The value of keeping a daily journal of all your treatments

How my dry eye started

In November of 2018 I had cataract surgery. After surgery, I suffered severe dry eye. My surgeon said this was quite common. She recommended the normal OTC eye drops. She also did punctual plugs in both eyes. For six months I endured severe pain--every time I would blink it felt as though my eyelids were coming down on crushed glass.

It only got worse. I knew I needed to try something to relieve my pain that didn't cost $640 a bottle! I tried the treatment Lipiflow ($1000)

How it progressed and what I did

The diagnosis continued to be chronic dry eye and MGD. I kept a daily journal of all the treatments--Xiidra, eye drops, lid scrubs, warm compresses 3 times a day, cool compresses, insulated sponge goggles at night, ointments, PRN fish oil, humidifier, eating more fish, drinking more water, and the list goes on and on. I went to another half dozen doctors--more eye drops and an electric lid scrub ($150)

The hardest part

With no relief from the constant pain, I was very depressed and ready to just give up living--when someone told me to see a specialist of "ocular surface diseases". When I visited this doctor he took the time to read my journal. In fact, he studied the journal and asked questions. He said I want you to try Tacrolimus ointment 0.1 and Doxycycline Mono 100 MG twice a day. Even though he could see no evidence of eczema on my face or body, he thought I could have eczema in my eyes. The first day I used Tacrolimus Ointment on my eyelids, it was like magic!! I no longer had the severe pain every time I would blink my eyes. None of the other doctors I visited had any real concern about my pain and suffering. They seemed to only be interested in making the standard dry eye diagnosis and promoting the latest in OTC drops and prescription drops.

Turning a corner

I visited with my surgeon this month and she asked how did the other doctor know I had eczema in my eyes. I told her he took the time to read my journal and to ask questions. He could see all the things I had tried, none of which had worked. In fact, most of the treatments that had been recommended were actually making the eczema worse! She said she would never have made that diagnosis as I had no symptoms! So, I am very thankful the last doctor who read my journal and was willing to try different treatment. I will be indebted to him for a lifetime!

Where I’m at now

I feel like living now and can enjoy all my activities of golf, pickleball and just socializing with people. I continue to use the Tacrolimus ointment and the Doxycycline Mono daily. I will probably use these treatments the rest of my life. And, they are so worth it! So, my recommendation is to keep a journal of what treatments you are using and find a doctor who will actually read and listen about the pain you are suffering. Never give up--there is a doctor out there who probably has the answer for you and will not give you just the standard answers and treatments. My last doctor thanked me many times for providing him with the journal. It helped him and as a result he was able to help me!

Jean

Sun City West, Arizona