I am so frustrated! Please help.

[MyDryEyes]

I just need to get this off my chest a bit. The eye pain has really been kicking my butt the last couple of weeks. I am so tired and exhausted. It is so hard to get help for this from the medical community and it is frustrating. I just can't believe that my life has been reduced to just getting through the day and managing chronic pain. I am 32 years old and had life by the tail. And then I had refractive surgery 9 months ago and WHAM!! Everything in my life is different. I have tried to stay positive and maintain hope that I will improve, maybe even get all the way better. But after 9 months of being bone dry, it is hard to maintain hope.

I just had my upper tear ducts plugged two weeks ago and it has done nothing. In fact, the eye strain and intense grittines and pain are back in full force, like back to the early days. I am assuming it is because I just don't have much tear film and that my lower plugs are starting to dissolve. But, of course my eye doc can't determine if the plugs are still there because they are buried. Super. I just keep getting in deeper. Any tips for communicating with doctors so that it is an effective conversation?

I have asked for this many, many times already from this community. But I need more words of encouragement and a push in the right direction to keep me going.

Thanks!! MDE

[kimby2007]

Frustrated

Hi My Dry Eyes:

I am also quadra plugged with no effect so I know what life can be like. However, your still relatively early on with your dry eyes so real improvement can and will lie ahead. It is ok to need encouragement, we all do. Best wishes,
Kim

[rhad]

Yeah, I know what you mean, the medical community doesn't help much....try being 20 years old with dry eyes....life has only begun....

[dianat]

MDE,

You bring up an interesting point regarding communication with physicians...particularly eye docs. It's bringing to mind a speech made by an eye doctor at our Dry Eye conference a couple of years ago. There was a doc who discussed this very thing...I can't recall her name, but surely Rebecca does. Perhaps the "transcrips" from her discussion might help you in your need to maximize your time with the doctors.

The most I can remember from her speech was how terribly interesting and informative it was, and that she admitted (being an eye doctor herself) that eye docs generally don't understand pain very well.

Anyway, I'm curious if Rebecca might have a CD of the presentation to share with you. It's worth asking her. There were some interesting things that came from that.

I beat my head against a wall many times sobbing trying to persuade eye doctors that mine wasn't just your typical, run-of-the mill case of dry eye syndrome. I stood one my head explaining that the pain and emotional taxation was affecting my life dramatically. Still not sure if they ever really got it.

The pain doc I saw was likely the only one who did. I swear to you he could actually see my pain. He worked with me on different theories, health recommendation, depression drugs and pain meds in an effort to get me feeling better. He was willing and able to try absolutely anything for me. That's the kind of support you need right now.

If you cannot find an eye doctor who can do this for you, consider seeing a pain specialist. It was a good move for me at the time. It really was.

Diana

[MyDryEyes]

Diana,

Thank you for the suggestions! How did you track down a good pain specialist? Do they know much about eye pain and dry eye syndrome?

I would love to get a hold of that CD. . .

Thanks! MDE

[dianat]

MDE,

It wasn't difficult to track down my pain doc. I would suggest asking around of people who may have needed one. I always appreciate a personal recommendation from someone. I actually didn't have anybody here to ask so I opted to make phone calls.

I believe after my first call to the first pain clinic I found in the phone book, I was sold. My intent was to just get a feel for the practice based on who answered the phone. I proceeded to give a quick review of my story, and bluntly asked if the doctor was caring, patient and understanding of someone in pain and experiencing anxiety.

The woman from the staff that I spoke with probably spent a half hour talking to me, listening to my woes and recommending that I come in for a visit.

Truth be told, I was extremely depressed at the time and really just needed a doc to be nice to me first, and hopefully offer some options for the burning pain. At the time, there was a lot of chatter about Neurontin for eye pain. Not every doc can prescribe this med, so I made sure the pain guy could do that for me.

Quite honestly, the doc really didn't know much specifically about eye pain and burning. But, he was a great listener when I needed one and was willing to try whatever came to his mind or to my attention on the dry eye web sites. He was a really interesting, thinking, left-field kind of guy. He also understood depression well and could treat it and was more open to trying different doses and drugs...far more so than my family practice doctor.

The staff at a pain clinic are a special bunch who never rushed me during an appointment and went so far as to hold me as I sobbed in the grips of one of my worst and most memorable bouts of anxiety (complete with constant pacing, insomnia diarrhea, lack of hunger, crying...)

Ultimately, my pain doctor didn't exactly solve my pain issues. The reduction in burning I experienced may have been due to blood serum or simply time. My pain doc is indeed the one who encouraged me to try the serum, but my ophthalmologist actually prepared it.

My pain doc did prescribe different drugs for me, one that did help when I felt I just couldn't face the night without help. But, it was really not a permanent solution. Looking back, I think the time and understanding I got from that doc was really important. He entered my life at a time when I absolutely felt I needed to be doing something...anything...to help my condition. He kept me in motion, brainstormed and worked on my depression. My time as his patient was a very, very important step in my mental and physical recovery.

D

[carabiner]

Hi MDE,
I'm very much in dispair today also, and it does help a little seeing that I'm not the only one busy with this fight.
What I'd like to share is the fact that in the end, the glasses I'm wearing are the best help I can get. I made them myself, nothing more or less than a moisture chamber pair of glasses.
Just buy any confection glass you can, make sure you get hold of the right kind of plastic (I'm fortunate to work in a hospital - on the surgery room they have these facial masks to prevent blood getting into eyes).
Get it cut into the right shape (that's the most difficult part off course) - you can start by taping the plastic to the outer margin of the glass and slowly cutting away until the fit is right.
There are two ways of fixing it to the glass. If there's space between the glass and the metal you can put the plastic in between. Or you can glue it inbetween the glass-metal border with superglue (be carfull not to spill it!! thats also difficult!)
The glasses I'm wearing are a little more rounded, this gives me less problems with the rims.
When anyone has questions about it feel free to PM.
Good luck - I feel with you

[calli66]

carabiner-

Can you post a picture of your moisture-glasses? It would be good to see how you made them.

Thanks

C

[Majorglory]

Hi Mydryeyes, Im really sorry to hear you're through such a bad dry eyes period..

From the other topic I remember you underwent prk for a large prescription and in these cases nerves always take longer to heal, also you're a relatively short time out of surgery so there's really much more than a hope that your nerves recovery is still slowly going on. Final nerves recovery after refractive surgery in 6 months has always been claimed but recent studies prove final re-innervation can actually take years and there's a lot of anecdotal evidence of people getting significantly better at 15+ months.
I dont know if you tried autologous serum but if I were you I would look into it as these eyedrops contain nerve growth factors that could stimulate your injured nerval endings to heal.
Besides being quadraplugged are you also taking restasis?

[Natalie06]

Pain Clinics

Dr. B at my pain clinic is the best thing that ever happened to me. After 13 years of undiagnosed/untreated endometriosis, he was the only one who truly understood what dealing with pain every day does to a person, physcially and emotionally. The staff at my pain clinic jump through hoops to help me when I have needed them.

I have not seen him about the dry eye/eye pain but I think I will call and make an appointment, if for nothing else, then just an MD who really understands and has empathy. Even my "dry eye" specialist does not really understand or empathize with the real impact of this...Of course, she also performs Lasik so she may have a vested interest in NOT recognizing the impact of a disease she can cause by her "other" specialty.

[carabiner]

Calli66, I've tried to upload pictures in this forum but somehow are not able to do it. I can send the pictures via regular email, but I'll need an email adress for it. Will give the upload another try at another computer anyway.

[hasan]

for my dry eyes and facial pain, i am giving all the luxuries...

Hi, MDE, keep it up.

I have very bad eyes and also facial pain along the glasses frame. The facial pain actually is a huge attention disattractor and this causes huge problem in my daily life. I am also desperate but doing everything that i can to cure it. I basically have given up every bad habit i had such as smoking, eating spicy food, surfing online, going late to bed, you name it! In order to get my eyes back, i am giving up all the luxuries i used to enjoy, now maybe even, fishing because fishing maybe exposes eyes to strong winds...God must bless a person with such a strong wil...

Thank you for reading my story too.

Hasan.

I just need to get this off my chest a bit. The eye pain has really been kicking my butt the last couple of weeks. I am so tired and exhausted. It is so hard to get help for this from the medical community and it is frustrating. I just can't believe that my life has been reduced to just getting through the day and managing chronic pain. I am 32 years old and had life by the tail. And then I had refractive surgery 9 months ago and WHAM!! Everything in my life is different. I have tried to stay positive and maintain hope that I will improve, maybe even get all the way better. But after 9 months of being bone dry, it is hard to maintain hope.

I just had my upper tear ducts plugged two weeks ago and it has done nothing. In fact, the eye strain and intense grittines and pain are back in full force, like back to the early days. I am assuming it is because I just don't have much tear film and that my lower plugs are starting to dissolve. But, of course my eye doc can't determine if the plugs are still there because they are buried. Super. I just keep getting in deeper. Any tips for communicating with doctors so that it is an effective conversation?

I have asked for this many, many times already from this community. But I need more words of encouragement and a push in the right direction to keep me going.

Thanks!! MDE

[MyDryEyes]

Thank you all for your tips, advise and words of encouragement! I definitely have a few ideas from all of you: pain management doc, blood serum and yes, I am finally going to start Restasis (this week hopefully). I need to save my eyes for the long work day ahead, so I will sign off for now.

In health,

MDE

[carabiner]

Hi Calli66, here are the photo's.
Greetings, Marcel

[MyDryEyes]

Constructing Moisture Chambers

For anybody else who is interested in constructing their own moisture chambers - I receieved detailed instructions on how to make them from an optician in NY (I am sure he is probably menioned somewhere on DEZ). He is supposedly one of the few optitians in the country who specializes in making moisture chambers. Just private message me and I can provide you with his contact information or even send you copies of the information I recieved.

In health,

MDE