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  • Linda M.
    replied
    Improvement with Non-Preserved Cyclosporine

    Hello, I have severe dry eye and absolutely nothing worked until I started using non-preserved cyclosporine that a compounding pharmacy in Northern California sends to me every month. It still causes my eyes to burn about 5 minutes after I put the drops in, but it's tolerable and infinitely better than Restasis, which absolutely killed my eyes for over 6 months. Two doctors insisted I continue to use the Restasis, even though I explained how horrendous it made my eyes feel. (I was reacting to the actual vehicle that the cyclosporine was in, equivalent to Refresh Endura which is horrid). Because it contains no preservatives, it must be kept in the refrigerator and has a short life span.

    I've also got a conjunctival fold problem in my left (bad) eye and am considering having a surgery to correct it. Is there anyone that has had this surgery? I'm afraid to make matters worse.

    For the past year, I've been seeing Dr. Pflugfelder in Houston and I highly recommend him. (I had previously visited Dr. Tseng in Miami). At first, I preferred Dr. Tseng, but have totally revised my opinion of both doctors. Dr. Pflugfelder has turned out to be the best doctor for my situation.

    I've only occasionally visited this site because when I'm in the most discomfort, it seems daunting to read about everyone else's suffering. But after spending an hour surfing around various postings, I do feel better in that I don't feel so alone. Doesn't it seem that the entire world has no idea how LUCKY they are to not even have an inkling of what we're experiencing?

    Leave a comment:


  • odydnas
    replied
    Although I have just recently begun to experience dry eye, I understand how you feel about working in a hospital with air conditioning on all the time. I would love to go to medical school and right now I am working in a research lab within a hospital (UCSF) hoping to get research experience and beef up my application to medical school. I worry that if I manage to get into medical school, how can I survive residency with 100+ work weeks and barely any sleep, which will cause my eyes to feel even worse. Medical school and residency is tough enough, but with dry eyes, it seems almost impossible.
    I just wanted to say congrats on getting into medical school (it is one of the most competitive occupations) and to hang in there. I hope you find something that can help you out.

    Leave a comment:


  • Caroline
    replied
    Hi

    I sympathise with your concern over working with dry eye. I too live in the UK and the opthamalogists don't seem very aware of the importance of environmental concerns with dry eye. I developed dry eye after LASIK and had to give up a good job working in an air conditioned, very dry office. Even those without dry eyes complained they got sore throats. Anyway i moved to another job that i got in a non air conditioned office. It was ok at first but then in the winter no windows were opened and indoor heating gave me the same problems. My TBUT is about 3 secs and schmir 2mm. My eyes were very dry in the office and in the evenings my eyes burned a lot. I didn't know what i was going to do and thought i would have to lose another job and then my home. I asked if i could work in a smaller office with a window that i could humidify. It was refused, and using a humidifer in the main large office had no affect. Unfortunately in my case using moisture chamber glasses does not help because i suffer dry nose and sinuses as a consequence of the dry eye which gives me chronic sinus pain/ headache and nose bleeding with dryness. In the end my good doctor was willing to certify i had "a disability with respect to environment" because of my eyes after i printed out the disability definition on the disability dicrimination act (DDA) web page and showed him. I was referred to occupational health at work and they agreed i could have a disability. That put them in a difficult position if i went to an employment tribunal. In the end luckily a small office became available that i share with someone. I work in there now and with the radiator off, my humidifer going and window open (when i need it open) things are much better. My only problem now is the fluorescent lighting that my colleague needs on but i am having the one directly above me turned off so hopefully that will help a bit. AND of course if i need to go for another job i have to declare my disability status and the adjustments i need which i guess could put off potential employers. I am thinking long term I should get a job i can do where i work on my own and have my control over my environment. My symptoms have improved GREATLY since i stay away from air con and over heated rooms. The glasses are still brilliant if i have to go in other peoples cars who have the air fan/ heater on. Don't give up with your career. FIND a job in a non air con place. It will be much better and if you then need to be by a window etc your employer should make reasonble adjustments (I did declare my eye problem before i joined and they may have been able to sack me if i hadn't so i'd be upfront about it to begin with but not to demanding until it becomes necessary and then they should make reasonable adjustments if its affecting your health). If your going to become a doctor you should get your own office anyway. There are a lot of old buildings that don't have air con. Good luck. Keep us posted.

    Leave a comment:


  • Rebecca Petris
    replied
    DryDye,

    Welcome. As you can see, the verdict for some immediate relief is unanimous, and all I can do is wholeheartedly agree: EYEWEAR, EYEWEAR, EYEWEAR. Can't emphasize it enough. Just recently had someone in Canada who was struggling terribly with full time computer work now back to fully functioning thanks to Panoptx. You can at least try out the concept with inexpensive alternatives as others have highlighted. But don't give up on identifying causes and getting therapies that bring you more success than you have experienced to date. We've seen a great many people here who were nearly hopeless after several years, like you, but who later really did find solutions that improved their tear film.

    Hang in there!

    Leave a comment:


  • Silverlady
    replied
    Another thought

    I have Sjogren's Syndrome. The symptoms include dry eye and dry mouth. I just thought I was thirsty all the time. Please consider having yourself checked for diabetes and possibly having your eye doctor consider Sjogren's Syndrome as a thought.

    Good luck,
    Billye

    Leave a comment:


  • stella
    replied
    You are from GB?
    If you are able to get to London there is now a really good ophthalmologist recommended on this site
    Go to plug a doc - and last post by Steve entitled "Dryeye star in London" and he speaks in glowing terms about Michael Guillion
    You sound pretty bad - so it would be worth getting a top eye Doc to look at you
    Keep drinking - It sounds like you are dehydrated and that would really affect your eyes - also definately get checked out for diabetes
    Goggles of anykind - until you get a chance to get proper ones of your choice sound like a must for you
    Keep us posted on how you are doing
    Allthe best

    Leave a comment:


  • momaxwell
    replied
    Just to reiterate

    I agree with everything Rojzen said, you might consider talking to your GP and getting tested for some larger issues. In the meantime, have you tried Panoptx glasses? Though they are not the sexiest eyewear ever invented, they most likely will bring you significant relief in air conditioned buildings and will help you maintain a normal work life. Hang in there, I believe we can all stabilize this eventually (I hope). I think the Panoptx will really help you.

    Leave a comment:


  • erinlins
    replied
    Hey I am so sorry you are suffering so! I can relate b/c I just got a new job teaching, my room is literally 90 degrees with the heat on and the administration says absolutely no humidifiers!! Anyway my bro also has dry eye (evaporative like you) and he finds relief with moisture chamber glasses. Also look at posts from sazy123, as far as I remember she is also in the UK and has tried sclera lenses. They might help you keep the moisture in, and help you with environmental conditions. I don't know you but seeing as you have never worn contacts you probably produce enough tears to wet the lens.

    Good luck!

    Leave a comment:


  • Rojzen
    replied
    DryDye - -

    Possibly your increasing thirst level will become a clue to a therapy that may, indirectly, improve your eyes. Is your blood sugar OK, for example?

    In any case, I am here to convey that protective eye gear may provide TREMENDOUS relief for you, in ventilated buildings and elsewhere. My tear break-up time has been not greater than 1 sec. for 9 years now. Two years into my dry eye, I discovered custom-fitted moisture chamber glasses, and once I got those on, I resumed doing absolutely everything. I'd been unemployed for the 2 first years, and then took on a very demanding government job for the next 5, in a highly air-conditioned environment, after getting the moisture chambers on.

    The Shop, here, carries many fabulous options for eye surface protection. Depending on whether you need corrective lenses, and, if so, how strong those need to be, you may be able, very quickly, to get a pair of Wileys, Panoptx, or just plain onion goggles. In a few months, we expect a product called Micro-Environment glasses to be on the market. These are regular glass frames with protective gaskets set in to them (removable for cleaning, etc.), and one can put any eyeglass prescription into them.

    Also, I, and many others, find that steady care of our fragile ocular surface can reduce symptoms vastly. The lid hygiene may not work for you, now, but you may want to try this site's Dwelle product line. Systane is a lovely product, but the polymers in Dr. Holly's Dwelle line act very differently. Some of us find the Dwelle and related drops (available only here, I think) to be incredibly healing. I've been using a prescription version of Dwelle for nearly 3 months, now, and I'm starting to go out, at times, without my trusty moisture chamber glasses, that's how good my eye surfaces feel now.

    Surf around here at the Shop, and in our encyclopedic reference sections, created by the amazing and brilliant Rebecca Petris, the genius behind this site, and if you don't find a moisture chamber or goggle you like, write here immediately, and we will all give you additional leads.

    We need you to go into medicine. . .Please don't give up hope. . .The compassion and empathy you're developing as a result of your eye suffering will bring healing to many, in future. . .

    Leave a comment:


  • DryDye
    started a topic So, so sad...

    So, so sad...

    Dear All

    I am *just* about able to type this, so I'll be brief. I guess I just need a place to vent...

    I've had dry eye since I was 19. I only really get affected in air conditioning, but boy do I get affected. On my first diagnosis, I was told I had the eyes of someone who had worn contacts for 2/3 years day in, day out. And of course, I haven't. I have eyes so dry I've not been able to last in any office job more than a week. I've never worn contact lenses, and I keep healthy with my sleep and water intake. Opthalmologists in the UK have no real advice for me at all: just to take drops that don't work, lid massages (that don't help), and to say tough luck, we can't do much more. I discovered Systane for myself and it provides some relief.

    Anyways, I managed to get through university (no air conditionin there, thank god!) and do well enough to get into a graduate medical school. It's all I've ever wanted to do, until I found the entire medical building has air conditioning, as do most of the hospitals. It's been a month and I'm already unable to go in again. My tear breakup is a couple of seconds now, and to top it off I seem to be thirsty all the time now, drinking about 25 glasses of water a day.

    I am at my wit's end. I have absolutely no idea what to do about the future, there seems to be nowhere I'll be able to work...ever! I'm taking flaxseed oil but am yet to see any effects...

    If anyone has any ideas I'd be really grateful...
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