Corneal neuralgia/dry eyes - from sucidal to almost normal

[lelagy]

Hi, I had Lasik around seven years ago, and have had some problems with dry eyes in the mornings, but apart from that no problems until last summer, when I started to become photophobic. This summer, in the beginning of July, I woke up with a strange foreign body/pain sensation, mainly in my left eye, and my eyes were horribly dry. I was in horrible pain for two-three months, which made me suicidal, so I had to spend some time in a psychiatric ward. This I would say saved my life. In the meantime, I got pain medication (right now I'm on Tegretol and Lyric), plugs and serum drops.

My pain has gone from i would say a 9 on a 1-10 scale when I was at the worst, to a 0, sometimes 1 (I wouldn't even call this pain, I just "feel" my eyes sometimes). Today I woke up and checked on the meter that I have that shows humidity. It was on the lowest level since I started using it a month ago, but my eyes felt great!

I wanted to post this since I know there are so many people out there feeling this is a hopeless condition. I expect to get even better since I have only used the serum drops for a limited amount of time, and in the long run I think I will also be able to get off the pain medication.

Just a disclaimer - I've heard that there are people who got severe pain FROM taking serum drops (probably due to pain from the nerve regeneration?). So it might be a good idea to be aware about this and have a pain management doctor as a backup, who can prescribe proper medication etc.

Take care all of you out there, and don't give up!

[mdryeye]

Your story is very encouraging. I too suffer from severe corneal neuralgia. Glad to hear that serum is helping you, as I am going to start it soon too. How long did it take to start helping you? Also, for how long were you on Lyryca before seeing improvements?

[Súil Eile]

Thanks Lelagy, it's always so nice to hear positive stories on here Hope it continues to go well for you!

[sunshinelover]

Wow, wow, that is so great to hear!!
Did you get any explanation to why this happened?
Was your schirmer and tbut normal? Did you go to a Swedish doc
? Which one? I will pm you since I so am interested to this.

[lelagy]

Hi, I think I started serum in the middle of August or something, but in the beginning I did only take it like four times a day, because that was what my doctor prescribed initially. And I also cried a lot, so I think much of the effect was lost. So lets say I've been using it properly for a little more than a month or something. My memory is not very good, but I think it started to provide relief quite soon after I started it.

Don't really remember about the medicine I'm afraid - I got it maybe 10 of August, but it took a few weeks to find a good combination of medication. It was not until I started Tegretol that I got good relief, but Lyrica is good as a complement for me.

[lelagy]

Hi sunshinelover, I think it might take some time for the serum to normalize the tear film. Don't really know about my tbut and schirmer - I just know that after starting serum + getting plugs, my tear film looked much better and I also had a more normal looking tear meniscus.

I go to a wonderful doc called Maria Egart at Mölndals sjukhus, Gothenburg.

[Rebecca Petris]

Lelagy, thanks so much for posting. We really need these progress reports here! Great to hear how things are for you now.

[sunshinelover]

Hi Lelagy, I sent you a private message!
Hope you see Italien, since Id love to hear more.

[buntbean]

I've been on Neurontin and Cymbalta for 7+years. My mom was diagnosed last summer with Trigeminal Neuralgia and she was started on Tegretol and her pain went from a 10 (suicidal) to a 0. I've often wondered if the tegretol would be a good med for corneal neuralgia. Guess it's something to watch.

I've been to 13 different eye doctors (mostly in Boston, MA) and none of them has ever suggested serum drops. I'm on Restasis 2X/day and LOTS of thera tears.

[lelagy]

I've been on Neurontin and Cymbalta for 7+years. My mom was diagnosed last summer with Trigeminal Neuralgia and she was started on Tegretol and her pain went from a 10 (suicidal) to a 0. I've often wondered if the tegretol would be a good med for corneal neuralgia. Guess it's something to watch.

I've been to 13 different eye doctors (mostly in Boston, MA) and none of them has ever suggested serum drops. I'm on Restasis 2X/day and LOTS of thera tears.

Hi Buntbean! Do you suffer from corneal neuralgia as well? I've been in contact with a man called Pedram Hamrah who works with corneal neuralgia patients, and he recommended serum drops 8-12 times per day among other things.

[buntbean]

Lelagy,
I do have corneal neuralgia. When this all started 7 1/2 years ago I could only find 1 other person who suffered like I do. I haven't checked in with this site for quite some time (feels hopeless at times) and now I can't get over the amount of people from all over the world. I'm not sure the serum drops would work for me since my nerves have branched out and created more pain receptors. From what I understand, it's irreversible at this point.

[Arkmomma]

Why does Lasik cause dry eye?

[bakunin]

Why does Lasik cause dry eye?

Lasik cut the nerves of the cornea. The nerves control the production of the tear film.

[farmgirl]

Buntbean, what you say about your condition being permanent may be true but you need to understand that the serum drops are not going to 'cure' your dry eye. What they do is provide nourishment for the cornea in the form of stem cells and other blood components that artificial tears cannot provide and that helps keep your corneas healthy. If you are lacking tears you are lacking nourishment for the eye and serum is the next best thing. In doing so you may well experience some increase in physical comfort as well since the corneas can become very symptomatic if there are erosions.

My eyes still bother me with Sjogrens and probably always will unless I can cure the Sjogren's but my corneas have been healthy ever since I started the drops 9 months ago and since the health of the cornea was my biggest concern I feel I have made some significant progress. I highly recommend them for anyone suffering from dry eye; just don't expect them to completely cure the condition because for me at least at this point it is just damage control......cheers...F/G

[lelagy]

Hi buntbean! I'm so sorry to hear that you've been suffering from this such long time. I agree with farmgirl about the serum drops, and serum drops 8-12 times per day is also a part of the treatment regime recommended by a doctor called Pedram Hamrah. I will post a summary of what I've been told by him about this soon (of course it will be based on my understanding and not a recommendation for treatment).

I don't know how much dry eye symptoms you have, but I think dryness can exacerbate (is that the right word) neuralgia, so maybe plugs is a good idea too, at least until the serum has regenerated some nerves (possible) and the dryness is better.