Tips for users with limited medical resources?

[Rebecca Petris]

I was pondering today the number of times I've had emails or seen posts here from folks who due to for example remote location, countries with limited medical resources, severely constrained finances/lack of insurance etc who are trying to figure out what to do about their eyes. I thought it might be helpful to try to collect in a single thread some of our favorite tips for them. Obviously when there's no specific diagnosis, the possibilities are endless and we don't want to give them 'medical advice' or jump to any conclusions about what's wrong and what therefore might help. But... there's tips that apply more broadly, about living with it and about trying to get better help.

Ideas might include:

• Best tips on how to keep dry eye pain under control - in ways that aren't diagnosis specific (for example cold compresses, moisture goggles/glasses, etc)
• Suggestions for the best way to make use of doctors who are not specialists and are unlikely to know much of anything useful about dry eye (questions to ask to extract as much info as possible, etc)
• Other?

[Minni]

My experience flies in the face of many who've posted here.

For example, they speak of avoiding caffeine & carbs.

Whereas I've found those to be anti-inflammatory, acting as natural vasoconstrictor & calmer in conjunction with lysine such as low-fat dairy and fresh-eggs.

On the contrary:
High-sodium, spices, nuts and citric-acid (and high-arginine-products found alot in healthfood stores) tends to cause way more inflammations to my reactive, autoimmune, body.

Also, whereas many people here seem to find Theratears good, I find it actually tires my eyes, causing a heaviness AND DRYNESS. Same for many Allergen drops
(exception is Refresh-Plus which are great IF ONLY the vials wouldn't be so user-unfriendly.
By comparison Systane-Ultra has very user-friendly vials.

So to anyone like myself with very-sensitive eyes, and borderline-dry eyes, here's what I like:

(1) Refresh Plus preserv.free(except for their user-unfriendly vials)
(2) Systane Ultra preserv.free
(3) Similisan for Dry Eye (except for their user-unfriendly bottles)
(4) Genteal Gel - with a Red-Bar which states SEVERE DRY RELIEF - PRESERV.FREE

I'd probably benefit from FreshKote if I could get it prescribed.
Yeah, like "magic genie - where are you?

OTHER-THAN-EYEDROPS:

(1) Occasional moderate coffee-drinking (including honey, molasses, & lotsa milk to mitigate heart/heartburn)
.....this helps for sensitive red eyes and for headache,
.........but requires occasional heartburn relief tactics (also brings on esophagitis & heart/ankle constriction)

(2) To combat forced-air-heat I Place G-Midifier in SMALL computer room DIRECTLY-NEAR forced-air-vent. Its also helpful to simultaneously smear either VapoRub, or White-Tiger-Balm, or tiny bit peppermint-oil on temples, such that soon thereafter I feel a "cooling-refreshing sensation" in eyes. You can try other spots on skin as well. If your skin is ULTRA sensitive, then this tactic may be a bad idea.
What's BAD for ultrasensitive eyes like mine - Rohto-Hydra.
At least it was bad for me, not sure about other sensitives.

(3) I have found that Nordykes WoundHoney rubbed into eyelids, do no harm, and hey, may actually help eventually. Who knows...If lids get heavy from the honey, it helps to rub in a bit of water then patting with towel.
I have even tried applying a tiny-bit Aveeno anti-itch-lotion after rubbing in the Nordykes.
...but I'm scared to advise the Aveeno to the general public. Just saying what I've tried, not to copy me.

(4) The best foods which are healing to me are calming foods such as yogurts & yellow-oils (yes, including flax-oil, but not necessarily coconut oil). Also wonderful are good-quality cherry-berry-elderberry teas & drinks (but not necessarily acidic cranberry which can sometimes irritate & bring on headaches). Also earth-foods such as sweet-potato, greens, etc. Anything with RAW onions/garlic are BAD for me, but if well-cooked or sauteed, they're OK, especially when mixed with earthy-calming foods such as grains & starches.

Naturally I've tried other stuff - alternating wet-heat with wet-cool sequentially, and so on & so forth.

Not everyone has tried everything, as some of us have so many accompanying issues that we just can't. And we grow psychically weary of all the futile efforts, dealing with callous doctors, as well as weary of online-others who tend to jump to conclusions without knowing fully quite where any particular person is at in his/her life. Such as background, societal/family obligations, luck, physical-environment.
Its endless.

[DryInDenver]

My thoughts below pertain to dry eye sufferers with a limited budget. Given that I don’t think Bill Gates or Mark Zuckerberg are lurking on this website, my guess is that all of us here have a limit to our budget. Clearly some budgets are larger than others, but working within a budget is something almost all of us deal with so I think it is very useful to spend some time thinking how best to allocate your financial resources. Accordingly, this advice applies to most of us, not just those with very limited budgets.

The onset of severe dry eyes usually throws a person’s life into disarray. It hits us with pain, social anxiety, depression, fears about abilities to work, fear of never getting better, concerns for the burden on friends and family, etc. etc. etc. For many of us including myself, the mindset regarding treatments during this initial phase is one of desperation to try anything and everything. At this point however, it is a good idea to take a step back and consider your budget and weigh it against the treatments out there (many of which can be found by surfing the DEZ).

First, make a list of potential treatments. For each treatment make a list, either mentally or on paper, including the following
• Cost – This may take some extensive research. Which providers can you get it from? What are their costs? Treatment costs can vary significantly from provider to provider, insurance plan to insurance plan, and region to region. Will travel costs be incurred? Is it a one-time cost? If it works, will it be a reoccurring cost and how often?
• Probability of improvement - One of the hardest things to determine is YOUR probability of improvement from any treatment option but it’s certainly important in figuring out which order to prioritize them. For instance, in my case I didn’t think lipiflow would help much because doctors were able to express oil from my glands by squeezing my lids with tweezers. It seemed to me most people that benefit from lipiflow had bigger oil problems such as “toothpaste” coming out of their glands. So lipiflow went to the end of my priority list. I had read a few good results from serum drops and gave those a try, but they didn’t provide me with much relief (nor did restasis, fish oil, doxy, FML). Getting the data required to do a personal assessment of what will and won’t work is difficult to say the least. One method I used was that when I found a user on DEZ that had similar symptoms to me, I’d read through their past forum posts to get a feel for what they tried and how it worked. This is easy to do by clicking on their name at top of one of their posts and selecting “view forum posts” from the menu that appears. This list could also include specialists or doctors that you think might be able to help.
• Risks of treatment – This is a very important consideration and sometimes easy to overlook. Unfortunately, as with figuring out your probability of improvement this can also be difficult to accurately ascertain. But it is worth trying because every option out there to treat your eyes come with risks. For instance I always looked at plugs as a somewhat benign thing but a few months ago I recall reading that Rebecca had an infection that was due to a complication from some old plugs. I don’t think infections such as hers are common, but it’s something I seriously considered when my plugs fell out. I didn’t notice a great difference, so I don’t think I’m going to put them back in necessarily. Why take the risk for such little (if any) gain? Additionally, I’ve read about some users on this site getting infections from using serum drops (because the serum is fertile ground for bacteria to grow). Any time you put something in and out of your eye there are risks. Another example is that I use scleral lenses and I think the risks are probably pretty low with sclerals, but there is certainly still some risk. One user on this site said she developed pannus (blood vessels growing over the cornea) from a poor fitting scleral lens she got in Europe many years ago. I'm pretty sure the risks of that with some of the custom lenses are much lower than her European lenses but it's tough to know for sure. I don’t want scare anyone with these stories, but with anxiety in check, I think it is worthwhile to consider the risk of each treatment option we use or may use.
• Difficulty to obtain – Figure out which treatments are feasible for you to get. Is travel involved? Do you have to take time off work or school? Is it offered locally? Do you need to wait a certain amount of time so you can save up the money required to try it? Etc. I guess it is somewhat obvious, but availability can make a big determinant in what you will try, or at least when you will try it.
• Other considerations - Can it be done in conjunction with other treatments you want to try? How long does it take to work? For instance Restasis takes 3-6 months before you can expect to see results. Do you want to try things one at a time to try and have a better idea of whether or not any one thing is helping? Would you rather try as much as you can for relief and then stop things one at a time to figure out what you can stop and what you should keep doing?

Second, once you have your list figure out how big your budget should be. What are your resources? How severe is your pain and accordingly what would you consider cutting out so you can add to your eye budget? Should you cancel your cable at $100/month since it hurts to watch anyway? Do you have a car payment that could be decreased by trading down for a more economical car? Likewise, should you consider a smaller and cheaper apartment that is easier for your humidifier to keep humid? Significant relief from dry eye symptoms is often elusive and can take a long time to find, but if it’s found, it provides much more comfort than the finest luxury car and the poshest living quarters. Can you get creative? Should you consider running your own fundraiser such as a gofundyourself campaign?

Third, combine all the information above to prioritize the list of treatments you want to try. After weighing the pros and cons of each option available to you, I think you can make a list what you want to try and when you want to try it. If you have a doctor (or doctors) whose advice you value, consider going over your plan with them to get a second opinion.

Fourth, revisit this whole process periodically as your symptoms, available treatments, and your budget will likely be a constantly evolving adventure.

The framework above is my advice for putting some structure and organization towards the budgeting process that we all must do. I think this process can be helpful to maximize the potential benefits that any of us can achieve from our individualized financial situation. I know it’s not the perfect process but do think it is helpful to think about and would be interested in hearing any other recommendations and improvements.

[cathy8889]

Hi Rebecca,

These things are quite specific to my case but here is what has helped me:

- not doing hot compresses, steaming eyes is much better for me, direct heat aggravated lids
- not letting anything hot near my eyes, for example when I am in the shower I do not wash my face with hot water, I used to let the water run over my eyes on the advice of ophthalmologists but soon realised that it sparks flare ups
- using Superdrug tea tree wipes (http://www.superdrug.com/Superdrug/S...7#.VMvRUy653k1), they have been a god send, I have been using them for three months and they have helped me so much, I have never used Cliradex but I can imagine them being very similar
-applying coconut oil at night
-I have demodex so I change pillow cases every night, wash hair in tea tree shampoo, use tea tree body wash, wash covers and pillows on a long hot wash
- I use kitchen roll to dry my face (never use a towel anymore)
- tie hair back for bed each night

I have posterior blepharitis/MGD which I believe has been caused by sebhorreic which led to bacterial and demodex, lots of stress I believe allowed them to take over. Finding the cause of your condition is so important. You have to be your own detective as no opthalmologist I have learnt will figure it out for you, they dont have the time or seem to want to try and build a profile of you and how youve got where you are. Think about everything, I didnt know I had demodex but I thought I would treat myself as though I did have them. Finally I found an optician who knew his stuff and he saw demodex in my lashes, 3 ophthalmologists had missed them.

When you have an appointment with an ophthalmologist make sure you ask about demodex, as I think it is underrecognised as a cause of dry eye

Cath xx

[Minni]

I have posterior blepharitis/MGD which I believe has been caused by sebhorreic which led to bacterial and demodex, lots of stress I believe allowed them to take over. Finding the cause of your condition is so important. You have to be your own detective as no opthalmologist I have learnt will figure it out for you, they dont have the time or seem to want to try and build a profile of you and how youve got where you are. Think about everything, I didnt know I had demodex but I thought I would treat myself as though I did have them. Finally I found an optician who knew his stuff and he saw demodex in my lashes, 3 ophthalmologists had missed them.

When you have an appointment with an ophthalmologist make sure you ask about demodex, as I think it is underrecognised as a cause of dry eye

Cath xx

I recently noted that Canker-X (by G.U.M.) contains BAK.
BAK has helped some people's Blepharitis.
So maybe Canker-X is less extreme than Wet-Ones?
Also, there's a Neosporin anti-eczema product which people also rave.
..the latter also contains BAK.

I myself have tried Canker-X on lids & it seems sorta mild, but Wound-Honey seems better.
I've never tried the Neosporin product.

I'm not really sure if I have Blepharitis or computer-radiation or auto-immune (FM) inflammation.
That's yet to be determined by an Ophtho.
I'm wondering if OPD-III is worth trying (haven't researched if it can detect mites.