Question? It's in there...Dr input appreciated

[UTPharmer]

I have no idea which section to put this thread...Accidentally posted in the archive first because that is what I had bookmarked. I apologize!!!!!

I wrote this in several different sessions of computer time because my eyes are unbelievable today. I can barely keep my left eye open at any point in time right now. So far, I've had 3-4 days of unbearable pain in a row. Huzzah for bad luck and crappy eyes! If I sound bitter during any part of this...well, you all know why.

A little background, I'm 26, white, male, green eyes, annoyingly long eye lashes (if they get in my eye...ohh man, it hurts all over).


I would be taking my pharmacy boards if my dry eye weren't a limiting factor. I need to petition for special testing accommodations just to bring in my lubricating eye drops to the exam (6 wks processing time). It's also a 4 hour computer based exam...Could the world be any more against those with dry eye? Also, my diagnosis is just "dry eye syndrome". I do not have any of the "good" (by good, I clearly mean bad) diagnoses that would get my accommodations quickly accepted. In fact, I don't really have any good physical exams that have used non-objective tests to determine how bad my dryness is. The symptoms are severe, however, and have gotten much worse over the past 4-years. I've got 4 punctual plugs inserted (two smart and two regular).

I find relief ONLY when I'm taking a shower (then my fiance yells at me for taking 1 hr long showers. i know it's a waste of water, but it's a small price to pay for 1 hr a day without pain). I've tried pretty much everything except for autologous human serum eye drops because I can't float the cost of that on top of my lacrisert(r) at the moment. Currently, I insert one (1) 5mg Lacrisert insert into the lower conjunctival sac of each eye BID (roughly $500 a month for my insurance) and use rewetting drops all day.

On a plus side, I will be opening a compounding pharmacy within the next year or two, and I will definitely be specializing in making autologous human serum eye drops for my fellow dry eye sufferers. Taking all of the fish oil supplements has proven fantastic for my already awesome lipid panel. I don't think they do much for my eyes though...Goggles were something else I tried, but when you try them, don't grab a colored pair because that's the only thing that the stores that are open at the time you finally break down and go buy a pair carry (i was studying/cramming for a test the next day...my eyes made me put it off longer. i was hoping for a good eye day and one never came).

I'm scared of coastal cities because every time I go to one, it's too damned windy during the day to go outside without pain. I thought that moving from Austin to Houston would be better for my eyes since Houston is humid and could be likened to an armpit, but I still feel the burn of my eyes all day long. It's basically the same story everyone else has, except I have no idea why my eyes are like this. I know only that I took accutane(r) for 1-2 months, 9.5 years ago, and then my eyes started getting severely dry about 4 years ago, 3-4 months before I got in to pharmacy school. Other than that, I've got nothing to work off of, and blood tests always come back negative. I have no problem with salivation.

I've tried restasis(r) once a day and twice a day, for over 4 months, and I saw zero improvement (it was great as far as counseling others in the future goes...). I've seen 4 different ophthalmologists, and the most recent one wrote me the most useless letter to send to my state board. When it came to the section on recommendations to make for my accommodations, he said, "please provide him with any aids to which your committee deems as appropriate during his examination". My requests which were written on my section of the form prior to his filling it out are as listed below in this post, and while I was very specific, he was not. He said, "it is not my policy to make specific recommendations", and then went on to further say that was, in a nut shell, because he didn't want to deal with state boards, lawyers, employers, and the like. Looks to me like he just wants to take my insurances money and ignore how this disease/syndrome is effectively destroying me emotionally and professionally.

I just want to be able to take my exam and see at the same time without pain, but I feel downright dirty trying to ask for additional time because my eyes are such a nuisance. I put drops in about 6-10 times per hour depending on the day, and that causes my vision to go blurry and make reading almost impossible for 30 seconds to a minute, and quick reading/skimming almost impossible for 3 minutes because it's so hard to focus. The tests (law and board) cost almost $1000, so I feel justified in trying to ask for additional time because I'm dealing with my eyes almost 20-30minutes per hour. After all, the request is only to get a fair testing environment. I'm scared of the test because 4 hours on a computer is enough to make my eyes burn for the entire day.

IF I run out of time and I don't pass, I can't take the board again for 90 days or the Law again for 30 days. I'll just die if my eyes cause me to fail my exam and make me look like an incompetent fool. No one really understands exactly what it's like to be a severe dry eye sufferer except for a severe dry eye sufferer, and there aren't as many people out there suffering from severe dry eye as there are people that are willing to judge us.

I asked for 15min. for each hour of the exam, the ability to bring eye drops and a lacrisert applicator to be kept on my person and have someone at the testing center have an extra eye drop bottle and applicator just in case, and a compact/mirror to be kept on my person so that I can manipulate my lacrisert inserts during the exam if I need, for whatever reason (they pop out, get in my eye lashes, stick to my eye, get an eye lash in the lacrisert itself because one of my eye lashes wanted to get inside of my lid and not stick out from it, etc.). Does that sound unreasonable to anyone? I wanted to ask for 30 minutes per hour, but I thought that might have a less likely chance of getting approved. It would be great to be able to just sit there and close my eyes for 10-20 minutes...and people would still think I was using that extra time for test taking. Sigh.

I've got an appointment for Boston Scleral Lenses with their Houston partner soon, so hopefully I can just withdraw my disability request *fingers crossed*


Also, this is my first real post of any value. I'm new to the forum, and up until now, I've just been a troll. I hope to have good things to say about the Baylor Alkek Eye Center, and I will definitely post as I go through this process so that others can derive some kind of benefit from my experience. I opted for the cash-pay option that relies on me filing for insurance reimbursement, so that I can get the lenses much quicker, get to taking my boards and get a job!

[lell]

I Feel Your Pain

I just finished reading your post and I can really relate to everything you're going through. I started having dry eyes when I was in my early 20's ( I am now in my early 50's). I had just finished nursing school,when this hit me full force. I was lucky that I had already taken my state boards, and also that we didn't have computers back then. I also had taken accutane for 2 months, but in trying to come up with a timeline for when this started, I am pretty sure that my eyes were bad before I even took it.

They were always red and felt like something was stuck in them. I was so miserable and didn't know what was wrong. It was my roommate that looked at them and said they looked dry.Her diagnosis was confirmed by several different ophthalmologists. The only help back then was artificial tears. I was naive. I thought fine,I have dry eyes and the drops will fix the problem. WRONG,WRONG!!! I never thought that I would begin my battle of a lifetime. I used all resources available to me. Mostly reading medical journals,talking with the Drs I worked with and having all my friends and family keep an eye out for any new ideas.

I know that people are starting to take this problem more seriously ( I think it is because of the side effects of lasik ),but back then there was zero sympathy!!! I think even now,there isn't much compassion from people who haven't experienced this problem.Every now and then someone I know will have a bad eye day and say to me...now I know what you're talking about...I don't know how you can stand it. I have had other medical problems , but this has always dominated my life. It is either normal bad or really bad.That is why this board is so wonderful. I've been lurking here since it was first started.I never felt like posting before, because nothing has really worked for me, and I have tried everything over these 30 years. In my situation, I may have a few "good" weeks and then bam, a few bad ones. There is no rhyme or reason to it.The good news is that when I was first diagnosed (around your age), every day for a long time was bad, but then it did get "better" in the sense of actually having some decent days. Also there are so many more options, much more research,clinical trials and of course all of the great people from this board.I forgot to ask if you had tried the panoptx sunglasses to help with the wind issues? And also as to where you live and moving: when my problem started I lived in New Orleans.Is there a more humid place? When I moved (to NC),I was worried that things would get worse,because the climate would be drier.This didn't happen and for whatever reason things got a little better.Sorry for the long post. I know it must be killing your eyes to read it. Good luck with your test and I hope you get the extra time you need...you are not being unreasonable.

[UTPharmer]

I haven't tried the panoptx sunglasses because the ones that I have work decently well. They are a more sporty look, and I can push them straight to my face. Thanks for the info. I'll give those a second look.

[Rebecca Petris]

Welcome UTPharmer. Glad you're here, but sorry you need to be!

Couple thoughts on a Saturday night for what they're worth:

1) I'd ditch the lacrisert in favor of serum IF you can swing it financially and IF you study up on serum preparation standards and can get it made to the best standard.

2) You are dropping 6-10 times an hour????

This is seriously not good. I'd be doing whatever I could to NOT do that. I wish I had the thread links at my fingertips but I don't - there are many really good ones here from chronic overdroppers about how they weaned off and how much better they got when they did. Using drops as dry eye painkillers can be really counterproductive to gaining a healthier tear film. I'm glad you've got the appointment at Baylor, but even before pursuing sclerals (which it certainly sounds like may be the right route for you) I'd see what improvement you can get from alternative strategies to manage pain. That may be anything from cold compresses to moisture chambers etc. Speaking of which:

3) If you don't already have good moisture chambers for indoors and for outdoors I would make it a priority, based on the symptoms you're describing and the treatments you're already on. I mean anything really close fitting and, for outdoors, foam lined.

p.s. Re: your thread title - Just FYI these community forums are not open to doctors to post in. See the dedicated Dr Q&A forums or the Pro Open Forum for Dr. areas.

[Guest]

I know first hand how much studying has to be done for board exams... can't imagine doing it with dry eyes! Ouch!

How much time do you have until you would write your boards? (Just wondering how long you have to get this crazy problem under control!)

Anyhow, I think Rebecca is right about trying to lower the amount of drops you're using.

Maybe someone here can recommend a good dry-eye-savvy doc for you to see in your area... If not, I'd seriously consider flying out to see someone like Dr. Latkany. (Last time I checked, you don't have to wait too long to get int... maybe a couple of weeks I think...) Sounds like you could use the help of a good doc to get your eyes through your board exams. I'd pay whatever you have to in order to see a GOOD dry eye doc. Your board exams are too important not to! Once you're licensed, the pressure is off... you could work only part time if you need to and get your eyes back in shape, and still make a decent income (hopefully the internship isn't too long where you are?)

You'll get through this... and congrats on graduation!

[Gailygirl]

Lasiks

I was so sad to hear of DE's from Lasik surgery. I have never met anyone with this very sad problem. I will warn people that this can happen, and have them read these post.

I thought I would google how many % of people get these debilitating DE's from lasik surgery. So sorry that happened to you who are suffering.

[Perception]

frequent eye drops

I put drops in about 6-10 times per hour depending on the day, and that causes my vision to go blurry and make reading almost impossible for 30 seconds to a minute, and quick reading/skimming almost impossible for 3 minutes because it's so hard to focus.

Unless I missed it, you did not mentioned if the drops you are using at this frequency are preservative free? If they are not, and do have a chemical preservative, this could be compounding your issues. I am not an expert - but have been told this by multiple doctors as well as others on this board (including Rebecca).

Good luck with your situation, and with the exam.

[UTPharmer]

Well, I got the Boston Scleral lenses, and after 8 months of use, I can honestly say I couldn't do without them. They are a pain in the butt when it comes to the extra time burden it takes tending to them in the morning and night, but they have allowed me to enjoy my life again. I can sit under a fan without problems. I can go outside when it's windy. I can play on the computer UNTIL I GET BORED!!! Seriously, these contacts have been the best thing I've ever experienced in terms of dry eye treatments, and I recommend everyone that is capable give them a try. I would never have been able to get a job and keep it without these, and now I'm practically normal. I can beat my fiance in a staring contest now--nuff said.

I highly recommend everyone give these contacts a shot. They are well worth it. Ohh, and my right eye has now been corrected to 20/12-ish vision in my right eye. It's kind of absurd. My left eye at this point needs a new prescription, but was originally about 20/15. I didn't think it was correct initially, and after 7 months with it at the prescription it is at, I'm positive it's not accurate.


Important things to know about the Boston Scleral Lenses:

Keep in mind that the whole experience at the Doctor's office was expensive in itself, but I also incur a recurrent $120 monthy expenditure to buy solutions and such just to take care of the contacts. I also should point out that I still suck at putting them in. Sometimes I get it on the first try, but it generally takes me 5 tries or so per eye. I can't seem to not get bubbles in the contacts most of the time. It's super annoying. Everyday I have to allot about 30min. just to put the contacts in. I've found that rather than trying to use special soap to wash my hands and then putting them in, nitrile gloves will do the trick just fine and provide a better grip to hold my eye lids open since my fingers are always wet. Also, I've found that even if I put them in and don't see bubbles initially, if I tilt my head back and look side to side and up and down really fast after insertion, microbubbles will coalesce and create bubbles under the contact. While that sounds like a stupid thing to try and create, it makes a large difference when it comes to extended wear comfort. I can wear the contacts for as long as I want. The only thing that hinders their use is mucus that builds up in my eye throughout the day (i also have 4 puntal plugs, so that might be why). I can get past that issue by just taking a saline bottle and hosing it off while holding my lids open. Along those lines but completely useless, I can now take a shower and stare at the shower head through a stream of water. It essentially makes your eyes super protected, and while it's not the most intelligent thing to do because it throws off the osmolarity of the solution underneath the lens which is supposed to be isotonic with the fluid inside the eye, it sure is neat (if that doesn't make sense, read: it makes the solution inside contact not have the same amount of salt as natural tears, which is bad for extended periods). Other interesting points, I stopped using the removal plunger altogether. I just use the one plunger and clean it with an alcohol bath. It's got such better suction and reduces the risk of the contact slipping off and breaking. Really though, it's just easier. I keep the contact risk of breaking down quite simply by putting them in over a large plastic butler-type serving tray in a room that has carpet. Basically, if the lens drops, and it has once or twice, it either lands on soft plastic or soft carpet. These lenses cost $750 ea. to replace (odd how the first lenses cost $3500 ea.), and while it's being replaced which is typically overnighted or 2-day shipped, you won't have any dry eye relief. I hate not being able to sleep in them for more than 30min. It makes it so hard to bum around these days. When you go out drinking, and you plan to party hard, make sure you have someone that you trust well-trained to take them out for you in the event that you are too drunk to function. You can buy everything for cheap on Amazon. I highly recommend them. I purchase Unisol 4, Lobob ESC, nitrile gloves, and reusable (AAA) pen lights from Amazon. Lastly, I will say that when you travel, you should ALWAYS bring two plungers with you. Put them in different suit cases/bags or whatever because one day, you might just leave yours at home with all of your clothes like I did. That was a terrible day.

Those are all of my pearls of wisdom thus far, and while some of them are common sense, hopefully they will help someone get better adjusted to the lenses quicker.


Enjoy,
Nick

[tearless2]

Thank you so much for writing about your success! I am so happy you were able to find relief. I will keep these tips in mind in case I get scleral lenses at some point. I hope you are able to realize your dream of opening a compounding pharmacy (and providing autologous serum drops for your dry eye customers )

[Guest]

Well, I got the Boston Scleral lenses, and after 8 months of use, I can honestly say I couldn't do without them. ...they have allowed me to enjoy my life again. I can sit under a fan without problems. I can go outside when it's windy. I can play on the computer UNTIL I GET BORED!!!

OMG! That sounds wonderful! It's so great to hear that they are working so well for you. Thinking I should definitely give it a go next year then... the money's going to a vacation this year... but next year... maybe Boston... oooo... would love to have them work out as well for me as they did for you!!

Seriously, these contacts have been the best thing I've ever experienced in terms of dry eye treatments, and I recommend everyone that is capable give them a try. I would never have been able to get a job and keep it without these, and now I'm practically normal. I can beat my fiance in a staring contest now--nuff said.

Awesome! Totally awesome!


And thanks so much for your tips on wearing them etc. Will be helpful to many of us.. if not now, then in future!

[Anthony16]

Out of curiosity,
Is finding the correct fitting the main issue with sclerals,as well as the fact they make some peoples eyes sore after a long day of usage?They seem to help a lot of people