Reoccurring facial shingles are hell on earth

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ive had shingles about 15 times now on my face snd they always appear in the same place and are so painful. ive had them go up into my eye and i looked like i been beaten up because of all the cellulitis that came with the infection, i couldnt open my eye because of the swelling. i had to be put on a drip of acyclovir every four hours and because the fluid had nowhere else to go and being layed in bed my legs swelled up too! the blisters were always small but they itched and burnt like crazy and i been left with facial numbness the feeling like being at dentist when they inject you to make your mouth numb. because of this numbness i dont know when an attack is here, i just get a red spot and then straight away the clusters of blisters appear! i noe have them again after 4years of being shingle free. but this time the blisters are massive and oozing and i also have cellulitis again under my eye because of the swelling are redness around the blisters. i am taking 800mg a a day aciclovir tablets and praying that they dont leave a scar once they heal. i have a weekend immune system due to pernicious anemia! i think that vaccinations should be allowed for people who suffer like me and you shouldnt have to wait till your near 70 years old to get it! its not just the eldery who suffer with this awful painful infection!! i have been suffering since the age of 18 with reocurring shingles! i am now in my 40's!!!! if it was anywhere else on my body i would cope but its my face, a place where you cannot cover it!!!! so depressed with this infection. anyone else suffering since 18years old??? tell me how you cope with it!??!!

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  • Posted

    Ruth I am very sorry to hear that, I can only imagine what you are going through, I have had shingles twice and still have nerve damage, it's on my chest so it's nothing compared to what you are going through, I really really hope you get better.

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    • Posted

      bless you Joseph. nerve damage isnt a nice thing is it?! im sorry to hear you are still suffering from it. the specialist at the hospital told me thats what happens each time shingles come they attack nerve endings. i just wish that i could take a tablet a day for rest of life to stop it ever coming back. i cannot feel my right side of my face i cannot hear out my ear and i cannot see properly as the swelling across cheek under eye is growing!!! i think the shingle vaccination should be given to everyone who gets reocurring shingles or those suffering! il be at doctors on friday to see the outcome of whats next for me! low immune system doesnt help me at all.

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    • Posted

      i will, thank you. its a new GP So be interesting to see what she thinks coz other doctors are baffled as to why ive had it so many times, say its rare to get them more than twice. apparently you can only get them once or twice but thats so UNTRUE!!!! lets see what she says hey?!!

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    • Posted

      i certainly did prove them wrong! i will let you know what happens its just worrying coz its on my face and very deep infection this time im worried about scarring this time round.

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    • Posted

      DEAR Ruth

      I can see and feel yiur pain! It bothers me when people say that yiu only get shingles once ir maybe twice!!! How can they even say that! I have been getting shingles for a year and a month now and the pain from the blisters are terrible! I only hope for a miracle bow being I have seen so many different doctors! I HAD stopped taking the zovirax anti viral for a while and only take them when i see the blisters! Every 4-5 months i get the shingles and when i do its only then that i drink the anti virals! My stomach is sensitive and i have to be taking zantac for my stomach. I had thought that the shingles had gone in November 2018!

      But as can see I GOT them three days ago AGAIN!

      As i am a survivor of HURRICANE MARIA, where i lost everything including my house, I believe this outcome brought my shingles!!! I only survived to get shingles!!!!

      I am so down, I cant eat or sleep! I have my house fixed after almost two years and I am glad for that, but I am depressed!!

      I Know yiu also are suffering and I pray for us all who suffers and only wait for a miracle now. I Just had theflu and took so many meds! Maybe this triggered the shingles?

      MY new doctor is good and she tells me patience is needed and when shingles appear on the scalp it takes years!!

      So I started like i said the anti virals for 7 days and wait! PLS let me know what yiur doctor tells you!

      GOD Bless

      Myrna

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  • Posted

    Dear Ruth

    Its bad enough that yiu caught shingles at such a young age of 18!

    I Have been suffering this for a full year now getting episodes like every 4-5 months! like i said its terrible anywhere in the body, but face and scalp is the worse! I cant comb my hair and i try to keep it short! Right now its a little long cause i cant deal having it cut right now because of the pain! Like i told yiu before I live in the carribbean now and i am wishing i gave stayed in NYC where there is a better understanding of shingles than here! THE vaccine is available here but I am afraid of its aftermath because of many people i know have had it worse after getting shingrex! Rhonda here has gotten it and will be getting another set because the first didnt actually work fir her as she said! Believe she also will get the first vaccine for shingles which is a live virus vaccine after getting the second set of shingrex! She has gotten the shingles ready bad abd I pray for her as well! I am afraid to get the vaccine because everything does get complicated for me! THEY say that shingles on the scalp takes much longer to leave! My mom and sisters git shingles on the tirso just once and they were in bad pain, but eventually they got better and that was it! Its been mire than 6-7 years and they didnt ever get it again!!! SO Why do we get REPEATS???

    I am mad, hurt and so much in pain! My entire head hurts! My eyes are sore and these headaches are killing me! I cant sleep or even yet out my head on the pillow! Washing my hair with baby shampoo and its painful to wash it! i wash my hair every other day to keep it clean because my scalp is so sensitive! I am so depressed and dont know what else to do! Its not me anymore!!! I know yiur pain too!

    Be well!

    Myrna

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    • Posted

      Dear Myrna

      i feel you pain. that must be awful to have them on you head. it must be so hard for you as we are told to keep the blisters clean and when the scab over to keep them dry so they can heal as if they get wet they wont have chance to form dry hard crusts crusty scabs! i havent washed my hair either as thr shampoo would run onto my face! it is so annoying! it also angers me that we get repeats of them, when i had my first episode of them i was on holiday and the doctor told me i had been bitten by a sand fly and gave me cream to put on but it made them worse. i cut my holiday short and went home to see my own doctor who said it was impetigo! gave me treatment for that but of course it also agrivated them and made them worse. i then had scrapings of my face done which was unbearable as they scraped scabs off and made it bleed i worried about scarring then! it took doctors ages to find out it was shingles and get me the right medication! took ages to heal but was told once get over it it wont come back!!??? couple months later it happened again and i was so upset. not once have i been sent to a dermatologist which i would have thought they would do!!! now after years of suffering and changing area i live in i have a new GP Who says she will refer me to a specislist if after this episode another one occurs! she says she will look into me being able to take tablets for my life to stop the rash being so severe! i would love a cure instead!!!!! a cure that would stop them ever coming back!! the numbness is annoying, the rash itches, and its so upsetting! i think i could handle it more if it wasnt on my face!! i agree with you the head and face are the worst place to get them as theyre in a place people can see!!!!! i am keeping my fingers crossed you recover quickly my friend.

      i keep reading up on them to see if there is something new we can try to heal ourselves!!!

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