I've been feeling suicidal lately...

[tommyboy]

Hi Patrick

This Shane, wife of Tommyboy.
PLEASE do NOT loose HOPE!!!! I can't say I know how you feel personally, but I have certainly lived it thru my husband. You are in a terrible place right now BUT it CAN and WILL get better!!!!! There is still a lot for you to try.

I would definitely get on serum drops ASAP! We get ours thru Leiters Pharmacy in San Jose, their number is 408-288-8252 if you call them they can help you find a blood lab in your area that can draw and ship your serum to them for processing. you also need to be screamed for some STDs, standard safety protocol that takes a week or so to get results. So try to start process now, I can't imagine why your current opthomoogist wouldn't be willing to help with this and sign form. You should show them the article from eye world, march 2012, titled "Treating unexplainable pain". It's a good article to try to educate your doctors if not aware of your condition.

You sound like you have cornea neuralgia as well as DED. As does Tom

Anyway, my advice is:
1) get on serum drops ( Tom takes 8x/ day and his pain got worse first, but than better. He went from pain 8-9, to a consistent 3 in about 4 months

2) see a neurologist - there are nerve meds that can help with pain: gabapentin, lyrica, tegretrol, etc. they did not help Tom but has helped others

3) a psychiatrist - definitely need some anti depressants, can't handle this emotional mess on your own. I know you have been getting therapy but hope you are on an antidepressant

4) if major pain is from DED than PROSE lens at Boston foundation may be an option as well

Just remember there are still things you can do to help!!!! Don't give up hope- your baby and wife need you!!!!!! You may not be in good shape NOW, but it will get better. You need to be HERE to get better!!!!

When Tom tried to take his life, he thought there was no hope, his life would never get better, only 3-4 months after he is engaged back in life playing with our kids, helping me around house, smiling again!!! It was a miracle he survived, something I will be grateful for ever bc I cant even imagine the alternative!!!!

PM me if want to talk! Sorry so long!!!!

[Guest]

The only thing that I look forward too is going to sleep. Because then i can put in some gel and close my eyes, and for once in the day I am no longer in pain... ...It's just been very difficult to get through the day whether it's hour by hour or min by min. To be honest its the min by min that's the hardest really, because its a constant reminder that I'm still in pain.

Hi again Patrick,

The part about how the only time you're not in pain is when you have gel in your eyes and close them - I was like that too, back in summer 2009... it sucked beyond belief. But, fast-forward to now, and boy have things changed - every week I work 21 hours over a 2 day weekend and I can handle it now... I can read again... I can watch TV again... I am generally able to keep my eyes very functional compared to back then... no more need to keep them shut for several waking hours each day (in addition to sleep) You'll improve like that too... you just need the right combo of treatments and the passage of time to heal...

If you are capable of being painfree, even if means with eyes shut, then run with that.

To save my eyes the discomfort of doing this on the computer, my husband got me an ipod touch, found audible.com so I could order audiobooks (to be listened to on said ipod), and he also found that our public library had an on-line version so I could get audiobooks from free from there too. Then he downloaded and set up all the necessary software on my computer and showed me how to use it... maybe your wife could do that for you, or a family member... that way you save your eyes from too much computer time setting it all up. You can listen to the books with eyes closed... painfree... why not? Ditto with TV... I had to work hard at distracting myself back when I was in dire straights... I had to work hard at pushing all the worry and sadness out of my mind and clinging to any pleasure I could find in the day... it's hard, but don't give up... it gets easier with practice...

Are you still working? Maybe you need time off to baby your eyes for a while... I was only able to work 4 hours at a time even in winter 2010, and never 2 days in a row as my eyes needed time to recover from the irritation of work... in your current state of mind, you ought to be able to get time off for short-term disability at the very least... be extremely frank with your doctor about how you are feeling... go to your GP if your ophthamologist won't help you with that part...

Next, contact Leiter's pharmacy and inquire about serum drops, and see if they can name any docs near you that prescribe them... be insistent with your dr. that you want to try them.

Also, be aggressive about plugging your puncta... why not? The silicone plugs can be removed later if need be, and having all 4 puncta plugged can make a huge difference compared to temporary ones. And if you end up like me and need a combo of cautery/plugs because plugs are irritating, then do it. This is war on your uncooperative eyes, and you must be aggressive and win this so you can get your life back.

Are you wearing moisture chamber glasses such as Wiley X's yet? If not, then please get some asap and start wearing them during all waking hours... you need to baby those eyes until they get better... the more you baby them, the less inflammation there will be, and the better they will feel...

And, as others have said, ask your GP about meds for depression... or a referral to a psychiatrist if need be... and if the psychiatrist sucks, then get a referral to a new one... it's hard to fight when you're down like this, but you can do it!!!

[dryeye4ever]

patrick....thinking of suicide over dry eyes isnt good. Some people have cancer or are handicapped. I understand that you are a newly dad but just stand there, its a fight against inflammation and human healing is possible. Try Omega 3 and lactoferrin supplements and you will see improvement over time. I will be updating more after a try at a recovery .

[patientpatrick]

hey dryeye4ever.

I understand that some people have cancer or are handi-capped. And i feel tremendously for them. I've lost several close relatives of mine to cancer, and have a father who is severly handi-capped. The irony to this all is that there is a side of me who wished I ended up like them instead. At least I would have been at peace knowing that I didn't cause this self-inflicted pain. Plus to be honest, I think i could handle pain much better if it wasn't constantly occuring everytime I looked at something. I'm not sure if this all makes sense.

Please let me know how your lactoferrin treatment is going. I've been following your posts.

P

[DCRdryeye]

Patrick, it sounds like guilt over having damaged your eyes. But your were not to know.. Unlike cancer, dry eyes and MGD, in my opinion IS a handicap. It destroys careers, it destroys the physical body, it restricts social life, it destroys us mentally and financially. Such trauma is likely to cause depression and feelings of suicide, there's no point in saying others have worse problems. It does not help someone who is in a depression.

On the other hand, those whom have had the problem for a lot longer such as myself we can say both the eyes and depression do improve. It's just a matter of patience, treatment is trial and error and you'll stumble upon something that works for you. And take solice in knowing there is a huge worldwide effort to create better treatments for us. They maybe just around the corner.

[LauraK]

Hi Patrick: I know what you mean. There were times when I was at my worse and I wished I had cancer or some other disease/illnesss. I also felt guilty for what I had done to myself. I still remember minutes before I went into the surgery my husband saying I don't know why you would mess with your eyes. That comment haunted me for months.

Please do not put the guilt on yourself. You followed the odds and most people have little side effects. I have an identical twin sister who had the surgery done a few years before I did. She had no problems. We just don't know why some of us have issues and others don't.

Through all of this I tried to find a silver lining - I focused on those things - I was going to church more often; valuing the time with my children more; exercising and taking care of my health in which I could; finding more patience that has helped me through other stressful times. TAke care of yourself!

[patientpatrick]

It's been a long time since I've written a post. I've been seeing a therapist over the last few months. One of the things he strongly recommended doing was to stay off this forum for awhile. I was obsessing over all the stories of hopelessness and it was really affecting me in a very negative way. I've been very thankful for all the support I have gotten thus far and I continue to battle the day to day.

As of now I've been on new treatments. I've been on serum drops for the last 6 weeks with very minimal improvement (if any). I've also done a 16 week round of doxy for my MGD and at my last eye exam it was noted that my uppers weren't expressing anything, and 40% of my lowers were expressing oil and what did come out was very thick, so are still the consistency of toothpaste. I'm still on the fish oil, and 15 min compresses 2-3 times a day and I'm not sure if its doing any good. I've also been on Restasis for 8 months now and have been quadra-plugged for 5.


What's most depressing is how normal I was pre-lasik. No drops, compresses, restasis, serum, plugs etc... and even with all those treatments I'm barely normal a few hours out of the day.

I'm thinking of stopping some of my treatments but too chicken to risk it, its just hard when you're running 60mph for the last few months and have only moved 2 inches. I've told this to my therapist and have confided in him regarding my suicidal thoughts. It's clear that the pain from self blame hurts just as much as the pain from the surgery perhaps even more.

It's been tough to hold on to hope.

[Guest]

It's been a long time since I've written a post. I've been seeing a therapist over the last few months. One of the things he strongly recommended doing was to stay off this forum for awhile. I was obsessing over all the stories of hopelessness and it was really affecting me in a very negative way.

That can happen for sure... hopefully the break is doing you some good!

I'm still on the fish oil, and 15 min compresses 2-3 times a day and I'm not sure if its doing any good. I've also been on Restasis for 8 months now and have been quadra-plugged for 5.

It's such a slow process... just have to hang in there and do everything you can to stack the deck in your favour... eventually you'll turn a corner...

I'm thinking of stopping some of my treatments but too chicken to risk it, its just hard when you're running 60mph for the last few months and have only moved 2 inches.

Heh... I've definitely been there... for me, I get to a point where I honestly just feel like it's safe to try going without something... but it can take a looooong time. And there are other treatments that I believe are useful that I have no intentions of stopping anytime soon, since I'm way too far from having "normal" eyes to even entertain the thought of giving up on some of these treatments. Such is life...

It's been tough to hold on to hope.

Tough, but you must find a way to do it. Don't quit. This part of your life is totally sucking, but it won't always be this way... you just have to be patient, difficult as that is. It'll be worth it though, once you come out the other side of this... you'll be so glad you waited this out... trust me! If your eyes get back to "normal" again, awesome! But worst case if they don't, odds are they will still improve a LOT, and you will be happy again.. you'll see!

[patientpatrick]

Thanks for the reply to the post SAAG. It's always good to hear from you. Your story about the swimming goggles has been the highlight of my week and it's wonderful to see you enjoying yourself. I'm at the point right now where I feel I need to try something drastic. I figure, what do I have to lose? The suicidal thoughts just creep into my head during the day and all i can think about is unless I turn that corner soon I'm going to lose it. My latest obsession is IPL, I considered lipiflow but for some reason it seems like a very advanced warm compress and gland expression. I don't know just my opinion I guess. Have you tried either? My MGD seems to be driving me the most nuts lately, and funny enough I wonder if the serum has anything to do with it. I've been on it for 6 weeks and for some reason the last week my eyes have been burning more than they used to.

All in all, I'm trying really hard to keep a level head.

[Guest]

I'm at the point right now where I feel I need to try something drastic. I figure, what do I have to lose?

Any chance you might have allergies? That could lead to a pretty drastic diet hehe For me, if I give up wheat, my MG's are perfect. I no longer take doxy (was on 100mg/day), don't do any heat treatments... nothing. All I do is try not to eat wheat. Maybe you'll "luck" out and find something like that too? Might be worth trying as an experiment... look for the most common allergens, and try not to eat any of them for 2-4 weeks... see if your glands get any better. (If you do this, buy a high powered magnifying mirror first though, so you can monitor the appearance of your glands youself.)

The suicidal thoughts just creep into my head during the day

That's a tough place to be, no doubt about it. Don't know what to say, except to keep practicing the art of shoving those thoughts out of your mind every single time they intrude. Persistence can pay off. And try to keep busy with stuff that doesn't make your eyes worse. Try audiobooks maybe? (if you haven't already)

My latest obsession is IPL, I considered lipiflow but for some reason it seems like a very advanced warm compress and gland expression. I don't know just my opinion I guess. Have you tried either?

I did try Lipiflow, although it was at a dermatologist's office - I showed her an article on it and asked if they could go as close to my lid margins as they deemed safe... I went for several treatments, and I'm not sure if it did anything... definitely nothing dramatic like some here have posted... but it DID drain my bank account - THAT is for sure haha

My MGD seems to be driving me the most nuts lately, and funny enough I wonder if the serum has anything to do with it. I've been on it for 6 weeks and for some reason the last week my eyes have been burning more than they used to.

Well, is there any chance that other things might be worsening your MG's?
Are you watching TV in the evenings (vs. just listening to it with your eyes shut, peeking only when absolutely necessary to understand what's going on)
Are you on the computer much? (I limited my computer time to 15 minutes per day tops for months after my eyes went to hell in 2009... I didn't feel like my eyes would recover if I stressed them more than that)
Are you wearing moisture chamber glasses during all waking hours? (if not, then start, and see what happens)

It's possible that day-to-day things you do are just too much for your eyes right now, and your MG's are either staying the same or plateau'ing because the irritations of daily life are just too much for your eyes in their present state... It's possible that if you go all-out in babying your eyes for a few months, they will claw their way back to a better state, and then you can ever-so-carefully add more of those irritating things back to your life (TV watching, reading, more computer time etc)

And then again, maybe Restasis and serum really are doing nothing for you... but before deciding that, I'd look at whether or not there are any other lifestyle factors that I could modify first in case those lifestyle factors are overwhelming any help that the serum and other treatments might be providing (remembering these lifestyle changes are not forever... but that this is war, you must win, so you'll take drastic measures in the short term, if that means that you'll get ahead)

All in all, I'm trying really hard to keep a level head.

Good... keep up the good work! And if you still are reading horror stories on here, maybe for now, discipline yourself to ONLY read stuff on here that is either a) positive feel-good stories of overcoming this or b) threads that might offer useful info on treatments an/or making the treatments work for you .... I only say this because I remember feeling so horribly depressed back in 2009 over my eyes, and yes, for a time, I'd purposely look for suicide threads and all kinds of depressing threads (I told myself it was comforting to know I wasn't the only one depressed over this, but in hindsight, it wasn't productive)... Eventually, I started only looking at positive threads, or those detailing treatment options, and that was a good move I think.

[patientpatrick]

just reached out to my doc to see a allergist, we'll see what comes of it. What would confuse me most though is that if it were an allergy, than i would have had this problem pre-lasik. And prior to making the biggest mistake of my life I never had dry eye issues except when i was a teenager and wore my contact for too long.

[Jade]

Hi Patrick
Everything you posted about wondering if maybe the serum is causing more mgd and why would an allergy be responsible for severe dry eyes caused by LASIK are all correct. Go with your common sense about what is hurting or helping your eyes. You are ultimately the best judge of that. You're on this website to get support from others going through a similar condition that is rarely heard about anywhere else. You're also here learning about treatments other people have tried and what kind of results they've had. Suicidal ideation is sometimes part of having chronic eye pain. It's the pain, not a personal failing of yours and it's not caused by reading other people's stories.
I hope you find some relief soon.

[bunnyrabbit123]

Patrick,
I've had dry eye for about 3 1/2 years now. I'm plugged, cauterized and I've been using restasis for about 2 years. I believe IPl really helped. My glands were very blocked and warm compresses didn't help at all. It took 4 treatments to notice a difference, but I think it's worthwhile. You can also consider lipiflow or probing, just something to open those glands. I'm still dry and use drops several times a day, but the constant burning is gone and I can drive and read again. I hope this helps.

[patientpatrick]

Thank you for your reply Jade. I'm trying to keep my head up.

bunnyrabbit, where did you have IPL? was there anything specific about the treatment that made it successful for you? I live in Southern Ca and there are 2 Drs that are somewhat affiliated with Dr Toyos.

[Guest]

just reached out to my doc to see a allergist, we'll see what comes of it. What would confuse me most though is that if it were an allergy, than i would have had this problem pre-lasik. And prior to making the biggest mistake of my life I never had dry eye issues except when i was a teenager and wore my contact for too long.

I was like you... never had dry eyes prior to LASIK, unless wearing contact lenses... made this outcome all the more shocking to me!!!

It can't hurt to look into the allergy thing... granted, if you had zero issues that could possibly be allergy-related prior to LASIK, that probably lessens your chances of it being an allergy... but you never know, so you might as well get tested, if for nothing else but to rule this out.

Another thing to consider is the possibility of ocular rosacea, since it's possible to have it with zero facial symptoms. Could be the LASIK induced dryness tipped you over the edge into a symptomatic state... or maybe not. But still, another possibility worth investigating. If you investigate this route (and I think it's worth doing, just in case!), consider Brady Barrow's book, Rosacea 101 - he lays out a rosacea diet in there to try for a month and see if things improve - that's what tipped me off to my own issues with food - wheat is the biggest one for me personally, but I do have other, smaller, contributors that I have to be careful of. (Disclaimer - I'm not endorsing everything he says in his book, but having him lay out a sample meal plan that enables one to have a comlete menu for what the heck you CAN eat on such a restrictive diet for a month is enormously helpful... that alone was worth the price of the book for me!)

An additional point about the Rosacea diet is that it is also, in effect, an anti-inflammatory diet - it is extremely low in carbohydrates, sugar is off-limits etc - so if it helps you, it may also be due to the anti-inflammatory effects, rather than ocular-rosacea related... all factors worth considering. In any case, if you notice improvement on any diet, it gives you a starting point to start experimenting in order to find out what you can eat without worsening your eyes.

This diet stuff is not anything I would have considered prior to my own experience... but seeing what a dramatic change dietary changes made for me gives me hope that maybe it will be helpful to others who have tried everything else with no success.

Also, I see that you live near Dr. Toyos... that's awesome for you if you end up pursuing the IPL option... you never know, maybe that will be the thing that gets your eyes on the right track again

Lastly, please do buy one of those high-powered magnifying mirrors so you can see your own MG's... I suspect most dr's won't want to see you every day to see what effect your previous day's diet had on your MG's hehe ... so seeing them for yourself give you valuable insight into what is going on and when it happens.

Man... I must sound like such a granola hippie going on and on about the miracle of diet lol I know it won't work for everyone, but after trying so many things and FINALLY finding something that had a dramatic positive impact for me, well, I just hope this gives others hope that maybe, just maybe, there is still a solution out there even if all mainstream treatments haven't been enough.