July 13, 2011 at 6:29 pm #49MaryInVaParticipant
Do many of you have these eye disorders? I also had Superior Limbic Keratoconjunctivitis (SLK) for years, which I think the dry set me up for and maybe the thyroid issues, though my hypothyroid had been testing as “normal range” for about 12 years prior to SLK. And my hyperthyroid/nodules didn’t start until 10 years after SLK started.
It’s been an enormous battle getting my eye problems under control at all this year due to Doctor’s having trouble figuring out the cause of all the inflammation and filaments, then allergy to glaucoma drops for both treatment and testing has been a huge problem. Finally got the dry eye much better with fish & flax oil (Barlean’s Omega Swirl), humidifier, OASIS lubricating drops, nighttime lubricating ointment and allergen avoidance (after skin patch tests).
But I’m still on glaucoma drops that contain BAK, which I’m a bit allergic to. And the doc can’t figure out how to test my pressure without Flourescein, which they think I’m allergic to (but I wonder if there is BAK in those yellow drops they use & that’s the real problem). Went off Xalatan due to the BAK allergy. Tried Allergan-P which caused my pressure to go back up too high. Now I’m on Combigan which works on pressure but irritates (BAK) because the current doctor doesn’t believe BAK is the real problem. Any suggestions for testing or treatment for Glaucoma?
My undiagnosed underlying condition is still a mystery, but is suspected of being “something similar to EDS” and something that makes me develop allergies or sensitivites to LOTS of things. Have also had periods of problems with many forms of autonomic dysfunctions and near-syncope episodes (up to about 30 times per day). Currently my biggest systemic-type labels are Fibromyalgia and Erythromelalgia.
MaryJuly 21, 2011 at 3:45 pm #1323mother1991Participant
I also have dry eyes along with other eyes issues. I was told by my opthamologist whom is also a retina specialist that in those with EDS dry eyes were common. If you can try to get to get to a teaching hospital or major medical center to see a geneticist whom would be best bet for diagnosis of EDS. With all the other evidence you have this will be very helpful. GL if finding out what is going on so that you can find out specifically what collegan and connective disease you may have.
I do not have glaucoma.
My dry eyes are still considered mild so I use water washes as need be and close and rest eyes when can.July 25, 2011 at 6:39 pm #1336DebParticipant
I had dry eye when I use to work at a store. I can feel my eyes get scratchy and dry many times just walking through stores. I also had dry eye when the air blew in our other house from ceiling vents. I would wake up with my eyes glued shut and bright red. Now that we have air from the floor vents it doesn’t ever happen.
I use to put a thick drop in my eyes that made it impossible to see once I put them in. So it was the last thing I did at night. They helped a lot.
It may have been seasonally worse too.July 31, 2011 at 1:18 pm #1357Dr. DianaKeymaster
I’m so sorry you are having to deal with glaucoma on top of everything else! I may have a suggestion for you.
If your allergies and sensitivities (and ocular dryness) are caused or exacerbated by mast cells (very common in us), if you treat the mast cells, you may be able to tolerate the drops.
Did you happen to read my theory which includes our tendency to have mast cell disease? Of course, please talk to your doctor first, but my kids and I went on a double dose of Zantac and Zyrtec to start. Wow — what a difference! We are starting prescription medication today (Gastrocrom). For my eyes (and my son’s), the dryness is PAINFUL dryness. Pataday (by Rx) is a mast cell stabilizer that may help calm your ocular reactions. I, again, double dose it (I’ve been called Dr Double Dose Diana. ha. Be sure to ask your doc). Your eye doc can likely give you a couple of free samples (give it at least 2 weeks for the full benefit, OK?) With some systemic and ocular mast cell treatment, you may be able to tolerate the preservative.
Also, with SLK (which is usually due to vernal conj — an allergic reaction — do you know if you have this?), your doc may be OK with you going on Alrex (a mild steroid that shouldn’t increase your ocular pressure). That should make you feel much better. Do you wear contact lenses?
Finally, drum roll please — please ask your doc if you can try Travatan Z — it is just like Travatan but with NO BAK! How great is that? If you seem to “react” to that, then your doc is right — you are likely getting the “normal” red eye, itching, soreness, etc from the drops. This reaction is NOT an allergic reaction. It is a side effect. In most people, it diminishes over time.
Sound like a plan?
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