warms my heart. I like to help people as that is my nature... Knowledge is power, as you know. I find it wonderful your family is so supportive and loving. You must be loving and supportive to receive that level by your family. I am surrounded by love, as well.

      Please consider this. After a while, Acyclovir may have lost some of its strength in combating the varicella virus (Herpes Zoster-Shingles.)

      Famciclovir or Valcyclovir may prove better efficacy for you. Acyclovir and Valcyclovir both stopped working for me. Famciclovir is the only antiviral that actually works for me.

      Studies have shown that the virus has some resistance to Acyclovir.

      I hope that you continue to improve, and heal quickly, this time.

      Fondly,

      Merry Juliana

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    • Posted

      Thank you Juliana for the advice about the antiviral losing its effectiveness after a while. I have been on it daily for several years now, so it does make sense. Thank you also for telling me you be done well on the Famciclovir. Else, I might've been hesitant to change due to possible side effects. I was told that even if this new vaccine Shingrix does work that it will still be necessary for me to stay on the antiviral amother 3 months, to allow my body to adjust. Thanks for the advice. I will mention this to my doctor.

      Yes, I am truly blessed to have such a wonderful supportive family around me. I love them so. Happy to hear you do as well. This is such a wonderful forum with beautiful people contributing. My prayers are with you all. Thank you for all you give to everyone. Your kindness shows brightly.

      I still have some weakness but I'm doing better now. It was not nearly as bad this go around. Thinking positive : )

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    • Posted

      : ) I took your advice and saw my doc today. He added Famvir twice daily to my daily dose of Acyclovir I already take three times a day. Hoping it works. I'm still kicking but not kicking too high. Past few days, shingles is in my eye, face, hair, my stomach, upper chest area and inside my mouth (hair and mouth is a first for me). Vision in my eye is not clear but treating with aggressively with the topical Zirgan and using an oral rinse for my mouth that is helping. Had a full blown shingle attack while in doctor's office today. Pretty sure the entire bldg heard me so they didn't have to guess where my pain level was. Doctor gave me a shot of torodol in my upper thigh for my trip back home. The breakouts are all very small, thankfully, but do hurt quite a bit. Kinda feel like someone's shooting fish in a barrel and i'm the fish. Can't wait for June 2nd to get here so I can take my 2nd dose of the Shingrix vaccine and hopefully get my life back. Praying for you all

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