New Sufferer, first post
I'm really glad I found this site- I'm not the only one out there dealing with this awful syndrome with a very benign sounding name!
I'm 37, and married mother of two. I was diagnosed with DES 9/2011 with a STT(2) of 3mm (yikes!) OU, and mild to moderate mybomian gland dysfunction with "sludgy" mybomian gland secretions. This diagnosis followed many months of frequent red looking eyes that I pretty much ignored (big mistake) because I wasn't in any discomfort. By September however, I was having discomfort and finally went to see an ophthamologist. From that point things seemed to move quickly downhill- I found that pretty much any and all drops are totally intolerable to my very sensitive eyes. I seem to have stabilized and improved somewhat however after getting punctal plugs in both my upper and lower puncta. Yes, I have the occasional spillover, but I will take that ANY DAY over what I was dealing with a month ago. This has also allowed me to tolerate medications much better. MY bloodwork so far has been negative for any systemic autoimmune disease, but a hormonal profile revealed low testosterone (low to low normal). I've been very aggressive and experimental with my treatment, so here's my little regimen so far. . .
Punctal plugs- upper and lower
Autologous Serum drops- used when I get that "burning tears" sensation
Castor oil drops
4000mg Fish Oil daily (for Omega 3)
Hot compresses and mybomian gland "massage"
5mg of Androgel daily (subcutaneously absorbed testosterone) to hopefully improve mybomian gland function
Humidifying goggles courtesy of this site which I would recommend to ANYONE needing extra relief
By far I am finding the toughest battle so far however to be with my emotions following this diagnosis. I am worried, angry, depressed, and really struggling with my diagnosis and a feeling of isolation. I hate my "new eyes" and am really mourning the loss of my old ones. Add to my above regimen 10mg of Paxil a day and 0.5mg Klonopin twice daily for these reasons. So far I'm not feeling much benefit of the Paxil (which has worked for me at that dose in the past) and would love to up the dose- but given its dry eye side effect am scared to do so- aaaah, the catch 22! Thoughts anyone?
In any case, I thought I'd finally post instead of just "lurking". This site has given me some good ideas for treatment and has helped me see that I'm not alone.
Wow, for a "newbie" you sound like you know exactly what you are doing! Kudos to you for being so aggressive with your management. I know it takes a while to research these things and find good doctors who will help.... especially regarding the autologous serum drops. You've done a lot considering you were only diagnosed a few months ago, now I feel like a slacker for not doing enough
I see you are on doxycycline, do you think you have rosacea? Are you seeing a dermatologist for this? Sometimes red eyes indicates allergies. Did you get tested for these?
I am interested in getting a hormonal profile. What type of Dr. performed this test, do you know what it was called?
No- I probably don't have rosacea- but the doxy is for my mybomian gland dysfunction and also because at sub-antibacterial doses it inhibits something called MMPs- which play an important role in inflammation of the eye (I work as a scientist- I know dorky things like this )-
As for the hormone profile- a friend of mine who is an OB/Gyn ran it for me. Here's what she checked:
Full thyroid profile (TSH, Free T4, Free T3)
I came up low on free testosterone and low normal on total testosterone.
Hope this helps,
And I forgot to add that I'm getting allergy testing next week- might as well rule out everything. . .
I agree with tearless2- You're amazing! How did you get all this to happen? My opth won't prescribe the serum drops for me, my gyn won't run a hormone panel because she says they fluctuate so much over the day you can't get a good reading, and My GP wants me on a antidepressant because of my mental state but I don't dare. After 6 mos of restasis and plugs my progress has been minimal and I'm afraid to lose what little ground I've gained by going on the anti-depressant meds. I agree that the emotional effect of this is awful and hope that by now, maybe the paxil and klonopin have started to kick in for you by now. Congrats on your ability to be so pro-active!
I think it helps that I have a medical background- I'm a DVM- which means you can speak Dr. fairly well. I also found an ophthamologist who is totally open to trying new things- I did all the legwork for finding a source for the serum drops but once I had the info he was totally game. Yes, female hormones do fluctuate, but that doesn't make the tests totally useless- if something is not quite kosher the tests will likely pick it up.
Find a doctor who is willing to take a "team" approach with you, is willing to try new things, and who genuinely listens to your concerns. Easier said than done, I know! But, if you want something in particular done keep pushing- and if that particular provider won't help you out get a second opinion.
My 5 year old recently changed his career aspirations and wants to become a veterinarian. It is a very welcome change from his previous goal of becoming a magic wand shop owner. I hope he sticks with the veterinary goal.
Since you have tried so many treatments in the past few months, how will you know which one is helping you? I am particularly interested in if you think the Androgel is helping with dry eye.
Wow, I don't know, magic wand shop owner sounds pretty cool. . . No- seriously- it is a rewarding and interesting career, with a lot of potential directions (I'm not in practice, but work as a scientist, while my husband, also a DVM is in practice). You don't make the bucks the MDs do, but you won't starve either.
You are right- I'm throwing so much at my eyes (out of desperation I guess) that I can't be too sure what ends up helping (if anything). I'm early enough into all the treatments at this point that I can't say for sure that anything has helped too much- I'm going to give them all at least three months and re-evaluate. I may then take the approach (if things are better) of removing them one at a time and see if things worsen. Probably the treatment I'm most committed to (based on veterinary and human data) is the Restasis, which I can't see stopping using.
As for the androgel- my mybomian glands remain the same so far (mild disease). I don't get the blepharitis or lids crusted shut like some people do, just that the oil in my glands is sludgy and difficult to express. The one thing I will say about the androgel is it has quite a libido effect (at least on me). My husband is looking good these days Not a bad side effect!
Severe dry eye syndrome and dry throat is curable!
Happy New Year for 2012! SEVERE DRY EYE SYNDROME AND DRY THROAT IS ALMOST CURABLE!
Diagnosed with SEVERE Dry Eye Syndrome seven months ago. After weeks of suffering with wrong doctors, and wrong plugs that were uncomfortable and falling out, I changed doctors, and got four SmartPlugs that are semi-permanent and do not fall out. (For you South Floridians I recommend Cleveland Clinic inWeston and Dr. Gailitis in Margate) . At the same time that I received the SmartPlugs (this may sound crazy but it works) I began treatment with an acupuncturist (For you South Floridians –Acupuncturist Dr. Ding in Lauderhill, Florida – 954-747-7800) and am now back to reading, using the computer, driving and swimming. It took about a month of twice a week treatments and I am still going to see how much better I can get.
I had also developed multiple chemical sensitivities where just smelling pool chlorine made my eyes feel like there were pieces of glass in them. Now I am back to swimming with no problem. The anxiety from having severe Dry Eye Syndrome also gave me overactive bladder, insomnia, extremely dry throat, and an addiction to Ambien that the acupuncturist cured. Eye dryness is mild although I’ve still got the plugs in, but with further treatments, I am hoping that two plugs might be able to be removed. I have found that attaching a magnifying mirror to the headboard of my bed with clamps so I can easily administer genteal eye cream followed by a warm wash cloth compress to seal it in, in the a.m. and p.m., does the trick. I only use Restasis nightly, and Oasis Tears Plus (from Internet or some eye docs) is good on the go. Supplements include MaxiTears ( from Internet) and of course, omega 3s.
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