An 11 Month Update

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I have still been struggling with this stupid disease for 11 months now. I got it on my scalp, forehead, and eyelid. The rash itself was not that large but the overall pain was horrendous with severe body weakness that lasted for months. The shingles not only damaged my nerves but my eye muscles so now my right eye cannot look straight ahead but is stuck off to the right. Therefore, I can't see well, focus and depth are huge issues for me now as well as constant irritation. My scalp, forehead, and eye are still numb. I thought the numbness on my forehead was getting slightly better but it seems to be getting worse now. Kind of distraught about all of it. The good thing is that I do not have that debilitating pain any longer. The doctor said he thought my nerves would heal within one year but he didn't think that would help my eye.

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  • Posted

    I'm 14 months out and still am dealing with fatigue and other issues. My shingles was in my mouth and throat. Still coughing, which is usually set off by spicy food. Just inhaling the vapors will do it. And I love spicy food. But the fatigue. I generally sleep 9 - 10 hours each night and still have to force myself to get out of bed in the morning. I did the Shingrix vaccine as soon as I could and I feel like it's working, as I think my mouth was trying to "flare up" during the holidays (sore side of tongue, itchy ear - all the things I had at the beginning of the initial outbreak). So I'm thankful it didn't go further. Still have a horrid taste in my mouth and altered taste buds. My dentist told me that if that didn't improve in 12 months, it wasn't going to, so yay. I chew A LOT of gum now. I'm guessing none of this is making you feel better about your situation. I feel like it's the illness that keeps giving. Forever. Unfortunately.

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  • Posted

    Dear Yogi,

    I truly feel for you. This disease with its many complications alters lives in so many ways. Is the ophthalmologist a specialist in cranial nerve palsies and strabismus? You might consider seeing a specialist. My son has a congenital cranial nerve palsy, so I know more than the average clinician.

    General ophthalmologists will not know how to treat this condition with corrective lenses. You can find these specialists at large university medical centers. I have had many issues with my eyes, and I know there are many subspecialties in ophthalmology. Not all are created equal.

    Yogi, it is a difficult burden to have gone through this disease process. I empathize with you more than you know. Do you still have the fatigue and exhaustion? Are you working?

    Best Wishes

    Merry Juliana

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    • Posted

      It took months to heal of that fatigue and exhaustion but I don't have that anymore and I don't have the severe pain any longer either. The shingles did not go into my cornea so that was also a good thing. I am just recovering from some sort of 3 week cold/flu virus and I did have a lot of fatigue/exhaustion during it. I work at home so my hours are flexible. I did close my business for months before when I was going through the worst of it. I had no choice. I did not have the strength to get out of bed for more than a few minutes. But I am really so lucky compared to so may who still have that horrendous pain. I do have a fair amount of itching.

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  • Posted

    i have had the scalp eye temple phn since 2012. I just took almost 30 mg of percoset beecause j am still in agony.

    i am resigned to this for the rest of my lifr..i will be 70 in MARCH Meaning 10 per cent of my life has brrn damaged. if i make it to 80 that means 20 percent.

    i hope you wont have to suffer,

    i am concernef about yr. eyes. fortunatrly my vidion is ok, although i cannot wear eur make up. i cant tske a chance on any fireign substsncr rubbinh me.

    did you go to sn opthamologidt to see ehat they say.

    hopefully you will get better.

    i try yo hsvr a poditive outlook when thingd get bad i go to my percosey.

    i dont have an addiction oroblem..i use it once or twicr a week when in sgony

    sorry for awful spelling.

    letd hesr how u foung.

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  • Posted

    i have had the scalp eye temple phn since 2012. I just took almost 30 mg of percoset beecause j am still in agony.

    i am resigned to this for the rest of my lifr..i will be 70 in MARCH Meaning 10 per cent of my life has brrn damaged. if i make it to 80 that means 20 percent.

    i hope you wont have to suffer,

    i am concernef about yr. eyes. fortunatrly my vidion is ok, although i cannot wear eur make up. i cant tske a chance on any fireign substsncr rubbinh me.

    did you go to sn opthamologidt to see ehat they say.

    hopefully you will get better.

    i try yo hsvr a poditive outlook when thingd get bad i go to my percosey.

    i dont have an addiction oroblem..i use it once or twicr a week when in sgony

    sorry for awful spelling.

    letd hesr how u foung.

    Report Reply
  • Posted

    Didn't your doctor warn you about the eye? Since my breakout was on right side of face and was encroaching towards my right eye, they sent me from Urgent Care to an Eye Doctor to make sure my eye wasn't in danger. I am so thankful that I was warned about and looked at for that. Its such a scary thing, especially when you're talking about the eyes! I really hope your eye gets better!

    My shingles was 3 months ago and my face still shows some redness and dark spots where the rash was. If I feel stressed, I will get itching and shooting sharp pain in the area where the rash was! I try real hard not to stress as I'm told "nothing brings Shingles on like stress does."

    Hope your eye gets better everyday!!!!

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  • Posted

    Hi yogi12221 welcome to the forum! Glad you feel comfortable enough to share what your going through. Well let me tell you about myself . I was diagnosed after coming back from a Cancun Mexico vacation/ Birthday trip for my husband last year. Boy was I surprised to wake up after being home for all of 72 hrs and find my throat was inflamed with this whitish infection-linfection-looking rash all over it! . It had spread to the back of my throat where my tonsils were too! And I was mortified. I thought at 1st I had a Bad throat infection you know from the change of weather in Mexico and ALL. Then i thought about maybe it was a BAD REACTION from the drinking we did on the daytime bus ride to a liquor-tasting place the hotel we were staying at booked us on. So we drove to the drugstore where we bought some HALLS lozenges and I began taking them right away. The next morning I awakened to a rash all on the left side of my face! It look like a blister burn it reached up to my left eye. But it stopped just underneath my left eye. My eye sight like yours waxes affected also. I can't for US these days, my eyes go cross suddenly when I'm reading words longer than 30 mins. I am a mess in my eyes! I used SCARZONE to remove the scarring. But I still have some dark marks on my skin from where the rash was. I reached a year this year 2018 June 3rd. I suffer with PHN (nerve pain) in my left nostril up to underneath my left eye! My Dr diagnosed the area as Tri Nueral. I'm like what-what-the -flocki-flocks that? Anyways, yeah I can't tell you when these symptoms and pains we live with afterwards will FINALLY go away but i can tell you that the meds they give you will help along with some other homeopathic advice some people here swears by to relieve the PHN pain. I've been prescribed Gabapentin and it's so far been shrinking my pain. I no longer feel the feel pain so intensely as I did before. I guess the nerves have shrunk. So mmaybe THIS YEAR the PHN will go away completely. I certainly hope So!

    Wishing you all the best

    elena.........

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