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**rubyslippers** · 15-Jul-2008, 07:01

Sleep medications, particularly a couple of those you mentioned, are notorious for making dry eye worse. I just got off a prescription drug (Nexium) that was making mine worse. Any drug with dry mouth as a side effect should also say dry eye as a side effect. Anti-depressants, sleep meds, anti-anxiety drugs, etc. are all notorious for causing "cotton mouth". Unfortunately, the longer you use them the worse it gets. Over the counter sleep meds do the same. I strongly suggest that anyone considering this read the label and if it says dry mouth as a side effect, to weight the cost vs. benefit.

Personally, I find that waking several times a night and gently opening my eyes and blinking some, restores moisture and I do better than when I sleep the night through.

**calli66** · 15-Jul-2008, 08:05

I'm one of those people who uses Dwelle/FreshKote successfully for daytime, and relies on Gel/PF drops at night.

I think there's a tendency to think that what works for us personally, will work the same way for others as well. I think Rojzen's point that Dwelle (and Holly's other drops) is most effective when used as the sole drop, may be true. I keep that approach in my mind as a "goal" to work towards, but allow myself to use "what's working" right now.

This is a common way of thinking.....we're so grateful to have found a way that works for us that we feel sure it will work for others. But since eye problems have different states and causes, there are only general guidelines, no hard "rules" about the best way to get better.

I've been trying to help out a fellow Sjogren's sufferer in my town---suggesting to her all the things that have helped me. For example, I lent her my Panoptx, which seem to help. I suggested it would be better to use gel at night instead of ointment. But she's in such pain overall, she can only deal with small changes right now. Too much information---it just sails right over her head. She told me that when she tried Genteal Gel, that it really burned, and she's not used to the gummy residue that sticks her lids together. That reminded me that during certain periods when I had really bad "dry spots," the gel (and Dwelle, and every other drop) burned mercilessly. So I have to curb my enthusiasm for helping her, with the understanding that it can be a slow personal journey for each of us to find our way to relief. It's not just the eyes, it's the whole person.

Having never taken any sleep aids of any kind myself, I question whether this should be part of the "dry eye aids" toolbox. I put those meds into a last resort category, for treatment of insomnia and depression that doesn't respond to non-medication treatment. Adding any major medication really increases the variables when it comes to teasing apart the contributing factors leading to one's dry eye.

Calli

**Rojzen** · 15-Jul-2008, 12:29

please re-read my caveats; dry mouth/eye effect NOT universal

I am enjoying the debate that is now under way, but for those who feel I was preaching a single solution for everyone, please allow me the fairness of noting that I carefully stated, several times, that my approach MIGHT work for some UNKNOWN percentage of dry eye sufferers, and that only our eyes' response to a particular regimen can determine whether that regimen should be pursued. . .

I submitted my ideas, here, moreover, only because someone specifically asked me for ideas on how to solve the problem of Dwelle, alone, not being an adequate solution for overnight care, in some cases. . .

Regarding sleep and anti-anxiety/depression medications: Please read carefully the package inserts and the monographs on such drugs, because there you will note that even when dry mouth and/or dry eye is listed as a possible adverse effect, the reported rates of this particular side effect are generally quite low. If you're one who gets the dry eye from a drug like amitriptyline, sure, the rate feels too high. But I and many others are examples of people who suffer NO drying effect from medications like this, at reasonable dosage levels. . .

Possibly these drugs' reputation for drying is "notorious," but much more important is their actual measured effect, and whether a particular patient experiences the feared effect.

For example, minocycline is now very popular as a treatment for posterior blepharitis. While this drug is not notorious for causing dizziness, I get dangerously dizzy even from very low doses of it. I am probably 1 in a 100. I would certainly never discourage anyone from trying minocycline, in any case, as it is an amazing drug for many kinds of inflammatory infections.

On the question of drug effects, moreover, to be scientific in risk/benefit analysis, one must take into account the startup picture: I and others suffer from increased dry mouth and dry eye during episodes of severe anxiety related to dry eye symptoms; for people like us, getting help with anxiety actually REDUCES our dryness, even when the medication used presents a reported risk of drying in the general population. . .

I don't want to be strident here; but I do want to be sure that people are not unduly scared off from medications. . .I know of too many people who have either attempted self-injury or discontinued normal living as a result of disabling depression/anxiety that often goes with the struggle against an illness. . .In such cases, I think it is tragic if the affected patient is not encouraged to try at least a few of the many, many varied medication solutions now available for this kind of mental crisis. . .

Thanks for hearing me out

.

**kimby2007** · 15-Jul-2008, 12:56

Sleep aids

As someone who religiously uses sleep aides I have to comment and say that for me they are defintely part of the dry eye arsenol. Without them I couldn't fall asleep with the pain from my dry eye. While they are not for everyone they could be considered for some depending on the symptoms.

Kim

**Rojzen** · 15-Jul-2008, 13:41

side effects often disappear over time

What kcoffiner says resonates with what I have learned about pain and pain treatment: Often, assistance in getting to sleep, and staying asleep, is considered an essential component in pain therapy. If pain itself deprives one of sleep, a pain doc will often address the sleep issue directly. In turn, pain docs, today, as well as mental health professionals, seem to agree that chronic pain can be worse in patients who are chronically sleep-deprived.

Our eye problems complicate things greatly, of course, in that for some, sound sleep dries the eyes, and in others, awakening throughout the night, with lids open, causes erosions. That said, there is still a way to analyze costs and benefits of improved sleep, even factoring in how sleep changes may help or hurt our eyes. Personally, I am not sophisticated enough to do the analysis without a lot of trial and error on myself.

I want to reply, too, to the assertion that the side effects of dry mouth or dry eye, from a particular medication, generally worsen over time. This is actually not the received wisdom on side effects. While every patient is really unique, and while some patients may get drier and drier on a particular drug, it is widely believed that side effects involving the autonomic nervous system and affecting adrenaline secretion lessen over time. That is why most drug packet inserts one gets at the pharmacy list possible side effects, but then also say that these effects may disappear over time.

Again, drug responses vary wildly from person to person. But this, for me, is all the more reason not to scare patients off from trying something that could be immensely helpful in the areas of pain reduction, sleep improvement, and reduction of anxiety and/or depression, all of which bear on how well we are able to face our daily DES challenges.

**rubyslippers** · 15-Jul-2008, 16:30

Just a side note: My doctor says that some drugs have dry eye as a side effect and note a low incidence of that. BUT--he said if you already have dry eye the chances you will get that side effect is much, much greater than for the average person. Just a tiny bit of change can throw someone from mild dry eye into moderate or severe. He says that most of those who do report are those who had dry eye to begin with and he suggest they are only a very, very last resort due to this.

I have been on 3 stomach medications- each very, very different chemically, over the last few months. All have a 1 to 2% chance of side effect of dry eye. That would seem worth the risk to a person without dry eye. Because, I already had dry eye I got that side effect much worse from all 3 drugs. It bore out what my doctor had said.

**NYer** · 15-Jul-2008, 16:36

I have had exactly the same experience as Ruby. Every med I took this year that had a low possibility of dry eyes gave me bad dry eyes.

**Rojzen** · 15-Jul-2008, 17:39

enough to tip one over the line; but not always

My heart goes out to those whose already serious dry eye was quickly worsened by drugs that have the potential to cause drying; and no one can dispute that this phenomenon occurs. . .

At the same time, completely opposite responses to such drugs make it unwise, I think, to classify them as off limits to dry eye patients.

For example, when I started on amitriptyline, a drug that has the potential to cause drying, I was about as severe a dry eye case as can be measured, with a tear film break-up time of 0 seconds. I could not function, even indoors, without nearly airtight moisture chamber glasses. When I started on amitriptyline, I experienced no increased dryness, and a DRAMATIC reduction of my burning eye pain. I finally began to sleep through the night, for the first time in about 5 years, as well. I did continue to need my moisture chambers, but I certainly felt much better, overall, and my cornea health remained stable.

The point here is that we are indeed all very different. Without trying a potentially helpful medication, there really is no way to know whether it will help more than harm. Unless one believes that the drying effect of such a drug is likely to be permanent, even if taken only once or twice, it would seem fruitful to remain open to trying it.

Here at DEZ, there have been important reports of particular topical antibiotics causing permanent damage to the ocular surface. That is one class of drugs I would therefore choose to be very cautious with. In contrast, in light of my own excellent experiences with pain and anxiety medications, for pain and anxiety generated by severe dry eye, I cannot help but worry about scaring patients off of all pain and anxiety meds on grounds that some patients may experience what is, in all likelihood, going to be only a temporary increase in drying.

Interestingly, I have always found castor oil, and Restasis (which is carried on castor oil), to be very drying and irritating. Dr. Holly, I believe, has also shared with us references to studies indicating that castor oil is cytotoxic. To my delight, even after 4 years on Restasis, without abatement, the drying and irritation I'd suffered from Restasis stopped immediately when I said goodbye to that drug. This is, I think, a relevant instance of the temporary nature of some adverse side-effects. . .

Those here who are kind enough to read my often too-long posts probably have noticed that I use the pronoun "I" very, very liberally. . .This is deliberate, because I want to honor the prerogative of every patient either to embrace or reject another's suggestions, and I want to avoid seeming to generalize, unless I have a real basis for doing so. So for any who have found me to be pushy or didactic on the question of medications, please accept apologies. . .My intention was merely to throw some positive examples out into the ether, for people to consider. I believe that my friends here who feel that pain and anxiety drugs are to be avoided at all cost actually share this intention, and do not actually wish to pressure others never to give them a try

..

**rubyslippers** · 15-Jul-2008, 19:22

Yes, topical antibiotics did do damage to my dry eye condition. In my case, with a very virulent form of bacterial pink eye there was absolutely no choice to save my vision and it could have gone systemic threatening my life.

I am just saying with optional drugs, consider that the anxiety of dry eye that you are treating, could possibly cause the dry eye to worsen. I would certainly use all possible alternatives first such as counseling, meditation etc. I can highly recommend "Full Catastrophe Living" and the technique of mindful meditation that the author recommends too. I am not saying no one should ever do this, but in the same way a person researches lasik and takes on those risks if they go ahead, medication also carries risk to those of us with dry eye.

**Lucy** · 15-Jul-2008, 20:42

am enjoying the debate that is now under way, but for those who feel I was preaching a single solution for everyone, please allow me the fairness of noting that I carefully stated, several times, that my approach MIGHT work for some UNKNOWN percentage of dry eye sufferers, and that only our eyes' response to a particular regimen can determine whether that regimen should be pursued. . .

At the same time, completely opposite responses to such drugs make it unwise, I think, to classify them as off limits to dry eye patients.

For example, when I started on amitriptyline, a drug that has the potential to cause drying, I was about as severe a dry eye case as can be measured, with a tear film break-up time of 0 seconds. I could not function, even indoors, without nearly airtight moisture chamber glasses. When I started on amitriptyline, I experienced no increased dryness, and a DRAMATIC reduction of my burning eye pain. I finally began to sleep through the night, for the first time in about 5 years, as well. I did continue to need my moisture chambers, but I certainly felt much better, overall, and my cornea health remained stable

Rojzen, as much as I enjoy your posts and appreciate your articulate, intelligent take on things, I think your advice goes a bit far. Or perhaps just too zealous? Your posts are suggesting people take "sleep aids" and other things may not be appropriate for a dry eye board? Remember, folks, we are all just dry eyed patients unless we have M.D. or O.D. after our names.

Lucy

**Rebecca Petris** · 15-Jul-2008, 21:14

I've been watching this thread with great interest.

There have been many times when I have stepped into a thread and reacted to something based on an impression of what someone was saying, or even on an attitude that I had acquired about a member over time, rather than in response to a careful and thorough reading of what a person was saying... and regretted it, and had to eat my words (or should have if I didn't)... just as, in conversation, I all too often interrupt people reacting to what I think they're saying rather than listening to them. I think we're seeing some of that here. I'd like to invite everyone to step back and READ CAREFULLY before responding.

With regard to sleep aids, it is my understanding the discussion was about prescription drugs, and no one is suggesting taking them without a doctor's advice. My understanding of Rojzen's point is not that people should take them but that people who have some serious sleep problems that may compound dry eye should not necessarily exclude the merest possibility of taking them on the basis of a generalized fear of dry eye as a side effects of that class of drugs. I am far too ignorant about sleep aids to have an opinion about that but I am sympathetic to the logic of this view because it's roughly the same as the position I take with respect to antidepressant therapy for people with severe dry eye, when there is a question of whether the depression may be at least as disabling as the dry eye.

**liz56** · 16-Jul-2008, 06:34

Sleeping

I was going to add a blog entry on sleep, because it is what makes things bad for people with recurrent corneal erosions. It's a vicious cycle, and REM, though necessary for the body, is the stage where it awakens some of us with terrible pain and three days of bad vision.

Of course, good, solid sleep is essential, as we are learning from medical science more and more. It's not that I did not want to sleep; I very much did. The punishment for sleep, however, was so severe.

I used to take Melatonin (sp?) to help with sleep, though I rarely had problems sleeping with my thyroid crapping out on me. I feared taking it and "letting" myself enter a deep sleep for fear of RCE's, once they started. I have not taken that since this problem arose for me.

--Liz

**Rojzen** · 16-Jul-2008, 17:09

Thank you, Rebecca; Aim high for mental health and overall body health

Thank you, Rebecca, for restating with true clarity and directness what I was more clumsily trying to convey, here. Never would I suggest any kind of medication that is not endorsed and initiated by a doctor; but at the same time, since patients regularly bring ideas to their physicians, based on personal research or concepts introduced in patient advocacy organizations, it is no longer unusual for a doctor to approve and initiate a treatment that a patient first brought to his/her attention, and so I would not hesitate to suggest to patients that they present their findings to their doctors regularly. . .

I'd also like to clarify that I have not intended at all to promote the class of drugs called "sleep aids." I've never used these, actually, except once or twice, when I found them to be unhelpful. No doubt, some medications in this class have been godsends for patients who need not fear sleeping too deeply or experiencing REM or excessive REM; but I take no position on these, because I haven't had occasion to give them a fair try.

What I've been referring to consistently, here, are the medications for pain and anxiety/depression that have, as additional and often only incidental, benefits, improvement of the sleep cycle. The best known of these is amitriptyline/Elavil, which has long been used for treatment of fibromyalgia, and which, for me, has proved tremendously helpful in reducing the burning pain in my eyes (prior to my discovery of Dwelle).

I see a highly credentialed and very dedicated physical medicine/pain M.D., and I must credit her with the information I've gleaned, over time. It was, moreover, the Johns Hopkins Pain Clinic that first introduced me to the idea that dry eye pain could be treated with anticonvulsive medications (which I've never taken for any prolonged period) like Neurontin, Tiagabene, and Topamax.

The real conundrum here is the one raised so eloquently by liz56. Many of us here suffer terrible consequences from sleeping too well or too long. My dream, for those in this category, is a solution, through medication, nutritional supplementation, or spiritual practice that makes it possible for ocular surface health to be supported, rather than hindered, by the sleep that the rest of our body unquestionably needs. I am extremely lucky that amitriptyline has functioned multidimensionally for me, primarily as a pain reliever, and secondarily as a sleep support that does not harm my eyes.

Regardless of the particular approach that has worked for me, I am hopeful that everyone who still needs help, here, will keep minds open to solutions that are multidimensional.

A propos: This week, I learned that a beloved friend with severe dry eye has found a new ophthalmologist who has not only prescribed a variety of topical medications and minocycline, but who has also insisted that he see his internist for treatment of pain and depression associated with dry eye. Pretty soon, this approach will not be novel, I hope, and all our best eye docs will be encouraging those who need it to aim high on the mental health and sleep fronts.

**calli66** · 16-Jul-2008, 18:35

Rojzen,

Thanks, as always, for your thoughtful comments and suggestions.

C

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