new to dry eye and scared

[nanship]

Hi,
I have had minor dry eye for years, since perimenopause, and just recently my eyes seem much more severely dry . I cannot wear makeup anymore, and my eyes look red and tired ; I feel ugly and scared ! My life has changed drastically . I avoid driving and shopping , even being outdoors as drops don't seem to help much with the discomfort . I am anxiety and depression ridden , and I understand that medications for those things tend to further dry out the eyes ? I was going to start bio-identical hormone therapy to help with some other symtoms , but read that hrt is a culprit in dry eye symdrome as well ?? I used to love to read, sew , cook , watch movies, but avoid those ,too (as well as computer use ) . I have tried theratears, systane free, thera-tears liquid gel , refresh tears , genteal for moderate dry eye ( I am in denial ) and would welcome any suggestions . Thanks ! and I am so glad I found this site- I feel so alone !

[bassfan]

Learn learn learn...the more you know about your condition the less you will be scared of it. Start off with this site, maybe pick up Dr Latkanys (you'll see his name on here) book...its pretty good and covers a lot. People on this site are great, you will understand a lot more shortly.

Daren

[nanship]

new and scared

Thank you ! I have been trying to educate myself , and this site is helping- just knowing that there are others who understand ! No one in my family or among my friends gets it -why I can't drive them around like I used to or shop til I drop ! To others out there - I was reading the blog about "Optive" eye drops, from last year- is there anything I should know about them before trying them out ?? What about reading ? Is there a way to get comfortable with that ? I wear prescription glasses , so the "onion goggles " won't do for me , and I dearly love to read . Are there any quilters out there ? Is there a way to do that ? Sorry for all the questions, I just need some hope , I guess .. and some tips , if possible . Do you just try to do the things you've always done with limits ? And lots of drops??

[Stanza]

Hello, my sympathy there is something about it that feels like a ball and chain and people who don't have it, just don't get it either...

As bassfan says, learning is the only comfort. As for drops just keep trying, and you should try and find a sympathetic doctor - not something I've been successful in myself but one thing I learnt on here is when you try something you have to give it a good run, i.e. if it doesn't work overnight - that's normal, you have to really try it out and keep in mind what does and doesn't work for you.

Welcome too

[Terri]

Nanship: If your dry eye started during or after perimenopause, you should search this site for posts related to DHEA drops, which you can have formulated by Leisters Pharmacy. Your dry eyes may be caused by a drop in your testosterone levels. DHEA is a precursor to testosterone and may be just what you need.

I have been on bio-identical HRT for a year now, and I really like it. However, I replace three hormones in my regime: estradiol (estrogen), progesterone and testosterone. If you just replace estrogen and not testosterone, your dry eye would probably get worse. The program I follow is designed to restore my hormone levels to what they were in my thirties.

If you do go on BHRT, you may not need the DHEA drops. I don't use them for that reason. However, if you're concerned about BHRT, you can use DHEA drops to deal with the negative impact of testosterone loss on your eyes.

[dianat]

Nanship,

I understand your discomfort and the toll it takes on your mental health. Dry eye is a maddening and handicapping condition. The good news is, though there is really not magic bullet, there is manageability. I am holding out for something to come along that will greatly improve my comfort, but for the time being I am living my life as I always did with a few exceptions.

First off, if you love reading get yourself audiobooks. I did this when I was at the height of my depression and my eye pain. It was a great way to pass the time and add some enjoyment into my life. The library is a great source. Even more convenient is www.audible.com

If you would really like to wear a goggle, I recommend Panoptx. There are a few on this site. They do make Rx goggles, but you'll have to dig into that a bit yourself. I've never needed it. www.Panoptx.com

Have you tried doing warm compresses? You can search this site for lots of theories on how to do this. Warm rice baggie in the microwave seems to be the most popular. This will assist in improving the oil output onto your eye.

It looks like you live in an arid climate. Try a humidifier by your bed and some sort of eye mask or Tranquileyes while you sleep. Your eyes need to be protected at night from opening by themselves and from the air. When I improved my nights I improved my days.

For mood, dry eye and overall health, do be sure and get your daily dose of the omega 3-6-9s. You can search what most people are doing. I take Norwegian Salmon oil when I remember.

Best of luck to you. You will find improvement with time. Don't allow your depression to get the better of you. Get good rest, be good to yourself. The depression will improve as well.

Diana

[brd888]

Drops bad

Hello.
One of the first passages in Dr Latkany's book describes how drops are ineffective - they simply don't stay on the eye surface long enough to help. It is such an obvious observation it is infrequently noted. Be aware of this and read up on the other treatments.
Regards.

[Jade9923]

Nanship,

The very FIRST thing you need to do is to get yourself to an eye doctor who specializes (or is at least interested) in dry eyes. You need to find out what is causing your dry eyes. All the drops in the world won't help you if for instance if you have MGD.

Also, you are no where near the end of the road in treating your dry eyes if you haven't tried punctal plugs. My goodness, my eyes went from total pain, unable to do all the things you can't do wanting to just live with my eyes closed to almost complete comfort once all 4 punctums were plugged.

You can keep trying eye drops but as Dr. Latkany says, you need to find the source of your dry eyes first then examine other treatments. What you are doing now is putting a bandaid on a problem that hasn't been properly diagnosed or treated.

Take action and please don't despair. You are no where near the end of the scope of relief you can get from your dry eyes.

[Jade9923]

Rebecca,

We see so many posts like Nanships. She has suffered for a long time, is clearly almost at the end of her rope having had the dry eyes change her life completely for the worse. We do her a disservice by not immediately guiding her somehow through this website to a doctor instead of encouraging self treating or offering her other eye drop suggestions after she has tried a million of them. All of the suggestions for how to accomodate your environment for dry eyes are very helpful. But I don't see much value in recommending different eye drops and such without giving her the clear message that she needs to know why she has dry eyes first.

Perhaps an automatic first message somehow to new members telling them that they haven't been doomed to a life with dry eyes just because they have them now if they have never gotten a proper diagnosis. There is so much hope if they find their way to a good doctor who will spend the time to help find them comfort.

This is the greatest site in the world. I doubt there is any better manager of any site than you Rebecca. If only I had had this site 16 years ago. Every minute of dry eye hell that can be eliminated is invaluable. Had I had this site at the beginning it would not have taken me 2 years of pain to find relief.

[bassfan]

Nanship,

The very FIRST thing you need to do is to get yourself to an eye doctor who specializes (or is at least interested) in dry eyes.

I will argue this statement somewhat. Unless you are going to see a rather proven dry eye specialist and he/she is willing to spend a lot of time with you, I don't think the first thing to do is see a doctor. From the rather lengthy list of opthamologists I've seen over the past year, I've learned that most of them are for the most part clueless when it comes to dry eye even if they tell you they see it all the time. They never learned it, its not a big money maker...and most of them don't know how to treat it.

I believe the first thing to do is to learn the basics of DES, what causes it, what types exist, tear makeup, and the treatments that are available. With that knowledge you are able to 1) realize quickly if a dr is full of it and 2) ask intelligent questions while visiting a dr. At that point, go see a doctor!

One thing I have read about on here but haven't done is getting a dr to show you a large screen view of your eye. I think that would be very cool, and quite a learning experience. In my case, my MG's are all messed up...I would really like to see what they are doing close up.

my .02

Daren

[liz56]

Hi, Nanship.

I'm really sorry that your dry-eye experiences have brought you here.

The thing that has helped me the most is what I have learned. I never really did find a dry-eye specialist to help me, though I have a caring ophthalmologist and corneal specialist advising me.

The most helpful article I have found is the following by Dr. Holly:

http://www.dry-eye-institute.org/vit...ml#Article%201

I really appreciate how he tries to sort out the causes-- ocular surface problems or tear-production problems. And, he sets out to see which is the primary and which is the secondary problem, acknowledging that one affects the other.

[dianat]

Ditto Darren.

Everything I do for my eyes has been something I've learned in a dry eye forum...not at the doctor's office. My doctor helps make some of it happen...like the serum drops...but the ideas to use them on me did not originate with him. I do like my doctor a great deal and he is necessary, but I am the one who manages my care.

D

[brd888]

This website would not exist if Ophthalmologists were, in general, educated about dry eye disease. I would bet almost everyone here other than casual observers have already seen an eye doctor. Finding an Ophthalmologist interested in dry eye is a tough search.

[Rebecca Petris]

I'm glad to see discussion of this kind. There are really important points on both sides. I feel a lecture coming on so bear with me everyone or just skip to the next post

Jade, by and large I agree with your concerns. Good diagnosis is very important; and having a good doctor on your team is very important. Many people who simply self-treat with anything and everything they find on the internet often end up doing themselves a disservice... in many ways, such as:

• They can, and frequently do, treat the wrong problem. (Often they are treating aqueous deficiency when they have MGD and/or allergies.)
• They may become so driven by treating symptoms that they fail to benefit from information they could be getting from their doctor about changes to their clinical signs. While I am always arguing for the importance of measuring symptoms, and often frustrated by the doctors who brush off patients who look OK under the slit lamp and even on Schirmer and BUT, I think that clinical signs should definitely not be ignored either. Just because they don't match symptoms doesn't mean they have no relevance.
• If the main benefit they have experienced is from things they found themselves - particularly consumer products rather than medical products - they too often dismiss their doctors as irrelevant, and if going to the doc is an uncomfortable process, they just don't bother. But a chronically dry eye is an unhealthy, vulnerable eye, and needs to be examined more frequently than a healthy eye because of its heightened susceptibility to infection and other conditions.
• Finally - and this one is a real bugbear for me: Many (not all of course) who are entirely self-managed are undisciplined and fail to employ their self-learned solutions in a manner that has any hope of yielding solid information. This sort of thing drives me nuts. Those of you at the Safety Harbor meeting might even remember my little chart with the blindly obedient patient at one end of the extreme and the compulsively self-treating patient at the other. When you're doing 12 different things, and change 3 of them and in the meantime two external factors also change, you may think you know what made the difference but the chances you're right aren't great. One thing that a good doctor partner will help with is in giving us some accountability for compliance with new treatments - not vary too many things at once, and set an appropriate length of time to try things out.

ON THE OTHER HAND:

The answer is clearly not so simple as finding the right doctor. Why?

• They're not wandering around clearly labelled.
• I would argue that the benefit you get from the doctor depends AT LEAST as much as on what you can invest in the process and the relationship as what skills/experience/compassion the doctor brings to the equation.
• The whole process of finding an appropriate doctor, and then getting a thorough diagnosis, and then getting helpful treatment, takes A GREAT DEAL OF TIME. Meantime, people are still struggling with coping day to day. When I sense that someone is in real distress, well, yes, I want them to get to a good doctor and get them good diagnosis and care but if I sense that they need some immediate relief and I know they can get it quickly and at low risk with some simple non pharmaceutical aids that cannot harm them - then I think it's right to try to encourage them to do so. The quicker they can get some relief and hope, the more encouraged they will be and more able to invest time & energy into pursuing better medical care (and, as Daren says, educate themselves enough to make much better use of the time in the dr's office!)

I think that there are some clear messages from our shared experiences in this forum:

1) Detailed understanding of the disease(s) is key. Most of us get that knowledge from our own research and from sharing with others.

2) Good diagnosis is key, so that you treat the right problem. But good diagnosis is hard to get because eye doctors are very poorly trained in ocular surface diseases. (Not knocking the docs here - I think a lot of corneal specialists would fully agree with that statement.)

3) Forums like this have an important role to play, and why? Because many, maybe most of us really have a chronic lifestyle disease, the management of which is HEAVILY reliant on products and practices that eye doctors have almost no knowledge or expertise in - save some few who have chosen to specialize in this area. I'm talking about everything from moisture chambers (panoptx, tranquileyes, etc) to sclerals to eyelid care to tips for computer use and travel to humidifiers to dry eye friendly makeup to... you get the idea.

[Rojzen]

eyes on the prize

I can't think of a better example of why our collective quality of life depends so centrally on the work done here, at DEZ, than Rebecca's analysis, just above...The only gloss on this that I might like to add is the challenge we face even after we have found one of those rare doctors who has mastered the art of identifying the particular causes of dry eye, in a given case; and that is the challenge of motivating these same doctors to use the good diagnostics as a springboard towards solutions. . .

The reason I have felt prompted to offset the favorable (and well-deserved) reports of diagnostics by Dr. Korb was, along these lines, my experience, over the years, with doctors who become elated when they finally pin down what is causing one's DES...Especially when they have added a dimension to, or refuted, an earlier diagnosis, these good-hearted doctors feel victorious and successful. I'll never forget when my initial diagnosis of lacrimal insufficiency was dramatically changed to MGD, by a doctor who actually looked at my meibomians, and re-evaluated my actually good Schirmer results. The doctor was pleased as punch, and initially so was I. When it became clear, though, that several years' worth of doxycline and lid scrubs weren't going to touch my symptoms, this doctor was happy only to see me leave his care. . .and look elsewhere for help. . .

What I'm adding here is possibly as simple as "let's keep our eyes on the prize." We surely need correct diagnoses, and we surely need to maximize the benefits of self-help solutions, but we also need to remind doctors that they signed up to be healers, and not just scientific observers. . .If they will only be willing to try the therapies that are already out there, I, personally, will be satisfied. . .At the moment, however, way too few are even bothering to bring actual therapies into their practices, often sending us away with another admonition to use heat and lid scrubs, and to make sure and take those nifty Fish Oil caps