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Reoccurring Shingles

Posted , 9 users are following.

caddy82
caddy82

I have been getting shingles on my ear for the past 20 years, and after returning from holiday recently I have extreme flu like symptoms again. I only recently discovered that it was shingles after my last flare up (7 weeks ago), so i returned to the doctors yesterday. The struggle for me is that no one can see the pain you are in before the blisters come out, and it is only when the blisters come up that you can "prove" that you are unwell. I am on sleeping tablets and have experienced extreme weightless over the past year. My doctor has said that it is just pain from the recent blisters, but I know that until the blisters come up I am not going to get any help. I am thinking of going private and wondered if anyone on this group has got a second opinion? Any advise would be appreciated.

3 likes, 28 replies

28 Replies

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  • Dixieb
    Dixieb caddy82

    Posted

    Can I say that before you go private for a consultation , think twice,   I paid £250 to see a Consultant and I may just as well have thrown my money out of the window.  He could tell me no more than my doctor , so I am back with the NHS.    Also BUPA and the like do charge a heck of a lot.    We must protect our NHS because loads of us would not be able to afford medical treatment if we did not have it.  I realise that now.      A  15 min procedure, which I had had previously sat in a chair in the doctors , was going to cost just short of £2,000.   When I queried it,  I was told,  oh well you are admitted as a hospital patient for a day,  I told her exactly what I thought of their money making machine.

     

    • caddy82
      caddy82 Dixieb

      Posted

      Hi Dixieb,

      Thank you for your advice I will wait for my blisters to come out, and then return to my doctors. I feel so down and would do anything for this to be gone, and to get back to myself. I have not managed to drag myself to work today as in so much pain, so hoping this is the worst stage of the symptoms before it appears.

      Looking at others comments it helps to know I am not alone in my experiences with shingles.

    • Ellie1943
      Ellie1943 caddy82

      Posted

      Hi Caddy. Lots of info on here about shingles and on these forums from others who have had it. See my reply to jayneejay. What age are you? I've had it this year, April. Had Aciclovir for a week but still had a couple more outbreaks in the following couple of months. It does tend to linger. I'm now taking L-Lysine daily, (amino acid) which is supposed to help. (Jury still out on this one!)confused
    • caddy82
      caddy82 Ellie1943

      Posted

      Hi Ellie,

      I am continuing to look through as much information as I can , and others comments

      I am 33 years old, and have a family history of shingles.

      My doctor seemed sure that it would not reoccur following the Aciclovir i was given, but from your experience and others I am reassured that I am not going mad!!!

      Thank you for sharing your experiences.

      Caddy x

  • jayneejay
    jayneejay caddy82

    Posted

    Hi Caddy 

    oh bless ya .. I know what its like i have had it 4 times this year ( twice in may ) always on my butt cheek, but I do get pain before, intense deep burning stabbing pain.

    theres nothing doctor can do anyway, there is no cure, only give you aciviclor cream or tablets, and that doesnt cure it just relieves it or slows it down from a bigger outbreak..

    there is a injection for it now but thats not 100% cure either 😣

    have you had other blood tests done at all, mine also started post menopause i am 51 .. Also i discovered i had low B12 and Vit D deficeiency etc ..

    and having treatment for that now .

    stress and anxiety, injury etc and body working overtime due to deficiencies can also trigger shingles .. i had a back injury ( 3 bulging disks) and then i got my shingles reoccurring. 

    as you may know after we have chickenpox Shingles lays dormant in our nerve roots and things can set it off again 

    take care hun, 

    jay x

    • jayneejay
      jayneejay

      Posted

      Forgot to say 

      the injection is called Zostavax 

      jay x

    • Ellie1943
      Ellie1943 jayneejay

      Posted

      Zostavax is a vaccination not just an 'injection'! I understand that it doesn't 'cure' shingles but can help if given before any attacks happen in SOME people! I don't think it's given during a bout. I was informed that in the UK/NHS it's administered only to patients who are between 70 and 79 on a catchup programme, not to the general public. Elderly people are more at risk due to their immune system being less efficient as ageing occurs! It does not always prevent shingles anyway.
    • jayneejay
      jayneejay Ellie1943

      Posted

      Yes ellie 

      Vaccination / injection 

      i dont live in UK we can get such vaccinations here where i live if at higher risk, they do the vaccination when the bout of shingles has passed.

      but when its reoccurring me personally dont know if i am clear or not, as we just dont know when its on its way until the deep pain starts 

      jay 

    • caddy82
      caddy82 jayneejay

      Posted

      Hi Jay

      I thought it was bad being on my ear it must be very painful being on your butt cheek.

      I have not had any blood tests just given a course of aciviclor tablets, but I will request one following your comments.

      I am 33 years, and have family history of shingles. An immediate family member has had shingles go to her brain, which she will not recovery from due to the damage to her nerves.

      I have a high pressured job, and have also had a death in the family. I am looking at ways I can cut down stress, but being unwell is also putting a lot of pressure on me.

      I hope that I can get some further help once this episode has come out.

      Thank you for your reply

      Caddyxx

  • sparklebates
    sparklebates caddy82

    Posted

    Hi there

    I must say I now am on lyrica tabs 100mg once a day and aciclovir 400mg daily and for about a year have had no symptoms

    Maybe speak to your Gᑭ

    • caddy82
      caddy82 sparklebates

      Posted

      Hi,

      I wasn't aware that there was medication you could take daily. How many occurrences did u have before being prescribed these?

      Thank u smile

    • sparklebates
      sparklebates caddy82

      Posted

      There isn't! I was severely affected by shingles in my facial nerve that gave me Ramsay Hunt Syndrome after about 4 more attacks my gp thought there had to be away to combat this. So we are trialling daily aciclovir 400mg and so far so good ☺️
    • Merry19451
      Merry19451 sparklebates

      Posted

      Hi Sparkle!

      I get Ramsay Hunt Syndrome-Herpes Zoster Oticus R recurrent every 2-6Wks for the past 19 years. I tried an antiviral daily, but it didn't help attenuate the illness. I have autoimmune disease and was just diagnosed with breast cancer, fortunately early. Most physicians have never heard of this and the first 2 ENT doctors thought I was faking the agonizing pain. Fortunately, the neurotologist believed in me and diagnosed it. I lost most of my hearing in my right ear. I hope you continue to do well.

      Merry Juliana

    • cyndi42546
      cyndi42546 Merry19451

      Posted

      Hi!

      Reading your comment and wanted to say that is exactly what I went thru. I went to 2 different ENT and 4 other specialist. No one could figure it out or knew what to do and a few told me it couldn't be shingles because you don't keep getting it as soon as it was gone.

      Well I was diagnosed with Breast Cancer. I'm guessing g that is why my body started stressing and shingles we're going g crazy. My oncogist has been the only dr to say it is common with cancer patients to have reoccurs g out breaks. Wouldn't it be great if all Dr knew this!! I'm telling every dr I return to.

      I'm taking 500mg anti viral mess daily to keep it away. It has been helping. I did stop about s month ago and I'm having ear problems today.. Feels like it's stopped up congested.. But I feel that shooting head ache starting do I'm going to grab my bottle and take my meds

      I hope everyone experiencing this can find the reason their body my be stressing b and that they get a dr pay attention and listen.

      We need to educate our physicians about this so we and others don't suffer any longer!

    • Merry19451
      Merry19451

      Posted

      Hi Cyndi,

      Sorry you have breast cancer and Herpes Zoster. Hopefully, the breast cancer was found early enough. I must say, I knew something was terribly wrong with my body to keep getting Ramsay Hunt Syndrome-Herpes Zoster Oticus for 19 years every 3-5 weeks. My identical twin was diagnosed with breast cancer, same type of tumor, same breast, same area of the breast, same area of the breast, same size tumor, same everything, same tumor markers, same date of diagnosis within two weeks-it is freaky. I hope you are considered "cured" of breast cancer. I will have my lumpectomy in 1-1/2 weeks. Then radiation.

      All the best...

      Merry Juliana

    • cyndi42546
      cyndi42546 Merry19451

      Posted

      My best to you Hun, also your sister! Wow it's incredible what twins share! I have to return for another mammogram in a couple months. The one I had after all treatment was showing something that they said appeared benign. Uggg what can you do. I take it one step and day at a time. 

      Im feeling better and like that I have hair again...however I struggle with fatigue still. 

      My thoughts and prayers for you and your twin. Please let me know how you are doing after surgery. 

    • Merry19451
      Merry19451 cyndi42546

      Posted

      You obviously have been through the wringer, but I know you just take one step at a time. I hope you have a supportive family. I retired early after my second stroke. Fortunately, I can still talk and walk, and read. I lost a few neurons with my second stroke, but the connections have reestablished themselves.I do miss working as a nurse practitioner and helping people. My family and friends have been fantastic to me.

      I am 63 years old..

      Good luck with your recovery. I shall be thinking wonderful thoughts for your healing.

      Fondly,

      Your Friend Across the Pond

      Merry Juliana

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