Requesting help/answers please

[Edan]

Hello,

First, I need to explain that I am writing out of sheer frustration/depression, so I hope that I explain myself correctly.
In my 61 years I have been through a few challenges in my life. I came close to dying from two different blood clots in 1971 and 1974. I found out I had cancer in 1994 and had 13 surgeries in the next 9 years. One was to remove the cancer, the rest were to correct the damage the chemo had done or to improve my then current situation. The reason I have stated this is to try and show/explain that I have fought for myself when the going got a little rough at times.

Now, the reason that I am writing.
I have had dry eyes/cornea erosion’s for roughly 12 years but the last 3 years the problems have gotten progressively worse. This last winter for example, November 2014 thru April 2015, has been a nightmare. Starting in November, I would only sleep for approx 1 to 1.5 hours at a time due to eye pain. Upon wakening, I would generally walk a big circle in my house for 10 to 15 minutes to try and talk myself into ignoring the eye pain, and then I would put in non-preservative drops and try to go to sleep. After falling asleep, I would again repeat the above until I could not stand it anymore and get up and get dressed and try to do something. I do not remember very much of November thru February as this was the worst times. No, not every single night was bad, but 70 to 80% of the time was as I have stated. When I told my doctors that my bad nights were when it was the coldest, they just stated that “weather” has nothing to do with my eye problems. On one of my last visits for cornea erosion’s in both eyes, I was told by a tech that I “needed to toughen up a little and accept the fact that this was a problem with someone my age”. When I try to explain that my concern is my lack of sleep, they will generally stop me and state that they are eye doctors and they do not deal with sleep problems. To date, the doctors have stated that they have done all that they can do for me.

For the first time that I can remember in my life, I feel like I can not go on. I honestly don’t think that my body can survive the next winter, considering the strain lack of sleep puts on my body and my current medical issues. I recognize my current depression/attitude is probably from lack of sleep, but I am struggling to fight any longer. I need some answers to fight, so if anyone here can help, please, anything that I could research or follow up on would help me tremendously as I have ran out of things to try. Any reply’s to the following two questions would be greatly appreciated.

Does normal dry eye cause severe eye pain that wakes you up at night?

Does anyone know of any medical institutions doing any research concerning my above stated problems?

I live in Oregon, but I might be able to travel to other states if they are not too far away. I am on SSD so my income is limited.


Thank you for any suggestions that you may offer.



Upon re-reading the above, I realize I have left out some important information, so I will just add a few details:
In all I have to date seen 5 doctors, 4 eye doctors and an allergy specialist.
In the past, my winters are bad with eye pain during the cold weather while during the summer I generally have only minor dry eyes.
Insurance does not cover restasis, so I have never tried it.
Punctal plugs were not helpful. They just caused excessive tearing in one eye.
My eyes have developed a sensitivity to preservatives in eye drops, so I primarily use preservative free drops. The main exception to this is that I use a gel when I go to bed to help prevent the cornea erosion's.
Sleep mask do not help. I have even, as per one doctors request, taped my eyes shut at night to make sure I was not opening them during sleep. None of the doctors have seen any indication that I am opening my eyes at night.
Fish oil does not appear to help. I have tried 3 times with different brands, the longest being for approx 18 months.
Flaxseed oil does not appear to help. I have tried using this twice, the longest time being for approx 14 months.
Humidifiers can give me brief temporary relief, but due to my allergy’s and low at times immune system, I have been advised not to use them.

[André Pereira]

Edan,

I'm not the most technical of this forum, but I will say a few things.

You said that your eyes get worse in winter.
My eyes get worse in winter just due to dry air.
I don't know if this is the case because I don't know where you live.

The first new thing I would try, in your case, is the autologous serum eye drops. He helped me in pain. And help me recover the erosion when I expose to air conditioning.

If your skin is tough, you can try some shade to sleep with your eyes in an moisture Chamber. As onix shield.
I use swimming goggles barracuda b300 to sleep. The big problem is the adjustment. If you tighten too much, get red marks. If let loose, does not protect your eyes.
Perhaps your eyes hurt by lack of moisture.

I couldn't understand if you know what is the main problem of your eyes.
Aqueous deficiency, oil. If you have any illness that may have triggered the problem.

Give more detail about your condition. It is easier to help.

As for the doctors. That's the way it is. It takes time to find someone to help us. Try to find someone who lives in a region next to his to ask.
Alias, tell us where you live.

It is quite difficult to face our problem. Is painful, no one understands. Here you can get some help and understanding, so stay strong to face the next challenge.

I assure you always have someone around to help you when you need it.

[DryMichael]

Hi Edan,
I think your eyes might be worse during the winter because of all the heating and dry air. Try to sleep in a room where the temperature is not high, put some humidifier there if you can and let some fresh air into your room before you go to bed.

Andre is right, we need to know more details about your dry eye to be able to help. Do you have MGD or tear deficiency?

[Edan]

Thank you both for your replies.

After all these years, and doctors, all I have been told is “It is just dry eye”.
This is the reason for my frustration. I can fight something if I know what it is, but I keep getting told it is a “problem that a lot of people have”, and so far they all repeat the same thing. That is to try warm compresses, fish oil, a routing of artificial tears, sleep mask, etc. When I try to explain I have tried all of their suggestions, they will either say to try them again or say that there is nothing else they can do.

This is why I requested if anyone knew of a medical institution doing any research for these issues. I hope to find someone who understands how painful and disrupting this can be in someones life. I have lost any part time work that I had due to this and most of the time I stay indoors due to light sensitivity.
When I have eye pain, it seem that no matter what drops I put in, my eyes still feel “gritty” and dry. When I do get the cornea erosion's, my eyes are generally in this condition.
Most of the rest of the time my eyes are dry, but my daily routine of artificial tears gets me through the day.

For the last approx 20 years, I have not read during winter as I normally would. It is too frustrating due to blurring of the words. I actual just started reading as per my normal schedule a few days ago, so this is about the time that my eyes clear up.
In the past 20 years I have lived in two places. I state this as it seems to me not to be an environmental issue. (mold, etc) During these 20 years I have taken 3 vacations to southern California. These were in November, May, and August of different years. While the eye problems remained, they were mild during that time as I remember.

I keep the heat/air conditioning vent closed in my room where I worked and slept and I am careful to sit as far from any vents when I watch TV. I wish I could open the window in my room as suggested, but the neighborhood has gotten a little rough and it is not safe to do this.

Andre:
You mentioned your eyes get dry in the winter also, but do you also have severe pain with this?
Also, the eye drops you mentioned, is this a prescription as I have not seen anything like this in the stores around here?
Sorry, I do not understand what you meant concerning the goggles. I have tried fitted sleep mask before, is this what you are referring too?
During my chemo, the doctors told me that due to my type of cancer, that they would have to give me “massive dosages” of the drugs. They stated at that time that they would probably cause eye problems later on, but my recollection on this was that the problems would be cataracts, due to the steroids, and glaucoma from the other drugs.
You asked where I live. I live in Oregon, specifically the south west part of the state.

Again, thank you both for replying to my request. I hope I have not left anything out that you suggested. As I stated, I am tired and worn out most of the time from lack of sleep and I miss things at times.

[André Pereira]

Edan,

Yes, my eyes were burning too much. And I also had a pain sensation as if something was crushing my eyes. Hard to explain.
But all this is due to low air humidity.
Try to buy a hygrometer to monitor the moisture from the air and see how their eyes react variations.

The drops of autologous serum is made with his own blood. So you won't be able to buy it at any store. I don't know how it works here in the United States. Here in Brazil a doctor gives me a prescription and I have to travel 90 miles to São Paulo to collect blood and then a lab makes the drops for me.

There must be a doctor in your area who work with it.

About the masks of sleep. Each person adapts to a kind of mask.
I tried the tranquileyes (http://www.dryeyeshop.com/tranquiley...-kit-p356.aspx) and didn't fit in. I can't sleep with anything on the eyelids.
You have to be attentive to every detail, because that makes a difference.

I bought a Barracuda swimming goggles b300 and sleep with them. For me it's great, because they fully cover my eyes. The only problem is the careful adjustment of them. If I sleep a day with them a little loose, no longer work.

A user posted a topic about a homemade mask. Take a look at.
http://www.dryeyezone.com/talk/showt...mber-home-made

Each person will adapt to a kind of mask. But I think they are super important to our eyes at night. Especially on days with low humidity in the air.

About the doctors. I saw some 20 doctors. Only two of them have helped me.
It is important to find someone who understands our need for periodic monitoring. The doctor who helped me didn't have a great knowledge about my problem, but he always listened to and accompanied me on treatments that I found here on the Forum. Maybe you need a few more queries until you find a doctor who can help you.


Another thing that is super important and I forgot to mention.
The moisture Chamber goggles.
As our eyes are not well protected by the tears, we need to protect them the most possible time.
The glasses protect our eyes and help to maintain moisture.
THEY ARE ESSENTIAL.
http://www.dryeyeshop.com/dry-eye-gl...asses-c71.aspx
I really like the Wiley-X (this link is for thin faces).
http://www.wileyx.com/EcommSuite/Pro...G&ItemCode=691

As they have the black lens. Will help you with photophobia too.
You can buy one with the transparent lens for the night.

Something you can monitor also is their food.
There are some tests to see if any kind of food makes you evil.
It may be that some food will help worsen the situation of their eyes.
I follow a very strict diet and was great for my eyes.

One of the big problems is that every dry eye has its peculiarity.
So what works for me, may not work for you.
I always had the thought to test everything that was potentially dangerous for me. One time we found something that helps us.
If I'm going to try something a little more aggressive, always have the accompaniment of a doctor.

You have glaucoma or cataracts? or some other problem?

Try to read about your problem. Here in this forum there are many topics about it.
You may end up discovering something useful for you.
This is a problem and a solution, since generally computer usage worsens our eyes. But there's no way, we have to learn about our problem to find solutions.

Another thing. You should do some tests to have data on their eyes.

Schirmer test: That will measure how much water your eye produces. It can be made with or without anaesthetic eye drops. I suggest you do both, on different days.
With it you will know if you have aqueous deficiency.

Meibomio glands: A doctor can do the expression of your glands and tell you how is the secretion. They may be clogged. May produce little oil (my case), may be atrophied, can be ignited.
The diagnosis that, at least here in Brazil, is complicated. Couldn't find anyone competent to give me an accurate diagnosis. I just know that my glands produce little oil. So my tears evaporate fast.

Eye drops.
I don't know what the eye drops that you use. But they can make a big difference too. There are many types that can help you. Try to take a look at the eye drops without preservatives.


I think for now is this.
Just summarizing what I would immediately try to relieve your eyes.
Goggles.
Autologous serum eye drops.
Sleeping mask.

Protect and restore your eyes.

[Rebecca Petris]

Edan,

So sorry you're going through this.

Couple of quick questions and thoughts:

1. Dry eye (of whatever type... but the type matters too) and recurrent corneal erosions are two different things. Very different. They affect each other, but they're different diseases and require different treatment. You sound from your description like you have both. If you have RCE, that needs to be addressed. It is not a subtype of dry eye. It's usually caused by map dot fingerprint dystrophy or a history of eye injury.

2. The kind of pain you describe at night is what I would associate with RCE, not dry eye. (Not that dry eye can't cause a lot of pain at night. But you mentioned erosions, so that's what I would think is a likely culprit.

3. Doctors. Is any of the ones you've seen a cornea specialist? If not, or if yes and they're still saying "just dry eye" (which, I'm sorry, is a stupid thing for them to say - you need to be told a differential diagnosis not just a catchall term), you need a cornea specialist who is one of the minority - the ones that are really interested in cornea disease, as opposed to full time refractive surgeons who only deal with dry eye etc as a necessary evil. That's what I'd be looking for if at all possible.

4. You're going to get much better. Hang in there. It's going to mean more education and some serious advocating for yourself to get the right care, and it will also mean painstaking work on the practical side of things. Sometimes we can't afford to discard something just because it didn't seem to work. it's the proverbial devil in the details. Variations on the theme might make all the difference. But getting a detailed diagnosis is really important for figuring out how best to start getting stuff under control. In the meantime though, if it were me, and if as it sounds from your post that erosions are a big part of this, I would be taping my lids down (or at least the worst eye) every night. Not because I thought my lids were opening, but because it's the best way to prevent erosions - it's the sudden lid movements that trigger erosions.

p.s. Call if talking would help.

[justbob]

Starting in November, I would only sleep for approx 1 to 1.5 hours at a time due to eye pain.

My situation is very different to yours but my eyes wake me up sometimes in as little as 15 mins without pain, you must have high pain tolerance to last a hour.

When I told my doctors that my bad nights were when it was the coldest, they just stated that “weather” has nothing to do with my eye problems.

I've made my MGD worse by getting my face very cold before sleep (and it hasn't gone back), could it be the oils aren't flowing as well during the cold nights? I'm guessing you don't have heating on.

On one of my last visits for cornea erosion’s in both eyes, I was told by a tech that I “needed to toughen up a little and accept the fact that this was a problem with someone my age”.

I think doctors try the age excuse any time they have no answer, I've heard it and I'm only 41.

[Edan]

Thanks again for all the replies.
While my eyes are getting better this time of year, I still have times that I can not comfortably look at a computer screen, so it may take me a while to respond to any of your replies.

Andre:
Your description of the pain sensation “crushing my eyes” was basically what I feel at times. My eyes feel like they are “swollen” and do not fit in my eye sockets anymore.
I am checking into the goggles/mask that you mentioned.
Your comment on the doctors reminded me how important it is to “not give up” and to keep trying. The last few days have been a little rough and this got me back on track.
I have looked at the “air shield” type of glasses and I will probably try these when I can afford them. Up until now my main focus has been to get a good diagnosis, and this has taken up most of my extra money.
Thank for the comment on food intake. This has been my focus as I have been changing my diet these last few years. I do research when I can and I have been able to talk with a few local nutritionist.
I do not have glaucoma and my cataracts are very small at this time. The doctors had warned me to watch for these due to my heavy doses of chemo.
You had mentioned a “schirmer test”. I do not know if this is what I had, but I think it might have been. The doctor put a small strip of paper in each eye and had me close them. After waiting a few minutes, I think, the examined the papers. All they said were it showed that I had dry eye. I saw the papers and they were wet approx 1/8 of an inch. When I asked how significant this was, he just repeated that my eyes were dry.
The drops are the only way that I make it through the day. I have developed a sensitivity to any drops with preservatives and the only one I use with them is the gel at night.

Rebecca:
My eye erosion’s started after my surgery for droopy eyelids. I am not saying this is what caused it, but I have talked to more than a few people who had erosion’s after their surgery. The doctors who I see for the erosion’s states that “sometimes they just happen” and that it doesn’t matter what the cause is. My erosion’s happen in the winter, approx 5 to 10 per winter.
When I have the eye erosion’s, the pain is, for me, a sharp, tearing pain. The other pain is as Andre has suggested, more of a crushing pain.
One of the doctors is a cornea specialist and I will be seeing him again in a couple of weeks. I definitely have some specific questions for him on my next visit. If I can not get any answers with him, my plan is to check into a few doctors in Portland Oregon. This is a 490 mile round trip for me, but at this point, this is all the options that I have.
Thank you for your thoughtful encouragement on “hanging in there”. This forum has helped me a lot and I have learned more in 4 days than a couple months of research on my own. Concerning you statement on taping my eyes shut. My last erosion was on April 13. This was during a period where the doctor had requested that I should tape my eyes shut to see if I was opening them at night. Approx 2 hours after applying my nightly gel and taping my eyes shut, I was awoken buy the familiar tearing pain.

Justbob:
Thank you for your comments.
I am confused as to why the doctors have so far not acknowledged the relationship between cold, dry, winter days and humid summer days. I remember feeling rather stupid when they just looked at me like what I had said didn’t make any sense.

Again, thanks everyone who took the time to reply.

[André Pereira]

Some people may find it too early now to try this, but I think you should ask your doctor about the autologous serum eye drops.

Makes a tremendous difference, even more when we have erosions on the cornea.

Good luck in this new phase.

[Daniel2]

Some people may find it too early now to try this, but I think you should ask your doctor about the autologous serum eye drops.

Makes a tremendous difference, even more when we have erosions on the cornea.

Good luck in this new phase.

I second this.

[PotatoCakes]

Pm

I have sent you a private message.