10 years of suffering

[elaine5]

Wow! I am getting a lot of information from this website, and it keeps me from feeling so alone with my dry eye problem. I don't know the cause of my dry eyes, but I have been suffering for more than 10 years. Like other members, dry eyes have significantly altered the course of my life.
To date I use 15 boxes of Refresh Celluvisc and 6 boxes of Restasis every month (I also try every new type of eye drop that appears on the shelf).
I soak in a tub of hot water twice daily (using the washcloth as a compress for my eyes). I take Flaxseed oil, fish oil and any other kind of oil that comes in a capsule. My tearducts have been closed permanently ,and I wear the Boston scleral lenses for a few hours daily. I also use the tranquileyes mask at night.
I have made my history as short as possible to get to a question:
After reading the postings for days (I have to limit my reading time), I found that the one thing that I haven't tried is wearing mositure chamber glasses (goggles). I want to try them, but I don't know which ones to order. I can't use the Onion goggles because I wouldn't be able to see without my glasses. I currently need bifocals, but since I usually don't read due to the pain, I would be happy with a pair of goggles that would just give me distance vision so I could watch TV without pain. I looked at the pictures, but they look like sunglasses. I am confused. Do I need to get my doctor to order the glasses for me?
Sorry this turned out to be so long. You guys don't even know how much I appreciate this website and all of you for sharing your experiences with me.

[Lucy]

Elaine, ordering moisture chamber glasses with prescription and/or bifocals can be a bit tricky, but worth the time and money. I have a pair of Panoptx goggles with removable foam inserts with prescription, progressive bifocals and Transition lens. They look pretty good when I'm in the sun, as the foam isn't as noticeable. Indoors they may look a little odd, but I wear them to the mall, to doctors appointments etc. Also driving.

I'll tell you what I had to do. I went to a local Harley Davidson cycle shop because I thought they'd be the place to carry Panoptyx. They do, and more. I tried on a few pair of frames to see which fit me the best. This is very important, or you can spend a lot of $$ and get a bad fit, and you're stuck. I also got a pamphlet from the Harley dealer.

I went to my ophthalmologist to get a brand new eye exam. I took the pamphlet to my eye doc and showed him what I wanted for frames. I already knew how they fit me because I tried them on at the dealer's. Then we ran into a problem. The Panoptyx folks didn't have my measurements on how to place the lens and bifocals. My doc ordered the frames I asked for and then I took the frames to a different optical office to get a measurement for my face on where to fit the progressives. Don't be surprised if no one wants to get involved. If you can find a doctor or optical shop that already carries Panoptyx, you'll be ahead.

The optical shop marked my frames with a marker with regard to positioning of the progressive lens. I then had my doc send back the marked frames and his written RX to Panoptx for the assembly. I don't have a perfect fit, but it's totally functional and I've gotten lots of use from these goggles/glasses. One frame that fit me well did not give good peripheral vision and the other which I ordered was a little big for me. They cost $500, but my glasses cost that much anyhow.

I'd begin by doing a view of Panoptyx website - locate a local dealer if you can and go from there. I wanted to point out some of the kinks I ran into, but it was well worth it.
Lucy

[Rojzen]

moisture chambers in any prescription

Hi, Elaine5. . .The potential complexity of getting Panoptx (or Wiley) sport glasses made up in your prescription, and in a clear lens, derives, in part, from the fact that these products are designed to accommodate only a limited range of prescriptions. If a private optician inserts lenses not within that range, because the frames are curved in wraparound fashion, there may be distortion in your vision through the lenses.

For example, I have a pair of RecSpecs (they resemble Wileys) with foam liners, that are wraparounds, into which I had progressive lenses with a very strong distance prescription placed. The result proved problematic: The curvature of the lens totally distorted my viewing, and I could barely use the lovely glasses. They were hugely expensive. . .costing me over $600, all told, and I never really got to wear them.

If your distance prescription is in the range INTENDED for Panoptx or Wiley frames, I think you'll be AOK. . .but I would advise against forcing a stronger prescription into these products. There are some companies attempting to bevel very strong Rx lenses into wraparound frames so that the lenses themselves do not curve, but the ones I've contacted still won't go beyond a certain distance Rx. Moreover, I think that this beveling process is really expensive.

If your prescription is too strong for the Panoptx/Wiley range, please consider simply having an optician add moisture chambers to regular glass frames containing your Rx. Alternatively, you may wish to wait until a new product called MEGs comes out. . .These are regular glasses on to which one clips on some very fine-looking hard chambers. . .The Shop here may be selling the MEGs once they're on the market. . .

Moisture chamber panels added on to regular glasses require custom fitting. There are 2 opticians who are very experienced in this: Mr. Scott Kornfeld of Woodbury Optical on Long Island, NY, and Dr. Angel Perez, the director of optical services at Bascom Palmer Eye Institute in Miami, FL.

Some of our members have found yet other practitioners who will make custom chambers. And we have a member outside the U.S. who has even made her own chambers out of clear optical plastic.

A new optician to the field, Mr. Shragie Abramowitz, is also interested in making moisture chambers. He is located in Pikesville, MD.

If this whole direction seems complicated and costly, be sure to try fitover glasses that you can simply put on over regular glasses. The best I've heard of so far are Wesco fitovers with foam gaskets, which come in clear lenses. We had several exchanges about these here recently. I can even get away with a Polar Shield fitover safety spectacle, which is sold in clear plastic by Ocusoft.

If prior postings on this topic are not sufficient, please write any of here again for more details. . .

[Lucy]

As a FYI only........my RX in the worst eye is -4.5 or so. It was the highest Panoptx could accommodate in MY type frame. There is a bit of a problem with "fishbowl vision" but I've become accustomed to it and most of the time it doesn't bother me while wearing the goggles.
Lucy

[elaine5]

Lucy,

Thank you for responding to my questions. That's exactly what I was afraid of (wasting money on goggles that didn't fit/work correctly). I know there isn't a Panoptx shop within 2 hours of my home, but I will be looking into finding a Harley Davidson shop. It sounds like the whole process may take a while, but if you get relief from wearing them and they do the same for me, it will be worth the effort. Even if they don't look great, I could still wear them inside my home.

Thank you again!
Elaine5

[elaine5]

Rojzen,
Again...wow! You guys have really done your research. Now I know where to begin anyway. I will check with my doctor to see what my prescription strength is first. I may be able to get the Panoptx goggles. If not, I will try the Wesco fitovers since I am only going to use them for wearing inside my house anyway. I guess I just goggle "Wesco" and I will find them right?
About the moisture chambers that fit over a regular pair of frames....from the pictures they just look like plastic put on some frames. They don't look like they would work without any foam along the edges to create a seal. Nevertheless, if the prior two options don't work out, I will definitely look into this too.
I suffer so much with my eyes. Thanks for caring enough to help by supplying the needed information.
Elaine5

[Jade9923]

I wore moisture chamber glasses for many years. A local optician did them for me. You use regular frames and they insert hard plastic chambers which they then sort of trim to fit snuggly fit your face. What I would suggest is to research any local Sjogrens Syndrome Groups. Make that contact and you will soon find out from them if any optcians in the area make them. That is how I found mine, through a Sjogrens support group in my city.

The glasses helped me quite a bit for many years.

Good luck.

[Rojzen]

good plastic chambers require no foam

So glad to be of some use, elaine5. . .Just as jade9923 indicated, well-fitted plastic moisture chambers inserted into a regular frame can provide great relief. The foam that is used in the sport wraparounds is needed only because the wraparounds have no extenders to bridge the space between frame and eye. . .A custom moisture chamber can completely close that space, producing the most precise seal possible. . .obviating the need for foam filler. . .

The question is simply whether the costly and time-consuming custom chamber is needed in a given case. . .

If not, the Wescos can probably still be purchased on eBay. . .If not, the Wesco web site itself features the foam-lined wraparound fitovers with clear lenses. . .

[dryeyes2]

fit over glasses

Hi,

I ordered these glasses and got them yesterday. They are not a perfect fit, but they are more comfortable than my goggles. Here is a link. http://cgi.ebay.com/Safety-Glasses-F...QQcmdZViewItem

Best wishes,
dryeyes2

[elaine5]

Jade9923,
Thanks for the suggestions. I will try to locate a Sjogren's Syndrome group locally. May I ask why you don't use the moisture chambers anymore?

Elaine5

[elaine5]

Rojzen,
I think I finally understand the difference between the different types of glasses/goggles. Thanks for the explanation! I just HAVE to try something else. I am spending my life in a hot tub of water or pouring eyedrops into my eyes. As vain as I am, I don't care what they look like anymore. I just want relief and these sound like they could help a lot.

Elaine5

[elaine5]

Thanks DryEyes2! I am going to check out the glasses right now.

Also, I want to apologize for posting 3 times when apparently I should have just replied to everyone all at once. I have never posted on a forum before (only private email)
Elaine5

[Jade9923]

Elaine,

I probably wore them for about 8 years. But I was hard on them and they would sometimes tear or the plastic would get cloudy or scratched just from use. So I always had to get them replaced at least once a year. One time I can't remember why, I had to go without them for awhile. I seemed to manage ok without them so I didn't bother to get them replaced. Restasis has also helped my eyes along with the fish oil suppliments. So I don't need them any longer. I always hated wearing them because I felt like a freak. But they did help me a lot during those years. It won't be a dramatic improvement for you but it should help the tears not evaporate so fast. Definately worth a try. Let me know if you find them through a local Sjogrens group. Best of luck!

[Jody]

Goggles on ebay

I just received the ebay goggles. They are great. They fit over my glasses and really hold the moisture in. After about 15 minutes they started fogging up, but it wasn't the goggles, it was my glasses. So every so often I have to remove the goggles and wipe my glasses. I even had tears running down my face! YEA! My eyes have not felt this comfortable in years and I have been KNITTING this morning, can actually see to knit. Thanks to whoever gave this tip!
P.S. They're not beautiful, my husband said it looks like I'm about to take off with Charles Lindberg!

Jody

[Rojzen]

fabulous news!

So exciting, Jody, to get this account of your early hours on the new fitover glasses from e-Bay. . .If you're like me, the benefits may even improve over time, as the eyes start to experience long stretches of moisture. . .

Please keep us posted. ..Can you send photos of your knitting work, too?