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

[jenny2008]

I am still trying to hear back from my doc re the low dose naltrexone--people online it can help so much with so many illnesses. i was curious if anyone has tried it. i know there are side effects and it can be $$$ without going through a doc..

does anybody have any advice on this ?? thanks so much!

[Guest]

If you end up at the BFS, and the PROSE lenses alone aren't enough to help you, they can refer you to Dr. Rosenthal. He is working with low dose PF naltrexone eye drops. I just filled my rx for 10ml from Leiter's pharmacy and it cost just over $50 (plus shipping and duties/taxes)

If I recall correctly, he said they don't help everyone, but if they do help, they can take anywhere from 2-8 weeks to start working.

[Martz22]

Naltrexone

Dr. Is suggesting I use naltrexone eye drops in scleral lens. Has anyone had help with these drops? I've tried everything, yes everything and still have burning reds eyes with no staining! I need a break from the pain!!

[Guest]

Dr. Is suggesting I use naltrexone eye drops in scleral lens. Has anyone had help with these drops? I've tried everything, yes everything and still have burning reds eyes with no staining! I need a break from the pain!!

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!!!

[spmcc]

Dr. Is suggesting I use naltrexone eye drops in scleral lens. Has anyone had help with these drops? I've tried everything, yes everything and still have burning reds eyes with no staining! I need a break from the pain!!

If you want something quick to dampen the pain, get a pair of moisture chamber glasses. I have WileyX and 7Eye. You can find a bunch of different ones at the Dry Eye Shop or you can visit your local Harley-Davidson dealer.

Even if you decide to go ahead with sclerals and LDN drops, there will probably be a wait. You can be wearing your moisture chambers and (relatively) pain free in the meantime.

[Martz22]

SAAG- Thank you for your super kind words. I feel like I'm at the end of my rope and your encouragement really helps! I'm waiting for my scleral lens to come in, I was fitted with the mini ones as the bigger ones were pretty painful. We'll see, the felt comfortable for the 10 minutes I had them on but am curious to see how they feel long term. I'm just so skeptical since nothing has provided long term relief. What has brought you the biggest relief?

I called 7eye and sure enough my local Harley store carries them. I will head there today to see if anything fits. Will this help with the pain I feel when driving?

My dr. says my eyes aren't really dry so he thinks it's a neuropathy issue. I've tried gabapentin, omega's, evoxac, lotemax, serum drops, acupuncture, chinese herbs and just about every otc drops, gels etc over the past 9 months. Argh, where's my magic bullet??? My 2 small children are sick of their mommy lying on the couch with ice on my eyes. I've not had lasiks this was brought on by over use of contact lens I guess?

I really appreciate any advice, words of wisdom etc. This website is a blessing, I just wish I could be on the computer longer than 2 minutes to read all the helpful info on the site.

[spmcc]

I called 7eye and sure enough my local Harley store carries them. I will head there today to see if anything fits. Will this help with the pain I feel when driving?

I wear my moisture chambers all day (and cover my eyes at night). I have found them to be #1 at reducing pain at all times (driving, in front of the computer, watching TV, walking outside, in stores, etc.).

I believe that moisture chambers can help every type of dry eye. Some people even wear them with their sclerals (see SAAG's and Shanku's posts).

Please see Rebecca's guide to moisture chambers here: guide.

Good luck.

[Martz22]

Looks like you've tried alot of things. Why don't you wear them with your Scleral lens? My eyes aren't horribly dry but I'm sensitive to any air movement epsecially when I'm in the car and going into stores kills me!

[spmcc]

Looks like you've tried alot of things. Why don't you wear them with your Scleral lens? My eyes aren't horribly dry but I'm sensitive to any air movement epsecially when I'm in the car and going into stores kills me!

I travelled to Texas, went through the fitting process and got sclerals in 2009, but I couldn't tolerate them and didn't wear them beyond a few days after I got home. My ophthalmologist said my corneas were dry under the lenses.

In addition, my eye problems are from rosacea, and putting in and taking out sclerals just annoyed my skin more.

Since then I've had all my puncta sealed and I wear moisture chambers 24/7.

We sound similar - air is my enemy. Even walking across a room and having still air hit my eyes hurts. So I protect my eyes at all times by wearing moisture chambers.

Having said all that, I don't know why your eyes would be so sensitive if they weren't dry. I see you wrote something about neuropathy. Do you have a good doctor helping you with that? I'm assuming your sclerals aren't from Boston Foundation for Sight, but perhaps a visit to see Dr. Rosenthal in Boston is an option for you? I understand he's the guru... and he's one of the doctors trying LDN drops.

[Guest]

What has brought you the biggest relief?

Moisture chamber glasses for sure - they aren't exactly the ideal look for me haha, but they sure as hell make me a lot more comfortable!

Back when I was at my worst and my eyes burned all day long, frequent trips to the bathroom sink to splash ice cold tap water over my cold lids helped a ton. Plus, cool compresses when I could fit them in. But with pre-schoolers at home, the cold water splash breaks were easy to fit in, even every 15 minutes sometimes.

I think the only thing that allowed me to claw my way out of that awful eyes-hurt-so-much-all-the-time phase was to baby them a LOT... no TV, no computer, no reading... wear moisture chambers during all waking hours, listen to audiobooks for entertainment, not cry (crying made my eyes way worse), listen to my fave TV shows with my eyes shut, not cook on the stove (I used the slowcooker a lot during those days because there were no fumes that way) etc.

For the mental side of things, I just tried to distract myself by keeping busy with errands, walks outside with my kids, hanging out in the backyard, working out, listening with closed eyes to comedians on TV, time with friends etc. And, most importantly, do NOT allow yourself to worry about all the what-if's... put all those scary what-if's in a "locked box" and tuck it away in the back of your mind... just focus on making NOW as tolerable as possible, focus on what IS going right in your life, and your eyes will eventually improve. You'll figure out something that works eventually.

Lastly, keep in mind that sometimes a treatment will seem useless, but it may just be that your eyes are so flared up that nothing will work at that moment... maybe that treatment is worth re-visiting later once your eyes are calmed down. Or maybe that treatment is doing something, some little improvement, that along with other things you are doing will slowly add up to significant improvement over time.

[Guest]

I see you wrote something about neuropathy. Do you have a good doctor helping you with that? I'm assuming your sclerals aren't from Boston Foundation for Sight, but perhaps a visit to see Dr. Rosenthal in Boston is an option for you? I understand he's the guru... and he's one of the doctors trying LDN drops.

I highly recommend a trip to the BFS if you've exhausted all other options... Dr. Rosenthal is wonderful!

[Martz22]

SAAG- I wish I could carry you around in my back pocket during these bad times. Your so encouraging and I really appreciate you more than you can know! What glasses do you wear during the day? I'm going to buy the 7eye sunglasses but not really sure I can wear those around the house? My kids are going to freak out!

I'm working with Dr. Chamberlain at the Casey eye institute in Portland. He's been wonderfully patient and willing to try anything. It looks like he trys/trying most of the same protocols as Dr. Rosenthal.

I have been battling severe depression and anxiety because of this issue with my eyes. I've been on and off antidepressants several times but I'm going to try to stick with a low dose (5mg) and maybe it will help me cope with this a little better. The pain is literally driving me crazy and I can't find much to do to distract myself, can't watch tv, read, go outside or to stores etc.

SPMCC "If my eyes aren't really "that" dry then why the hell am I in so much pain" That's the million dollar question I'd like to find an anwer to. My guess (and my dr.) is that it's a neuropathy issue. The gabapentin does seem to help some but on really bad days nothing seems to do any good. Again NO LASIKS here! Just overuse of my contacts, ugh! Dr. Rosenthal seems great but a trip on a plane right now almost makes me sick to think about! Again, my doc seems to be doing everything that most of Dr. R's patients are doing. He did say if the scleral lens and drops (LDN and/or lacosomide) don't work then I may want to consider going to Boston. Why were your corneas dry if the "pocket" in the scleral lens was filled with liquid? Very odd.

Thanks so much for all your help, I've spent the last couple of months scouring this website for answers and finally got the courage to post something....SO glad I did!! Any advice on daywear non sunglasses would be helpful.

[spmcc]

Wearing moisture chambers isn't fun. I curse them every day! However, when you're in pain, you bite the bullet because they work. You really should try them (and as others have recommended, avoid mirrors until you get used to them). And if 7Eyes or Wileys are too expensive, there are less expensive dustbusters or onion goggles (see Rebecca's guide). You really need to have sunglasses for daytime/outdoors and clear lenses for inside/evening/nighttime. I also need correction so I have pairs of Wileys with prescriptions for reading and driving (in clear and sunglass).

I understand what you mean about "how can I have this pain if my eyes aren't dry". I agree! Have you been told your Schrimer's scores or TBUTs? Have you tried plugs? I guess what I'm asking is if your doctor has really checked all the possibilities wrt the ocular surface. I know the tests are NOT completely accurate, but they give you information. On the other hand, it doesn't really matter what any test shows. You need to treat the symptoms (pain). And it sounds like your doctor isn't dismissing you. That's excellent.

[Martz22]

I've had all 4 plugs in place for quite some time. Schrimer's was good and not sure what TBUT's are but if it's the breakup he said there is minimal breakup. No staining and he says the cornea looks healthy which is good but frustrating. He's not dismissive at all, which is such a blessing, he knows what I'm feeling is real. I've been to see him 10 times over nine months and I do feel that he is trying everything, even Evoxac!

Thanks for your feedback!

[Guest]

SAAG- What glasses do you wear during the day? I'm going to buy the 7eye sunglasses but not really sure I can wear those around the house? My kids are going to freak out!

Airage by Wiley X, with the clear lenses... my kids are used to them, so as far as they're concerned, wearing these freaky things is normal... And of course you can wear them around the house - "not being sure" you can wear them is all in your mind... you know deep down that yes you sure as heck can wear them. I cried when I took them out of the package that first time, but they make a huge difference in comfort, and as long as I don't look at myself in the mirror, I can delude myself that I'm still the old me lol

I'm working with Dr. Chamberlain at the Casey eye institute in Portland. He's been wonderfully patient and willing to try anything. It looks like he trys/trying most of the same protocols as Dr. Rosenthal.

Sounds like you're in good hands then! Keep at it!

The pain is literally driving me crazy and I can't find much to do to distract myself, can't watch tv, read, go outside or to stores etc.

Well, here's the thing... as my husband once said to me, if your eyes will hurt no matter what you do, then you might as well go out. At least that way there is a chance you'll enjoy a few blessed moments of being distracted from it. Now if your pain is truly so crippling that you honest-to-goodness cannot physically make it out of your house, then forgive me for suggesting that you try anyways!