need help, suggestions, anything...b/c Im running out of options/hope. :(

[chimera]

hello everyone! thanks again for your replies & especially for the support! I so need this right now, its been very helpful! but wow I am so overwhelmed by so much info! Im glad that there are other options at least but I have mo idea what to do next!

Ill try to get to some more comments today & continue tomorrow...

Faith
I have heard of lipiflow but like so many things it seems to be hit & miss, but I will ask Dr. Tseng.

yes I have tried Retasis for about 2 years until i saw Tseng, i told him I didnt notice that it did much for me & he told me to go off it. The next day i stopped, I did notice a difference for a few days(more pain & dryness) but the last couple weeks it kinda lessened & Im bck to how I am now. I have since been wondering if i should go back on again. I read so many bad things about it, maybe its not worth it. But today i started using it again b/c what the hell...though i have always used it only 2x a day. Maybe i should ask Dr Tseng if i should use it more.


alison,
omg 9 years! Im so sorry... but I can totally see myself in your place in a few years. i know i always tell myself there are worse things one could be suffering with...its so hard though. What is BCP & NAC?


katewest
the only lens thats been suggested to me is sclerals but i cant afford them. I assume that will be the same issue with most of the big name lens. And since they are a hit or miss thing i cant really risk so much money on something that isnt 100 % a sure thing.

after I do the hot compress (for about 4-8 minutes I think, I never really time myself) i take a moist q-tip & press on the margin of my lids taking turns in different areas for like 10 seconds. I have no idea if it does anything, I dont see
anything happening but Im doing it anyway. I do this 3 x a day. One of these times I dont actually use my rice baggy but instead do it after I come out of the shower since my eyes are wet & its humid I figure its a good chance to do the expressing.


soaps
I have no idea what exactly caused my DES but I have 3 factors that could have contributed:
Ive been on antidepressants since the mid 90's,
I have hypothyroidism & take levo for it,
& I would use the computer for long hours nonstop everyday without protection, basically i abused my eyes

I definitly do more than 2 min with the compress, maybe I should cut back?


32nitrox
I have seen probing on youtube. it looks...harsh. :\ but it is on my list of things to try.


rebecca,
thats interesting about pain vs mgd, i do remember that on my last visit his assistant expressed my lid & she said something like, I see the oil is starting to come out clear so the compresses seem to be working. Which I thought was odd b/c i didnt do any compress that morning b4 the appointment. But my eyes usually arent as bad early in the mornings as they are later on(my eyes feel worse as the day progresses), & it wasnt cold at the office.

so maybe thats why he dismissed me but then what am i supposed to do about the pain? The pain is my biggest issue, its what doesnt allow me to function. Arent there treatments or meds that drs can give specifically for pain?

[rppnj]

Please I need any suggestions, anything thats worked for you that I havent tried, I need more options. B/c this cant be it. thanks(for reading)...

Hi Chimera,

I was sorry to read about your dry eye problems. I know that it is very frustrating to try every remedy available without result.
I have had Blepharitis for more than 4 years and went through the same issues as you; four years, four doctors, no results. Finally, I stumbled upon NAC ( N-Acetyl Cysteine ) on the DEZ Forum.
I use Carlson Brand NAC (N-Acetyl Cysteine) in 500MG capsules. I purchase it on Amazon for $8.99 / bottle of 60. This is about half the price found at my local health food store. I take one in the morning and one in the late afternoon or early evening. Research suggests taking NAC on an empty stomach, however, it should be taken with plenty of water. Some users experience stomach upset...I have not. The capsules have a 'garlicy' aroma. This is normal. Also, the bottle should be tightly capped to keep out air and moisture. NAC has worked wonders for my Blepharitis. NAC thins the mucous throughout your body and allows a freer flow of tears. My eyes are the best they've been in more than 4 years. I'm also taking 'HA" (Hyaluronic Acid). HA helps lubricate your eyes and it's also very good for your skin. A small village in Japan has a diet that is very high in HA and they all live into their 90's and beyond and have none of the diseases associated with a western diet. Connie Chung did a documentary on this village that you can Google. It's available on Youtube. I also just underwent Lipiflow on 4/5/2013. Search 'Lipiflow' on the DEZ and you can read my report. Good luck, Chimera!

Kindest regards,
rppnj

[browneyesblu]

Hi Chimera,

I feel for you too. I am also a fan of NAC (thanks to rpnnj reporting his success I tried it). I can also tell you that when my belph flares up Lacrisert makes it worse, I guess because they sit right where the glands are, suggest you stay off those for the moment.

Also have you been tested for allergies, autoimmune conditions and hormonal imbalance? They can all be underlying causes and knowing what the cause is may help you find other treatment options.

Lastly, the other thing that is helping me is change in diet. I stopped eating all trans fat, processed carbohydrates and very acidic foods. They can all contribute to inflammation.

Don't give up, as you can see from all these posts, there are still a lot of things you can try that may help. Best of luck.

[Rebecca Petris]

Have you ever gone cold turkey on drops, just to see what happened? I'm not suggesting that you should, I'm just asking. Sometimes it can be quite revealing. On the whole pain versus disease/clinical signs topic I brought up before, it's really important to keep that distinction in mind. For example, an awful lot of people with severe MGD and the like really use artificial tears not because they need 'lubrication' per se but as a pain management tool. Not necessarily a bad thing but for some people it actually turns out to be. I know refresh plus is as bland and inoffensive as they come but yet we've had a lot of people here over the years who developed sensitivity to the polymers in it without even realizing it.

Re: stuff specifically for pain, absolutely... there are a ton of threads here on pain drugs people are using esp. those with diagnosed corneal neuralgia. There's pros & cons to that route of course. But when needs must

Tell us more about the office environment? are you a heavy computer user? Maybe something might strike a chord with someone here who has more suggestions about keeping things from escalating during the day. You just never know. For example, I had a customer for a long time who had post LASIK dry eye and his 'thing' was, extreme intolerance of colognes & other substances. He could manage at work ONLY by wearing swim goggles. No other moisture chambers, no matter how well designed or close sealed, did it for him. That's part of what I meant by sometimes the solution being a slight variation on a theme.

[soaps]

Yes two minutes twice a day WARM compress i have been told . Anda i have been advised against expressing as u use all ur oil at once instead of steady flow during day. others may disagree but my Dr is very good so i continue to follow his advice.

[peter56]

Hi Pinky,
ProKera is made and applied to treat most severe ocular damage, like chemical burns, Stevens-Johnson, non healing epithelial defects, erosios etc.
In order to restore the functioning of the corneal nerves, it takes steroids, Cyclosporine, Tacrolimus and especially Naltrexone drops-gel.
But only Steroid drops and ointment does penetrate deep into the stroma, there the nerves are.
Most active drugs - ingredients are not able penetrating the epithelial barrier and only a fraction of the medication does get into the stroma.
The other working ingredients like CsA, TAC and Naltrexone have to be placed into special carrier vehicles, like liposomes, nanoemulsions etc.

[Guest]

Hi Chimera,

I wrote a long reply yesterday, but it got lost when it took too long for me to actually post it and I had to re-log in.

Sooo, here is the quick version. Dr. Latkany used to always say in the forums that you have to find the cause, and in the end, his persistence in saying that is what helped me with my own MGD. (in my case, if I simply avoid eating wheat, my MGD clears up pretty much completely)

1) If you haven't already, consider getting a referral to an allergist to be tested for allergies, both to food and environmental.
2) Consider the possibility that you may have ocular rosacea - it's possible to have this without any facial signs, and it is a potential cause of MGD. In a forum post, Dr. Latkany suggested the book "Rosacea 101" by Brady Barrows - this book helped me a TON with figuring out my rosacea trigger foods, and also accidentally is what led me to figuring out that I had an issue with wheat (I ordered it from Amazon). I don't take everything in the book as gospel, but, his dietary recommendations helped me get started in figuring out the fact that food was affecting my eyes.

I know there are a million reasons why someone will get MGD, but in case you're one of the ones for whom FOOD is an issue, it's worth investigating these possibilities.

[chimera]

okay here's the next batch of replies. Thanks again so much for all your support & help, I am learning new things I didnt know.

MLE
I would love to try Prose if its something i can afford or they could let me have a trial run. Im so glad it helped you.


peter56
yes that is the lipid ointment, comes in a small white tube, its is really expensive! I should be putting it on twice a day but sometimes only use it once b/c I want to conserve it. but maybe it will be more effective if I use it more than that. Ive also thought of buying one of the OTC drops that are supposed to help your lipid layer but Im not sure which is the best. Would need to ask/research on this site.


rppnj
I dont have Bleph but I would like to try those. I assume they are supplements?though the one that says acid rings alarms b/c I have stomach issues. iI can only handle 1 capsule of fish oil a day. I wish i could take more.


browneyesblu
I have tested for allergies and am supposedly allergy free but I keep having doubts. I wonder if allergy tests can come out not 100% accurate. i always thought I was allergic at least to dust but maybe dust bothers me b/c of my eyes being dry.


rebecca,
I wish i could quit the OTC drops but I dont think i could make it more than 1 1/2 to 2 hours without it. I mean my eyes get really bad. When i try to go for 1 1/2 hrs instead of the usual 1 hr I immediatly notice the difference, the less I rewet the more painful, sore, itchy, grainy they get. At night they will get so bad they start to stick shut! I also get horrible specs of grain? dust? mucus? some kind of tiny particle that gets stuck on the surface my cornea in the midle of the eye & its really hard to remove. Its really bothersome.
I have wondered whether Ive developed a dependance on the Refresh +. thats why i would like to cut back but I would need something else for the pain.

I really want to test for corneal neuralgia but the 2 dr.s Ive suggested it to so far dont think I have it. Im glad to read that there are separate treatments for pain. But I wish drs were more helpful & understanding about it. They seem at least in my experience more repluctant to deal with the pain itself & want to just focus on the dryness.

I have been disabled since early 2000s(for an unrelated non-eye condition) so i dont work in an office, but I had always been a heavy computer user. Im addicted to the internet. I use to log in about 8-9 hrs a day! The last 2-3 years of course I have had to cut back drastically to about 3-4 hrs a day, maybe less dependeing on my eyes. I use workrave & take 4-5 min breaks every 4-5 minutes. i always wear my googles when using the computer, also i have a glare screen on my monitor & my goggles have an anti glare filter.


SAAG
I already tested for allergies & came out negative for any but I didnt know you could have ocu rosacea without any facial signs. My face is pretty clear though i will get a lot of itching & irritation on the skin on my lids, lid margins & corners of my eyes & its really bumpy & wrinkly(Im 39) but rarely red. I always assumed that was from the constant use of drops. But wouldnt a dr. know right away that you have ocular rosacea & test for that right away if they suspect you have it?

[Guest]

SAAG
I already tested for allergies & came out negative for any but I didnt know you could have ocu rosacea without any facial signs. My face is pretty clear though i will get a lot of itching & irritation on the skin on my lids, lid margins & corners of my eyes & its really bumpy & wrinkly(Im 39) but rarely red. I always assumed that was from the constant use of drops. But wouldnt a dr. know right away that you have ocular rosacea & test for that right away if they suspect you have it?

I'd say for sure it wouldn't necessarily be obvious to a dr. if you have ocular rosacea or not. Think of how many different things can cause MGD... how many different things can cause irritation and itching... and if you don't have the classic obvious rosacea-looking face, then I bet ocular rosacea will fall off most dr's radar.

AND, there is no 100% way to know for SURE if you have ocular rosacea. There is no 100% for sure test for it. Diagnosis is based on your clinical signs and symptoms, which can overlap with a ton of other things, making it hard to know for sure. Some dr's may SAY they are sure, but you have to ask yourself how they can possibly BE sure... Honestly, the best they can do is make an educated guess (and that's not a criticism, just the reality of the situation).

Maybe your itching and irritation on your lids IS due to frequent dropping... but IF your MGD is due to ocular rosacea, then fixing that could lessen your need for drops (due to improved MG function), and THAT will improve your lids. And if your lid itching and irritation is due to rosacea, then AGAIN, fixing the ocular rosacea could fix your lids AND your MGD.

re: no redness on your lids and diagnosis issues - in my case, I DO have facial rosacea - at first they thought I had some minor irritation and they prescribed steroid creams... then when that didn't fix it permanently they thought it was an infection so gave me antibiotics... then since THAT didn't fix it they tried metronidazole gel (classic rosacea treatment) and it was a miracle cure - Ok... so then I knew I had rosacea... but notice it was by trial and error, not because it was an obvious diagnosis. For my facial symptoms, I often notice symptoms like itching or burning with NO redness. (But now I'm much better about knowing what my triggers are, so do better with avoiding this altogether!)

Anyhow, it's possible you may have this... and since you've tried so many other things, why not tick this off your list by going all out and experimenting a bit. Rosacea 101 is a great book to start out, mainly because of his elimination diet... it lays everything out for you. It's tough to do, but soooo worth it if it ends up helping you figure out what's wrong. You have nothing to lose, and everything to gain... might as well at least try it. And if it turns out that nothing in the book helps, then fine... but at least you tried...

Here's a link to the Mayo clinic's write-up on ocular rosacea - notice how the symptoms sound exactly like run-of-the-mill dry eye... (keeping in mind that you don't have to have every single symptom on the list in order to have ocular rosacea) http://www.mayoclinic.com/health/ocu...CTION=symptoms (Also notice that on the first page of their write up they mention that although rare, it CAN occur in the absence of facial symptoms)

Also, here they say, as I did, that there are no specific tests for it:

There are no specific tests or procedures for diagnosing ocular rosacea. Instead, your doctor will likely make a diagnosis by:

Reviewing your signs and symptoms
Taking your medical history
Examining your eyes and eyelids

http://www.mayoclinic.com/health/ocu...-and-diagnosis

So you see, there is plenty of room for error given that the symptoms overlap that of regular run-of-the-mill dry eye sufferers, AND there is no specific guaranteed 100% test for it.

If it turns out not to be ocular rosacea either, then on to the next theory... keep on plugging away and eventually you'll figure something out!

[Rebecca Petris]

Chimera,

3-4 hours a day on the computer is A LOT.

Have you ever gone cold turkey for a few days to observe how your eyes do? Highly recommend.

[Guest]

Chimera,

3-4 hours a day on the computer is A LOT.

Have you ever gone cold turkey for a few days to observe how your eyes do? Highly recommend.

Yes, good point! At my worst, I had to cut out the computer almost completely... I was strict about allowing myself only 15 minutes per day in TOTAL (enough to scan my e-mail, check in here at the forums, and not much else). Back then, I don't think I would have made any progress at all if I'd been using the computer any more than that.

But keep in mind, even drastically cutting back doesn't mean it's forever...

[chimera]

SAAG
thanks again, very helpful. So is ocu rosacea always triggered by an allergy to something? B/c again I already been tested for allergies & came out negative...but if not its somehting Im considering as well.


Rebecca,
actually thats wrong, Id say its more like 2-3 hours I use the computer daily. Though you could also add an extra 1-3 hrs for stuff like i-phone, television & reading & crafting which also affects me just as badly as reading on a computer screen. i did once try a "computer diet" for about a week, cutting back to 1 to 1 1/2 hrs but i think i ditdnt go about it the right way, b/c i didnt cut back on the other stuff I mentioned(tv, reading, dvd's etc.) I think i would have to do a whole cut back of everything that causes me to strain & use my eyes intensely. It would be really difficult!

and I have tis fear that it will be a week of wasted time since it wont make a difference or maybe it will but the minute I go back to my normal life my symptoms just return. Which means if i want to feel better Id have to stop doing the things i love.

[NotADryEye]

Chimera,
First, don’t give up hope. On September 1, 2011 I was where you are now. I had seen countless doctors including specialists at Bascom Palmer and Dr. Tseng (who gave me experimental tea tree oil treatment for demodex – not Cliradex, and cauterized my lower puncta). I did not get significantly better and was eventually unable to open my eyes for even a few moments. The pain was excruciating. I was using preservative free drops every 5 minutes until my eyes inflamed and I had to stop all drops. But I kept searching online for help, even though by then reading for even a moment was unbearable.

On September 2, 2011 I started seeing Dr. ****** in Tampa. At my first appointment he probed my MG’s and closed my upper puncta. The very next day I was able to open my eyes for the first time in months. It was nothing short of miraculous. He then began to treat other comorbidities: conjunctivochalasis, demodex, poor aqueous tear production, bacteria colonies, etc.

If you have conjunctivochalasis, and are symptomatic, drops and ointments will not help, and you can be in extreme pain and discomfort. I used to describe it as feeling like someone had stuffed tissues into my eyes. If you have conjuctivochalasis, you’ll need to get diagnosed first. I’m not sure why Dr. Tseng didn’t tell me I had it. I’m not sure why the doctors at Bascom Palmer called it “ocular neuropathy” and put me on Lyrica. But since I had amniotic membrane transplantation surgery in both eyes for conjunctivochalasis that horrible raw tissue feeling is completely gone.
Below are a few other thoughts:

soaps
I have no idea what exactly caused my DES but I have 3 factors that could have contributed:
Ive been on antidepressants since the mid 90's,
I have hypothyroidism & take levo for it,
& I would use the computer for long hours nonstop everyday without protection, basically i abused my eyesAntidepressents and other drugs can cause aqueous tear deficiency. [/I]

Hypothyroidism, in particular Hashimoto’s, can alter the fatty acids secreted by MG’s. I have this problem. My tear film is of poor quality and feels like I have soap in my eyes almost constantly. Getting thyroid inflammation under control, lowering the TPO number, is key. I’m working on this with a gluten free diet and avoiding all foods to which I tested positive for sensitivities. Unfortunately getting TPO down can take a long time. My doctors tell me once the autominune system is triggered thyroiditis has to run its course.

Computer work exacerbates the pain when tear film is compromised.



browneyesblu
I have tested for allergies and am supposedly allergy free but I keep having doubts. I wonder if allergy tests can come out not 100% accurate. i always thought I was allergic at least to dust but maybe dust bothers me b/c of my eyes being dry.

You probably are allergy free, but only to the things that you were tested for. What about everything else? Also, you may not have allergies but you may have sensitivities. For pollen an easy treatment is local bee pollen. You might start with half a teaspoon in the first week. If you have no adverse reactions increase to one teaspoon (assuming you have no issues with sugar, although sugar is not good for dry eye either). Place it in your mouth and chew on it, first thing in the morning, before you put anything else in your mouth. The key is getting local bee pollen. In Florida, look for the Buzznbee brand. It is available at Whole Foods.

Regarding food allergies versus sensitivities, you can get food sensitivity testing done at Any Lab Test Now http://www.anylabtestnow.com/locations/. It’s expensive but if you are suffering and can’t figure out why, this may be worth it. Once you get the test you will know what foods to avoid and for how long. You may want to get your micronutrient levels tested at the same time to see if you have any deficiencies. Again, expensive, but may be worth it. Micronutrient testing will also indicate if you are able digest sugars (fructose, sucrose, etc).

32nitrox
I have seen probing on youtube. it looks...harsh. :\ but it is on my list of things to try.

I have had probing done a few times. If your glands are plugged with fibrous tissue this is the best way to open them and you will feel immeasurably better after having it done. If you can get to Tampa, I would recommend having it done by Dr. ******. The process takes about 30 minutes. Also Dr. ****** specializes in the treatment of Dry Eye. He understands the condition, takes into account your own limitations (e.g. sensitivities) and will customize treatment for you.

Faith
I have heard of lipiflow but like so many things it seems to be hit & miss, but I will ask Dr. Tseng.

Because fibrous tissue can plug the glands, unless the MG’s are first opened Lipiflow might be ineffective or might even cause further damage. I would be cautious about Lipiflow, particularly before probing, plus given how you are describing your condition and pain.

Chimera, most importantly, don’t give up hope. There is much that can be done to help you feel much better. I was like you in August 2011, completely unable to function, even walk across the room or open a door with my eyes opened, because the wind this generated caused immense pain. My nieces and nephew were visiting (one was 11 months old) and I could not even look at her. Then I found Dr. ******. I have come a long way since then, miles and miles. Even though I am still working at it and even though I have difficulty writing even this, Dr. ****** hasn’t given up on me. He just keeps treating the different comorbidities, one after another. You might consider contacting his office, 813-875-0000.

[chimera]

NotADryEye,
thanks! your info is very helpful!

Im not really sure if I have conjunctivochalasis. I tried looking it up on wiki & google as I had no idea what it was. when i look at the area tha tI assume is my conjuctiva its very red with lots of veins. Probably since my eyes have been itching a lot these last couple days & Ive been rubbing my eyes alot, i know Im not supposed to but I cant help it, it itches so bad! I dont know if thats normal or not. I guess I'Il ask Dr Tseng when I see him again.

yes i get that soap in the eyes feeling all the time! supposedly my hypothyroidism is being kept under control with the levothyroxine Im taking but i dont know about my TPO. Id have to check the next blood test.
I was tested for a very large range of food & airborne/animal/plant triggers. I didnt know there was a difference b/w allergies & sensitivities.

would probing be a one & done deal or does one have to continue getting the procedure over & over? If its not covered by medicare/medicaid it might be out of my budget range. Id love to visit Dr ****** but again Ive heard he doesnt take insurance & he's expensive. I dont know if & when i could ever afford it so for now I think i might have to concentrate on more affordable options for me. its hard b/c theres no gaurantee that the more expensive options will really help you either. And I keep getting more criticism from family that Im spending too much money on my eyes with no positive results for anything Ive tried. Its so frustrating.

[Tanner]

Borage oil, tumeric