My HSV-1 Eye Herpes
Posted on Sunday, May 4th, 2008 at 1:23 PM
I found out my childhood cold sore virus had moved to my eye after a couple of misdiagnoses in 2003 – I was 29 at the time. Extreme light sensitivity, etc. in the high altitude dessert turned my life completely around. With all windows blacked out, I slept during the day and worked from home at night with an eye patch over my affected eye, which made detailed computer work pretty difficult. Other symptoms included, redness, pain, scratchiness, itchiness, blurred vision, runny eyes, general run down feeling, horrible anxiety and depression and as it progressed – I eventually got several flu like symptoms too (in bed for days at a time, fever, congestion, etc.).
After several urgent care visits, I was finally diagnosed with eye herpes a month later by the hospital’s ophthamologist, he prescribed me viroptic and pred eye drops. I finally recovered after a couple months, but then I broke out again to the worst pain I’ve ever experienced. I cut my hair hoping that would stop the most severe headaches of my life. Doctor’s dismissed the feelings I had “in my head,” but eventually after a couple more doctors I got on oral anti-virals too (anti-virals have made an incredible difference!). It took many months to recover from that second outbreak, as I tried going off the drops and oral anti-virals, but I broke out again, and again. Finally we found some very knowledgeable and experienced doctors that got me off drops and on suppression therapy at UCLA’s Doris Stein’s Cornea Division. They have treated me like gold and I’ve gone there ever since.
Almost two years ago I moved a few hours outside of Chicago and I had only had a couple minor flare ups. We called my doctor in Cali and he said to take up to 2000mg of acyclovir if and when the virus acts up, and if it doesn’t clear right up to find a local ophthamologist. I had done very well up until very recently and I had a minor outbreak. Through a series of referrals I found another herpes specialist ophthamologist at the University of Illinois, Chicago. He confirmed my outbreak, switched me to Valtrex and I have another appointment with him in a couple weeks. I am grateful that when there is viral activity present, I now have control over it – I have become aware of what my body needs (usually an increase in anti-virals and a few days of rest/limited sun exposure), and I do well mostly on my own anymore.
I hadn’t done much of my own personal research since I first found out about my disease. I did a little online research, but mainly began therapy to get a better handle on my stress/anger issues. I was pretty frustrated there was limited information about ocular herpes, and with my first year of nothing but poor doctor advice, I didn’t want to further mislead myself with all the “miracle herpes cures” and whatnot out there. I recently did a great deal of research, though, and was pleased to find a little more info available, but I definitely had to dig past all the bogus hooey. Some of which I found was posts on herpes boards from frightened individuals – claims about brain herpes being a HUGE killer that we should all be afraid of it – that frightened me away from learning more about the very rare, extreme cases of my disease. I’ve since studied up on HSV-1 a great deal and I feel more confident that my life will go on even if I lose more vision and/or the virus keeps spreading. Actually when I read that many encephalitis (brain herpes) cases go undetected, because it is so difficult to detect, I wonder if I didn’t already have it when the headaches were so intense. All the other symptoms were there, and I was desperate enough to cut my long hair that I’d been growing out for over 10 years. I have lossed vision and at least two straight years of my life, living in a cave – herpes is not something to be taken lightly, but it’s also not something to be scared and run away from either. It is what it is, a pain in the…;) I think the best thing to do is find the best care for your body and don’t give up no matter what.
I find that generally people are scared to talk about herpes – but the majority of us have one type or another. People don’t know the dangers because they’re scared to get past the stigma or whatever; well I’ve been doing a lot of talking… Some of my family and friends seem scared of me right now for their own personal reasons, but that’s ok, my eye herpes brought about big changes, and that takes time to adapt to for people that don’t understand. (And, well, there are times when I don’t relate to them either…;) Because it’s difficult to go it alone and there aren’t always perfect support groups out there for rarer individual viral strains of herpes – I learned to seek out whatever support that’s available. I now have the best friends a gal could ever ask for and I’m always looking for more. I am so very grateful for those that have really been there for me. I look forward to being there for them too, ’cause I know I’m going to be just fine and it feels so wonderful to help those that have helped you. This is such a wonderfully informative site. Thank you Angela for your amazing contribution – I sure hope many others follow this shining example of getting the word out.
Much love and support,
Heather
About 2 months ago i wiped my eye after touching a herpes type 1 outbreak and ever since then i am having pain behind my eye, burning, and just discomfort in general. I have been taking acycovir 1200mg a day ever since i thought that i might have gotten it. I have gone to 3 opthamologists and they all said my eye is clear and no other primary care dr seems to know what is wrong with my eyes. Do you think it could be ocular herpes and the reason the dr.s havent found it yet is because i havent had an “outbreak” in my eye? I am soo very worried and depressed, please help if you can.Thanks so much
I think since three eye specialists have ruled out ocular herpes…then you can rest easy. Sometimes our mind plays tricks on us. The other other thing that I can think of is maybe you are having an allergic reaction to something?
I have had oral herpes for 2 years and wear contact lenses. I am finally making myself knowledgable about oral herpes and it scares me to death. I dont know if I was really careful. Do you think I have anything to worry about? Can you tell me a little bit more about your childhood outbreaks? Did you get a lot, close to your eye?
Please email me.
Ann, I don’t think you have anything to worry about. You’ve had oral herpes (I’m guessing) for a long time so the antibodies are up and running anyway. In addition to that you probably wash your hands when you are supposed to and practice good hygiene in a normal routine. Let’s not borrow trouble that isn’t there, ok?
I have had Oral Herpes for about almost 3 years.
I have to admit there is not enough information about there to educate us.
I wear contact lenses and I was having some trouble with blurred vision. I went to my eye doctor and he told me I don’t and never have had Ocular Herpes. Why this bothers me is that I can’t say 100% I was careful ALL of the time up until now. I have been wearing glasses for the past 9 days and i don’t show any signs of Ocular Herpes. Do you think I am over-reacting?
I do think that you are over-reacting.
Thank you for your information. I’m not sure yet if I have ocular herpes yet, i’ve suspected it for a while now. Went to a doctor who was suppose to be a herpes specialist the place was so disgusting I thought I might have walked out with another disease. I have another doctors appointment this Friday. The reason I suspect is because of what I think or outbreaks my eye looks like an aligator and the pain is killing me. I will let you know, again thank you for the info.
I was diagnosed with ocular herpes almost 6months ago now and it has not gone away for more than two days. They say there is no scarring below the oter cornea, but I am not so sure since I really have not had my vision in so long. Some days it won’t hurt/act up but my vision has only been back for those 2 days mentioned. At first they thought it was just a corneal abrasion. They had me wearing a contact patch. FYI if you have ocular herpes and you are wearing contacts and you don’t have any serious problems then it is NOT herpes. Herpes will multiply more readily and flare up with a contact.
So here I sit. I am on Acyclovir and have been on it for a while. I have to put drops in my eyes 6 times a day for lubrication. I have been on viroptic but am not on that right now.
How long is this supposed to last like this. When will it finally go dormant and give me a week of good vision? When should I see yet another doctor?
The only way to find out if what you have is ocular herpes would be to see an eye specialist.
Annie, what did your doctor tell you about all of this?
Hmmmm, I have been to two eye doctors who told me I do not have herpes in my eyes. Basically, ever since I had something going on with my mouth (sores on my tongue and swollen gums/swollen tongue when this first started) my eyes would BURN whenever they got wet. And I don’t mean just burn, I mean where I would have to call someone in the room to help me get something to dry out my eyes it hurt that bad.
Two days after the first incident, I went to the eye dr to see if I had herpes in my eyes. She put the dye in my eyes and said that I had two dry spots that were really bad, especially since I was still hurting with the dye in the eyes. She gave me some antibiotic drops (that I only took 4 times since I saw it was expired!) and to come back in a week for a check up. Went back, she did it again, a lil burn, and said the eyes looked better.
I do wear contacts so she said it was probably from that, but I dunno. She said I can wear them again since it looked better, and I wore them for about a week when my eye became inflammed again. Went to another eye dr and said it was nothing. Then a week later again, it came back, this time with the burning sensation in both eyes from geting wet. I didn’t experience blurred vision, or sensitivity to light, just it burns when it gets wet, even with drops.
Plus, these sores are still there on my tongue, which the dr does not tell me what it can be and I was tested for herpes and came out negative after 9 weeks. So yeah, I dunno what is going on with my eyes, and I feel that it is related to the sores on my tongue since I had my fingers in my mouth, then washed my hands, and put my contacts in that morning this all started. Dunno what is going on. =/
I don’t think anybody can tell you what’s going on with your eyes via the internet. All we can do is encourage you to see an eye specialist. Remember, you are not a doctor and neither are we. If you would like to learn more about the herpes virus I have some brochures in word format that I can sent you. You are welcome to use the contact form at the top of the page. I hope you get things figured out.