Computer and Dry Eyes Question

[Patze]

Hi Wynter,

I too am sorry that you're having so many problems with your eyes, it's a maddening run around that we get with SJS, isn't it?  I'm glad that your doctor is willing to try to help you, and I realize that a lot of eye doctors are not up on the latest that's being researched; it seems to be a hit or miss on getting a good doctor that is aware of everything that's available out there.  Are you seeing an optometrist or an ophthalmologist?

Dr. Pflugfelder's work sounds fascinating...hopefully his work will become common place soon!  

You mentioned that you blink a ton, I find that I'm also doing that too.  Do you have any spasm's in your eye lids by chance?  I get them in the lower left eye a lot these days.

Hang in there, and keep us updated, okay?

Take care my friend -

Patze

[John in LA]

Wynter--I have both dry eyes and use to get severe eye strain usually when using a computer or reading.  Often times they are hard to tell apart and can happen at the same time.

It took a while before the eye docs tested my eyes for insufficient eye convergence (eye muscles not working correctly).  I ended up with a computer program that exercised my eyes and solved 1/2 of my eye problems.

I also have three pair of glasses for the computer and reading and progressive for other stuff. A pain but it has worked well for me.
John

[tuckerdog]

Patze,

I have had spasms of my eyelids for years - long before I had SJS.

There is actually more to my eye problem story.  First I saw a retina specialist at Baylor Eye Clinic.  My first opthamologist thought I had a retina problem.  Turns out that my retinas are perfect.  He explained that a person needs to have the proper tear components or the eyes can't focus properly (This is why just replacement tears don't really work - it is not just the fluid).  In my case I could do computer work for about 2 hours then I could no longer see well.  He explained that after those 2 hours I needed to get off the computer and rest my eyes.  (Continuing to work after I could not see well caused me to get a horrific headache and once that headache sent me to bed for 2 days).  The cause of the headache was that without proper tear components there is no way my eyes can focus properly.  Continuing to try causes the muscles that focus the eye to swell - leading to my headache.  I too have glasses specifically for computer and reading with all the extras to cut down on glare etc.  I had not heard of the computer program that exercises the eyes however I suspect that the bottom line is that my eyes don't have the correct tear film and more eye exercises are not going to help.  The Boston Eye Prostetic Lens actually traps tears under the lens so that would be the solution for me.

Tuckerdog

[zipporah]

Wynter - I take HRT with testosterone - it has fixed almost completely my dry eyes/mouth.  It stimulates moisture-secreting glands (testosterone).  I am post-menopausal, and with menopause, the hair on my legs practically went away; I have about the same amount now as when a younger woman, but no other (masculine) side effects. Women's testosterone levels decrease with age and practically disappear at menopause, just like the feminine hormones do.  Testosterone taken in low doses has very few (i've noticed none, except I have to shave my legs twice a week now, instead of twice a year!) side effects.

I don't know how old you are; if you're not post-menopausal, you might have difficulty getting a doc to give you a script for testosterone or HRT with testosterone, but if people start talking about it, it might get researched and added to Sjogren's therapies.

I hope people will start talking about it. The difference for me has been going from feeling miserable to feeling nearly normal.

[Patze]

Hi zipporah, let me welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of information!

You are so lucky to be able to take HRT, I'm not that lucky.  I have a blood disorder that prevents me from taking HRT, and/or any form of hormone, synthetic or otherwise.  It's hard enough having to go through peri & regular menopause, and then to know that you are not be able to take it just makes the experience even worse.

Hi Tuckerdog, I know what you mean about only being able to work so long before the vision goes.  I too work on computers all day long, and there are times that I move away from the machine and I can barely see - everything is so blurred (and forget about trying to read anything else for a while).

Do your eye lids stick together when they become drier?  I know that's one of my problems lately, and the looks I get from my coworkers when I try to peel an eye apart, not good.

Take care -

Patze

[tuckerdog]

Patze,

My eyelids used to stick to my eyes and wake me up at night.  Not only did I have all of the SJS symptoms but was also sleep deprived.  In my case that was cured by the autologous plasma drops.  When my corneas healed I no longer had the sticking problem and my life improved immensely because I could sleep through the night again.

TD

[Patze]

Hi TD,

I'm glad that the drops helped your eyes, I've some wonderful things about autologous plasma drops, but I'm curious, it stopped the sticky eyes all together? 

My corneas are in fair shape and I'm at the plug stage, so I'll have to see if this mess gets worse.  I still have sticking issues, but so far, not as bad as before.  Guess it's a wait and see thing now.

Take care -

Patze

[tuckerdog]

Patze,

The autologous plasma drops totally stopped the sticking for my eyelids.  Once the corneas healed they stopped sticking.  I used the drops daily for about 3 months and my corneas got almost back to normal.  After 6 months they looked normal again.  After that I only have had to use the drops when my eyes get sore.  I have only had to get 2 prescriptions of drops.  Actually my first set was nearly gone when hurricane Ike shut off my freezer for 10 days.  That ruined the drops.  I still have my second set because I don't have to use them much now.  I also have puntal plugs and they do help.  I use my other medications completely as directed.  Dr. P gave a talk at our SJS support group meeting and detailed exactly how each medication works.  From that point on I have taken the medications exactly as he directed.  I found out that even evoxac works on treating the eyes.  I posted a summary of what he said on this site.

Tuckerdog