Thygeson's Superficial Punctate Keratopathy

[KittyKat1007]

Ok so I posted a question last year about having eye problems I went to 4 specialist now and eventually last week I got Diagnosed with Thygeson's disease. Now I have read up about this Disease and they said the causes are unknown etc. But I want to know is there someone doing more research about this? and will I loose my eye sight if I keep on getting this disease but I am very impressed that it took the doctors 1 year to figure out my problem :)

So If someone could answer those questions that would be awesome :)

[jkpm18]

Thygeson's SPK - Personal Success Story

In this post I will describe a few steps that I take to significantly reduce the reoccurrence of my Thygeson symptoms.  What I describe here has been very successful for me.  Hopefully it works for others too.

I have had Thygeson's keratitis for many years.  It used to flare up once or twice a year, and I would go to my eye doctor to get a steroid drop prescription.  After a couple weeks of mild steroid drop use per my doctor's directions my symptoms would go away.  Upon the next flare-up I would repeat the cycle.  

I never liked the idea of using the steroid drops because supposedly they increase one's risk of developing glaucoma and other eye issues.  A couple years ago my flare-ups became more frequent.  Instead of having to go on drops once or twice a year, I was having symptoms every two or three months!  Using the steroid drops this often made me very uneasy.

Thankfully, I finally figured out a combination of precautionary measures that I can take to keep my eyes from flaring up.  Since adopting these 3 steps over a year ago, I have not had a single flare-up.  After years of testing out various hypotheses about what was causing my flare-ups, I finally developed these three rules for myself:


(1) No caffeine
(2) 7 or 8 hours of sleep per night
(3) Use over-the-counter lubricating eye drops


Regarding Points 1 and 2:  Years ago, I thought stress and lack of sleep were the primary causes of my reoccurrences.  I thought if I just got enough sleep and remembered to stay calm I could avoid flare-ups.  But as I mentioned above, a couple years ago my flare-ups started increasing in frequency, sometimes even after periods of good sleep and low anxiety.  I was beginning to despair.  Then something donned on me.  I realized I had been drinking more coffee that year.  Originally I thought that primarily lack of sleep and extra stress were causing my Thygeson's symptoms to worsen.  But one day it struck me that less sleep meant I was drinking more coffee.  I thought about my last few eye flare-ups and remembered they all came after periods of increased caffeine consumption.  I hadn't been particularly under-slept during some of those periods, but I had been drinking coffee more frequently.    

So about a year ago I cut out caffeine completely.  No coffee, no tea.  And I haven't had a flare-up since.  Cutting coffee may sound difficult, but it's a price I'm glad to pay to avoid the agonizing pain of a Thygeson's flare-up.  

And to be on the safe side I still try to get enough sleep and remember to breathe when I'm feeling stressed.  

Regarding Point 3:  If I suspect even the slightest hint of irritation or even the smallest grainy sensation in my eyes I start using over-the-counter lubricating eye drops a couple times a day for a few days.  I prefer to use "dry eye therapy" by the brand Thera Tears.  I'm sure there are other brands that work too.  Even when my eyes feel completely fine, I still use these drops every other night or so.  I have also had one or two near-flare-ups, and in those instances I use these drops several times a day for a couple days.  It really seems to work.

So by following my three rules, I have been fortunate enough to avoid another flare-up.  (1) NO CAFFEINE, (2) GET A FULL NIGHT'S SLEEP, (3) USE OVER-THE-COUNTER EYE DROPS.

Hopefully this helps others out there like me.  Let me know if it works for you.  I would love to compile more anecdotal evidence about this protocol.    

[John C Hagan III, MD, FACS, FAAO]

Thank you for sharing.

[lilotter]

I just wanted to point out as someone with TSPK that this illness is far more than annoying and for us, it is very serious. I don't know from day to day if I will be able to drive or if I will be curled up in a ball of agony. I am always exhausted and sometimes have to miss work. I get very frustrated because in my experience the medical community does not seem to get that this disease is life altering and debilitating. Please be careful of the words you choose to address people who are suffering with it. I also recommend you spend some time reading patient's personal stories. I joined a Facebook group that has been a tremendous support and I encourage anyone here that has TSPK to do the same.

[lilotter]

I just wanted to point out as someone with TSPK that this illness is far more than annoying and for us, it is very serious. I don't know from day to day if I will be able to drive or if I will be curled up in a ball of agony. I am always exhausted and sometimes have to miss work. I get very frustrated because in my experience the medical community does not seem to get that this disease is life altering and debilitating. Please be careful of the words you choose to address people who are suffering with it. I also recommend you spend some time reading patient's personal stories. I joined a Facebook group that has been a tremendous support and I encourage anyone here that has TSPK to do the same.

[Gman2014]

I am a 42-year-old man and I was diagnosed with Thygeson's about 7 years ago.  I see a cornea specialist for this.  I use Lotemax eye drops to treat it (I believe it is a steroid so I get my eye pressure checked when I see the specialist to make sure I don't have abnormal pressure which could lead to glaucoma).  The doctor seems to think that the disease can be "cured" if the treatment with Lotemax is tapered out long enough (fewer drops over a longer amount of time), but we've been trying this for years and it keeps coming back within a few months each time I stop the drops.  

[shanemichael]

Hi,
I have thygeson's would I be able to get lasik eye surgery?

[unbidhawk]

I have this disease and i currently go to a specialist but the drops dont really stop the pain. I am currently even thinking about a medical cannabis card. i am not thrilled about it but I cant stand the pain anymore. I will report back if this works. if anyone has already tried please let me know because i only want to do this if it will really work.

[John C Hagan III, MD, FACS, FAAO]

See a corneal specialist at the Department of Ophthalmology at a research university medical school near you. There are some research protocols available if standard therapy doesn't work.

JCH MD

[ihaveaneyedisease]

I have had the disease since kindergarten. After years of eye doctors not knowing and trying experimental treatment, I finally found an eye doctor who could give it a name but not much else. He said it would go away after puberty. Nope. It wasn't until college when I used RESTASIS that I finally got relief. I was clear for almost 6 years. Then I started having flare ups again(having a terrible one right now). I went back to the doctor who had given me restasis (the only medicine that ever worked) but he saw me for five minutes prescribed steroids (that never helped), told me it will never go away, and left.

This is a frustrating disease that I do think has a huge impact on our lives. I couldn't speak up in class, give presentations, be in debates, plays, anything where I had to have my eyes open for long periods of time. I really do think it stunts self confidence. And of course, like everyone else on this post, everyone asked if I was crying.

The pain in excruciating and debilitating, and no matter what those who don't have the disease say, it affects our lives.

[John C Hagan III, MD, FACS, FAAO]

See a corneal specialist at the University of Washington, School of Medicine, Department of Ophthalmology. There are some research protocols available if standard therapy doesn't work.  

Continuing to wear contacts is very controversial as contacts themselves can cause a syndrome that can mimic TSPK

JCH MD

[TheSarah]

Wow as I'm reading through these comments I'm finding so many similarities to my own situation. I was diagnosed correctly when I was about 12. It was a year of guess work until I found a doctor in Seattle that knew what they were looking at. I'm 23 now and still learning how to best mitigate my symptoms.

I can't believe researchers don't think TSPK isn't serious. I'm so tired of telling people "No I'm not crying, I'm just sensitive to light" or "No I'm not wearing sunglasses at night because I think it makes me look cool." When I was in school I had to miss classes because of the pain. Now I'm missing work. I totally agree with Sftbllgrl979, it can really hurt your self-esteem. It might not be so bad if it wasn't so rare, but no one has ever heard of it and never understands what we are going through. I'm so glad to have found this forum though. I feel less alone reading your stories.

KittyKat1007 I hope your finding all the information you're looking for, I know there isn't much. Here are some of the tricks I use:

-Steroid eye drops

-Heavy sheets over the windows in my room so no light gets in when I'm sleeping

-I wear contacts which really do help smother it. The Clear Care solutions work better than regular saline at preventing flare-ups

-I wear make-up and have to be very careful to wash it all off around my eyes before going to bed

-If I have a full blown flare-up, hot showers can give at least 30 minutes of welcome relief

Does anyone else have any other suggestions?

[Bouf]

The reason there’s no research being done to find a cure is that, because it is so rare, there’s no money in it for drug companies.

[John C Hagan III, MD, FACS, FAAO]

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[John C Hagan III, MD, FACS, FAAO]

There is money being spent on research and papers are regularly published on new treatments. One of the most recent is the use of Restasis.

[John C Hagan III, MD, FACS, FAAO]

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[Sftbllgrl979]

I know this post is several months old but as a fellow TSPK sufferer I just had to let you know I completely agree with you.  I was diagnosed with TSPK at the age of 13.  I am now 33, and still suffer from flare ups.  I rarely have a day where I don't have a red eye and other symptoms.  I remember at the age of 13 being told- we don't know what causes this & there's nothing we can do to make it go away.  It just has to run it's course which is usually 3-5 years.  As you can imagine at 13 I was horrified I'd have to live those 3-5 years in agony and embarrasement as a flare up makes my eye look horrible.  Little did I know 20 years later, I'd still be suffering with the same stuff.  It does affect your life.  There are lots of times I've had to stay at home nursing horrible pain with light sensitivity.  No one understands when I have to cancel plans or just don't feel like going out because "My eye hurts".  It has hurt my self esteem greatly because I feel like such a freak as I walk around with a puffy red eye.  To make matters worse for the last 15 of those 20 years my tear duct in the same eye has just stopped working all together.  I have no natural moisture in that eye.  I contantly have to use rewetting drops.  Do you know how weird it is to only cry out of one eye?  I guess my point is, any doctor or person for that matter, can tell me/us that this doesn't affect you enough to not work or so on but until you spend 20 years of your life with a disease that no one knows what causes it or nothing can be done to fix it, they have no clue what it's like.  I've said for so many years I don't understand how doctors have come up with a way to put artificial hearts in people but they can't figure out an eye disease???  I know in comparison doesn't even come close to life threatening but it's still a miserable life living with TSPK!  My sympathies to those other sufferers out there!

[John C Hagan III, MD, FACS, FAAO]

Recently some papers have appeared in medical journals about treating TSPK with restasis. Discuss with a corneal ophthalmologist.

JCH MD

[Physicsgrl]

I totally feel your pain! This might not be life threading but it definitely impacts my life. As a financial analyst required to review numbers in a spreadsheet a flare-up puts a stop to my work. Plus, I think my TSPK my be related to my daily headaches. I really do wish to see more research otherwise I have no hopes for ever having "normal" vision.

[John C Hagan III, MD, FACS, FAAO]

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[TSPK_Patient]

I'm not sure what advice to offer other than I'm working on a solution to the very same problem of my own, I live in Washington State and am a 21 year old male.  I've had this chronic eye disease on medical record since I was the age of 14.  I keep reading all over where doctors say this "burns itself out"; but I'm starting to think it just really depends on the case.  Also I've had no luck with specialists, I've seen multiple ophthalmologists and I get furious with them every time they tell me it doesn't prevent me from working, or living a normal life.  Well obviously if it's still affecting me to this day after 7 years, it does prevent those very things.  Something to be very aware of about this eye disease that it must be different for everyone or at least vary in severity a lot; because there are days where I can't even do as much as go outside or leave my room because the pain in my eyes and how sensitive they are to the light, and the fact it feels like grains of sand in my eyes.  I've been treated with topical steroids, I've been prescribed Fluoromethalone, or more commonly known as FML which comes in various sizes.  Right now I'm actually on a treatment because I'm going through another flare up which consists of burning, watering eyes that are extremely sensitive to any form of light and even when I have them closed I still deal with discomfort and pain in my eyes that prevent me from driving my car, going outside whenever I'd like, and much more.  I can even remember when I was in Jr. High I was allowed to wear sunglasses during class because the lights in the room were too bright for my eyes, even though they technically weren't even very bright at all.  Sorry to ramble on, I guess what I'm trying to get at is that it's hard to find answers or much valuable information on this eye disease because even specialists don't really know much about it.  As a matter a fact, my optometrist is more knowledgeable of my disease than any "specialist" I've seen.  Anymore, especially with rare, unknown diseases - these "specialists" aren't any good other than to have a fancy name and to take plenty more money for something they don't deal with hardly ever or have ever in their life with any of their patients.

[jkpm18]

Here are the steps I take to prevent reoccurrence of my Thygeson's symptoms:  

(1) Completely remove caffeine from my diet.

(2) Always get enough sleep.

(3) Use over-the-counter lubricating eye drops at the first hint of my eyes feeling even the slightest bit abnormal.  

I haven't had a flare-up since adopting this protocol.  I hope it works for others.  

[John C Hagan III, MD, FACS, FAAO]

TSPK rarely results in loss of vision, and eventually "burns out" in most people. It usually responds to steroid drops. It can be difficult to diagnose.  There are no "TSPK" centers for research because money for research is limited and the disease is usually annoying but not serious.

JCH MD