My husband has Thygeson's superficial punctate keratitis for more than 15 years. At first he used steroids to manage the pain. He stopped because of the danger of steroids. He needs to be in dust free environment, use fitover dark glasses outside, sleep early, avoid air conditioners and fans. And he still gets crazy flare ups with so much pain. This summer we tried washing his eyes with raw whole milk from a grass fed Jersey cow. We warm the milk for a few seconds to bring it a drop warmer than room temperature and he uses a small cotton pad (not cotton ball because cotton ball sheds and irritates the eye) to wash his eye with the slightly warm milk. We do not allow the milk to get hot as we do not want to **** any beneficial bacteria which is found in whole raw milk. The milk has cream and after 24 hours the cream rises to the top of the jar, so we shake it before use. Please check with your state as not all states allow sales of raw milk. We buy our milk from a state licensed facility. Before we tried raw milk, we tried regular pasteurized milk and it barely alleviated any pain. The raw milk is amazing for him. I am posting this because, the raw milk has significantly brought down his flare ups. It is soothing his eyes and he has been better able to tolerate environments which previously would have caused major pain. I am hoping research scientists will hear about this and run tests to help everyone
I'm so sorry to hear about the problems your husband has been enduring. Unfortunately, this is not an area that VSRN covers, as we focus mainly on complications from refractive surgery. If you have not already googled it, you might try to find a patient forum for Thygesons where there may be more information. Sorry I cannot be more help to you.
I know this a few months old, but if you ever read this and want advice just reply and it will go to my email. I have thygeson's disease. I have no idea how I caught it. One day back in 2014 I woke up and my eyes were bright red, it was sunny outside. I had to drive to my brothers. The sun was killing my eyes. Felt like I had just been on a night out and didn't get in till 6am drunk. Anyway the days went on and I just put it down to be being tired. But my eyes were getting worse and more sore. I booked a appointment with the doctors. They sent me to a specialist. After multiple appointments I got diagnosed with blepharitis. I was told there was no cure. My eyes were covered in 'sleep' and were crusty. I couldn't understand why this happened. Anyway I read online about people trying to cure it. I did a lot to get this stuff off my eyes and my eyes back to normal. I used some aloe vera face wash and various other stuff. After about 2 months I went to the opticians for a check up. I told them I had been diagnosed with blepharitis.. they checked my eyes and they said they didn't know how I did it but I no longer have blepharitis. I couldn't understand as my eyes were still hurting but no longer had 'sleep' on them. So I went to see the doctors again who again referred me to a specialist. After being told there is nothing wrong with me I had enough and asked to see someone in a much higher position. I argued with them to the point they had enough of me. Anyway this guy walks into the room, looks at my eyes and says.. you have thygeson's disease. He told other specialist who said there was nothing wrong with me to have a look, and told him its very rare to see.. all's I can say is, at this point I knew exactly what my problem was now. Even though I didn't know what it involved or caused at least I knew what I had.. it was a relief to finally know.. bare in mind all this took about a year.. anyway.. I got told there is no cure, it may go away one day. There are steroid eye drops I can take but it will cause cataracts so I was told not to take them.. as the months past my life got worse. I couldn't open my eyes. I had this pain in my eyes that felt like an eyelash in my eye, it could be both at the same time, or just one. But I honestly couldn't leave the house. My eyes were bright red and very sore.. they seemed to get a little bit better then flare up again. I went back to my specialist as I couldn't live my life anymore. I wanted those steroid eye drops. I didn't care what it would do to me, I had enough. They refused to give them to me, and offered bandage contact lenses. I personally think they would work, but I couldn't get them in my eyes and to me didn't seem like it was curing the problem. So I had to deal with it.. 5 years on and I can now happily deal with this disease. Yes it flares up from time to time, but nothing like it used to.. I can no longer look at bright lights. It makes my eyes sore, hurt. And close. So if I watch a film in the dark my eyes will hurt the next day for about a week. I have learned not to do this. I can no longer drive or go outside in the sun without my eyes closing and hurting. This even happens in winter when people without this disease don't think it's sunny.. so I wear shades. I block the sun out.. I buy Oakley sunglasses. There expensive but my eyes are Worth it. I buy the mirrored ones so I look a bit more 'cool' I wear them 99% of the time when I drive. I wouldn't be able to drive without them. They work wonders. I haven't found anything that will cure it. But it does go away quite a lot after many years. You learn to live with it. A way I stop it during a flare up is put my eye on a pillow and lie down. I will lie there till it goes away. It can go away after 5 mins, could take 2 hours. But I've found doing that helps me. Also going for a drive, opening the windows and letting air get to them seems to stop it sometimes. Not all the times though.. I also use eye drops, the eye drops I use are called 'hylo forte' it doesn't seem to stop the eyelash in my eye feeling, but it does put water back in my eyes and it seems to help sometimes. I hope this helps someone as I think it would of helped me when I got diagnosed. If you ever want to ask me a question, just respond on here, it will email me and let me know.. anyway. Hope this helped someone.