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MrGrimm888's avatar

Does anyone have any advice for someone who has shingles, in their eye?

Asked by MrGrimm888 (19473points) June 27th, 2024

Long story short, I have been in the hospital for the past 2 weeks, with a shingles infection in my right eye.
Because of my immune system being suppressed, I managed to get a “super” infection in the same eye.
Doctors say, there is little that can be done, for the pain. Essentially, I am to expect severe pain, for potentially several more weeks.
I’m going to leave the hospital probably, because I don’t want to catch some other ailment.

Is this true? I just have to endure it? Anyone have any experience with shingles, and happen to know some things that could make the process less of a life wrecking event?

The worst pain, is in/behind my right eye. I have a beautiful large collection of scabby sores on the right side of my face and hairline.

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8 Answers

JLeslie's avatar

Scary situation. This is one of my big fears since I had shingles near my eye several years ago. So sorry you are dealing with this. Has your sight been affected? I can try to message a friend who was hospitalized for basically the same thing ten years ago. I’m not in close touch with her, but I can try through facebook.

Can they try Neurontin or Elavil for the pain? This is me just guessing, I have no idea if they are used for shingles.

Kardamom's avatar

I am so sorry you are going through this : (

Just did a little research. It seems like it is very important to seek medical help immediately, and start treatment within 72 hours when you first notice you have shingles in your eye, due to the potential outcomes.

You may need to see an eye doctor in addition to your regular doctor (or ER doctor).

They are likely to prescribe an antiviral such as these:

acyclovir (Zovirax)
famciclovir (Famvir)
valacyclovir (Valtrex)

Source:
https://www.healthline.com/health/eye-health/shingles-in-the-eye

MrGrimm888's avatar

I’ve been on Valtrex, and it seems to have put a dent in the swelling.
No sight issues, and doctors say we caught it early enough so my vision shouldn’t be affected.

The biggest hurdle, is the fact I had my liver transplant in 2022.

We have had to reduce my immune suppressors, so that I can fight the infections. My liver numbers are perilously getting worse. So. Doctors have been going hard on antibiotics, but occasionally being less aggressive so my liver can survive all this.
My liver team, is on it. But they have admitted that this will be a “tight rope,” to walk while keeping my liver in mind.

I am being switched to oral meds, so they can get me out of the hospital (staying is risky, with my immune system.)

The pain, is extraordinary.
ANY light, sends me into terrible pain. They say an eye patch, is not great for this issue, as it can raise pressure in the eye.

They are fine with sending me home, with powerful pain meds, but honestly the best stuff I’ve already been given barely reduces the pain.
One of my main doctors, has Sao that he expects me to have severe pain, potentially for 3 more weeks. He mainly just says “I’m really sorry this happened. It’s just going to be a rough ride”
I have not found much, in my research, that says different.

It’s crazy sunny, here in Charleston SC. And I should have already completed my new canoe trailer.
I’m going to have to bury myself in darkness, I guess.
I’m happy nobody is being weird about pain meds, but I don’t really want to be on them for weeks…

Cold compresses, have no affect.

Bottom line, is I’m just going to have to suffer.

I trust my medical team, and what they’re doing. I guess I’m hoping for some potential “life hacks,” that others may have tried.

I actually got the “shingles” vaccine, a year ago. And I’m only just 44 years old.
My mother, said she had shingles on her face when she was 16.

I didn’t know I could get this, so young. But, I guess it doesn’t matter how old you are, just if you once had chicken pox.

I have a VERY tormented area of skin around that right eye. It’s “drying up,” and I am not a typically vain person, but I look like a monster. Will my face, ever heal?

I just have ZERO experience, with this.
I’ve heard fentanyl patches mentioned, but that stuff makes me nervous.

JLeslie's avatar

I’ve been getting reoccurring shingles since my 20’s. A few of us jellies have that problem and I know a couple of people in real life, one since his teens.

The first outbreak is usually the worst and the longest. Thank goodness they diagnosed you correctly. The first time I had my doctor did not diagnose it correctly, thank goodness it wasn’t on my face. I won’t bother telling you my whole story. I think my first was three weeks with no meds to treat it, but not my eye.

Did they try Neurotin? When I wrote my other post I was half asleep and didn’t bother googling. Now, I’ve done a search and it is used. I would try it, but I don’t know if it is hard on the liver, so your doctors maybe are considering that too, which they should. It’s an old drug and many people take it for pain, it works on the nerve.

I’ve had fentanyl once and it does reduce pain well. I have no history of addiction, if you do I would steer very clear. Even without a history I would be nervous too. I didn’t feel instantly addicted, not at all, but that was my experience I don’t know what would happen to someone else. I would only use it sporadically in extreme pain temporarily.

LifeQuestioner's avatar

I’ve never had shingles, but I know they are really painful. And then in your eye? I am horrified for you and I hope something can be figured out.

I wonder if some numbing eye drop sort of thing would help. I know when I was having to get shots in my eye a while back, they would numb them up really good, but I don’t know if that’s the kind of thing you would want to use around the clock. Might be worth asking about though.

MrGrimm888's avatar

Update.
Back in the hospital.
I guess we’re going to repeat the treatment, and hope my liver and kidneys don’t get too hurt.

Thanks all. Hopefully, the treatment will work this time.
The pain is almost unbelievable. Especially when doctors are looking around in my eye with different lights. It’s kinda why I haven’t been here in a bit. My phone hurts my eye…

Kardamom's avatar

@MrGrimm888 I’m so sorry you are having to go through this. I hope this next treatment will relieve the pain in your eye.

MrGrimm888's avatar

Thank you. It sadly appears that several of us, are having a rough time. I really hope we ALL have some better luck.

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