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wastedhousewife

Ocular Herpes

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wastedhousewife

I'm amazed at how calmly I am reacting to this new diagnosis!

For the past several weeks, I have been experiencing loss of vision in my right eye. I also noticed that it seemed like I had a stye or something forming. I went to my doctor who told me she felt my blurry vision and loss of peripheral vision was probably due to migraines. I've never really even had a headache (outside of those resulting from too much wine). Since I had no migraine history, my doctor suggested that I get a CAT scan and all sorts of Jazz just to make sure everything was alright.

Before I had the chance to follow-up, about a week ago, the problem switched to my left eye! I also noticed that both of my eyelids seemed kind of thick and flaky. I saw an opthamologist, who told me my vision was perfectly fine, but that he noticed a thickening of my cornea on the left side. When I reported that to my doctor, we finally figured out that it was probably herpes keratitis. Found out today for sure, and am enjoying painful eye drops and now daily antiviral therapy (that I may need to stay on forever).

I am a little bit relieved - I had a cousin who had migraine issues who died from a tumor in her brain recently, and at least I know this is not fatal. I'm also so glad I saw the opthamologist before spending a gazillion dollars on a CAT scan! I caught herpes initially in June, and I'm far beyond being devastated by that diagnosis any longer. My first outbreak was bad, but GH is really just more of an occasional inconvenience now.

I'm also a little bit angry - not with anyone in particular, but just odds really. Only about 20,000 cases (not including recurring cases) of ocular herpes are reported each year in the US. It is more likely that you will be bitten by a tick and catch lyme disease than end up with frigging eye herpes! I have the worst luck with these things! I'm sure I just rubbed my eyes when I woke up one morning or something silly - the consequences are just so strange. Not being able to see has been terrifying, and I'm so glad it is just herpes - but I could still go blind from this if it recurrs badly enough.

Anyone else part of this small group?

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kc84

I'm going to get checked in a few days, I've noticed my recent ob has caused sores to develop at the corner of each eye near my nose. I'm hoping that the worst it does is just stay there and not enter my entire eye.

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MarkMc

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supersucks06

Well is there any way to save ur vision or any corrective surgery that can restore vision?

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Noirony

Wasted, I was wondering if you could help me out a little? I've been fretting a lot lately over the chance my son may have spread to his eyes. His first OB was inside the lip in FEB, and just a few weeks ago his eyes have become pinkish, veiny and as he explained "hurts to look at light, blurry, feels like something is in it"

This description had me rushing to the ER. I explained the cold sore development over a month ago and asked that they test him for ocular. They did an ink staining test, and said that he didn't have it because it would look like little lightning bolts on the scan, and there were none....

They gave me erythromycin ophthalmic ointment to put in his eyes 3-4 times a day. While he has not been complaining of those symptoms...they are still pink and veiny and seem the same as a week ago.

Is this ink test reliable? Does anyone else know how reliable it is? I would like very much to let this all go and feel my son will be fine but I cannot shake the feeling that if I don't find an answer soon, time will be against him for this becoming very bad.

Again...I hope this is just "classic" early herpes over-reacting. If it was just me, I could deal. But this is my baby, and this is my fault too.

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Noirony

Hi all.

This thread hasn't been posted on in a little bit but I felt the need to update all. My son has been on these eye drops for 2 weeks now. His eyes are still very veiny and sort of pink and even yellowish in some areas. He experiences spontaneous sensitivity to light and headaches as well as pressurized pain in his right eye in particular.

We are being reffered to a opthamologist tomorrow morning, as the pediatrician had no answers for me and just prescribed more of the same kind of drops.

Please pray for my son and wish us luck that it won't be ocular herpes. If anyone could share their experiences with me on what to expect with this or what I should be looking out for, please do fill me in...

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MarkMc

HI

Thanks for the updates. I was at the opthamologist on Thursday. I am currently clear of any activity in my eye, But I have been left with a scar the shape of a bare tree, with a main trunk going up through the center of my pupil and the branches are over the coloured part of my eye.

If I close the good eye its like looking through a dirty or steamed up window. I can still read these posts, but they are not that clear and I get halo's around lights (eg street lights and the 4 flash led's on the front of the laptop) There is the possibility of laser treatment as the scar is only in the top layer of the cornea, but I would loose the 20:20 vision that the optician says I have.

I have chosen to put up with it for now, obviously further outbreaks may/may not make the situation worse. Hope your son gets things sorted out soon.

Mark

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diamondgirl

Hello!

I have been battling ocular herpes for 16 months now, and it's been tough. I have been dealing with high pressure in the eye, have permanent scarring, a hole in my cornea from overuse of antiviral drops, and other issues. I don't, nor ever did, get cold sores on my face. The doctors say I'll never know how I got this, but they all assume it's from casual contact, such as a dirty doorknob, shopping cart handle, etc. When I was initially diagnosed, the doctor was sad for me. That's when I knew this was going to be a life-changer. I have rather poor vision in the eye, and since the sick eye is the dominant one, my brain wants to superimpose the blur over the clearer image I get from my healthy eye. I can no longer drive at night, cannot read without magnifiers, and am now unemployable, yet I'm not blind enough to qualify as "disabled". Crazy! Yet it's not all doom and gloom...I have been made aware that the vast majority of people with ocular herpes never have the problems I have. I'm something of an extreme case. Most people respond well to treatment. In fact, oral antiviral pills go a long way in preventing future outbreaks. I'm on a high dose of Valacylovir, and have had only one outbreak while on them. Most people never get an outbreak while on those. I just wish there were more treatment options and more support groups for those of us who have ocular herpes. It's not the end of the world, just a different world than I expected.

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wastedhousewife

Been a few months on the daily antivirals and drops now, and I'm finally seeing some improvement. I have a scar on my left cornea that keeps my vision in that eye a little bit blurry, but nothing like those first few weeks when I barely had a perepherial vision at all. As long as this one spot does not get worse, it will not be too bad. The only thing that is driving me crazy is that it seems like my eyes are irritated all the time. I can't really wear eye makeup anymore and it is frustrating. Some days I wake up and they look fine, others they are red and puffy, and peeling off. It is hard not to feel a little icky at times with that going on - but I'm still very grateful that the treatment is working.

Sorry that you have had such bad symptoms, diamondgirl. I hope that the antivirals keep helping you!

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diamondgirl

Hey!

Thanks for the encouragement...I've been dealing with this since January 2010, and have never found (until now) another person with ocular herpes. And my doctor tells me it's a common disease! I don't believe it, though. From what I've read, it's just about a half million people in the United States who have it. That's not so much. I really miss wearing eye makeup myself...I used to rock a great smoky eye look, but those days are permanently over. I always look like I got socked in the eye, since the eye is so red and a little puffy. I also have discoloration around the eye from the medicines. I wear a contact lens bandage over the hole in my cornea, which gives me a glassy-eyed look. Is the scar on your cornea being helped by steroid drops? I've been taking them since day one to minimize inflammation and scarring, and I still have scarring to a degree. And do you have "fog", and halos around lights at night? My eye pressure has been a problem...how is yours? And just to let you know, my one relapse while on Valacyclovir was because I got too much UV rays from the sun. Even a small sunburn will start it up again in susceptible people. Has this happened to you?

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wastedhousewife

My doctor told me that it is pretty rare, and I had never even heard of it before I was diagnosed. I get the fog too - usually the halo just stays to the perepherial vision side, but sometimes it changes. I sit at a computer all day, and sometimes at night I can't see well enough out of my left eye to focus on reading. It's annoying - but I think the thing I miss most is my signature purple Mac eyeliner :( Pretty vain and bratty of me I know, but I'm having a hard time getting use to no makeup. I look like I'm never quite awake! Luckily I have told my friends and coworkers, and everyone has been supportive, because most days the redness is pretty noticeable - and pretending to have pink eye once a week would be weird.

My doctor warned me about sun, and also about taking any medications that would act as immuno-suppressants. I have secretly gone tanning several times in the interimn, but nothing that was even close to a sunburn and always wearing goggles. Have not had another serious flare up from that so far, but I am being careful about it. My eye pressure has been a problem too - so much so that I now have a regular opthamologist that I see very frequently. So far I have not had any discoloration from the drops, but I worry about that because there are so many. It's weird - I've never even been a person who would take aspirin, so having to take daily pills and all of this has been an unpleasant change.

How did you first find out? I was in a meeting at work and kind of out of nowhere my entire left eye freaked out. It was a really dark spot with a shimmery halo around it, and it did not go away for 6 hours. It took a few weeks after that with the same sort of thing happening every few days, and then my eyes swelling and such, for the doctors to finally figure it out. Also - do your eyelids ever peel? It happens to me about once a week where I wake up and the skin is all flaky and coming off all around both eyes, not even just my left one. My doctor said it is related, but I have no comparisons :)

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diamondgirl

I had to laugh about the eyeliner! It's not vain and bratty...it took me over a year to throw out all my cool eye makeup, because it was part of my life for over 30 years! Please, please be careful about UV rays! I had a terrible relapse because I got too many on a cloudy day, fully dressed! I significantly increased my permanent damage with that particular relapse. And I can totally relate to the "too much medicine" feeling. I'm on six prescriptions right now, taking 13 doses a day total. I only used to take vitamins before this eye thing. So here's how I found out...I woke up one day with a terribly thick fog and multiple vision in the left eye. There was pain too, of course. When I got to the doctor, my pressure was 47. When he checked my eye through the slit lamp, he was saying "Oh my gosh!" and stuff like that. I know doctors are not supposed to show panic, but he did. And I've been fighting it ever since. I don't have any peeling on my lids. I wonder if it's a side effect of one of your medicines. Or maybe a side effect of a combination of your medicines. No one knows all the ways these medicines interact with each other. I'm glad I found you! No one I know, except you, can relate to this rare ( I think) disease. And my friends and family are probably sick of me! No beach trips (or any sunny outing), no swimming ever again, etc. I even have to do the dishes with safety goggles! (Even I have to laugh about that one!) I hope you never have a relapse, ever.

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wastedhousewife

I did not mean to giggle a little bit picturing you doing the dishes with your goggles on! If it makes you feel any better, when I said I went tanning wearing goggles, they were my snowboarding goggles! I know I should not do it at all - but I'm about to do all of these engagement pictures and things, and it is bad enough that I think I resemble a mole with no eye makeup!

The weird thing about keratitis is that my doctor has been doing all this research because she has never even seen it before. I know the statistics make it look a bit less rare than it is - but there hasn't been another case reported in Portland that she knows of. Makes me feel like I should either crawl into a cave, or buy a ton of lottery tickets. I'm only on 4 prescriptions right now, but I feel like I'm balancing my life around my eye drops. I never even use to take vitamins, just the gummy bear kind, so this is a big change. I might talk to my doctor about my meds and see if we can do anything about the peeling. It is the worst! I never notice that it is happening until morning when my eyes are huge and all flaking off. My poor significant other! He already has tons of guilt about the whole HSV thing anyway, but I feel bad that he has to spend at least one morning a week coaxing me out of the bathroom that I have locked myself in :) Maybe that will get better sometime!

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diamondgirl

Your poor, peeling eyes! Does it hurt? Is it a million teeny flakes, or huge peels? Ever since I got ocular herpes, I have been forbidden to wear any sort of eye cream, serum, etc. I don't even put plain old moisturizer on, or near, my eyelids. The doctor said not to. I wash my face with mild liquid soap twice a day and that's it. I guess I'm lucky, although who knows? I might get peeling eyelids in the future. Now, are your engagement pictures soon? If there's a little time to go, maybe your doctor can help you come up with a solution to the peeling, either with medicine, or maybe you can get permission to put something on your lids to soothe them. I'm just guessing, of course, but is your doctor convinced that the peeling is related to the virus? I was always told that people could get the actual sores on their lids and around their eyes. That has not happened to me. Yet. Now, last summer, my regular family doctor (not my ophthalmologist) ran me through 26 different lab tests to determine if my ocular herpes was related to a different condition I had back in December 2009. He couldn't link the two illnesses, but the reason I bring it up is he took two different eye cultures on me, to see what would grow, just in case I had more than one thing going on in my eye. My ophthalmologist reviewed the results too, of course, and I only had the herpes virus, thankfully. I wonder, has anyone taken a culture on you? I had ocular herpes for months before anyone thought to do so, and it was my regular family doctor that thought of it. Although the results were positive for the herpes virus, at least I knew that there was only one thing going on. They tested me for fungi and everything...gross! Keep complaining to your doctor about the peeling, and she will take it seriously. Doctors won't help you unless you complain, because they think if you're not complaining, it's not bothering you. Even if it doesn't hurt, perhaps it bothers you emotionally. It would bother me if I had it...my heart goes out to you! Your doctor will take your emotional well-being into account, I'm sure. Keep smiling, and know that you're not a mole with no eye makeup!

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BlahMeh

Hello, I'm so sorry to hear about what you're going through but it sounds like you are keeping it together VERY well and I commend that. I recently had my second outbreak of HSV1 in the genital (a very mild case) but I am having insane anxiety from the situation. Now I'm paranoid that I have something under my left eye. It's very light and maybe it has always been there but I am freaking out after reading about ocular herpes. So you can spread it from your genitals to your eye? I have tried to be very careful but who knows if I touched myself in my sleep then rubbed my eye...that can happen????

I wish all the best of luck to you and your health!

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diamondgirl

Hey, BlahMeh...

I don't know if you can spread it from downstairs to upstairs, but I assume so. I don't have herpes anywhere BUT my eye...I got it from a dirty surface someone else touched, like a doorknob or shopping cart handle. Then I touched my face. What exactly do you have under your eye? A sore? You would know it if it was because it would hurt or tingle, right? When I came down with ocular herpes, I woke up with eye pain, fog in the eye (bad), and multiple vision. If you have any of those symptoms at all, RUN, don't walk, to a doctor. It's a very serious disease when it's in the eye, but prompt treatment will preserve most, if not all, of your eyesight. Of course, accidental self-exposure can happen, but it's probably (I'm guessing) more common to spread a cold sore from your lip to your eye.

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BlahMeh

Wow, those are horrible symptoms, Diamondgirl! :( I'm so sorry. That sounds to be much worse than what is happeing with me "downstairs". I really hope that your OB's lessen a great deal and your eyesight is saved!!! there is no pain or tingling in my eye.It's just a teeny tiny bump that is a little lighter than my skin. I am probably being SUPER paranoid but reading all of these posts is making me feel like a hypochondriac.

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diamondgirl

BlahMeh,

Your eye is no doubt fine. I don't blame you for being paranoid, since eyesight is precious to all. You'll be fine! I don't have any bumps on my skin near my eye that are related to herpes at all. If I were in your situation, worried about spreading it to the eye by accident during sleep, I'd wear pajamas. So silly! But I'm only half-joking, because it would be nearly impossible to spread it that way, right?

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MarkMc

Hey, its nice to know i;m not the only sufferer, but crap to know you are all suffering too!!!

I have discussed using steroids to help the scar, but there seem to be a chance of complications. I am currently taking a herbal mix to help fight the virus and it seems to be working ok so far (high in Lysine and a few other things), finger crossed on that front! Its hard to give up the "acid" foods but I've cut a few out.

Hope your all doing ok today,

Mark

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diamondgirl

Hey markMc,

The steroids I'm using for scarring and inflammation are drops, not pills. There are few complications from the ones I'm on, however my doctor told me that steroid drops encourage the virus to spread, so I have to be very careful about the strength of the drops and the frequency of doses. I have to balance the risk of encouraging the virus (by using the steroid drops), and minimizing scarring. I have found that avoiding arginine has helped somewhat. I'm just striving to take in more lysine than arginine, and it seems to help a lot. I'm also avoiding the sun, which is hard in my home of Southern California. I see you're from Australia, so the UV index must be very high. Also, the steroid drops cause my eye pressure to go up, so I have to take a lot of medicines for pressure. How is your eye pressure? Do you have to take anything for it?

Good luck to you,

Diamondgirl

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MarkMc

Yeah, the steroids encouraging the virus is the main reason I chose to avoid them. Avoiding the sun is a pain here too, the walk from the train station to work is about 10 minutes and is over a bridge straight in to the sun, and the same on the way back too. I try to keep in the shaded areas as much as possible, its too hot to be out in it for any length of time anyway. I've never found out, it it sun on the area (eye/lip) that causes the outbreak or just generally being in the sun? I was told the pressure is ok, but never got a figure. I've never been in to eye make up ;):rolleyes so dont have any issues with that!!!

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diamondgirl

As far as being in the sun is concerned, I had a terrible relapse last August. I was on vacation at the beach, and the temperature was cool because it was cloudy. I was fully dressed, sitting on the beach watching the waves. The UV rays came through the clouds and I got a slight sunburn on the tops of my knees. It was only a few square inches of skin, and only slightly pink, but I got such a bad relapse from that small dose of UV rays, that I got new, permanent damage to my eye because of it. I have been fighting to stay in remission, and have been since the first of November. The trouble is, I was on (among other things), trifluridine. According to everything I've read, you're only supposed to take trifluridine (or Viroptic) for a maximum of 21 days, and my relapse was so bad I was on it 73 days. This resulted in me getting a hole in my cornea from the medicine. It was as wide, and about half as tall as my iris. Now it is four small holes directly over my pupil. It is healing very slowly because I have extensive nerve damage in the eye from the virus. It's as if the eye nerves had a stroke; when they don't work well, they can't send signals to my body to heal the cornea very well. So it's been a very slow process, helped with a contact lens bandage which I've worn continuously since last October. I have the lens bandages changed every two weeks by a special contact lens fitter. So PLEASE be careful of the sun! I know it's almost impossible considering your circumstances with walking to work, living in Australia, etc., but you must protect all exposed skin. I use a lot of sunscreen, and it helps a lot. When I was at Disneyland walking around in the sun all day, I used SPF 100, and it worked great. I also chose to go there in the winter, so that helped!

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wastedhousewife

My doctor put me on a glaucoma medication called xanatal or something like that which is supposed to help with the pressure, I will let you know how that one goes. I also switched off the steroids last week and onto some different medications. On Thursday, my left eye just swelled up huge and got super red, which was fun, but it seemed a lot more calm this morning. Still peeling, but my doctor is hopeful that will go away now that I'm off the steroids.

Diamondgirl: so, is there any chance that any o your nerve damage will start to get better, or is all of this that you have to deal with a forever thing? What are your medical expenses like with having to go in every 2 weeks? That sounds like a nightmare! I complain about seeing my doctor once a month! I promise to heed your sun advice!

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diamondgirl

Hey, Wastedhousewife,

So your doctor thought it might be the steroids that cause the peeling? I wonder how long it takes to get the steroids out of your system, so to speak. I'm glad your eye is better today! I was recently switched to a weaker steroid drop, since my doctor was having difficulty controlling my pressure on three different pressure meds. Steroid drops are know to increase eye pressure, and the switch has made a difference for the better. I'm still on the 3 pressure meds, and one of them has two active ingredients, so it's really like four. I'm maxed out on pressure meds...I'm on the best they have to offer. The doctors are trying to keep me from losing my sight because of potentially ruining my optic nerve from the pressure. I went last Tuesday to my glaucoma specialist (I don't normally see her too often), and she told me my optic nerve was still in great shape, so that was good news for me. As far as the nerve damage, that is for the rest of my life. It will not ever be better. That is why I have to wear safety goggles to do dishes. I have no blink reflex, and if I splash myself with something like dirty dishwater or hot grease, my eye won't blink to protect itself. I also can never go swimming again, for fear of a secondary infection overwhelming my permanently weakened eye. My medical expenses have run into the thousands, and I have medical insurance. Actually, I usually see my cornea specialist (my usual eye doctor) about once a month since I've been in remission. When I go for the two week thing, that is just to change my contact lens bandage. I go to a special contact lens fitter, rather than a doctor. And that (for whatever reason) is free. It's the doctor and the meds that cost so much, as well as the fuel for the 40-mile round trip. Gas is over $4 a gallon here. Now, about your red, puffy eye...I just had a thought. The same thing happened to me about three weeks ago. I was miserable. The next day it was better. On that day, I read in a newspaper article something about lysine and arginine, and how they affect cold sore outbreaks. Well, it's the same virus I have in my eye, so I was interested. They are amino acids that have an effect on the virus. Apparently, arginine encourages the virus, so I researched which foods are high in it, and realized that I ate quite a bit of it on the bad eye day. I have been avoiding foods with arginine (lots of whole-grain foods, peanuts, etc.) since then, and the comfort level of my eye is better. No more bad, red days. I always have a little red, because of the presence of the disease, and also some of the drops cause redness. It certainly is no cure, but I'll settle for a little eye comfort any day! Let me know how your eye responds to your switches in meds, and I'm glad it's feeling better today.

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AnneSofia

Im going to see the doctor for a 3rd time tomorrow. Back in march, he said it was pink eye and i was so happy. For the past 2 weeks, my vision has been blurry and in freaking out. Im going back tomorrow. I am so scared to become blind.

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