Help for corneal neuropathy pain

[Roe72]

I have had corneal neuropathy since 2012. It was officially diagnosed in 2015 by Dr. Hamrah. I also have ocular rosecea, and MGD. I have been on Lyrica, which helped at first but had really stopped working. Also the side effects are bad so I was only able to take 100 mg a day. After some internet research, I am now taking 50 mg of Topiramate at night and 25 mg. of Amitriptyline in the morning. My pain is down significantly! Most days, I hardly have any except maybe trying to watch TV in the evening. This has been a really unbelievable improvement in my quality of life. Hope it helps someone else. Oh, also, I haven't had any bad side effects from these medications.

[Irina]

Roe72,How long have you been on these medications already? What is your pain like?

[Roe72]

I have been on these meds about 2 months. The pain I had before is hard to describe. It felt like my whole eye was hurting. I have scleral lenses, and I have had them for several years. They help but the pain was still there. Sorry I can't describe it better.

[Irina]

Roe72, it's so good that you are pain free! So, you don't use sclerals anymore?

[Roe72]

No, I still wear them. I am so used to them. I might be able to go to a daily wear contact but...I am afraid to try too much too fast! Baby steps!

[Irina]

Hi Roe72,
I have one more question. How fast after you started this treatment you began to feel pain free ?

[Roe72]

Two to three weeks.

[kguenther]

Roe72, I have mgd, ocular rosacea, and ocular neuropathy. My eyes constantly feel heavy, watery and often sting and burn, especially when reading or watching tv. I saw Dr. Hamrah from Tufts in Boston Dec 15, 2017, and he recommended eight drops of autologous serum drops daily, lotemax steroid drops, and nortriptyline (25-100 mg daily).

I need help from anyone who might have some suggestions and am wondering if this protocol has worked for anyone.

[MGD1701]

Thanks for sharing.
How about inflammation? If so, bacteria, demodex?
Did dr recommend lid scrubs (compress, lid hygiene, specific lid cleansers)?

Thanks!

[jesveld]

kguenther I am currently on that exact protocol after visiting Dr Hamrah in June 2017 and being diagnosed with corneal neuropathy after I had Lasik in Dec. 2016. I have also recently added Xiidra to my regimen, as well as a recently approved neuro-stimulation device (TrueTear) that Dr Hamrah can prescribe. He told me to expect 10-20% improvement in symptoms every 3 months, so obviously progress is slow with this chronic condition. 8 Months into treatment I can't definitively say my symptoms are much better. I still have flair ups for days/weeks that are very difficult to deal with. I do think the Lotemax helped reduce the dryness sensations, as did Xiidra when I started it 3 months ago. I'm in the midst of the most difficult month I've experienced in some time, and am planning on following up with Dr. Hamrah to update him on my progress. I'm thinking my next option is to try scleral lenses, but Dr. Hamrah has tried to dissuade me from pursuing this because he believes they can slow the healing because they isolate the corneal tissue from the natural tears/autologous serum. I have also struggled with determining when to make the decision to try a new pain management medication because switching these meds is always rough on my body. I was previously on Gabapentin which didn't seem to help. If anyone has any recommendations on this I would appreciate them!