help please! red eyes for months and noone knows what's wrong!

[minniemouse1]

Hi everyone, I have had eye problems since December 2016 - basically chronic redness that I can't seem to get to the bottom of. I have seen many ophthalmologists who aren't sure what it is. When I go for examinations they say that the underneath of my eyelids is inflamed which is what they think is causing the red eyes but they aren't sure what is causing the inflammation. They said there is no signs of infection or blepharitis or dry eye. I have these small red veins in the outer corners of both eyes that won't go away and I wanted to reach out to see if anyone has experienced something similar. The redness is worse in the mornings and evenings. The next step is to have an eyelid biopsy which I will be having next week, the biopsy will be sent away to a lab to see if it explains anything. The next step after that, if it shows nothing, is to put me on cyclosporine, but they have pretty much said that this is the last thing they will do. I've tried all sorts of different steroids/drops prior to this. One thing I have noticed is I started getting post nasal drip, which I heard can be related to sinus issues, once I started tackling sinus problems it seemed to improve the redness of my eyes. I am therefore on the waiting list for a CT scan of my sinuses too. Just wondering if anyone has experienced anything similar or can offer any help?

[PhoenixEyes]

Hi,

You could look into papillary conjunctivitis which can be a sign of allergies under the eyelids, considering your good experience after beginning to treat sinus issues I'd certainly look into allergies. Maybe get tested for what you might be allergic to and try to seek out allergy eye drops without preservatives, e.g. Hylo Dual etc.

I also heard about balms like HayMax people rub around the eye and around nostrils to trap allergan irritants there instead of going into eyes/nose, though some say cheap Vaseline used in the same way can also work just as well.

Video of how to apply:
https://www.youtube.com/watch?v=yv72b3Q9xLw

[minniemouse1]

Hi PhoenixEyes, thank you so much for your reply! I have actually already gone down the allergy route, I have had patch testing and nothing came up, so frustrating! I underwent my biopsy yesterday, the sample has been sent off to a lab for testing and I should find out in a few weeks if there are any results from it. If not, they are going to trial me on cyclosporine to see if that helps. I will definitely look into the allergy eye drops without preservatives and the haymax like you have said. I am willing to try anything to get better, thanks for your help!

[MGD1701]

Hi
did dr check demodex, your glands function (oil comes out when press?) - glands could look prefect but no function?

[minniemouse1]

Hi yes I have been checked for demodex, no sign, and they said that my glands are functioning fine

[MGD1701]

How about InflammaDry test?

according to Dr Mark Schaeffer, OD
''InflammaDry has been shown to significantly and positively correlate with corneal fluorescein
staining scores and abnormal superficial corneal epithelia as seen with confocal microscopy.''
January 1, 2017
http://www.optometricmanagement.com/...ifying-dry-eye

[minniemouse1]

Hi thanks for the reply. What is inflammadry test? I haven't heard of this before but I am in the UK? Thanks

[MGD1701]

more info, http://www.dryeyezone.com/talk/forum...-9-useful-test

lid cleanser: did doctors recommend any lid cleanser? If so, does it help? Did they make other recommendations?

glands image: If I were you, I would ask dr to show me glands & (oil) images/photos just to make sure all ok.
I recently received completely different diagnosis from 2 doctors - just in 10 days. One said all glands were great and no need to do compress while another said, NOT good enough - both did not take images but I will ask them next time. CharlieGreenEyes (from UK) in the forum mentioned the same experience today too - sadly.

Just found this interesting discussion. AlisonW wrote:
''I've gone through at least 9 eye docs and all dismissed Demodex too. Cliradex helped reduce my redness and eliminated a lot of the burning I had. (A board search will bring up all the posts I've made about it as well as replies on other posts.)''. More details:
http://www.dryeyezone.com/talk/forum...cliradex-wipes

If I were you, I would try Cliradex too - wont hurt!

[minniemouse1]

hi MGD1701, thanks very much for your reply. I have also tried lid cleansers and cliradex (not by advice from eye doctors but just after reading all these forums and thinking I wanted to try anything!), but they did not make a difference at all. The opthamologists have told me it is definitely not any kind of blepharitis or demodex. I am still waiting to hear back from my biopsy so it will be interesting to see what that comes back with. I have been doing more research and have been wondering if this could be perhaps thyroid eye disease, I found the following online:-

TED can sometimes be difficult to diagnose and patients may be treated for conjunctivitis, allergy or hay-fever for months before the diagnosis is made. The clues that the diagnosis may be TED rather than the above are:

• Symptoms may occur in the wrong season for hay-fever
• Allergies usually cause itchy eyes, whereas TED does not
• Conjunctivitis usually causes sticky eyes, whereas TED usually does not
• TED often is associated with an ache or pain in or behind the eye, especially when trying to look up or sideways, whereas the other above causes do not

Which is exactly me! You sound very knowledgeable, is this something you have heard of? Do you think this could be likely or would the eye doctors have spotted that straight away? I have had my thyroid checked earlier this year and my thyroid levels were fine but apparently this can occur even if your thyroid levels are normally. My eyes are definitely better than they have been which Is what is making me wonder if perhaps it is starting to calm down, but it just seems to be a very slow process.

[MGD1701]

Hi minniemouse
I have read about thyroid levels can affect dry eyes but do not know much about it.
I guess we could only try to rule out this and that since there are many factors.
cornea - did you examine this?

Inflammation makes MGD worse. so try to fit it as soon as possible.
Diet is great and effective too.

[minniemouse1]

Hi, thanks for the advice. How can I help in terms of diet? Thanks

[MGD1701]

well, everyone is different and it is a big topic.
Good to avoid sugar, process food & take bio (eggs etc.),

[minniemouse1]

Hi MGD1701 what do you mean by take Bio? I have been watching what I eat a lot since I have had these problems in case it was diet related, I have tried ruling out gluten and dairy but it made no difference. I don't have much sugar anyway but I will try cutting it out in case. Thanks for the advice

[minniemouse1]

Just in case anyone is following my story and looking for an update here it is, I had the eyelid biopsy, nowhere near as bad as I was expecting! Just had to wear a patch for 1 day and then had a bloodshot eye for a couple of days. I got the results back from my biopsy today, the opthamologist said the biopsy showed no sinister findings, although mild low degree inflammation was definitely present. He said he is going to take some conjunctival swabs next time he sees me in a couple of weeks, if these provide no findings then I will be started on Ikervis drops. Has anyone else experienced using Ikervis?
I would also be interested to speak to anyone who has experienced Thyroid Eye Disease, I am wondering if this is what I have, I am going to bring it up my next app with the opthamologist but if anyone can shed any light/experience on this for me then that would be great.

thank you

[PhoenixEyes]

I've been on Ikervis for awhile, I get along OK with it. I wouldn't be able to say if it has made a massive difference since it apparently can take months so if there has been a change I imagine it is subtle. I plan to continue with it either way. I'm hoping Xiidra gets approved here for me to try since I still have a lot of inflammation.