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Hello,
I've been lurking here since my eye problems started (roughly around January 2013). I figure it's time I join the community.
I'm a 29 (30 in a few weeks!) male and currently live in NJ with my (patient, loving) wife. I'm finishing up a doctoral program (not medicine related) in Philadelphia and hope to be a professor if I can get a handle on my symptoms.
I have a history of autoimmune-related issues: I had bad psoriasis when I was 19-21 (it went away), developed joint pain around 22 or 23 (got a lot better), and was diagnosed with interstitial cystitis at 23 or 24 (still very bad).
As for the eyes, things were more or less fine until roughly Christmas 2012: I started having neurological manifestations and pins and needles in my hands and feet (lasted 2-3 weeks). I saw a few neurologists over that time but none of my scans revealed anything of note. In January or so, after these issues subsided, my eyes got very, very painful -- like something was tugging on my eyeballs. The pain became unbearable. I wasn't comfortable in well lit rooms and couldn't even look at my computer screen for more than a few minutes. I saw an eye doctor, who noted my eyes were visibly dry and irritated. I've been trying to get a handle on the dryness since.
As an aside, I've seen numerous doctors over the past year, including several rheumatologists. They suspect Sjogrens (I had bad dry mouth too, but that's doing much better) but my blood tests have not confirmed a diagnosis.
Here's what I'm doing (or have done) for my eyes:
1. Restasis 2 to 3 times a day (for roughly 10 months). I have no idea if this is helping. I'm kind of skeptical.
2. 4 Lacricerts (2 in each eye) per day (for roughly 10 months). I do find these to be helpful but I'm still far from normal. Also, they'd be prohibitively expensive without insurance.
3. Silicon plugs in lower tear ducts; upper ducts very recently cauterized. This has helped somewhat but I think poor tear quality may be more of an issue than insufficient tears.
4. Diligent effort to consume lots of water -- 4500 ml per day (past 3 months). Sometimes I think this helps my eyes, other times I'm not sure. It's probably a good habit in any case.
5. An assortment of eye drops, most of which are preservative free. I think I prefer Systane Ultra. I also use the ointments but I've read (on here, actually) that that might not be best over the long term. These get very expensive!
6. I used to try FreshKote but my insurance stopped covering it so I stopped. I think it helped a bit.
7. I was very recently put on Doxy (about two weeks ago). No progress yet but will report back if there's any update.
8. I keep the humidity in our apartment high, at 50-65%. Humidity, by far, has the largest discernible impact on my symptoms. The humidity at my office is 20% and it's around 25% at my in-laws house. I'm toast after a few hours.
9. I have pretty reasonable looking sunglasses that block wind and retain moisture. These help if I got out in the day time but don't offer much for nighttime ventures.
10. I've also taken Plaquenil for 8-10 months (mostly for auto-immune concerns). It seems to help my joints but, as far as I can tell, does nothing positive for my eyes.
11. Salagen. This was prescribed for dry mouth but there's some research suggesting it helps with the eyes, too. I don't notice much of a benefit.
12. Fish oil. I have no idea if it helps.
I track my symptoms by rating several pain markers on a scale to 7. I also track a variety of things that I think might affect my symptoms, including water intake, work load, subjective stress, medications, food, humidity, etc. I've done this everyday for the past 2 months. I'm hoping to see patterns over time, such as when and why my symptoms are better or worse.
It seems that my eye symptoms are affected by the environment more than anything else. This past summer, I barely had any symptoms and assumed my eye problems were sufficiently resolved. This winter, however, the pain came back with full force, knocking me on my tail for a few weeks. I bought a humidity pen and noticed that places that bothered my eyes were usually very dry, in the range of 20-30% humidity. I've gotten a decent handle on the pain since then. Most days I feel pretty reasonable. About 15 percent of the time I have a weak but distracting eye pain and about 10 percent of the time I have more serious pain. In order to stay productive and minimize pain, however, I've made a lot of sacrifices (and so has my wife, which makes me feel terrible). I stopped commuting to Penn and work primarily from our (very well humidified) apartment. Basic life things terrify me because they invariably bring pain: my arid office; train rides and planes (the moving air kills me eyes); the gym (again, the moving air, I think); walking around outside on a windy day; any other house other than my own.
My heart goes out to those of you without insurance. This has been such an expensive problem with very good health insurance. I couldn't imagine it without insurance.
Anyways, I'm glad this community exists! I hope to benefit from your collective wisdom and, perhaps in time, have enough of my own to share.
Best,
John
I've been lurking here since my eye problems started (roughly around January 2013). I figure it's time I join the community.
I'm a 29 (30 in a few weeks!) male and currently live in NJ with my (patient, loving) wife. I'm finishing up a doctoral program (not medicine related) in Philadelphia and hope to be a professor if I can get a handle on my symptoms.
I have a history of autoimmune-related issues: I had bad psoriasis when I was 19-21 (it went away), developed joint pain around 22 or 23 (got a lot better), and was diagnosed with interstitial cystitis at 23 or 24 (still very bad).
As for the eyes, things were more or less fine until roughly Christmas 2012: I started having neurological manifestations and pins and needles in my hands and feet (lasted 2-3 weeks). I saw a few neurologists over that time but none of my scans revealed anything of note. In January or so, after these issues subsided, my eyes got very, very painful -- like something was tugging on my eyeballs. The pain became unbearable. I wasn't comfortable in well lit rooms and couldn't even look at my computer screen for more than a few minutes. I saw an eye doctor, who noted my eyes were visibly dry and irritated. I've been trying to get a handle on the dryness since.
As an aside, I've seen numerous doctors over the past year, including several rheumatologists. They suspect Sjogrens (I had bad dry mouth too, but that's doing much better) but my blood tests have not confirmed a diagnosis.
Here's what I'm doing (or have done) for my eyes:
1. Restasis 2 to 3 times a day (for roughly 10 months). I have no idea if this is helping. I'm kind of skeptical.
2. 4 Lacricerts (2 in each eye) per day (for roughly 10 months). I do find these to be helpful but I'm still far from normal. Also, they'd be prohibitively expensive without insurance.
3. Silicon plugs in lower tear ducts; upper ducts very recently cauterized. This has helped somewhat but I think poor tear quality may be more of an issue than insufficient tears.
4. Diligent effort to consume lots of water -- 4500 ml per day (past 3 months). Sometimes I think this helps my eyes, other times I'm not sure. It's probably a good habit in any case.
5. An assortment of eye drops, most of which are preservative free. I think I prefer Systane Ultra. I also use the ointments but I've read (on here, actually) that that might not be best over the long term. These get very expensive!
6. I used to try FreshKote but my insurance stopped covering it so I stopped. I think it helped a bit.
7. I was very recently put on Doxy (about two weeks ago). No progress yet but will report back if there's any update.
8. I keep the humidity in our apartment high, at 50-65%. Humidity, by far, has the largest discernible impact on my symptoms. The humidity at my office is 20% and it's around 25% at my in-laws house. I'm toast after a few hours.
9. I have pretty reasonable looking sunglasses that block wind and retain moisture. These help if I got out in the day time but don't offer much for nighttime ventures.
10. I've also taken Plaquenil for 8-10 months (mostly for auto-immune concerns). It seems to help my joints but, as far as I can tell, does nothing positive for my eyes.
11. Salagen. This was prescribed for dry mouth but there's some research suggesting it helps with the eyes, too. I don't notice much of a benefit.
12. Fish oil. I have no idea if it helps.
I track my symptoms by rating several pain markers on a scale to 7. I also track a variety of things that I think might affect my symptoms, including water intake, work load, subjective stress, medications, food, humidity, etc. I've done this everyday for the past 2 months. I'm hoping to see patterns over time, such as when and why my symptoms are better or worse.
It seems that my eye symptoms are affected by the environment more than anything else. This past summer, I barely had any symptoms and assumed my eye problems were sufficiently resolved. This winter, however, the pain came back with full force, knocking me on my tail for a few weeks. I bought a humidity pen and noticed that places that bothered my eyes were usually very dry, in the range of 20-30% humidity. I've gotten a decent handle on the pain since then. Most days I feel pretty reasonable. About 15 percent of the time I have a weak but distracting eye pain and about 10 percent of the time I have more serious pain. In order to stay productive and minimize pain, however, I've made a lot of sacrifices (and so has my wife, which makes me feel terrible). I stopped commuting to Penn and work primarily from our (very well humidified) apartment. Basic life things terrify me because they invariably bring pain: my arid office; train rides and planes (the moving air kills me eyes); the gym (again, the moving air, I think); walking around outside on a windy day; any other house other than my own.
My heart goes out to those of you without insurance. This has been such an expensive problem with very good health insurance. I couldn't imagine it without insurance.
Anyways, I'm glad this community exists! I hope to benefit from your collective wisdom and, perhaps in time, have enough of my own to share.
Best,
John
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