At Wits End

[AccutaneJay]

Hello everyone. I'm not really sure the purpose for this thread, but I am just submitting that I was in the Emergency Room last night for severe depression. My dry eyes have gotten the best of me and nothing is providing me with any relief. I can't function at work, at home, I can't enjoy anything any longer, and I'm terribly depressed because of it. I keep thinking that taking Accutane six years ago has caused permanent hormonal changes in my body that in my educated opinion cause my severe chronic dry eye symptoms, and that I will probably never be able to reverse this damage. I'm so very hopeless right now after trying for so many years to help correct this problem, but the more I research, the more I find that I'm probably stuck with this misery for the remainder of my life - and I'm only 24 years old and otherwise completely healthy (except for my IBS/Colitis).

I've seen the doctors, but to only still be in the same position I was when I started, only with less money in my pocket and an overwhelming sense of hopelessness. I left the ER with only a slip of paper that has physician referrals on it after much money spent and many hours waiting in a hallway. I'm just not sure where I'm supposed to go from here.

Tired,

[neil0502]

Jason-

I'm glad you sought help, but ... it sounds like you may not have gotten enough help at the moment when you needed it most.

Most of us will probably understand what you're going through. I've had massive eye problems since birth that have knocked me out of work four times now--each time for years. This time, maybe for good. I'm 42. I feel too young to be all done.

You're dealing with something real, difficult, and emotionally draining. I know.

Are you working with counselors--whether its psychology or psychiatry--to help you deal with these losses? Have you tried antidepressants?? They don't fix your eyes--in fact, some of them can make them a little worse--but when they work, they make you fell just enough better to restore hope.

If you're not working with these kind of people, I'd suggest you consider it.

Hang in there, Jason. I care ... and I know a whole bunch of other people do, too.

Neil
From Massachusetts ... where I'm trying scleral lenses

[kitty]

Jason, I second what Neil said. You should look into some counseling, preferably by a PhD with some experience in dealing with chronic pain. I was diagnosed with three chronic painful conditions last year, one was DES. I can relate completely to the bouts of severe depression. Just last night I was in tears, wondering how I could stand existing like this. Then I dug down deep, looked around and discovered I still have much that I can achieve, and many who need me. There are so many people worse off than I. At least I can walk, and talk, and take care of my own personal hygiene which is a lot more than many people can do. I picked myself up and vowed to do one thing each day that I know I can do and that brings me pleasure. It might be as simple as getting on my treadmill for a few minutes, or playing fetch with my puppy. It might be helping my friend get her condo ready to sell. I can tell you that pets provide some great therapy! Please stay close here and don't do anything stupid. You have much to offer and much to gain from this life, you just have to find it.

[YGB]

Jason - many of us know where you are since we have been there ourselves (only about 3 months ago for me). I know that things can seem hopeless when you are down so far. When I was severely depressed, I could see no hope, no future, etc. (basically everything you wrote in your post since we all pretty much feel the same way when we're at "wits end").

I sought the help of a therapist, my immediate family, and the great folks on this BB (special thanks to Neil, Shells, Lucy, Heather, Rebecca, Kitty, Diana, and many others since they really helped me with their thoughts and words of wisdom when I was at my lowest point). While I initially didn't think that the therapist or my family or this BB was much help since I was so deeply depressed, I now realize that slowly over time, they were all key pieces to the puzzle that helped get me back on my feet.

Also, as hard as it is to do when you are down, please stay diligent on your dry eye therapies ... compresses, fish oil, humidifiers, restasis, etc., etc.. Try subtle/methodical tweaking of your therapy if you feel that your dry eye treatment has stalled. Feel free to note what your current dry eye condition is and what you are doing for it presently so that we can offer some suggestions.

Finally, for me, the final turning point that helped me come out of my deep depression occurred not because my eyes were improving much, but because I had enough of "outsiders" including eye MD's and folks around me (including at work) thinking that my condition was more mental than physical (yes, we folks with dry eye have it extra tough since ironically, people cannot visualize our condition and dry eye is also not one of the dreaded conditions that everyone knows about like cancer or MS). I decided to take on the challenge that I would show people that my problem was directly related to the physical effect of dry eyes. I challenged myself that as hard as it was for me to function, I would give it my best (while also making sure that I was taking the best care that I could come up with for my DES). It was certainly not an overnight success, but after some time, my mind slowly started to buy into this challenge.

When the time is right (not necessarily today), find some motivation to get you out of the depression. As hard as it is to get out of bed every morning and do at least a few things initially like you normally used to do, do it and with time, you will find what will pull at your inner strength to take on the challenge ahead. I will note that medication also helped me get out of the initial severe depression stage (I am still taking Prozac 20mg/day to help keep me on course for the time being) and all of the factors noted above helped get me to a point where my inner strength felt enough confidence and strength that it could take on the challenge ahead. Best. YGB

[Rebecca Petris]

I have to echo what the others are saying...

In addition... do you have another dry eye patient you can speak with? Sometimes people on this board get to know each other via email or private message and exchange phone numbers.

I know that some patients who have really put effort into getting professional counseling have struggled to find a professional who seemed able to understand what they were talking about. They may be well qualified in the underlying issues of depression and coping, but still not "get" what chronic pain, or dry eye pain, means, and when you're really vulnerable it can be hard to be persistent and keep on going when you don't feel validated. So keeping in touch with people who really, truly understand may be very important.

I am really glad that you're able to reach out when you're in crisis. You will get through this. Hang in there.

[20/20_Hindsight]

I am so sorry you are at this point. Everyone has given thoughtful, helpful advice.

I was at that point 5-6 years ago from a Lasik disaster that produced extremely severe dry eye (along with horrible vision). The only thing that kept me from going off the deep end was antidepressant medication. Once that kicked in - the extreme hopelessness feeling ebbs a little and you can cope better. Any side effects from the medicine was neglible in comparison to the deep, severe depression.

It might be time to stop doing "research" and take care of yourself instead. Stop looking on the internet or wherever for now. If it is permanent, then what is, is. Maybe it is not. I think sometimes when in this depressed state, you want so badly to find the "cure" and it spirals out of control. You are very young, and this is devastating, but you can and will go on and find a way. Might take awhile, but you will be okay. We are all here for you.

[AccutaneJay]

Thank-you

Thank-you everyone for your replies and words of support and encouragement. It really is amazing how much an effect this condition can change one's life. Everyone's kind words have helped elevate my spirits today, and I just wanted to say thank-you to each and every one of you. I appreciate all of the suggestions everyone had to offer based on your own personal experience. At a later time I may post a separate thread that contains details about the therapies I employ to help manage my symptoms so that perhaps everyone can provide me with their feedback and perhaps additional ideas.

The steps I've taken today are 1) taking the day off work to help recuperate from my fall yesterday, 2) scheduled an appointment with a new primary care physician - my current set of family doctors are not satisfactory for me, 3) have been reaching out to recommended counselors for therapy to improve my coping and pain management skills, and finally, 4) expressed my discomfort and pain on this board, so that I might receive the kind of motivational responses that everyone has provided.

Thanks again everyone.

[Guest]

Hope

For those who haven't heard about Dilbert creator Scott Adam's recent experience with losing the ability to speak, I thought I'd post the link. My intention is not to trivialize anyone's condition, or to suggest that one can magically fix every physical deficiency simply by trying harder. I just wanted to point to an example of when optimism, persistence, and a creative approach paid off, in spite of "experts" and a hopeless prognosis. So keep the faith!

Read about Scott Adam's story on his blog, here. There are many (over 1500) interesting comments from readers as well.

[Adar]

Chronic pain help

Jay, I'm so glad that you are taking some steps for yourself. Sounds like you are moving in a good direction.

Something that has already been mentioned but merits repetition: a counselor who has experience in working with people with chronic pain can be a big help. They'll take you and your eyes seriously, and understand that pain is real.

Good luck to you. You are so wise to be aggressive in seeking help for the depressed feelings! Trust that inner wisdom in making choices about the right docs and counselors for you.

[clintsmommy]

Hang in there Jay

Jay,

I know exactly how you feel. I too am 24 and suffering from severe dry eye from contacts and Lasik. I wish I could tell you that your dry eye will get better and that you can live normally but I can't. The only advice I can give is to pray and get on an antidepressant. I have been on Prozac for about a month now and it has helped greatly. It has not made my eyes worse either. I know about the severe depression you are experiencing. If I was to quit taking this medicine, I would most likely be contemplating suicide again. It is a terrible burden to bear especially at our young age. Try an antidepressant and see if it helps. Do everything you can to help your dry eyes. Drink water, take supplements, do compresses, use drops. I know its aggravating, but please try not to let it overtake you. I hope you find some relief, and remember you are not alone

[Julie1]

I know what you are going through...

Jay,

I just read your post, and I want you to know that you are not alone. I know what it is like to be young and to also suffer from DES. It's a challenge to keep up with work responsibilities and to keep up with your social life. I completely understand what you are going through. Please hang on! I would definitely follow the advice to get on an antidepressant and to find a dry eye buddy that you can talk to frequently throughout the week. I have been talking to another dry eye sufferer who lives in my city almost everyday for the last six weeks or so. It has really helped me to not feel so alone. This person that I have been talking to understands exactly what I am going through even if my parents, boyfriend, and parents want to help but just don't understand what it is like to live with dry eye.

We are all here for you!!

-Julie

[heather g]

Jay,
I read your post and was very glad to hear first that you went to seek help at your lowest point and then you are following up with a good plan. I have post lasik induced dry eye and I know how life altering it can be.
Beyond that I am actually a psychiatric nurse. One thing I know for certain (and others have pointed out in their posts) Your mental health is your first priority. Depression can be treated with medication and counseling. When this is dealt with you will have the coping you need to deal with your eye issues. You may or may not find relief with your eyes. I like to think that all of of will find some. However you will be able to deal with your situation alot better. Believe me I have had alot of days struggling with hopelessness or anger. But you will be able to cope better with all these feelings.
If you aren't successful with your new practitioner find another until you are. Your life is too valuable to settle for less. Thank goodness you found your way to seek help and support. Good luck to you and take care.
Heather

[AccutaneJay]

Thanks Again

I just wanted to say a quick thank-you to everyone again. I continue to struggle with my eyes during the day a lot. I find it very difficult to remain at my desk for long due to the burning and irritation of my eyes. I have been thinking about taking in some swim goggles to wear while I am at my desk and doing computer work, but honestly am in fear of the reactions of my co-workers. My DES is evaporative and what I would consider severe to the point where the only thing that really provides releif is closing my eyes or wearing goggles. Drops only help for about .5 seconds, and compresses have provided no real relief either, although I continue to use them.

This is so difficult, and I continue to leave the office usually with tears coming down my face. This type of chronic pain is just unlike anything I have ever encountered before -- your eyes -- it is so powerful in its effect on you.

Thanks again to everyone for their inspirational words and motivating sentiments. I know it is key to keep in mind that others in this world have it much worse than I (us), but sometimes I unfortunately keep thinking to myself that there are worse things than death in this world, but I am trying hard to keep myself away from these thoughts. I must find some type of relief... it is just so hard to be expected to cope with this on a daily basis... over and over again.

[YGB]

Jay - here is my advice ...

1) Do some good research on an ideal diet and possibly consult with a knowledgable dietician and/or GI doc. Since you have GI issues and possibly rosacea (although I'm not sure about this, but solely basing it on your accutane connection), it's possible that your eyes are not getting the nutrients needed to help them improve. I would encourage you to take a fish oil supplement every day. The liquid form is best in my opinion and one of the better fish oils is Carlson's ... http://www.vitacost.com/Carlson-The-...inest-Fish-Oil
Canned salmon or wild salmon is also good to have once or twice a week. Organic grapes and walnuts are also good. Of course, I'm not sure what your body can handle but the foods above can help if they are well tolerated. I'm sure there are many other good foods that can help. A good, consistent diet is key and not often mentioned at the top of the dry eye list (but it should be).

2) I stated this in a previous post, but it is worth repeating. When my eyes are feeling severely dry to a point similar to what you are describing (i.e. one or two drops every few minutes gives virtually no relief), I use TheraTears but rather than just using one or two drops in each eye periodically, I "bathe" the eyes. This is a "helpful hint" stated on the side of the blue TheraTears box. It states ...

"HELPFUL HINTS: TheraTears in preservative-free single-use containers is designed to saturate dry eyes, providing the dosing that is ideal for very dry eyes. For maximum hydration and relief of dryness doctors may recommend splitting the entire contents of one container between both eyes within a 5-minute period after opening, at least 4 times a day."

3) Since your DES is evaporative, having water around the eye is important. In my experience, this is best accomplished in 3 ways. 1 is a good humidifier. I like this humidifier ... http://www.amazon.com/Hunter-Fan-2-0...=baby-products
A second source of humidity/water that goes directly on the eye is "Nature's Tears" mist that I mentioned today in the "Daily Check-In" sticky section of the open forum. Finally there are goggles that you talked about.

Let's face it ... dry eye sucks! When it is causing severe, unremitting eye pain, there are likely few things that can be worse. Believe me I know because I have been there and I am by no means out of the woods.

While it appears that there are no "magic bullets", there are things that can help improve ones dry eye condition. It may not get you back to 100%, but if you are around 1-10% now and you find the right combination of good eye therapy, I believe that you can get back to 80% or even greater with time and diligence. Unfortunately, with DES it is not an overnight process and it requires diligence and methodical research on the patient's part to find what works and does not work. Also, please consult with a good eye doctor. If you want to send me a PM with any follow-up questions or just "talk", please do. Best. YGB

[AccutaneJay]

YGB, thank-you for taking the time to make all of your wonderful suggestions.

Here are my responses:

1. I have been on a very strict diet for my IBS/Inflammatory Bowel Disease (IBD) for 56 days now. This healing process will take quite some time according to the doctors and research information I have accumulated. I am happy to report that I have in fact improved since beginning the diet, but it is a slow and timely process. This sometimes adds to my frustration with my DES. I often believe that my dry eye is associated with my IBS/IBD, and am hopeful that things will at least improve (I'm not getting my hopes up for any type of cure) as I continue to heal my IBS/IBD condition. I am taking plenty of vitamin/mineral/amino acid/essential fatty acid supplements due to the fact that I most likely have absorption issues due to my IBS/IBD. I agree with you on the fish oil. As part of my supplement/diet program, I am taking at least 2 teaspoons of Carlson's liquid cod liver oil every single day. This is very healing for my intestinal inflammation, and I should be getting adequate n-3 EFAs from this dose every day. This is my #1 superfood - for my eyes and my bowel disease. Thank-you for the grape advice; However, I cannot tolerate sugar or any type of fruit or juice, and sugar is completely banned from my healing diet program.

2. Great suggestion about the TheraTears saturation. I also find that this helps when I am at my lowest points. I have employed TheraTears drops only, as I beieve in the science behind them, and they are the only drops that provide any type of noticeable relief for me and have not shown to irritate my eyes at all. I was using Refresh Endura for evaporative concerns, but I found that it only irritated my eyes, so I stopped using it - plus it was quite expensive given the price/quantity ratio.

3. I of course agree with you about my need for hydration and water on the eye. I took at look at the Nature's Tears web-site and am very interested in this - it looks very refreshing! I will certainly be adding this to my wish list. I see they offer a $1 coupon on their web-site. Is this available in stores? Also, I use a humidifier in my apartment, but I must admit, I don't use it as often as I probably should - I get lazy with I suppose as it can be a hassle to clean and refill at times. I should try to be more consistent in my use of it - thanks for the suggestion. It's helpful to hear others reinforce that it is beneficial for DES.

In addition, I am in the process of finding a new primary care physician, as well as a new ophthalmologist that specializes in DES in my area. I believe this will help. I am not satisfied with my current physicians.

I also just want to note that to help combat my night time dryness, I use simple TheraTears in a bottle ("preservative free on eye contact") when I wake up to turn or use the restroom throughout the night. I really think that this is the best time to encourage healing or restoration, and the drops to help keep my eyelid off my eyeball is certainly a help. I have tried to use swim goggles while sleeping to build a moisture chamber, but I find that these often disturb my sleep and are mostly uncomfortable. I have yet to purchase TranquilEyes, but have this down on my dry eye wish list. I have read some mixed reviews about this product on this BB, so I guess I have been hesitant to spend the money - what are others' opinions?

Thanks again and regards,