Hi. My name is Sasha, and I've been suffering from what has been diagnosed as Dry Eye for almost a year now. In my estimation, my condition started back in Oct. of '04 when I developed a nasty eye infection. I was treated with antibiotic drops, and the infection seemed to subside. However, from then on out, my contacts got more and more uncomfortable to wear (note that I wore contacts for 5 years prior to this without a single problem). In February of '05, I suddenly couldn't see (particulary up close, which I had never had a problem with before). I went to an optometrist who said that I had corneal abrasions, and, hence, put me on a steroid antibiotic. My vision seemed to improve, but shortly thereafter I developed the intense pain (mainly characterized by a chronic burning/sensitivity, which seemingly is worse upon exposure to florescent light) which I have experienced since then. After that, I saw an opthamologist who confirmed the corneal abrasion diagnosis and told me, simply, to use artifical tears. When that didn't work, he prescribed about 3 different eyedrops (Volatern and some others I cannot recall at the moment), which also was completely unsuccessful. Then it was on to the steroid drop Lotemax, and then Restasis. Strangely enough, somewhere within this time frame, I had about 3 weeks of pain free days. However, the symptoms returned, and I cannot, for the life of me, figure out what I was doing differently at that time! After all of this , I returned to this opthamologist yet again, told him I was still in pain, and he promptly--at least in my perspective--seemed to "poo-poo" my complaint, and sent me away with no answers and a $70 bill. I then took it upon myself to travel about 3 1/2 hours away to Duke University where I saw a specialist for a total of about 10 minutes. She decided that my tear breakup time was way too fast, put plugs in my tear ducts, and put me on Dioxycycline (this was almost a month ago now). The plugs promptly came out, and I followed up locally with yet another opthamologist. This opthamologist did the strip test, and determined that my tear production was adequate (he seemed mystified as to why I would have received a dry eye diagnosis, although he did not do any of the other tests available). However, I insisted upon having my punctums closed surgically (I only had two done, not all four), which he did on the next day. But here I am, about 2 1/2 weeks later, still experiencing the unrelenting pain. I have an appointment with a regular MD tomorrow to see if I cannot get a refferal to a neurologist....I forgot to mention my other symptom involves painful headaches, totally unaffected by OTC pain meds, unlike any headache I have ever had before. These are not as chronic, however....I simply get them on occasion.
I AM BEGGING FOR SOMEONE'S HELP. This condition has sent me into a horribly depressive state, which gets worse and worse the more I try things that do not work. I've put on weight, had to postpone law school, and am just throughly at a loss for what to do now. Should I get an MRI? Go to a rheumatologist and ask to be tested for Srojen's? Or perhaps just give up completely? Ironically, I have cried so many tears over this. Please, please, please help me.
Oh...in case it has been hard to gather from the above info.,my current regime is Dioxycycline twice daily at 100mg per dose, and Restasis twice daily. I was also wondering how long it will take for the Dioxycycline to take effect if it is, in fact, going to work. Thank you all so much in advance for taking to time to read this. I really am at my whits end....not sure I can go on much longer like this.
Wow, I can really relate to your point of desperation beyond frustration.
Have you read through some of the threads on Dry Eyes and Corneal Erosions?
There are some good, practical ideas.
One I really liked was keeping the drops by your bed so you can reach them in the morning and put some in the corner of the eye Before opening the eye--thus preventing another Corneal abrasion.
I use the single-use Refresh Plus during the day, and Refresh Celluvisc at night.
There are some other favorite brands in these threads.
Whatever the brand, I prefer the single-use ampules that don't have preservatives.
In case none of that pertains to you, here's a hug: ((((()))))
Last edited by seriousperson; 01-30-2006 at 10:21 PM.
Thanks seriousperson. Particularly for the hug. I went to a regular MD today, and although she seemed interested in helping me, I got the feeling that she might have thought I was overexaggerating or malingering or something. She phoned the last opthalmologist I saw (the one who said I DIDN'T have dry eyes, contradicting the two I saw before him), and I guess he told her that he couldn't understand why I was in such pain. Moreover, she seemed more interested in discussing my depression then my eye problem, particulary after I started bawling in her office. I mean...what does she expect? I've had this problem almost a year now, and no one has helped me. Of course I'm depressed. Anyway, she wants me to start Neurontin in combination with the Doxycycline. She thinks it might alleviate the headaches, and perhaps the pain in the eyes. Neurontin is some strong stuff, and I'm scared to take it...it's common use is as a seizure medication. At this point I feel my only two options are to heavily medicate myself, or to live in constant pain. I feel so distraught.....
Don't despair. I have been there, and it does get better. But you've got to find a doctor who will listen to you and take you seriously.
Duke is one of the best places you could have gone. In fact, my doctor is from Duke. If you like, I can find out from him when I see him tomorrow who is the best person at Duke to see for dry eyes.
I know it is mind boggling the kind of pain you can experience from dry eyes. What I don't understand though, is why even after you have had corneal abrasions the doctors are not taking you seriously. If you get another abrasion, get yourself to an ophthalmologist who specializes in cornea/external disease. You may even want to see one anyway, because these are usually the people with the most experience with dry eyes.
It is possible that you do have enough tears, but still have dry eyes which is why the Schirmer strip test shows that you have enough tear production even though you still have painful dryness. Just to give you a basic picture of the physiology of tears, there are three layers. The watery layer, the mucus layer and the oily layer. If your eyes are lacking any one of the three layers, they will be dry. So even though you have enough of the watery layer, if you don't have enough mucus or oil, you're going to have dry eyes. This condition would come from blepharitis, or meibomian gland dysfunction. That's why your eyes could water enough, therefore making the schirmer test inaccurate. If the doctors that you have seen are *only* using the schirmer test to diagnose your dryness, then they are idiots. They need to stain your eyes with fluoroscein and look to see if there are any dry spots on your corneas. They also need to have you blink a few times while they look in your eyes and see how quickly your tears break up or roll off of your corneas. If your tears are deficient in any one of the three layers, they will roll right off of your eyes. Which is why they could be watery but still be dry.
Cauterization is good, but why didn't your doctor seem ready to do it for you? If your eyes are that severely dry, it may be the only thing that helps.
I am sort of an expert in this area, having dry eyes for almost five years now (God, I can't believe I have had it for this long!) and having tried almost every treatment imaginable. Ask me any questions you like.
The most important thing to do right now is to get yourself to a doctor you trust, who can figure out exactly *WHY* your eyes are dry. Are you lacking the watery layer, or do you have blepharitis or meibomian gland dysfunction that is causing this?
Do your eyelids itch? Do they get crusty? If so, then it is probably blepharitis or MGD. Using hot compresses two or three times a day for ten minutes or so can help unclog the glands in your eyelids.
Cool compresses will help alleviate the pain and discomfort.
Most importantly, lubricate, lubricate, LUBRICATE! Make sure you are using preservative free artificial tears such as Bion Tears (my favorite) or Thera Tears. Also, using some gel drops such as Refresh Celluvisc or Tears Again Gel Drops will help when they are extra, extra dry. Ointments such as Hypo Tears or Bausch and Lomb MoisturEyes are good to use when you go to sleep because that is when your eyes can get the most dry. (We spread tears around the cornea by blinking, but you don't blink when you sleep.) Note that all of the things I have recommended are PRESERVATIVE FREE.
You have taken the right first steps. Now you just need to find a better doctor. I'll ask mine who he knows at Duke.
Where exactly do you live? I know of a great doctor in Florida. He is the director of the cornea service at Bascom Palmer Eye Institute and he's formerly of John's Hopkins Wilmer Eye Institute. His name is Dr. Terrence O'Brien.
It is also a good idea to cover all of your bases. Get a blood workup for Sjogren's Syndrome and other auto-immune diseases. A brain MRI is a good idea also, if you are having headaches. Are you having any vision problems because of these headaches?
Thank you....no...I mean REALLY THANK YOU...for taking the time to respond to my post. When I was at Duke, I saw Dr. Afshari (she's the only female on their opthalmic staff). She has been the only doctor to do any testing for dry eyes besides the strip test. She said my tear breakup time occurs in 3 seconds, when it should occur in about 10. I've never heard blepharitis or mybomian gland dysfunction mentioned by any of the 3 doctors I've seen, although the Duke doctor did prescribe Doxycycline, which, from what I understand, is for mybomian gland dysfunction. She is also the first and only one to say anything about plugging the punctums. I think she might be a good doctor to see...the thing is, I live 3 1/2hrs. from there, and I need someone local (I live in Asheville, NC, by the way). I tentatively plan to move to the Duke area when I start law school at Chapel Hill this fall, but that is 6 mths. away, and I would prefer to have this issued resolved before embarking on the biggest endeavor of my life (i.e. law school). Let me tell you about something I heard today, though. I know someone who knows someone who apparantly had many of the same symptoms I have. Apparently a local doctor here in Asheville (who works out of the same practice, unfortunately, as that moron who only did the strip test and then told me I didn't have dry eye), referred her to a place in Maryland..."The Institute of Health" or something like that. Well, supposedly they drew her blood there and made an eye drop specifically formulated for her body chemistry, and she says her eyes have never felt better. Have you ever heard of this place? I'm thinking I might just call the doctor that reffered her and ask if he could refer me as well, although that probably means I'll have to SEE him (i.e. pay $35 bucks and waste a bunch of time just to get a refferal to the place). But if it's really a miracle cure like she seems to be telling people it has been...well....just about anything is worth uncovering that pot of gold. I'm going to try to get her name and speak with her directly, if possible.....
Anyway, thanks again. I'm starting on Neurontin this evening which the regular MD prescribed. Not sure it's the best idea, but I'm desperate and willing to try just about anything at this point! By the way....thanks to all of you for just caring and understanding...just having that small ounce of support is making all the difference on my outlook right now.
Sasha, I think I can speak for everybody who has responded to you when I say that we all do care, and we know what you are going through. We've all unfortunately been there and done that, or are going through it now. Its very sad that there really is no cure for dry eyes, rather just some treatments that may or may not work. Hopefully new treatments are on the horizon. My doctor is involved with one of the drug companies that is developing some new stuff. (I'm trying to convince him to get involved with one of the trial studies so that he could put me in it!)
I have not heard of the place that you mentioned in Maryland, but I have heard of that treatment. My doctor has never recommended it for me though, because I am so sensitive to so many things he is afraid to try it. He knows my eyes like the back of his own hand, and I trust him.
I live in NYC. My ophthalmologist, Dr. Ray Mostafavi, is from this area but he did a fellowship at Duke. He still goes down there a few times a year to teach and go to conferences. I'll be seeing him tomorrow, and I'll ask him if he knows who the current top dry eye person there is. How did you get to see the doctor that you saw there? Was she recommended to you, or did you just call and tell them you have dry eyes and you need an appointment with someone and they gave you her? I am lucky enough to live in Staten Island (you know, of the 5 boros of NYC) and have my choice of tons of doctors. Even if I don't find someone local, I just have to travel 30 miles or so to Manhattan and I've got my pick of some of the best doctors in the world. I have MS, and that's where my Neurologist is. (for some things it is OK to stay local, but not for brain problems!)
I am glad I could help you. I always like to share my knowledge. Unfortunately I learned all of this stuff by going through it all myself. A lot of it is just trial and error. But, you've got to find one doctor who will stick with you and be willing to get to the bottom of the problem, and if necessary try several different treatments. I wish I could help more.
I TOO suffer from Dry Eye Syndrome and am completely fed up with doctors. However, my last visit the doctory did NOTHING for me but told me to start taking Flax Oil. So I went out and bought the oil in the capsules and I am also using ground flax seed. I have been feeling better this week.
It might not hurt to try ( I hear fish oil is also good). Start getting those Omega 3 fatty acids into your diet and try to heal from the inside out. Other good things to start incorporating into your diet; walnuts, tuna, salmon,..... also try using a humidifier to get moisture into your environment.
Good Luck and we truly do "feel your pain" I don't think anyone that has never experienced it, can possibly know how miserable it is!
Try not to spend so much time in front of the TV or computer either.
Sasha, when I saw my ophthalmologist today I asked him if he knows who the top dry eye specialist at Duke is. He said that the doctor you saw, Dr. Afshari is actually the person who took over his position when he left 5 years ago. He said that as good as she is, the best person there for dry eyes is Dr. Terry Kim. Dr. Ray said that he is excellent, but he tends to really rush through appointments. But don't despair, because I have good news.
My doctor never ceases to amaze me with his kindness. He said that he knows the secretary there, and if you tell me when you are going and give me your full name, I can tell him and he'll call for you and tell them that he recommended you. He said they always give more time with patients he recommends to them, since he knows them so well.
So, if you do decide that this might be worth your while, just tell me your full name and when you are going, and I'll tell my doctor and he'll call ahead for you. You could also mention his name when you call to make your appointment and tell them that he recommended you. He's such a sweetie. I wish you could come here to NY and see him, because I know he would give you all the time you need and he would really try to help you. I was really surprised when he said he would call for you, but after the great lengths he has gone to for me and my eyes, and the friendship I've developed with him, I should have expected it.
So, I'll tell you his name again so you can mention him if you call to make an appointment with Dr. Terry Kim. His name is Dr. Ramin (Ray) Mostafavi. Dr. Ray for short. The last name is pronounced just how it looks - Mas-ta-fav-ee
Thank you again. I really and truly appreciate you. As it stands, I probably wont be going back to Duke. It's just too far away (at least until I move to that area), and the last time I was there, I was pretty dissapointed in the service I received. I just feel as though I was rushed through, and although I felt like she (Dr. Afshari) probably knew what she was talking about, I didn't get to spend the time with her that I needed to. Anyway, I was thinking about going to this doctor locally to see if he could refer me to this place in Maryland. If you get the chance, could you ask your doctor about that therapy, and the "Institute of Health" in Maryland? He sounds like such a wonderful guy...certainly wish I could find someone like that. Anyway, I thought I would mention that I got a call from the regular MD's office that I saw the other day. They think I might have hypothyroidism based on my blood test. I'm supposed to go in next week so they can retest and make sure. I'm wondering, if, perhaps, it might be related. I've also started taking the Neurontin. Not noticing much, if any, difference at this point, but it's too early to say, I guess. I'm still wondering how long it takes for Doxycycline to work....I read a post about a person who had been on it a year...
Anyway, the other thing I was wondering about....and I know this is probably being paranoid, but anyway...is MS. I've seem to see alot of people on these threads who also have the condition, and I was wondering, if, perhaps, it's something I should investigate further?
Thanks again to everyone. The support has truly lifted my spirits. Makes me want to fight again, so to speak, instead of just giving up.
Oh..I also wanted to mention that I have taken TheraTears for about two months now (in combination with everything else). I also took Bio Tears (by Biosyntrx) and am now going to try HydroEye (by ScienceBased Health)--I just got it in the mail today. So far no luck....I'll try Flax Seed though. Couldn't hurt.
Sasha, you are very welcome. When I see my doctor in two weeks I will ask him about the "blood drops". He is a wonderful source of information, and he loves it when I come in and ask him questions that challenge him! He asks me all the time if I have any new questions for him, and tells me to bring it on!
MS itself id not a cause of dry eyes. That's not one of the symptoms. But I have MS, and it means that I could possibly have other auto-immune diseases that are causing my dryness.
Thyroid problems are actually a known cause of dry eyes. So you should definitely check that out.
Eye makeup could certainly cause irritations, but I don't wear any eye makeup at all. Ever.
I know that Thyroid problems are a known cause of dry eye, but I was under the impression that Hyperthyroidism does that, not Hypothyroidism (which they are currently saying I might have....have to go Monday to get another blood work thing done to make sure). Am I misinformed?
I do wear eye makeup, but there have been plently of days that I didn't wear makeup and still experienced the same symptoms....really dont think that is the cause.
By the way, I'm still wondering about Doxycycline use, and how long it generally takes before it produces noticable results. Anyone have any idea?