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low dose naltrexone --has anyone tried this for dry eyes?

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  • #16
    What I meant was that I wasn't sure if I could wear the sunglasses that I'm going to buy today in the house because the tint may be too dark. Looks like I need to get a seperate pair of clear lens for in the house. I've lost all sense of pride in my looks, I used to love to wear eye makeup but haven't done so in a while. This whole thing has really affected my self esteem.

    Some days are too painful to leave the house but for the sake of my kiddos I force myself on the ok and good days. I think with the sunglasses it will help a bit to get outdoors which I love!

    I'm really hoping that the sclearl lens will help and life can return to somewhat normal again but I have to keep my expectations reasonable

    Are you still using the autologus drops? I thought they were helping and I had 2-3 weeks of relatively pain free but then the last 3 weeks have been a total nightmare.

    Thanks again for your input and support

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    • #17
      Originally posted by Martz22 View Post
      What I meant was that I wasn't sure if I could wear the sunglasses that I'm going to buy today in the house because the tint may be too dark. Looks like I need to get a seperate pair of clear lens for in the house.
      Ahhh... yes, getting yourself a pair of untinted lenses will make a world of difference for around-the-house wear!

      Originally posted by Martz22 View Post
      I've lost all sense of pride in my looks, I used to love to wear eye makeup but haven't done so in a while.
      Can totally relate to that! I used to be one of those people that would never, ever, leave my house without makeup on: bronzer, blush, undereye concealer, mascara, eyeliner, maybe some eye shadow too, lipstick etc. And now, I go everywhere without a speck of makeup on... there just doesn't seem to be any point in bothering if I can't wear eye makeup.

      Originally posted by Martz22 View Post
      Some days are too painful to leave the house but for the sake of my kiddos I force myself on the ok and good days. I think with the sunglasses it will help a bit to get outdoors which I love!
      I'm sure the moisture chamber sunglasses will help - I honestly would hardly go outside at all if I didn't have mine... but with my Wiley's on, 99.9% of the wind is blocked and I can enjoy being outside. Are you light sensitive?

      Originally posted by Martz22 View Post
      I'm really hoping that the sclearl lens will help and life can return to somewhat normal again but I have to keep my expectations reasonable
      Well, you just never know... my thoughts are that it's just one more thing in the dry eye toolbox that may help you do stuff you wouldn't be able to do otherwise. (In my case, it buys me a lot more time on the computer!) Crossing my fingers for you that you end up being able to tolerate them!!!

      Originally posted by Martz22 View Post
      Are you still using the autologus drops? I thought they were helping and I had 2-3 weeks of relatively pain free but then the last 3 weeks have been a total nightmare.
      Yes, I'm still using the serum drops. Since going to Boston, I put 4 drops in each eye, about 5-10 minutes between drops, all in the morning before I put my sclerals in. I figure putting them on top of the sclerals would be pointless since they won't be able to get to my eyeballs. In a few months, when things settle down, when I figure out my limits with these sclerals, and when any improvements have plateau'd, I'll see what treatments I can get away with quitting. But for now, I'm trying to keep doing everything I was doing pre-sclerals as much as possible so it's easier to figure out what improvements are due to the sclerals themselves.

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      • #18
        SAAG- Did you recently get your Scleral lens? Was the trip to Boston worth the $$$ and how was the plane ride--ouch! How about the cost of the lens? Did your insurance pay anything towards the cost? My insurance denied paying the $800 for the scleral lens my Dr. ordered for me today, rats! Will give these lens a whirl before going the PROSE route.

        Maybe you will be able to start wearing makeup with your lens?

        I've done some research today on Corneal Neuropathy and it sounds like I fit the description to a T. I'm very interested to learn more about it. Might explain why traditinal dry eye treatments have done nothing for me and why I don't really ever feel the "dry sensation" like many others do.

        I ordered the onion goggles so I will give that a try and pray that it will bring relief at least while I'm at home. Have there been people who the goggles haven't brought relief? Maybe I don't want to know

        I wish you lived closer!!! If you're ever in the area please let me know!! We could hang out with no makeup and our super cool goggles

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        • #19
          Originally posted by Martz22 View Post
          SAAG- Did you recently get your Scleral lens?
          Yes, just returned home from Boston on March 3.

          Originally posted by Martz22 View Post
          Was the trip to Boston worth the $$$
          Yes, definitely worth the money to me - I figure I'm only 36 and I have a lot of years ahead of me... so the less my eyes affect what I can and cannot do, the better! The lenses have helped me, so I'm glad I went. Here is a link to the thread where I posted details:

          http://www.dryeyezone.com/talk/showt...ing&highlight=

          Have they totally changed my life and made me forget I have these gimped eyes? No. But they definitely helped, so the trip wasn't a waste. I'd do it again in a heartbeat.

          Originally posted by Martz22 View Post
          and how was the plane ride--ouch!
          Totally trashed my eyes on the way to Boston because I kept my eyes open the whole way there (should have kept them shut and listened to an audiobook... I know better), and to make matters worse, I watched the in flight movie and dried out my eyes even more... stupid me... I know better than to try that... sigh

          Originally posted by Martz22 View Post
          How about the cost of the lens? Did your insurance pay anything towards the cost?
          Haven't gotten the for sure tally that I'll owe yet... my coverage was only supposed to be for airfare and all BFS costs except the $3600 for the lenses themselves. (I still had to pay for accommodations and meals) However, BFS got mixed messages from my health plan, so they submitted the cost of the lenses also to see what happens... maybe I'll luck out... if not, then I'll pay up

          Originally posted by Martz22 View Post
          Maybe you will be able to start wearing makeup with your lens?
          I'd be shocked if that ever happened. Won't even hope for that... but if it happens, it will certainly be a bonus to be back to the old me again after all this time!

          Originally posted by Martz22 View Post
          Have there been people who the goggles haven't brought relief? Maybe I don't want to know
          It's like anything else... helps some people, doesn't help others. But you may as well try them! It seems to me that they help most people with dry eye and dry-eye-like symptoms.

          Originally posted by Martz22 View Post
          I wish you lived closer!!! If you're ever in the area please let me know!! We could hang out with no makeup and our super cool goggles
          LOLOLOLOL Yes, and we could plug in a bunch of humidifiers to surround us also... hmmm... maybe we could have coffee while wearing goggles and no makeup in a greenhouse... would be humid in there! Hmmm... and to make it feel like a special occasion, we could bring our eyedrops in a fancy box... with a ribbon on it... errr....There's a greenhouse at the local zoo here... plenty of seating...

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          • #20
            I have 0 schirmer and almost no staing but a lot of pain. I just started kineret drops and they help. You can only get them in Boston. I think doctors a too quick to say neuropathy. These drops to help with pain and redness.

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            • #21
              I'm in the pain study at the BFS and I just stopped taking naltrexone. I saw no improvement after 5 months but then again I'm not sure I really have nerve pain. I still recommend going there to get fitted with PROSE.
              FOR WE WALK BY FAITH, NOT BY SIGHT (2 Corinthians 5:7).

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              • #22
                What was your dosing and why don't you think you have nerve pain? Did you also use Lacosimide?

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                • #23
                  I had my LASIK disaster in 2005. The screening doctor and the surgeon should have their licenses revoked. They approved a procedure for which a pre-existing condition (which they knew about) had been ruled by the FDA as a condition for which LASIK was contra-indicated. When the pain reared its ugly head, the doctors dumped me on Kaiser, saying there was nothing wrong with me. Tests done 6 years post-LASIK proved them wrong, as I was diagnosed with a condition called LASIK-induced corneal neuropathy (http://www.aao.org/publications/eyen...007/cornea.cfm). The LASIK firm provided almost no after-care, basically doing everything possible to avoid a lawsuit rather than help to discover and treat the LASIK-induced condition. The final blow came when a cornea specialist from UCSF asked to see the Operative Report from the surgery, and the LASIK firm said they "lost" my records. This was shortly before the 7 year expiration date for keeping surgery records.
                  Last edited by Rebecca Petris; 12-Jul-2012, 09:28. Reason: Removed names of doctors & clinic

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                  • #24
                    SAAG, hi!
                    Originally posted by SAAG View Post
                    In this case, I'd pay no attention to how many people post that naltrexone drops have or have not helped. It's irrelevant. Try it, and see if YOU are helped by it. 10 people could post here and say it was useless, but there could be another 10 who don't post that it DID help. You won't know which category you fall into until you try it yourself. (((hugs!))) Hang in there... baby your eyes as much as you can... you'll find a good treatment that fixes your pain eventually... you will!!!
                    I'm in the US and would like to try this Naltrexone. Do you have an idea as to how I can get this? Thank you so very much. Are your eyes still improving on them? Thanks so, so much. ~Gerri

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                    • #25
                      Lacoside helped me alot. Unfortunately Leiters Pharmacy does not make them anymore. I would put 1 drop each in my scleral lenses and it would give me significan pain relief. Does anyone know where you can get this drops in the USA? thanks so much, fitch

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