Blepharospasm Bulletin Board

I don't think Dr. Rosenthal uses Lyrica anymore. Or atleast he didn't in my case. He prescribed LDN and dextromethorphan for me. Although I am taking only the LDN. He is currently working on using Ketamine for neuropathic pain.

The problem is I don't know how much of it is neuropathic pain and how much is the spasms in and around my eyes. I don't have any constant pain except for the constant throbbing of nerves in my extremities, chest and in my head. I am quite pain free most of the day. Only later in the day does the pain come up. My eyes are much better in the morning and gets worse over he day. And there are cycles, days when I feel better overall and days when I'm not.

I did try scleral lenses but I couldn't take the filling liquid one bit. I tried saline, preservative free drops, preservative free lubricants but my eyes wouldn't take them at all. The whole body nerve throbbings would get worse and I would be in eye pain too. No luck with RGP lenses either which shouldn't be surprising.

Botox is sure to help a lot. I really wish to try it. I have not been able to run, play sports, drive and do so many things now. But I am just worried. I am quite ok now and am a little productive. I dont want to get worse. That's my only worry.

And it says on the Botox website that it may cause swallowing and breathing problems. I have minor breathing and swallowing problems when I strain my eyes too much. But that doesn't happen too often. I dont know how much thought I should give those warnings or if its not going to affect someone as young as me as much.

The spasms in and around my eyes are so bad I have lost the ability to read for more than a few lines. I am in terrible pain if I try.

You seem to know much about corneal neuropathic pain and you know Dr. Rosenthal too. Do you suffer from similar problems? I really didn't expect to find someone who'd understand these issues in a bLepharospasm forum. Thanks. :)

Regards,
Arun.