Need Support! New to this and feeling desperate :(

[evielady11]

Hello everyone. I don't want to come across as whiny or anything, I'm just so confused and uncomfortable and this discomfort of dry eyes has interrupted my life so significantly . I have worn contacts for 26 years, but NEVER abused or slept in them, I would disinfect every single night and wear them for about 15 hours a day with no problems. I have two children and just turned 40 years old in July. My eye problems started two months ago when my contacts started feeling uncofortable and my right eye started to tear constantly. I had been given Zanax .5mg for three months twice a day at first then once a day for the last two months. As soon as I googled and saw that Zanax gave people dry eyes I spoke to doc and we suspended it, that was three weeks ago. I was also on a med. called Nexium 40mg twice a day for what they call (silent reflux) and zantac at night, upon googling it, I also read this medication can cause dry eye also, so i've stopped it as well.this was only two days ago. anyway, since the uncofortable feeling started, I have visited 6 doctors and have yet to know what my true problem is. The first three didn't even diagnose me with dry eyes at all!! I've been given allergy drops, steroid drops, and OTC Refresh drops which upon administering gave me a bad reaction (red eyes and saw cloudy for like 15 minutes) Finally one of them said .."yup you have dry eyes, left the room and came back in with a pair of tweezers and was coming towards my eye with something that to me looked like a little splinter, I was like "what is that"??? then he explained they were plugs...I was leaving the next day to a trip outside the country and I panicked and said I'd rather not something in my eye if I wasn't here to call him with any complications. The plugs sounds so disturbing to me. His plan was restasis, and plugs...but I've been reading restasis does not work with plugs?? the last doc I saw gave me restasis and lotemax. I was so desperate and uncomfortable that I tried it on a friday (that was two weeks ago) My eyes burned all day at work, it was unbearable!! By the time the evening came they were red and painful. I called the office that evening to be told there is NEVER any doctor on call on the weekends. The redness eventually went away in about two hours, but I was scared to continue treatment for the weekend. The following work week was an important one and I work on computer all day long ...we were introducing a new database and I could NOT have my eyes burning all day, so I did not continue the Restasis. This brings me to this week. Over that same weekend, I found a Dry Eye Clinic website near me that mentioned Lipiflow. Now I know that it's not the end all be all of treatment and solution because I have yet to know what my real problem is. I made an appt for this Friday 10/4 and they are going to do the Lipiflow evaluation which is costing me $50.00 (not covered by insurance) I'm hoping that at least I can get answers as to what my problem is and that way the doctor will know the best line of treatment for me. I am still willing to try Restasis but I can't see myself coming to work with burning eyes like that or getting worse than I'm currently feeling. The doc that prescribed it had a good game plan using lotemax before Restasis and told me to refrigerate it to minimize the burning, but I'm not sure it's normal to feel the burning all day like I did! Sometimes when I get tired of my bulky glasses, I throw on the contacts for like 2 hours or 3 and at least it feels like I could walk around and the wind doesn't bother me...the ONLY thing I've been using is Systan perservative free artificial tears, about four times a day at this point and sometimes I feel like they don't help at all. I just hope I get some answers this Friday. I also visited my general practice doc and she sent me for extensive bloodwork to test for everything she could think of that could be causing this symptom. Just need some support, my family keeps saying .."just go on with your life and don't give this power, don't feed into it, and you'll get better" they want to go apple picking and they dont' understand that even the wind from walking stings and makes my eyes feel terrible. Thanks for any advice and for your support in advance. I am faithful that this will get better. I'm close to even asking the doctor for a month of from work, as being on the computer is causing me to feel 10 times worse and this is what I do all day! I'm not even sure he will do this for me. Thanks everyone!

[NotADryEye]

1.Contacts can contribute to aqueous dry eye because they interrupt the blink feedback loop that tells the lacrimal gland to produce tears.

2.You are 40. As we age and approach menopause, we are more prone to aqueous dry eye. This is because testosterone level drops and the ratio of estrogen to testosterone is changed. Testosterone is an important component of the blink feedback loop.

3. Xanax, nexium and other drugs do contribute to aqueous deficiency. It is good that you have stopped these.

4. There are other ways besides nexium and zantac to control acid reflux. These include consuming some acid e.g. 2 tsp organic apple cider vinegar in warm water before meals, because frequently with acid reflux the problem is not too much acid, it is not enough acid. Alternatively you can get pills that contain HCL at health food stores or on line. There is a way to test to see how much HCL you should take that is relatively easy. Also, sleep with your head elevated. Get bed lifts, available at Bed Bath and Beyond or elsewhere. Do not nap or sleep for a few hours after meals.

5. A doctor approaching you with tweezers and plugs has probably diagnosed aqueous tear deficiency. Did anyone do a Schirmer’s test where they put little strips of paper in your eyes to see how many tears you produce and how wet your eyes are? Plugs and cautery are common treatments for aqueous tear deficiency.

6. My recommendation, after having reactions like you to every imagineable drop including preservative free OTC’s, Restasis (which caused extreme pain in addition to burning) and the like, is to not put anything in your eyes that causes burning or discomfort. You have allergies or sensitivities to the components in the drops and should avoid them. If you really need a drop, try putting it in one eye only and see how you react, that way both eyes won’t burn. You can also try closing your eyes for 5 minutes after putting in a drop. That can help with the burning but you cannot blink. You have to keep your eyes closed.

7. Protect your eyes. Don’t go into the wind without good wrap around glasses or moisture chamber goggles.

8. Lotemax is a steroid for inflammation. Have you been diagnosed with MGD, meibomian gland dysfunction?

9. If you have MGD in addition to aqueous tear deficiency you will need to proceed carefully with treatments like Lipiflow. It can help but you want to make sure that your meibomian glands are not blocked first. Also, Lipiflow will not improve aqueous tear deficiency.

10. Tell us where you are located. There may be a doctor in the area that someone can recommend. It is best to address the issues quickly and find effective treatments as all sorts of co-morbidities or more serious conditions can occur. Or look for a corneal specialist in your area.

11. When you are at the computer, blink a lot. A complete blink is very important.

12. Have you been tested for any autoimmune conditions like Sjogren’s syndrome or Hashimoto’s hypothyroid?

13. When you get the results from your PCP, ask for a copy. It is important to keep track of and know the numbers in all of the tests, bloodwork, etc. Don’t leave the office without a copy.

14. I am sure that I have missed something. Ask as many questions as you like. We are all here to help.

15. Do not lose hope. Many of us have been in very bad shape and have made excellent progress. There are treatments out there and very good doctors. You just need to find the right combination.

[evielady11]

Thank you so much for your response!! I reallly appreciate you taking the time to read and respond in such detail. I'm wondering if my hormones could be tested to see if there is indeed a testosterone inbalance and treat it to stop this from getting worse? MY PCP sent me for so much blood work and she is testing for Sjorgren's and thyroid issues as well. About a year and a half ago she mentioned my thyroid antibodies where a little bit elevated and she mentioned Hashimoto's but she didn't seem concerned at the time. My latest routine blood work done in ER shows a "normal" range, TSH: .818..?? then again, maybe it's not Normal for me. She retested it again with another lab along with everything else this time. I just want a reason, or some answers so I know how to proceed. I haven't gotten results yet. Unfortunately I have NOT found a good specialist yet . I'm located in Northern New Jersey. If he performs lasik, cateract surgery etc, does that make him a corneal specialist? When I went to that Dr. that wanted to put in plugs, i thought i was going to meet with the corneal specialist who performs the surgeries etc, instead I met with this Doc. which is listed as DO..not sure what that means. I am assuming the Lipiflow evaluation (Lipiview) will tell the Dr. with certaintly what the root of my problem is and if my glands are clogged? I mean not if it's hormonal or autoimmune but at least if my problem is aqueous dry eye or MGD in addition to it. No, I have not been diagnosed with anything specific nor has any one of the six doctors tested my tear production with the little papers you mention, I have no idea why! I'm afraid of plugs but I wonder if people have had good results with it..I guess I should try them first. thank you for giving me hope. As far as the acid reflux, can my regular PCP test to see how much HCL I should take? I will definately try the organic apple cider vinegar thank you! THANK YOU again for responding!! Sorry to sound like I'm complaining, but what a mission this has become! I feel like it's turned into a Part time job visiting different doctors almost every week at this point. Hopefully I'll find a good one soon who will guide me in the right direction.

[NotADryEye]

1. Your story sounds so familiar. Running from one doctor to another. I have probably seen over 2 dozen. Only one has helped. I live in Florida and see Dr. Steven ******. I am very lucky to live only a little over an hour away from his office as he is a bonafide dry eye specialist. Maybe someone will recommend a corneal specialist in NJ.

2. Doctors who perform Lasik… there are many people on DEZ who have Lasik-induced dry eye. They suffer terribly. It is difficult to imagine going for dry eye treatment to someone who induces dry eye, at least for me. My dry eye is not Lasik induced, as it appears yours is not either. There’s no other way to say it. Find someone else. One of the dozens of doctors I saw eventually opened his own Lasik office. I laugh whenever I see his TV commercial. I wish I could help those people. What is the statistic… something like 20% of people who get Lasik have serious problems?

3. DO’s are doctors of osteopathy. They can also perform manipulation and sometimes take a more wholistic approach to treatments.

4. Yes, your hormones can be tested. There are blood tests and saliva tests. Ask your PCP. Sounds like you might have a good one.

5. Elevated antibodies TPO are an indication of Hashimoto’s, a cause of dry eye. Great that you are being retested. If you are, the sooner you start treating it the better. If you need treatment I’d recommend Synthroid , not the generic version as the generic dose can fluctuate 15% and then, as my PCP says, you are always chasing a number. But let’s wait till you get your results. Should be soon, yes?

6. Lipiview is probably not as effective as a very good visual evaluation at the slit lamp for mgd. Also, with mgd, the key is how you feel, not what number you have. In fact, it is really all about how much comfort you have. Without comfort, what does it matter?

7. have been wondering why there is such a proliferation of Lipiflow providers suddenly and it occurred to me that medical device makers will be charged an extra tax beginning in 2014 as part of the health care law. No wonder there seems to be such a push for providers to buy the equipment now. Should have thought of that sooner….

8. Make sure you are drinking if organic apple cider vinegar. Bragg’s is a good brand. But don’t take it if you have an ulcer. I suspect you don’t, is that right?

9. HCL, betaine.. the test is that you start with a low dose and eat a large portion of protein. You continue to increase the dose until you start to feel burning in your stomach. Then you decrease the dose. You can research this online. I was never able to find a dose low enough and so decided to stick with the apple cider vinegar which has been easy and inexpensive.

10. Lots of posts on DEZ re: plugs. I don’t have them and was never able to tolerate them even for a few moments. But others do fine with them. If you end up needing thermal cautery of the puncta for aqueous deficiency, opt for the kind that is reversible in the office first. You may eventually begin to produce more tears and then it is easy to reopen them. Dr. ****** did this to my upper puncta, both eyes, with no issues.

11. It’s hard to say why doctors tell us Dry eye and not specifically what is going on. No matter who you see next, ask them to be very specific in their diagnosis.

12. You aren’t complaining. Dry eye is not well understood by most ophthalmologist. You are seeking help. Dry eye is a multi-factorial disease that can attack or effect many parts of the eye. Each of the diseases needs to be treated in order for comfort to be restored. Unfortunately, most doctors treat only some of the co-morbidities associated with dry eye or give us eye drops and lid wipes and then tell us that we will learn to live with the condition.

13. Drink plenty of water.

[lizlou29]

Hi evielady

I think we all fully understand your frustration. I'm still going through the process of having blood tests for everything, it would be nice to think something can be found that could be treated and help my eyes. Annoyingly I have to push my GP (similar to a PCP in the US I guess) to order blood tests and she won't just test for everything in one go so I think it's great that your PCP is checking everything out.

I just wanted to second what NotADryEye said about Lipiflow. From personal experience and from what others have said on the forum I believe that for mild to moderate dry eye caused by MGD it can be great but when there is an aqueous deficiency component the results may not be what you hope for especially with the cost involved. My current consultant (by far the best I've seen) said he hadn't seen any promising results from it and it will be usurped by something superior in the next few years. My Lipiview numbers increased a lot by my 1 month check up but I felt no better, in fact my eyes are worse now but I won't put that down to Lipiflow.

I work with computers so I know how you feel on that front, I (just about) cope by lowering my monitor, having a blink reminder pop up and always having a glass of water on my desk to keep hydrated.

Wishing you lots of luck and hope your eyes feel better soon. You've come to the right place here, a very supportive community that we all wish we weren't part of!

[ebel]

Unfortunately, most doctors treat only some of the co-morbidities associated with dry eye or give us eye drops and lid wipes and then tell us that we will learn to live with the condition.

Few words
Accurate description...

[lizlou29]

...had a few of those. They are the ones to move on quickly from. It's a relief when you finally find a doctor who knows what he/she is doing and has compassion. It may take a while to find them but it's worth it even if they can't magic the condition away (dammit).

[NotADryEye]

From personal experience and from what others have said on the forum I believe that for mild to moderate dry eye caused by MGD it (Lipiflow) can be great but when there is an aqueous deficiency component the results may not be what you hope for especially with the cost involved.

Note: it isn't necessarily the degree of dry eye or MGD someone has that may suggest the use of Lipiflow i.e. mild or moderate or severe, but rather whether that individuals MGs are obstructed or constricted. When there is obstruction or constriction, Lipiflow may not only not help but worse, it may cause further damage.

[lizlou29]

I guess I'm just going from my own experience, what I've heard from others and my consultant's observations. I would never want to dissuade someone from it it if it may help but all my MG's were functioning but only producing poor quality meibum and it didn't help me one bit. We are all different though, but I think there are sadly a lot of clinics offering it knowing they are overselling it when for a lot of people it barely helps if at all. I would like to see the Lipiview technology offered at all eye clinics independent of Lipiflow.

[NotADryEye]

I guess I'm just going from my own experience, what I've heard from others and my consultant's observations. I would never want to dissuade someone from it it if it may help but all my MG's were functioning but only producing poor quality meibum and it didn't help me one bit. We are all different though, but I think there are sadly a lot of clinics offering it knowing they are overselling it when for a lot of people it barely helps if at all. I would like to see the Lipiview technology offered at all eye clinics independent of Lipiflow.

It makes sense that if your mg's were functioning but only producing poor quality meibum that Lipiflow wouldn't help. Meibum is produced when the cells lining the inner wall of the glands break down and turn into oil. Consequently, heating and massaging the mg's once would not have much of an impact on the quality because it takes some time for the cells to go through their life cycle.

[lizlou29]

It makes sense that if your mg's were functioning but only producing poor quality meibum that Lipiflow wouldn't help. Meibum is produced when the cells lining the inner wall of the glands break down and turn into oil. Consequently, heating and massaging the mg's once would not have much of an impact on the quality because it takes some time for the cells to go through their life cycle.

I thought meibum was oil. In that case I meant oil so theoretically it should have helped me!

[Rebecca Petris]

Note: it isn't necessarily the degree of dry eye or MGD someone has that may suggest the use of Lipiflow i.e. mild or moderate or severe, but rather whether that individuals MGs are obstructed or constricted. When there is obstruction or constriction, Lipiflow may not only not help but worse, it may cause further damage.

What's your source for that statement?

[NotADryEye]

What's your source for that statement?

The source is based on how Lipiflow describes itself, patient comments, an understanding of lid and mg anatomy and my own personal experience.

Lipiflow is designed to liquefy the contents of the meibomian glands and then through massage express that material. That is how the procedure is described by Lipiflow. Consequently if there is thick meibum that acts as a sludge or cell material that can be liquefied through heating, Lipiflow should help as long as there is a channel of outflow for the liquefied material. The thick meibum is heated, the sludge liquefies and the meibum flows out as long as the mg orifice is open. I believe this is an accurate description of the Lipiflow procedure.

But Lipiflow cannot, does not and should not liquefy tissues, otherwise damage would occur to the lids and the glands. Consequently if there is blockage or constriction due to fibrosis Lipiflow should be avoided. I do not believe that Lipiflow could or should or would like to claim that it liquefies tissue.

In my case I had fibrosis. There was fibrotic tissue blocking the orifices of more than 90 percent of my glands. After manual compresses and massage, for only a short time, 1 week and no more than bid, I found myself in such a state that I was not able to open my eyes. Instead of expressing the warmed meibum, because my glands were constricted and blocked, I had pushed the meibum further back into the glands and further away from the orifices. If the meibum had ruptured through the back of the gland there would be chalazions. I was lucky. There were no ruptures.

This happened to me because fibrotic tissue can obstruct and constrict the glands and this tissue cannot be liquefied. Any warm compress, massage or expression, when there is constriction or obstruction can make things much worse. This is true of all sebaceous glands. Dermatologists warn against squeezing blemishes for this reason. The sebaceous glands become more inflamed and scarred when they are squeezed and heated.

Incidentally, in any degree of dry eye/mgd, mild, moderate or severe, obstruction/constriction may be present.

Rebecca, just wondering, do you have MGD?

[Rebecca Petris]

When I asked what your source was for the statement, in case I was not clear, I meant a medical source.

I want to be clear that this forum is a place for people to share experiences, support, opinions, practical advice on coping with dry eye (this, most of all) and, of course, medical information - keeping in mind that while we all need medical information, it's not the core purpose of the forum. But there is a line that must not be crossed. It's not necessarily a line that is easy to define or articulate, yet I, and moderators, and of course many readers know when it's being crossed. Giving people medical advice here & making broad general claims about treatments is just not acceptable, period. We have to use good judgment and when good judgment both in what we're presenting and how we're presenting it and when good judgment is not consistently being used, no matter how good one's intentions are, I'm going to step in and put a stop to it whether I raise hackles or not, so please be mindful of this in future posts.

[Almondiyz]

Note: it isn't necessarily the degree of dry eye or MGD someone has that may suggest the use of Lipiflow i.e. mild or moderate or severe, but rather whether that individuals MGs are obstructed or constricted. When there is obstruction or constriction, Lipiflow may not only not help but worse, it may cause further damage.

Please explain how Lipiflow may make MGD worse or cause further damage. I'm getting so desperate, seriously thinking about Lipiflow. I really hate how procedures that are not covered by health insurance are done without hesitation. Yet, where I live, no one does probing. Thanks