Introduction and success story (hopefully)

[Mike G]

Hi,

My name is Mike and I've been reading the dryeyezone forums for a couple of years now and wanted to start posting to see if I could get some advice on where to get fitted moisture chamber glasses in Australia. Ironically, after having dry eyes for about 6 years they improved dramatically in the last week since registering, so this doubles as an introduction and success story.

So a bit about me, I'm in my late 20s and studying. I started to get dry eyes in my early 20s. It started out as mild and got progressively worse. Three years ago it got to the point where it started to impact on my ability to work on computers when the environment was warm-hot, dry or bright. Over the last few months it got to the point where I thought I might have to drop out of my degree.

The main symptoms I have had are:
- Constantly dry and painful eyes (unless in a cool, dark and humid environment)
- Very tired eyes (not affected by environment)
- Very limited tear production and very fast tear breakdown/evaporation
- possibly contributing: rosacea of the nose and face (so ocular rosacea is a strong possibility)

Treatment approach:
- Over the space of a couple of years (about 3 years ago) I went 3-4 GPs who all recommended either hayfever medication or eye drops which did nothing.
- Two years ago I moved for study and had better access to eye specialists. The first I saw told me that I had "Dry Eye Syndrome", told me to use eyedrops more regularly and put me on Doxycycline with very minimal effect. (I was very unimpressed with this guy but I still saw him about 3 times).
- The second Opthamologist I saw diagnosed me with Ocular Rosacea, kept me going on the Doxy, recommended an eye care plan (sterilid wash, warm compresses, massage, eye drops etc), and recommended I try fish oil supplements. After a few months this approach had not achieved any results and while I thought this guy was quite good I had a 3rd Opthamologist recommended to me which I thought I would try.
- Side note: inbetween Opth No.2 and Opth No.3 I saw a GP who recommended I try Akamin, another type of monocycline.
- Opthamologist number three diagnosed me as having "MILD Blepharitis", gave me a slightly better eye care program and sent me on my way. Also a very unimpressive doctor (he read the letter he was sending back to my GP aloud as he typed it and half of the information was incorrect (why I was on Akamin, my past history of treatment, current treatment etc) it was pretty shocking).
- In the last 6 months or so I found a great GP. Very proactive and willing to put in some extra effort. On his advice I cut the monocyclines and tried a couple of other medications. These didn't work out and he referred me to an allergist. The allergist didn't find anything so, about 10 days ago, he started me on prednisone which I quickly started to taper off and replace with Flixonase. He also screened for auto-immune diseases, including Sjrogens (seriously, how do three opthamologists not do this), which all came back negative.
I should say that at this point (about 10 days ago) I was getting very stressed about my health. My eyes were still getting worse and I was seriously thinking about dropping out of my degree. I was having really severe eye pain and my capacity to do work was really reduced. So I tried looking for some moisture chamber glasses (I found wearing sunglasses inside helpful so I thought that some moisture chamber sunglasses could be helpful) but I couldn't find any that fit!
The other thing I thought I would try was to fix my sleep, exercise, and diet.

I started this last Saturday, by Tuesday SUCCESS! my eyes were feeling a bit better and they feel even better now. By better I mean that I can tolerate a dry and bright room which I could not do 10 days ago.
My fatigue is also gone. I've been a bit tired from the additional exercise but the eye fatigue is almost non-existant. Last night I only got about 5 hrs sleep (the new sleep plan is a work in progress =D) usually this would completely wipe my eyes out the next day but as I'm typing this my eyes feel pretty good (minor irritation and dryness but ignorable).

Hopefully this isn't some kind of short-term "false" recovery but I think I have probably improved because:
- A lot of dry eye problems may be linked to inflammation
- Inflammation can be caused by a lot of different things which might mean (and I haven't found anything to back this up but I don't see why this might not be the case) there might be multiple things that I am doing that were exacerbating my eyes. Also, some medications may not cover the all the sources of inflammation or be adequate to compensate for the magnitude of the inflammation.
E.g. fish oil (obviously not a medication but a good example) can have a positive effect on your eyes but probably won't do anything if a) your omega 6 and 3 ratio isn't between the 2.3:1 - 1:1 range, or b) you have a high level of combined Omega 6 and 3.

So a lot of the things I am doing now are anti-inflammatory:
- Prednisone is an anti-inflammatory and Flaxonase is essentially a topical anti-inflammatory.
- My new diet is anti-inflammatory and is also a food exclusion diet in case I am getting inflammation from food intolerances.
- And finally, better exercise and sleep are also anti-inflammatory.
- I should also note that I am still doing a morning and evening eye care routine (sterilid in the shower in the morning, 5 minute warm compress, massage, eyelid clean with cotton buds in the evening, eye drops in, and flaxonase to finish if it is the morning)

Things I used to do that probably made it worse:
- Late nights
- No exercise due to studying all the time and a pretty significant back injury
- Eating crappy food (whole packs of chocolates in a sitting) and hardly drinking any water
- Stressful lifestyle. I still have this but I have made some changes to make life easier on me.
Reading this I'm actually surprised I didn't get super fat!

So hopefully hopefully hopefully (touch wood) my dry eye is an inflammation problem which will be reduced by this new regime. Also, hopefully I won't need mositure chamber glasses but having said that I'm still interested in getting some, but that will be another post. I'll post again in the future to update this as to my relapse/recovery and if further recovery, which of the things I am doing is having the positive effect.

Cheers,

Mike

[sunshinelover]

Wow! I love to hear success stories! Yes, please keep us updated! You seem to be on the right way.

[patrick]

hi mike and congratulations!,

i really haven't much time to write a post at the moment.
but i can really relate to the exercise part of your story.
i used to be a runner and while running and a considerable while after that my eyes didn't bother me at all.
due to circumstances i had to quit running some time ago,but i really want to start with it again.
its just so beneficial for the whole body!

patrick...

[Mike G]

Update:
So the improvement I got was all from the Cortisol steriods =(. Now that I know more about them this isn't surprising and I think I might have had a bit of euphoria.

Anyway the quest for better eyes continues.

Since then I have seen another Opthamologist who, like all Opthamologists, seemed to do a pretty good job of avoiding my questions and focusing on how I wouldn't improve. I'm actually really interested to know if this is just a thing with Australian Opthamologists. I've seen a bunch of doctors over the years for various things and never have I encountered a group like this. Maybe this is because the eyes are affecting me so much more than anything else I have had so I'm more attuned to it.
But maybe they are right, maybe my eyes won't improve. But I think that telling patients that "yes your eye condition is annoying but you just have to tough it out" after they have said it may force them to leave their degree, may not be the most helpful thing to do.

A couple of potentially positive things though.
1. Apparently my eyes aren't as dry as a lot of other people's eyes that have less pain and discomfort than me. The opthamologist didn't say this, but I am wondering if some psychological management of pain might help
2. I saw a dietician the same day and started an elimination diet for my IBS symptoms. Previously I had started this on my own, as it takes so long to get an appointment, and it was good to find out all the things I had been doing wrong haha. I also really recommend seeing a dietician if you are thinking about doing some kind of diet change because I really was doing a lot of things wrong.
I should probably search the forum to see if there has been any discussion of this (http://www.sciencedirect.com/science...42356508001559) paper already, but given I do have SIBO/IBS symptoms there is a small chance that the elimination diet will work for me (I have ocular rosacea).

[browneyesblu]

Hi Mike,

Thanks for sharing your story. I also have ocular rosacea and am very interested to learn what your new diet consists of? They should NEVER tell your eyes won't improve and you just have to live with it. I don't believe that's true and in fact my eye doc promised me he would get me comfortable (there's no cure but the condition can be managed). Have you tried azithromycin eye drops? In this country they call them Azasite and they seem to help a lot of people. They are an anti-inflammatory but non-steroidal so you can use them for a long time without worrying about the side affects of steroids. LOL.

[poppy]

Update:
So the improvement I got was all from the Cortisol steriods =(. Now that I know more about them this isn't surprising and I think I might have had a bit of euphoria.


Since then I have seen another Opthamologist who, like all Opthamologists, seemed to do a pretty good job of avoiding my questions and focusing on how I wouldn't improve. I'm actually really interested to know if this is just a thing with Australian Opthamologists. I've seen a bunch of doctors over the years for various things and never have I encountered a group like this.

Yep, improvement through steroid drops can sometimes seem like a miracle, especially for a new patient. I often feel that steroids are a crutch for lazy eye doctors who can make the patient feel temporarily better, heal their corneas to an acceptable level, then send them on their way to be someone else's problem.

It is definitely true that Australian ophthalmologists are of a very poor quality, especially with dry eye disease or anything resembling such. Of course eye doctors the world over aren't the best with dry eye, but in Oz they are particularly drawn to cataract surgery (as well as the good old lasik) due to very high cataract surgery medicare rebates in Australia, with little interest in other areas. Given the shortage of eye doctors in Oz it ensures they will always have some form of work no matter how rude or bad they are, and they certainly don't give a toss about dry eye. The standard of care in Oz for dry eye is very low - in the US patients will almost always at least get offered punctal plugs, in Oz that's a rarity and a lot of common stuff in the US like restasis isn't readily available let alone prescribed here. Generally in Oz an eye doc won't offer follow up visits to a dry eye patient no matter how severe the disease, whereas US patients here generally seem to get offered regular follow up even with dry eye that isn't clinically severe.

I am a dry eye patient in Oz with clinically severe dry eye and corneal scarring and I am sad to say but I have officially given up on getting any help with my disease. I actually find this somewhat releasing. I think every patient has to feel they have tried every thing they can before they give up, but I think as a patient in Oz, particularly if you are not in Sydney, you cannot have the same standards as most other patients on this forum. The standards of care in Oz and the treatments available do not match those in the US and medicare rebates for dry eye treatments do not exist. There is also no private health cover to my knowledge in Oz that covers any form of dry eye treatment nor opthalmologist's visits unless you are having surgery or are admitted to hospital.

If there was any advice I could offer to my younger self when I started to suffer from this it would be:

a) stuff your eyes with genteal gel constantly to prevent corneal ulcer and reduce scarring and abrasions/erosions
b) don't waste one cent of your money on an opthalmologist, optometrist, GP, or anything else related to your eyes

Edit: one other thing I would tell my younger self is to practice daily lid hygiene if your lids tend to get crusted, but it doesn't matter what form you use. Just clean up the crusts and crap.

[DCRdryeye]

Hi Mike,
I'm in Australia too and agree with everything poppy has said, especially: "don't waste one cent of your money on an opthalmologist, optometrist, GP, or anything else related to your eyes".
Who gave you prednisone? was it orally? NEVER take Prednisone, look up the side effects. It should be reserved only for life threatening conditions.

Mike there are many things you are yet to explore. You didn't mention autogolous blood serum, azithromycin ointment, restasis (cyclosporine drops) - all available in Australia. And how did you survive for so long without moisture chamber glasses? You can get prescription moisture chambers, I got mine done in Colac, Victoria. It depends where you are, try some of the new Wiley X moisture chambers at a local Harley Davidson motorbike store. I was in Melbourne a few weeks ago and a huge Harley Davidson store in Beckham St (off Elizabeth St) had the full range. It was great to try them on, they looked awesome and I bought two pairs.

[littlemermaid]

Mike, Re steroids and ocular rosacea, we've found them unavoidable to suppress the chronic keratitis and MGD but been able to taper off to very little eg 1 drop/week, subject to maintaining the eye surface very well with lubricants + keeping the glands good with cleaning and some antibacterials when needed.

I would ask DRCdryeye or someone who's made it to eg Sydney or Melbourne how they've obtained cyclosporine (Restasis or generic) and the azithromycin (Azasite or generic). Maybe phone or email your regional teaching hospital Eye Clinic pharmacy for advice. I love pharmacists, especially the ones in specialist Eye Hospitals. They don't get that many enquiries yet because people think they have to ask the docs about meds. Specialist Pharmacists are way the best on sourcing meds, including formulating and importing.

Do you have other signs of rosacea? or is this like a hypersensitivity in the eyes?

Poppy's right about being super-careful to keep the eye surface as good as possible and avoiding trouble.

I still can't get round the feeling, Poppy love, that the best place to be is in the big regional teaching hospital cornea or chronic inflammation clinic if we can make it there. We were seen regularly in London by an Oz ophth for a while (paediatric Auckland and Melbourne) but he was really good. Why waste time.

What's worked for some of us is to email a top anterior segment ophthalmologist, preferably with qualifed ophth junior staff to deal with correspondence, in a big public regional teaching hospital who's not so much 'on the make', and ask who to see. Mike, this might work for you with so much at risk. We summarised our story and problems and attached photographs of the trashed eye surface. Amazingly, this got passed around the regional service until the head honcho replied through his staff with good advice on options on who to see and how to get in there.

I spend money on ophthalmologists and other docs but it's important to be clear what we're paying for and whether the service is delivered.

Mike, It's very important to protect your eyesight by seeing the right regular ophthalmologist or, at least, dry eye specialist optometrist. Especially because you are young and need to maintain your eyes to last a lifetime. And some kind support here for this young guy would help. Spmcc is really good on living with rosacea, identifying triggers etc. Stress alone can trigger IBS as well. Do you still have it on holiday?

Any luck with Student Advice and counselling services? Leaving the course is too big a decision without pursuing all the opportunities.

[soaps]

I agree with little mermaid there r some excellent Drs here in oz but also bad ones too. i only have two eyes and after silly lasik i don't care how much i spend to fix this dry eye stuff. specialists cost and that can't b helped . your eyes will improve like my dr says it's not IF but WHEN so Im waiting for that.
Did u know u can get authority script for eyedrops. so 30 boxes of theratears cost $36 only . ahhhh just found this out after so many months. but think of future savings !
Perhaps u can defer ur course if u feel u need a break? I wish i had taken a break earlier but everyone is different.

[marsupial32]

Mike, one of the patients mentioned autologous serum. I had very sudden onset of what eventually was diagnosed as MGD probably due to age and 30 years of contact lens wearl I am in the US and ophthalmologists I went to at a large HMO were hopeless for correct diagnoses. After 19 months of misery I finally got to an outstanding doc who prescribed the serum and also suggested scleral lenses. I started the serum Mar. 12th and it worked--my eye (only one was affected) is now wonderful! The cornea which looked like frosted glass & caused a lot of the blurred vision (along with lots of stringy mucus) is completely OK. The OTC drops, antibiotics, steroids didn't do much. Any drops which contain preservatives were very irritating so I had to stop using them. The serum contains nutrients, growth and antibacterial substances, anti inflammatories which heal the eye. It could have been the inflammation from lack of good tear film which caused the MGD--I don't know. Serum has to be prepared under very regulated, sterile conditions; I don't know what you have available. My blood work was done at a large medical facility at UCLA. Cost is another factor;our insurance doesn't cover this procedure--but you only have one pair or eyes and they are priceless. The total cost was $395 for a 3month supply of serum. I hope you can find a doc who can help you with this.

[littlemermaid]

Australian Medical Association, National Conference June 2012, Dr Grant Phelps 'Professionalism in the Workplace' and recertification and revalidation www.youtube.com/watch?v=ZqBNwAWxAuM Let's hope this works out.