Scared and very depressed

[Cali]

I am in the scary state. My LASIK induced dry eyes have suddenly become unmanageable (after about 8 years). I work in technical marketing but now cannot stay on the computer for more than 15 minutes without getting that ghosting film across my eyes (plus the burning, stinging, etc). I've seen a cornea specialist, tops in their field. Even mentioned on Dry Eye Talk in Plug a Doc as a good one. I waited 35 minutes in the patient room, alone in the chair, eyeing the heavy equipment, feeling nervous yet excited - he may be able to help!

He was in and out in about 8 minutes flat. Told me I had cornea desensitization in my right eye (no feeling whatsoever). Options, Restasis, plugs, cauterization. Then he was gone. I felt numb. I had a list of questions that I showed him right before he walked out. He read them down the line, yes, no, no, yes. Questions like are my lacrimal glands functioning, am I prone to glaucoma, what is causing this crawling feeling, etc. He had better things to do, he was in a hurry.

I hate that I did this to myself. I hate myself for that. I hate that the FDA approved this procedure and posted the info on their site. I feel naive to think that they were looking out for the public and not bought off by manufacturers. I hate that I trusted my "doctor." I now have absolutely no trust in doctors and the thought of plugs or cauterization in my mind is adding insult to injury. I feel stupid. I have no trust in myself.

I know I'm depressed. I think I'm in the process of having a nervous breakdown. I can't sleep. I can't eat since seeing the doctor about 5 days ago. I can't describe how I feel. It is like being in a vacum, a place of nothingness. I know this is taboo to express, but I don't want to live - I don't want to die either. I just don't want to "be." I'm uncomfortable writing this or expressing this feeling - I know it's consdidered taboo.

I believe this will pass. Just have to make it through. I have an appointment with a corneal neurologist on Monday and a psychiatrist on Tuesday. It's just hard right now. It's hard minute by minute.

[Rebecca Petris]

Cali, just saw this in passing and don't have time to reply in full at the moment but I just wanted to give you a big virtual hug and say I'M SORRY you're going through this. Breaks my heart to see people blame themselves for what you are in no way at fault for. I'm so glad you reached out to share how you're feeling. Nothing taboo about depression and even suicidal ideation on this site: It is vital to have some safe place to be honest about how you feel and frankly a large % of members here have been 'there' and will thoroughly understand where you are coming from.

Hang in there. Reach out for tips specifically about setting expectations for that neurophth appointment and even psych appointment. Lots of people here have walked these paths and truly understand.

[skygoddess]

Cali, Ditto to Rebecca's post. I remember breaking down in the pharmacy parking lot. Pharmacist found me sobbing so hard I couldn't even drive. Hang in there. Don"t be to quick to brush aside the options your Dr gave. I have had some Doc's with good bedside manner, but they were in way over their heads. Others who had so little compassion, they seemed almost autistic, but knowledgeable. Its a very lucky patient who finds a great Dr with both knowledge and a good bedside manner.
Cauterization was a lifesaver for me.

[SunshineinCalgary]

Hi Cali,

When I see people losing hope, my heart aches and I just can't be a bystander. I went through the same struggles many many times. IT's so real! But please don't give up!!!! You have survived the last 8 years !!!!!! Is there anything different that you did recently? I know how you feel because I work full time too and it becomes a constant struggle between health and work. I had the same experience about the so called "specialists" too. You waited 3 hours and you saw them for only 5 minutes. YOu had to summarize your life history quickly and when you started asking questions, they were about to leave.

And Cali, it's totally legitimate to express your sadness and anxiety. It is not a taboo. We care, we really do..... I hope you're feeling better! Lots of love and care from Sunshine I don't sing because I'm happy, I'm happy because I sing

[Cali]

Thank you. I do need help. I don't know where to turn. I'll go on the general forum but your responses do help. Rebecca, I just read your April 26 blog posting about plug complications. I think it would be foolish to disregard the 7.23% complication rate. I did read somewhere that you have accepted your condition and no longer seek out a cure, but are comfortable in your scleral lens. It seems like there are limited options: Restatis, plugs, cauterization, serum drops, scleral lens. Part of my problem right now is that I am in the dark hole, am having panic/racing thoughts, not sleeping, etc. I know I'm not capable of making good decisions right now. I am single so am on my own in this. I keep wanting to make doctor appointments but after spending time here on Dry Eye Talk and reading numerous articles, I think I have to accept this and choose from the options above.

[Cali]

I am losing hope but it's at it's worst right now. I am breaking down now. I know I'll soon be too tired to cry and my body can't handle the racing thoughts and heart much longer. I am frantically reading almost every post on this site, sometimes it makes me more scared but then I do know that there are others out there that are no longer on the boards because they are better or found a way to comfortably cope. I so appreciate each of you taking the time and care to write back. Hopefully you can imagine how much that means to me personally, right now in this moment.

[PAllen]

Cali, first of all, there are lots of things to try: humidifiers, goggles, warm compresses, cold compresses, fish oil, to name a few. some trial and error and you can find some relief. keep reading posts for different ideas. Secondly, if you're unhappy with your doctor, see someone else. Don't be afraid to walk into the clinic and tell them you need to see someone TODAY. i did exactly that. And, finally, You joined a great community of caring people, so you're not alone in this.

[jax8it]

Cali,

Your statement you don't want to live -but you don't want to die, you just don't want to be really hit home with me. I am five months and struggle with those thoughts everyday. I admire you for making it 8 years with this. That is truly amazing dealing with this disease. You are not alone and you have come to the right site for support. There are so many compassionate and caring people here. Sorry I can't offer more support, but just know many people have felt the same way, currently myself included. Please don't feel bad about opening up on here.
All the best,
Bianca

[PAllen]

Cali, the racing thoughts, the sleeplessness. Maybe there's something else going on, like a hyperactive thyroid. my thyroid was hyperactive and i went a long time without REM sleep, which left me exhausted, sleepless, and my thoughts raced as you described. maybe an appointment with your regular doctor to look for another condition and also to provide guidance and support with how to make progress with an eye doctor?

[sazy123]

Hi Cali, you and i have both had dry eye for 8 years now, i remember you from the beggining. I feel simular to you right now, i have hit a rough patch. I moved to the US and my husband left me, so my coping skills went down hill, i can no longer cope with my eyes becuase i dont feel like I will have what i had with him again or be happy like that again. I was so happy with him, he gave my life purpose, i know that sounds bad, but when your eyes feel like hell and you are limmited and alot of your enjoyment is taken away, having someone like that makes up for it. Now believe it or not, my job is the only thing keeping me sane, because it keeps me busy and i feel productive. In going to be in pain either way, so i may as well work, and this jo is soooo easy, minimal stress. It makes me sad though that i know i wont be able to do nursing school with eyes like this, unless i get some improvement. I am trying Kinerette eye drops at the boston mass ear and eye. Maybe this is an option for you? It might give you hope! Its given me some hope, because the meds im on- restasis, doxy and steriods arent working- no surprise there!!

Where do you live? Im in PA.

[magoo]

Cali, a few months ago when I left my "ophthalmologist's" office, I broke down in the hallway leading out toe the waiting room. I had been brushed off as he rushed through my appointment and out the door. I had to sit for awhile in the hall to gather myself, as the assistants etc. stared.

But, since that time I have improved! For the first time in years and years I am better. From reading here and experimenting with many different treatments I have found relief. Not total of course, but so much better. This is what has helped me: Added flax oil capsules to my fish oil regimen. I had taken fish oil for a few years but it seems adding the flax oil increased the quantity and quality of meibum.
Then, about a month ago I asked the doctor for a prescription for doxycycline. (He said, oh for the rosacea - since he was already on the way out the door, I didn't bother to correct him - he wouldn't have paid any attention anyway). For the last two weeks I have noticed a marked improvement in the way my eyes feel. I am much less depressed and feel quite hopeful now.

I have no choice in ophthalmologists as I am in an HMO and the other ophthos are even worse about dry eye, but by doing my own research, mostly here, I have hope now. Before, I was really struggling as the impact on my life has been severe and I have not found a doctor who cares about dry eye's impact on quality of life, they seem to care only what their instruments can measure and act as though you are wasting their precious time if you try to impress upon them just what it feels like to be the one inside looking out.

I have in the past been terribly depressed also, but have made it out the other side! Keep soldiering through and you will, also.

Lynda

[kevino]

Wow, lots of responses. I read the first post yesterday but couldn't think of anything positive to say.

Here's my story:

I'm a veterinarian, 28 years in practice. Anyone old enough might remember James Herriot and the TV show or books starting with All Creatures Great and Small. These were the true stories about a mixed animal practice in rural England. That was my goal, to have that type of practice.

And I had that. Then sixteen years ago I had LASIK. That ended farm calls because I could no longer drive at night. So I became a small animal practice and spend all day looking at vomiting dogs or cats with diarrhea. Eventually I had PRK hoping it would solve the starbursting and haloes but it didn't. I tried RGPs but they didn't help enough that I could drive at night. Plus I couldn't tolerate them more than an hour a day.

Eventually I got scleral lenses. I'm wearing them now. They give me much sharper vision than I get with glasses but they don't solve the starbursts.

Unlike the OP for me pain was never a factor. I function quite well as long as the sun is out. I have a program that tells me sunrise and sunset any day of the year. If I get a late-night emergency call my wife or daughters can drive me to the clinic. But it's not the life I envisioned. I haven't given up but am running out of options.

The last was a couple days ago when the 4th second-opinion doctor suggested I go back the clinic that did the origional LASIK.

kevino

[patrick]

Hello kevino,

I am quite a bit younger than you are,but i certainly can remember the james herriot tv show!
I think it was somewhere in the mid 1970s that my parents used to watch it a lot and i watched it with them as a child not understanding a thing about the plot. I remember though i always did like the funny old car this veterinarian drove. Wasn't it some pre war wolseley?
Since you are a veterinarian i am curious about your opinion on the use of cyclosporine with humans.
I know in the usa this is commonly used and prescribed for people suffering from aqueous tear deficiency and as we all know with various succes rates.
Here in europe it is not prescribed at all for dry eye issues in humans. I believe it is not even approved by the authorities,but i am not sure about that.
However, it is used by veterinarians here to treat KeratoconJunctivitis sicca with animals and the percentage of cyclosporine is a lot higher (2%)! This is supposed to increase the tearvolume in the treated animals.
Could the use of this considerably stronger version of the medicine be possibly dangerous or cause some undesired side effects?
I can imagine it is a lot more effective than the 0,05% version now being offered by allergan under the brandname restasis.

Patrick...

[Tanner]

Cali,


I am so sorry. Pallen is right... you need to have blood work done and check on auto immune and thyroid problems.

[chamby1]

Similar experience...

Cali~
I just joined this forum, and I went to post my first post when I saw yours. I absolutely know the feeling, when you want to scream because no one is giving you answers, no one is helping you, and no one else gets it. I wanted to smack people when they asked me, why are your eyes so red? I think just about everyone on this website has felt that way at one point, with crap doctors who don't care. I have a very similar story, Lasik in '99, severe dry eyes after, worsened vision 7 years later with glasses/contacts, punctal plugs, cautery, Restasis. I just got my first pair of scleral lenses last week. Just keep seeking out better doctors, better treatment. Try the little things, too...putting your drops in the fridge, the little rice bag heat pack on this website is awesome. Bed Bath Beyond sells great humidifiers (get your 20% off coupon). I've heard goggles work well at night but I kinda sleep on my face so I can't wear them. If I could do it all over again, I would just go straight to the scleral lenses. They are expensive, but after years of other treatment, I could have saved myself tons of $, frustration, doctors visits, etc, if someone had said, these really work, just do this first. Chin up. It gets better. Go find a punching bag/gym/sit in your car and scream/eat a bunch of chocolate/run 5 miles(I have done each and every one), try to get out that anger and frustration and fear, and know that it gets better. BTW, find a better doctor. They're out there. Usually younger ones who haven't been jaded and corrupted by medicine yet.