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In need of advice

Posted , 10 users are following.

rachel74437
rachel74437

Hey 

I’m 37 years old and have had shingles 25 times in the last 4 years I wok full time and have a busy family life. Every time shingles takes over stupid painful ridiculously tired.... the last time I had it, it went into my head and was horrible to say the least I’m on holiday and have noticed it’s effected the pigmentation in my skin on my back really bad. I’m worrying whilst trying not too that if it’s goes into my head again it will cause permanent damage??? Has anybody else had it in there head?? 

0 likes, 22 replies

22 Replies

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  • colin1147
    colin1147 rachel74437

    Posted

    Got it down the right side of my nose, and right forehead, also down to my right lip, last September. Not nice. Do get your eyes checked over if you get it in the head.......Colin, England. Also, watch developments on the new Shingrix (spelling?) shot(s).
  • Merry19451
    Merry19451 rachel74437

    Posted

    Dear Rachel,

    I empathize with you regarding the agonizing pain, fatigue, exhaustion, and dread of when the next episode will attack. Also, not all your friends and family understand the excruciating Neurogenic pain and flu- like symptoms that accompany Herpes Zoster-Shingles.

    I 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.

    Here is what I recommend to reduce the frequency and severity of pain of episodes.

    1. Get the Shingrex Immunization. It is a two stage vaccination one month apart, intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

    It is available in the US at the pharmacy and covered by insurance. As you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician. If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.

    2. Google High Arginine Low Lysine Diet and Herpes. The amino acid Arginine helps prevent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate, Nuts, and Legumes are all high in Arginine.

    3. Avoid the sun, UV radiation as it triggers Shingles, big-time!

    4. Try taking either Valcyclovir or Famciclovir as a maintenance dose daily. It does help some people. Do not take Acyclovir, as the Herpes Zoster-Shingles virus has developed resistance to this Antiviral. It is the oldest, and does not work, especially on people with recurrent Herpes Zoster-Shingles.

    5. Remove stressful ie toxic people from your life! Easier said than done, I know, but...if you have "so called friends" that are just using you, get rid of them. Family members who are entitled? Learn to say "No!"

    6. Is your job poison? Change it!

    You need to examine your life, delegate what you can, and rid yourself of the stress when you can.

    Stress is your enemy!

    7. Do you have any medical conditions predisposing you to Shingles ie,

    Autoimmune Disease, IBD, Cancer, taking Corticosteroids or DMARDS?

    Make certain you are in control of your health and get top-notch Physicians you can trust!

    I feel for you so much, as I know how painful and how lonely it is to suffer with no end in sight.

    Please let me know if this helps you.

    I am a Nurse Practitioner in the States.

    Best Wishes

    Merry Juliana

    • colin1147
      colin1147 Merry19451

      Posted

      Well done Merry. You are such a great source of info. All the best, Colin - England.
    • rachel74437
      rachel74437 Merry19451

      Posted

      Hey merry 

      I can’t have the vaccination here ( I live in England) until I’m over 65 I think I’ve tried to go private and they won’t let me either I have no idea why?? I would also happily pay thousands and they say I have to over 55. 

      I’m worry about worrying at times, when I’m home I’m going to take up yoga and learn to meditate calm my mind down and I’m learning to say no without feeling the guilt.. 

      Thank you for all your advice I really appreciate it 

    • Merry19451
      Merry19451 colin1147

      Posted

      Thank you , Colin

      You are also a wonderful resource on the shingles site. I wish I could meet all the fantastic people on this site who offer encouraging words, insight, and knowledge. I have learned so much from everyone.

      This site fills the void that is lacking for us in so many ways.

      Cheers to you Colin!

      Merry Juliana

    • Merry19451
      Merry19451 rachel74437

      Posted

      Rachel,

      LOL

      That was me, as well....a worrywort! I took an assertive training course to learn to say "no!". I am an RN and NP and natural caretaker, so it is still hard, gulp...

      However, I left a violent murderous stalking husband and got full legal and physical custody of my son, which was difficult to do in California. I realized certain jobs were not worth it and moved to the East Coast, to be near my identical twin, who is wonderful. My friends are true friends, now.

      I do not know continental Europe's Shingrex countries' policies, but perhaps a more liberal country ie Norway with less financial woes might be able to to offer you Shingrex without the restrictions of age. I just know the decades of suffering you are in for. Of course, there is a waiting list in the States...

      Best Wishes

      Merry Juliana

    • Loafofsoph
      Loafofsoph Merry19451

      Posted

      Hi Merry Juliana,

      Thank you for sharing so much helpful information about dealing with recurring shingles. I am completely new to this forum, which I only joined recently after experiencing 3 episodes of shingles in the last 3 months. I am 30 years old and in general I am fit and live a healthy life. I have felt worried and confused why this shingles keeps coming back. Last year I had surgery in the area where the shingles rash is occurring, and I have been vegetarian / vegan for the last 16 years. Do you think this could have anything to do with it? 

      Best wishes,

      Sophie 

    • Merry19451
      Merry19451 Loafofsoph

      Posted

      Dear LoafofSoph,

      I empathize with you regarding the agonizing pain, fatigue, exhaustion.

      Also, not all your friends and family understand the excruciating Neurogenic pain and flu-like symptoms that accompany Herpes Zoster-Shingles. Herpes Zoster-Shingles tends to occur at surgical or trauma sites. My shingles started occurring in my right ear a few months after I sustained right head trauma.

      I 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. I have had Herpes encephalomeningitis.

      Here is what I recommend to reduce the frequency and severity of pain of episodes.

      1. Get the Shingrex Immunization. It is a two stage vaccination at least one month apart, intramuscular injection. It is highly efficacious in stopping recurrent Herpes Zoster-Shingles.

      It is available in the US at the pharmacy and covered by insurance. If you are younger than 50, and you have had shingles, it is still covered. You might need a note/ prescription from your Physician. If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.

      2. Google High Arginine Low Lysine Diet and Herpes. The amino acid Lysine helps prevent Herpes Zoster-Shingles, and Arginine triggers Shingles. Chocolate, Nuts, and Legumes are all extremely high in Arginine. As you are a vegetarian/vegan, this may be a huge contributing factor to the shingles as nuts, legumes, ie beans are very high in Arginine. You may need to look at changing the ratio of Lysine/Arginine in your diet. Perhaps Lysine supplements may help.

      3. Avoid the sun, UV radiation, as it triggers Shingles, big-time!

      4. Try taking either Valcyclovir or Famciclovir as a maintenance dose daily. It does help some people. Do not take Acyclovir, as the Herpes Zoster-Shingles virus has developed resistance to this Antiviral. It is the oldest, and does not work as well, especially on people with recurrent Herpes Zoster-Shingles.

      5. Remove stressful ie toxic people from your life! Easier said than done, I know, but...if you have "so called friends" that are just using you, get rid of them. Family members who are entitled? Learn to say "No!"

      6. Is your job poison? Change it!

      You need to examine your life, delegate what you can, and rid yourself of the stress when you can.

      Stress is your enemy!

      7. Do you have any medical conditions predisposing you to Shingles ie,

      Autoimmune Disease-SLE, Psoriasis, ITP, RA; IBD, Cancer; DM, taking Corticosteroids or DMARDS?

      Make certain you are in control of your health as much as possible, and get top-notch Physicians you can trust!

      I feel for you so much, as I know how painful and how lonely it is to suffer with no end in sight.

      Please let me know if this helps you.

      I am a Nurse Practitioner in the States.

      Best Wishes

      Merry Juliana

  • shona53538
    shona53538 rachel74437

    Posted

    Hi not me but ive read on here of some that have .ive taken up yin yoga man im feeling so much better with my post herpatic neuralgia also a homeopath and apis she gives me .the ladt lot a higher dose which was last week .i today are feeling like me after almost 2 yearsgoid luck.
  • jonixo
    jonixo rachel74437

    Posted

    I have had recurring shingles for 36 years.  sad

    Ive had some horribly excruciating outbreaks.   

    I wanted to tell you what I use.  It’s called 

    Aeura   The Shingles Formula. 

    You used to be able to buy it in the store but now only online.    You dissolve four tabs in your mouth the second you feel it coming on. Then follow the directions.     I still get outbreaks but nothing like before I started this stuff.    I’m greatful for it!   

       I didn’t sign up for the monthly shipment because I don’t take it every day.     They say if you do it keeps it at bay.  

     I don’t because 1) it’s not cheap.  2) I’m afraid my body will get used to it and it won’t work as well.  🤷🏻???

    Good luck to you!   Shingles is a scary, painful  thing!!  

    • rachel74437
      rachel74437 jonixo

      Posted

      I’m going to have a look and order some that would be amazing if that helps. 

      Thank you 

  • Hector78249
    Hector78249 rachel74437

    Posted

    See an ophthalmologist (MD) who has experience in treating ophthalmic shingles (to protect your eyes). Consult with your medical provider on getting the new shingles vaccination Shingrix (2 separate doses). Shingrix is supposedly 90+% effective in preventing shingles or preventing the return of shingles. Wish you the best. 
  • Merry19451
    Merry19451 rachel74437

    Posted

    Rachel

    Correction

    Lysine prevents episodes of Herpes Zoster-Shingles, and Arginine triggers episodes of Herpes Zoster-Shingles...

    Merry Juliana

  • delma20826
    delma20826 rachel74437

    Posted

    This is my first exposure to shingles and it was on my forehead and on my scalp it’s now down around my eyes sonhad them checked today all good. I can’t give any advice as I’m just learning about this horrible illness all I can say is hugs for having it happen so many times. Hopefully this is my one and only I’ve had enough already
    • rachel74437
      rachel74437 delma20826

      Posted

      It is horrible, sleep loads and try to stay still that helps I find. I hope you feel better soon xx
    • Merry19451
      Merry19451 delma20826

      Posted

      Dear Delma,

      I am so sorry you are having a difficult time. Please have your eyes checked by an opthalmologist if they are down around your eyes. My heart goes out to you.

      Best Wishes

      Merry Juliana

    • delma20826
      delma20826 Merry19451

      Posted

      thank you merry I have had my eye checked today and they said all good but they’ve referred me to an eye clinic in a weeks time to do another check. I must admit it is a very draining depressing disease which I will now make sure I’m immunised against. Best to you all
    • Merry19451
      Merry19451 delma20826

      Posted

      It certainly is, and the physicians have no idea how excuciating the pain is, and debilitating the fatigue and exhaustion are.

      Best Regards to you,

      Merry Juliana

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