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Magpi

Ocular herpes hell

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Magpi

I've been reading some of the stories others have posted and I definitely wouldn't want to trade places with most of you. I would like to tell you about my brand of hell... Maybe this will help someone else with ocular herpes feel less alone.

I went to my optometrist two months ago because vision in my left eye had gone all blurry. He had no trouble seeing that I had a large corneal ulcer, but didn't know why. So, blaming my contact lenses, he sent me home with antibiotic drops and steroid drops. At my followup appointment a few days later, he called in his partner for a second opinion... Both agreed that my eye was worse... Still weren't sure what I had, so they got me in to see an ophthalmologist that same day.

He couldn't figure out what was wrong either, but said it didn't look like the kind of ulcer caused by contacts.... He couldn't say whether it was viral or bacterial, so he took a culture but pointed out that it was unlikely to be conclusive. (He was right... nothing grew.). He also added acyclovir to the other drugs. At some appointment after that, he told me to stop taking the steroid drops since they would aggravate a herpes infection...if that's what it was.

Tick, tick, time.. Time passes... Most of that time was spent in a dark room because anything brighter than a 40 watt bulb caused me pain. I had to wear two pairs of sunglasses and a hood when I went outside. I could read or use the computer only if I wore an eye patch over my left eye. Among my various misadventures caused by being distracted by constant eye pain and no depth perception were lots of broken dishes and second degree burns on my fingertips when I grabbed a pot handle that had just come out of a 450 degree oven.

After two weeks, my vision had improved dramatically, but the ulcer still hadn't completely healed. So, prescriptions were renewed and I was sent on my merry way... Happy that I was able to drive again and could take the dog for a walk... It's the little things...

But my vision started to deteriorate over the Thanksgiving holiday.. When I wasn't seeing my eye doc every three days or so. By my next appointment, I could no longer see the big E at the top of the chart. The only relatively good news was that the doc was now able to see the characteristic dendrites of a herpes ocular infection. So, he added Zirgan ointment to my drug list.

Finally, two weeks ago, the ulcer had healed. We backed off all the drugs. In fact, last week I was able to stop taking everything but a daily dose of the acyclovir. I was even able to read the E at the top of the chart. But nothing below it. These things take time, right?

My appointment yesterday was supposed to be one of those happy followup, everything is just peachy keen, appointments. I knew I was in trouble when I couldn't read the E.

My ulcer is back. So, now, once again, 15 times per day, I am popping a pill or dropping something that stings like hell into my eye. I seem to have developed a very low tolerance for the preservatives and the so-called inert, inactive ingredients in the medications.

I have three or four dozen people coming to my house for a Christmas - Mayan Apocalypse party on Saturday... Seemed like a good idea at the time. I suppose I should do some dusting and vacuum... But I can't see the dirt and the dust makes my eye hurt even worse than usual.

It's been two months of hell and I wish it would stop. I had breast cancer a few years ago. It was so much easier to deal with... Never thought I'd be saying that!

Sorry to be such a whiner, but maintaining a happy facade is wearing me out.

I've got to go drip something in my eye now... And make some Christmas cookies.

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diamondgirl

Hi!

I've had ocular herpes for almost 3 years. I have no other kind of herpes, so I can't speak on that. After reading your post, I can TOTALLY relate to everything you're going through. I had continuous outbreaks for the first 9 months or so. And I WISH I had been able to use Zirgan! My healthcare provider didn't list Zirgan on their formulary, and I had to use these other antiviral drops that eventually ate a hole in my cornea. The hole took nearly a year to heal with the aid of a contact lens bandage that had to be changed every two weeks by a professional contact lens fitter. I've had to take 20 doses a day of something or other during outbreaks, however since I've been in remission (over 2 years) I only take 9 doses a day of a variety of meds. My eye has a scar right across my field of vision which makes me vision impaired in that eye. It's in my left eye, just like yours. And that WAS my good eye, vision-speaking. I now cannot read without glasses to help my healthy eye, since the sick eye can't read at all. I'm so sorry you have to go through this...and I"m sorry you suffered with breast cancer as well. But it sounds like you're getting good treatment with the Zirgan. I heard that it works very well. Better than what I had to take. I can't see dust at my house either and sometimes I get embarrassed when people come over because I know the house probably looks dingy. And it's taken me a long time to come to terms with this. Some days are still hard, but it definitely gets better the longer I'm in remission. I must tell you something important...sun exposure ANYWHERE on your skin will aggravate the virus in your eye. I'm serious. I had one of the worst outbreaks ever because I got a smidgen too much sun on my arms and legs. And the sun is hard to avoid in sunny Southern California where I live. But it truly makes a difference. It's the UV rays, specifically. My doctor didn't tell me that until afterwards. So I hope it can make a difference for you now. I know it's winter, but maybe you tan, or do outdoor sports. And I know how discouraging it is...I only wanted it to go away and get the life and vision back that I always had before. And I'm still struggling with the reality that I will have to be on medication and fight this the rest of my life. But it DOES get better. Once you're really in remission, it's going to be all about maintaining. Keep me posted, and good luck!

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Magpi

Thanks!

Hi, diamond girl.

Thanks so much for sharing your story. I hadn't heard about the sun being such an issue. I'll be careful.

I was having a really bad day when I posted. It felt good to have a place to complain. Today is better. I'm able to open my eye all the way today... My vision is still awful, but at least I'm not squinty. That usually means the ulcer has healed over and I can back off the meds. The Zirgan really does work fast. Given my somewhat remote location, I feel lucky to have access to an ophthalmologist who seems very competent.

Best wishes!

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diamondgirl

Hi!

I'm glad to hear you're doing better and that the ulcer is healing. Many people with ocular herpes are able to drive it into remission with meds, and are not bothered again. Hopefully you will be one of those people. For sure, once you're in remission you'll be able to back way off on the meds which will be a relief to you. I know I'm glad to be down to 9 doses a day from 20! I used to keep an Excel spreadsheet to keep track of the doses so I wouldn't miss any. I hope you continue to improve and that your vision gets better and better. Keep me posted and good luck!

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Magpi

Excel.... I love it.

I'm using a timer app on my iPad. My doc thought it was cool. It kept going off during my post apocalypse open house last weekend. I kept apologizing, but everyone was very sympathetic.

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diamondgirl

I'm glad you're surrounded by supportive people...they're worth more than all the gold in the world. I am too, for the most part. There are a few people in my life who, at the beginning, had told me I'd "laugh about it later". Well, that's NEVER gonna happen! Nothing funny about a lifetime condition at all. Having said that, I DO find humor in the situation on occasions. And I'm not as grim about my outlook as I was, because I've been in remission for over 2 years. In the midst of all the outbreaks, I wasn't sure at the time it would ever get under control so it was hard to find a positive attitude. But I feel MUCH better about my long-term outlook now. I hope you're doing well during this holiday season. It sounds as though you entertain a lot and have lots of friends. I think that's wonderful! And I hope you are seeing better and better. Keep me posted.

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