Occular Herpes

[phred]

well I am 5 weeks into my first Occular Herpes outbreak.

I wanted to share my experience, but I couldn't find any sort of support forum for it, so I guess I will just post here. I hope that's okay. It is from HSV-1. I've had cold sores as a teen, but not frequently and I have never had genital sores, so I really don't know where this came from all of a sudden.

I woke up the first morning with a feeling that there was "something" in my right eye. I went to turn on a light so I could see if there was something in my eye and I nearly fainted at the pain that shot through my eye when I turned the light on. After about 10 minutes, my eye had adjusted to the level of light in the bedroom and I was able to see that my eye was red and swollen. It was very sore and "puffy". My left eye seemed perfectly fine.

The family doc wasn't sure if it was bacterial or viral, so he gave me antibiotic drops and assumed that if that didn't clear it up in a few days, it was probably pink-eye.

On the third day the pain and light sensitivity was even worse and I noticed that my vision was also decreasing (in my right eye only) so I went to my optometrist where I have my yearly eye exam. She did a stain test and determined it was definitly a viral infection, but she thought it was something more than pink eye so sent me over to an opthamologist who diagnosed it as a viral keratitis. (apparently the dendritic pattern had not developed at this point - so they could not determine that it was HSV) but they gave me some viral drops that were AMAZING in reducing the pain They said that there was not much else that could be done - the virus needed to run its course, and everything including my vision would go back to normal in time.

The next two weeks were not much fun and very little changed. the light sensitivity was so severe that I needed super sunglasses to go outside, the kind that look like science lab safety goggles, because those are the only ones that block light from all angles. the blurry vision made it almost impossible for me to focus on anything, I had to hold my right eye shut if I wanted to read, drive (which was scary), or even watch TV - damn TV and computer monitors are bright!!!

However I came up with my own brilliant idea! I went to Savon and got an eye patch! which allows me to cover up my right eye and just use my left eye. this keeps the light completely off my right eye and lets it heal, and now my left eye does all the work. so I had to sacrifice my depth perception, but I was able to continue living like a human being, go to work, drive more than 2 blocks, and even go on vacation with my friends - all wearing an eye patch. that is how I am currently typing this too, cuz this monitor is still too bright for my right eye, even if I turn down the brightness settings I am getting kinda sick of the pirate jokes though

so on day 15 I went back to the opthamologist cause things had not gotten any better. this was when they were able to see the dendritic patterns in my cornea and determined that it is HVS Keratitis. my vision was so bad I could not even read the big E at the top of the eye chart! and that was with my glasses on. They gave me Viroptic drops - which cleared up the redness in as little as 3 days! woohoo! They do not think I will have any permanent scarring from this outbreak. and he said that the longer I go without a recurrence the least likely it is that it will recur

Now at 4 weeks and my vision has slowly been coming back ever since I have been on the Viroptic drops. I can see very well up close again and even read, I'm still waiting for the distance. Unfortunatly the light sensitivity is still very harsh. I'm expecting this will clear up also, I still need crazy sunglasses outside.

They have also put my on 2 weeks of Valtrex to help clear up the virus. they said they could put me on this long term if I get recurrences.

I'm very optimistic that I will get through this without permanent problems. I've read that there is about a 50% chance of a recurrence and as long as I get on Viroptic quickly and take care of it, It probably won't permanently scar my cornea. and if for some reason, my cornea gets scarred to the point of blindness, there is always corneal transplants, which are becoming more common and have good success rates. so I'm doing my best to keep a positive attitude about this.

I do have a couple general HSV related questions that I'm hoping I could find some help with:

1) I have had a wierd soreness feeling in the muscles of my neck ever since this started. its not always there, but sometimes I feel like the muscles in the neck right beneath my ear are swollen. Is this normal for a viral infection? I just feel like I have this overall sense of being weak and sick sometimes. how long does it take for this damn thing to run it's course? am I looking at another few weeks? or could this continue for months?

2) What types of things trigger these things? I've heard headache, stress and sunlight. I think it was orignally caused by a severe PMS headache that I had just days before this started. I want to find out what I can do to reduce the chances of a recurrence.

Thanks for bothering to read all of this. hopefully it will serve to help someone else who may end up with this very frustrating disease. at least I found a way to live with it. I was afraid of loosing my job at first cuz I literaly couldn't manage to leave my apartment while the sun was out. now they just make pirate jokes!

I will do my best to keep you updated as this continues

[Lasmom]

Bothered to read it? Oh, no - thank you for writing - there have been many people asking about this and no one knows....

No idea how you got it? Did the doc give you any ideas?

Jeez... I hope this gets better and I'm glad you caught it without damage.

Your quetions - I would assume the soreness in your neck ar your lymph nodes - swelling as they try to fight off the virus - aches and pains do go along with this - usually a part of prodome.

Causes - PMS causes my Obs - increase stress, lower immunites, etc... there you go. I would try multi vitamins, etc - anything to help your immune system. I doubt lysine would help you where it has to do with collagen, but I'd ask your doc for sure.

Well, Phred - welcome to the site - you are one in a million for sure - expect a ton of questions!!!

Good luck.LM

[phred]

thanks

as far as how I got it, I'm assuming the HSV1 may have been dormant inside of me for years. I have not even been physically intimate with anyone since late last year.

I should mention that exactly one month before this started, I began taking Accutane - which if you haven't heard of is a very powerful drug used to treat acne. It has many side effects including dry eyes and lower immune system. I stopped taking it and will not be going back on it, so hopefully that will illiminate some recurrence possiblities.

The "trigger" I beleive was this incredible headache I had immediately preceding my period my first cycle into the Accutane. I usually never have PMS, just cramps that follow. so this earth-shattering migraine was my first clue that something was "wrong". I woke up with the eye pain two days later. I have felt groggy and just "weak" in general since that initial headache. I have no clue why the stupid thing attacked my eye - the way I understand it ( and I'm still just learning so may not be right) is that it attacks from the nerves that it is hiding out in. so it may be lying dormant in a nerve somewhere near my eye or face, and then the headache triggered it and it spent a couple days regenerating itself and then traveled along the nerve to my eye. I think...

I think I need to treat this the same way you guys do since it's all the same virus and my doctor seems to think that Valtrex will help, so I've been reading around the posts here and I think I might go get some lysine supplements and see if that can help with not letting the virus replicate. I feel like it is all throughout my body even though it's really only visible in my eye. I have been binging on chocolate ever since this started with the easter holiday and everything, so that may not have helped. Maybe I should go home and rest too and drink alot of water - I'm actually at work right now, with my eye patch, trying to get 50 million things done - this is definitely not a good thing for a workaholic to have.

and yes, my lymph nodes (I knew they had a name) are swollen and have been since that first morning.

sorry, once I start typing, I usually end up rambling and then my posts go on for ever and ever.

Phred