What am I doing wrong?

[unicorn]

My eyes seem to be getting worse and I'm starting to despair. They started (back in April) as being chronically slightly red, but without much in the way of discomfort.

Since being 'diagnosed' with posterior blepharitis, ocular rosacea, goblet cell dysfunction (due to allergy - possibly to contact lens solutions) I've been taking Doxycycline (Efracea - same as Oracea (40mg)), doing warm compresses and lid massage twice a day, cleaning with Blephasol, for around 10 weeks. I stopped wearing my contacts three weeks ago. Have used various eyedrops over this time: Hypromellose (stopped due to it containing BAK), Systane (burned like crazy - also same preservative as my contact solution), Blink contacts (didn't burn but didn't help), Viscotears preservative free (prescribed by GP) - didn't help much, although temporarily soothing. Was advised to used TheraTears to repair goblet cell function - have used them to saturate my eyes once or twice a day for the past few weeks. Feel ok for a short while - and also make my eyes WHITE! for about 20 mins .. but I think my eyes are probably drier later in the day when I've used them.

After a couple of weeks of starting all this 'treatment', my eyes started to sting, burn, ache - particularly in the afternoon and evening. I don't seem to get a lot of oil out when doing massages - unless I press really hard, and this inflames my eyes. I stopped warm compresses for a couple of weeks on advice - my eyes were maybe slightly better during this time? Started them a week or so ago as I felt the 'allergy' side of things was more under control (inside of lids definitely less red). I seem to be able to express more oil after a warm compress but my eyes also smart and sting. Doing my own TBUT (seeing how long after blinking I notice a smarting sensation) I get anywhere between 2 and 10 seconds - most often around 4. I have tried to wear daily contacts on a couple of occasions and while they help with the burning sensation, my eyes get very dry and inflamed after a few hours - a few months ago I could wear them all day with no problems.

I also had blood tests recently which have shown no thryoid problems, no obvious allergies etc.

Yesterday was bad. I went out to meet a friend for lunch (something I've avoided doing for a long time). It was like someone was cutting onions in front of me all the time I was outside. Eyes stinging, watering, very uncomfortable. I ended up getting very upset in public... not nice. On the way home I stopped off in my local opticians to buy some Clinitas Soothe - used these a few times yesterday afternoon and found them quite good actually.

Sorry if this is all a bit jumbled... I am just so anxious that things are getting worse and I don't know what to do or how to cope. I am due to see an opthalmologist next week and I am just so convinced that they're going to dismiss me - probably partly due to reading lots of bad experiences on here. I found a new local optician (very nice man - had a good long chat with him last week, although he's not examined my eyes yet) who knows of the consultant I'm seeing, and says 'he's ok... if you catch him on a good day'. Hmmm.

I really don't know what to do. I am so scared of my eyes getting worse. I've barely been going out and am getting more and more depressed.

[sazy123]

Hi, sorry to hear about this. I know exactly how you feel. If you have goblet cell issues--- and need to repair that, have you thought about autogulous serum drops? (spelling?).

I tried them at the alicante vissum eye institute in spain. They were really cheap. I think 100 pounds for 3 months supply or around that.

[unicorn]

Thank you, sazy123. I don't know anything about autologous serum drops except for having seen them mentioned on this site. As far as I know, they're next to impossible to get in the UK, certainly on the NHS, even for people with far, far worse problems than me - so I don't think it's something I could explore at the moment.

I am sure my problems are really minor in comparison with some of the stories I have read here, it's just having quite a significant impact on me psychologically as I am so worried my eyes are getting worse. I think this is, in part, why I'm not optimistic about getting much help next week with the consultant.

[Jenn1]

Its amazing just how many ordinary day to day things can damage our eyes and we think they are safe... such as lasik, tablets, contact lenses and their solutions. I guess we are too hard on ourselves for carrying the blame when we are so ill informed about the risks associated with such products.

@Unicorn, youre not doing anything wrong, the specialists are just helpless as are we with dealing with dry eye and other eye issues, but there are some good treatments that will help to some extent and along with the tincture of time. Hang in there! ((HUGS!))

[unicorn]

Thank you Jenn1. Last night and this morning my eyes are redder than ever. It's really getting me down. I didn't use Blephasol yesterday but can't say I've noticed any difference yet. It's very hard to persist with a treatment when you're not sure if you're doing the right thing, or just making things worse.

I know it takes time, but I just want to be as sure as I can that I'm on the right path.

[Rebecca Petris]

Unicorn, sorry to hear what you're going through!

I'm with Sazy on the serum drops if they can be had.

After a couple of weeks of starting all this 'treatment', my eyes started to sting, burn, ache

Quite telling isn't is. On the other hand you also stopped wearing the contacts recently... I wonder if part of what's going on is that the contacts - while probably part of the problem! - were also partially shielding your eyes from things that were becoming irritants for you, and now that you don't have these "shields" you've got more discomfort?

Any chance there's anything in the blephasol that could be contributing?

You might want to start doing cold compresses (no they don't have the opposite effect of warm ones - but they are good for burning and for redness and inflammation).

Before that consultant appointment... do what you can to set yourself up for a really good appointment. Read my article about getting good care. Bring a friend of family member along if you possibly can. Let us know how it goes. And watch out for depression... often folks with these eye issues have to treat that in its own right because it makes things so hard to deal with.

[unicorn]

Thank you so much Rebecca.

I am definitely thinking that the contacts were 'shielding' me from irritants. What I don't understand is whether they were causing the problems as well as in a way protecting from them, and whether having stopped wearing them my eyes will slowly heal or will in fact continue to get worse.

I have not been able to find any good information out there about problems which occur after contact lens wear and the likely prognosis.

As for cold compresses, I have done a few quick ones and they do seem to help with the redness and inflammation although if too cold they are a bit uncomfortable.

I am very nervous about my appointment next week so your advice is very helpful. I'm not sure if I'll be able to take my husband along with me, but I'll certainly try! The depression is something I've been very prone to for a long, long time, and all this is really bringing it to the forefront once again. The support I am getting here is so gratefully received. Thank you.

[Jenn1]

I have not been able to find any good information out there about problems which occur after contact lens wear and the likely prognosis.

Thats probably because of these companies making huge profits from such products and not wanting to put customers off or lose out financially, and same goes for laser eye surgery and so forth.

When these eye issues first develop, we tend to only see the down side in everything and this can lead to a downward spiral, but you will in time learn to live with the condition and manage it to some degree. I remember when i first joined the forum, my eyes were burning so bad and bloodshot and i couldnt sleep or sit down or eat or get away from the pain and irritation, but now 6 months on my eyes are what i would call 'comfortable' in the sense that I can sleep well enough, do most daily tasks and socialise to some degree, which i could not do before. And I have learnt to wake up in the mornings and wash my eyes and lashes and wipe them with a wet cloth and then rinse, let them dry add drops then just re-wet my eyes throughout the day as needed before the dryness or irritation sets in. To use sunglasses for outdoors, glasses or masks at night if needed and keep the drops near the bed.

I, like many have had more help and education, support and relief from this site than all of the specialists combined! I am very thankful to Rebecca for this invaluable resourceful site and feel honoured to have met such great people on here because of it such as (hope they dont mind the name dropping) super mommy (littlemermaid) and Misscoolspecs (Saag) and all of the other great peeps here and who are new.

I have even given my specialists a link to this forum so they learn about real patients stories/experiences and not just out of a text book! I think specialists should recommend this site to all new and existing eye patients for support and that extra care and advice needed when they are left to cope on their own after appointments and for day to day living!

[littlemermaid]

Unicorn, Autologous serum drops

they're next to impossible to get in the UK, certainly on the NHS

There is rationing in the NHS, yes, but let us see what springs up next - hopefully, we may be able to co-pay eventually if the NHS doc wants to use specialty eyedrops (I think NHS policy will have to concede on this if they are rationing), or may be we can eventually get a sensible price for supplying these from independent companies. The system is loosening up because so many people have private prescriptions to fulfil. Pharmacy suppliers and manufacturers want to sell us drugs, that's for sure.

Important to tell the doc that your eyes are not doing well on chemicals.