When is it time to move on?

[hike and bike]

I have had dry eye symptoms for 27 years. I have been to many doctors and have tried many eye drops, ointments, supplements, procedures etc. A year ago I found a doctor in my town who gave me a very thorough exam and proclaimed that I do not have dry eyes after all. He says that when he puts dye in my eyes and examines them, that the surface doesn't stain like dry eye at all.

At first he suspected corneal edema. We tried FreshKote, Muro 128, for a couple months, and then we tried Prokera for one week. After Prokera, my eye looked much better according to the doctor but I experienced limited improvement of symptoms. The doctor started to suspect that my blinking was causing the epithelia on my cornea to be compromised. The nerve endings on my cornea send messages to my brain that feel like dry eye symptoms, even though I don't actually have dry eyes.

For a few months now, we are trying bandage lenses and Lotemax. When I go in for exams, the doctor says my eyes and lids are looking better. I wear the lenses about 18 hours a day, and often when I remove them my eyes feel better, but sometimes not. My doctor mentioned that if bandage lenses don't work, the next thing to try is scleral lenses.

I cannot decide whether to stay with this doctor or not. He has been a lot more helpful and willing to work with me than all previous doctors. He is an optometrist that specializes in dry eye symptoms. On the other hand, it may be time to go on to the next doctor. I was thinking of taking the new information about my cornea to a corneal specialist or someone who specializes in corneal neuropathy.

I welcome any thoughts or advice.

[MGD1701]

I would search for new doctor (who has confocal microscopy to examine cornea (epithelium / nerve), glands, (internal) inflammation etc)
yet stay with this dr who seems to have passion to help, that is also important.

Good luck and please keep us informed.

[PhoenixEyes]

It does sound like they are a very helpful doctor willing to try different angles. I would certainly try the scleral lenses as you say you feel some improvement with the bandage lenses. My cornea specialist is wary of bandage lenses for me as I have punctate keratitis and at a higher risk of infection from them, I tried one anyway and though it helped reduce some of the pain I ended up having to take it out the next day as my eye was trapped shut with mucous. So scleral lenses is the next thing I'm pursuing.

You could also bring up the idea of autologous serum (eye drops made from your own blood) as some with corneal neuropathy finds it helps settle the nerves. Fingerprick autologous blood has taken the edge off the pain and inflammation for me and healed some of the dry spots / punctate keratitis. I'm hoping to try autologous serum next if I can get approved on the NHS for it (difficult in my area).

It was suggested I might have corneal neuropathy and the suggestion for it by the cornea specialist if all else fails (e.g. steroids, cyclosporin Ikervis / Restasis, Prokera Plus, autologous blood etc. which I've tried so far) was to try anti-seizure / epilepsy medication which may block nerve pain signals. I've been referred to a pain management clinic to discuss it as an option but I'm hoping it's still primarily blink trauma from the eyelids and that scleral lenses will be enough. However I have spoken to another person who had my condition (Toxic Epidermal Necrolysis) and also started such medication on advice of a pain clinic and find it helps with the eye pain.

If you're in America I'd also suggest giving Xiidra a go. Hoping it will be approved in Europe soon to try.

[hosanna13]

Have you tried systemic lyrica or gabapentin? Do you actually have dry eyes as measured by TBUT and schirmer's? If your scores are normal but you still experience pain, you may need systemic pain meds that affect pain pathways in the brain. If you truly do have dry eyes, scleral lenses should help.

[hike and bike]

Thank you!

[sophie0416]

I feel so connected with you hike and bike; my doctors (2 of them) told me I don’t have dry eye, in fact, I don’t think they even believe me my symptoms, so of course they just recommend eye drops and nothing else. I feel so so sorry for you, I am depressed cause I’ve battling with dry eyes for a year now, I can’t even impinge 27 years, that’s just insane.

[hike and bike]

Thank you, sophie0416. I'm sorry that you are having this problem, but it feels good to know I'm not alone. I hope you find a solution soon!

[JohnLegend991]

I would search for new doctor (who has confocal microscopy to examine cornea (epithelium / nerve), glands, (internal) inflammation etc)
yet stay with this dr who seems to have passion to help, that is also important.

Good luck and please keep us informed.

how can I know a doctor with confocal microscopy, and how often would we see doctors with this tool?

[JohnLegend991]

you definitely do not have dry eyes. it's a neurpathic pain, have u done lasik or PRK? or any eye surgery. I think i do have a corneal neurpathic pain, I have this burn feeling in my eye and its constant... all doctors that i've seen says ur eye is fine.

[MGD1701]

how can I know a doctor with confocal microscopy, and how often would we see doctors with this tool?

Hi JohnLegend,
Normally big hospitals, big chain clinics or (dry eye) / research centers should have it. How Often: you need to ask dr.
Maybe you could open a new posting and tell others WHICH CITY you live. Good luck!

[hike and bike]

JohnLegend991,

Thank you for your comment. No I have not had any eye surgery. I did have rhinoplasty when I was 17. My foreign body sensation symptoms showed up when I was 21. I have mentioned this to eye doctors, and they don't think the two events are related.

[Bodziu]

Hi,
my opinion, if not working change , you happy stay simple like that. There is human psychology phenomena involved in here, you maybe a victim of it: called we get used to, we are comfortable, afraid of change even though it is crying for change etc. How I'd approach it is by asking a question, can it get worse if I dare to change my doc? Have I reached the bottom? Currently where am I on my way to get better?
regards
B