I can't cope anymore

[lizlou29]

NotADryEye - No I haven't asked about that. I don't know much about it to be honest. How frustrating for you to actually have to prove you've had it. I think I read about your description of how it felt. I would describe the pain I have as hot pin pricks over my eye lids and as if hairdryer blowing in my eyes but the type of pain changes day to day.

Not sure what to do right now. I've stopped the Pred steroid drops because I felt like they were making things worse and I can't tolerate the 2% Cyclosporine. Haven't got an appointment for 5 weeks but I can't stay in this state of not being able to go outside.

I don't do warm compresses because I have ocular rosacea and it makes them feel drier but my ophth thinks I need to do them as it will be better long term. My eyelids are so hot and red right now that the thought of a warm compress makes me wince but I'm worried this is why my eyes seem to be getting worse and worse.

I was thinking about contacting the eye clinic to see if I can try Azyter but I'm worried about the burning it can cause as my tear film is so poor. Could try it in one eye first I guess.

Not sure what more I can do at the moment. I have moisture chamber goggles for home now and I'm not really going out. I normally push myself to go out but I went out yesterday morning briefly and my eyes were almost swollen shut when I got home and were awful for the rest of the day then I was awake on and off all night to put drops in.

[NotADryEye]

lizlou, next time you see someone you might ask about conjunctival chalasis and maybe even Cogan's syndrome, also known as map-dot fingerprint. I was once misdiagnosed with map-dot so I don't know the exact symptoms. But a neighbor has it. She says it feels like pin needles or sometimes eye lashes all over her eyes. There are some good threads here about map dot. Chalasis can present in different ways. I don't know about the pin pricks specifically. But I know I couldn't keep my eyes opened at all.

I don't really know, but you may have more than and one issue. And we already know that you are hypothyroid or borderline hypo and that your doctor is taking you off Levothyroxine.


You might try cool compresses if your eye lids are so red and hot. Is it allergies? I think you were tested and everything came back negative, is that right? Still, you may have some sensitivities that do not turn up positive on allergy tests.

So many things can contribute to poor quality tear film - hypothyroid, demodex, chalasis as the tissue irritates the meibomian glands, bacteria, food sensitivities, hormone imbalances, and on and on. That why I do wish you would see one of those doctors on the dream team, at least for another opinion, if you can possibly manage it.

Are you aqueous deficient as well?

[lizlou29]

Thanks NotADryEye, I'll have a lot to ask about at my next appointment.

Allergy testing was all negative. I'm seeing my GP this week so I'm going to try and get her to do proper hormone tests as the endocrinologist said the test she had done meant nothing in isolation, depends where I am in my cycle etc.

I am aqueous deficient as well. Schirmmers of around 1/2 last time it was checked.

Thinking about seeing someone else on the dream team....

[littlemermaid]

We are finding our particular autoimmune/allergy response in the eyes and around the mouth and nose, and most recently gastro, is more like what they call 'type IV hypersensitivity' (Moorfields think/thought hypersensitivity to Staph overgrowth but I think it's to more than that). Some US people here have got confirmed reactions by testing that pathway but it's not available NHS, I'm told.

Some people here have what some immunologists sometimes call type III response in eg lupus, rheumatoid arthritis, fibromyalgia, and there is a lady Ygwair with erythromelalgia.

Anecdotally, some people report using meds that seem to have tweaked the immune system, like we did (we got this periorificial dermatitis/rosacea set up originally from topical steroid 28 days bd for minor derm on face during adrenarche, urticaria reaction to Maxidex and prednisolone eye combo, intracranial hypertension response to oral antibiotics). We close the puncta every time we use steroid eyedrops and wipe off around the eyes with damp cotton wool because we don't want systemic absorption down the sinuses.

We've found it's been best to work out triggers and intolerances by elimination, eg this soap or gluten/wheat or sugar or red meat and tomato is making my eyes worse, thinking 'when I eat/use something else for 2wk-1m, my eyes get better'. (I listened to EyeAllergyKids from Sri Lanka, and SAAG and Spmcc experience on this, also LaDiva) We are eating lots of good fish too, as suggested by excellent Rheumy.

Currently we're thinking about how the immune system is affected by symbionts in the gut eg Cultivating our frienemies, Eric Harvill, mBio 2013

The Paed Ophth says she looks the best of all his patients dealing with this skin/eyes nightmare. And that's saying something.

[NotADryEye]

lizlou, I am rooting for you. We all are!!!

littlemermaid, you share excellent information. Agreed re: fish, especially the salt water variety that is high in Omega 3's. Thank you!!!

[lizlou29]

Thanks everyone for the help as always.

I'm seeing Dr. O'Brart in London on Friday, will ask him about Demodex and find out how much MG probing costs, doubt I can afford that right now though. I'm not expecting miracles but I haven't got much to lose right now!

[Guest]

Hi LizLou... so sorry to hear you're having so much trouble!! I'm in a rush, so will write this in a hurry, but hopefully it helps some....

I really want to give up because what is the point of a life lived in pain?

You just have to tolerate the pain until you get back to being functional again.. it will not be forever - don't forget that! Not sure how old you are, but odds are you have decades of awesomeness ahead of you... this period of your life is a tiny blip on the radar in all that... just keep on trudging through this hard time, and you'll come out the other side eventually... you'll see!

I can't do much for the mgd other than take doxy and omega 3 as warm compresses aggravate the rosacea and have never given symptomatic relief.

re: rosacea - might be affecting your MG's - have you tried a very strict anti-inflammatory diet? ie. zero sugar, low carb, no processed foods, lots of fresh vegies, lean animal protein to keep you full etc. I found the rosacea diet in Brady Barrow's book "Rosacea 101" very helpful... maybe you'd be the same?

I just had to deal with a different GP at the practice I go to as mine is on holiday. She wanted to prescribe me antidepressants but she doesn't understand the eye condition very well and thinks a lot of it is in my head and that "if you think that it will be drying then I know you'll be coming in here saying it's cause you problems, you need to stop thinking about it".

This GP clearly has zero understanding of what you're going through - that's like telling someone with a sprained ankle "if you think that it will hurt to walk on it, then I know you'll be coming in here saying it's causing you problems, you need to stop thinking about your sprained ankle" What an absurd thing to say, right? It's demoralizing to have a doctor be so dismissive of your issues, treating it as if it's all in your head - this GP sounds clueless... she may be well-meaning, but she's clueless. I wouldn't waste any more time going to see that one hehe

The 2% cyclosporine is way way stronger than Restasis (I can't do the math) and I think normally people would titrate up to it. The burning lasts a good few hours and feels like someone is rubbing onions into my eyes, not sure if I can tolerate it but then there aren't man other options for AD. I've stopped the steroid drops as even the PF ones were irritating my eyes.

Hmmm... you definitely sound like you need some anti-inflammatory stuff on board though... some things that have helped me a lot with burning eyedrops:

1) keep them in the fridge - cold drops sting a bit less
2) about 15 minutes before putting in the irritating drop, put in a drop of PF artificial tear - the medicated drops should feel a bit better going into an eye that isn't bone dry
3) about 15 inutes after putting in the irritating drop, flush out your eye with a PF artificial tear, also rinse any irritating drop residue off your eyelashes (I close my eyes firmly, and stick them under running water in the sink to clean my lashes)
4) as often as you need to, if eyes are burning, turn on the tap in the bathroom until it's running ice cold, then close your eyes firmly, and splash that cold water on closed eyes - helps to calm the burning - I used to do this several times an hour if need be and it helped me keep my sanity.

Lastly, you're right... the 2% cyclosporine is strong.. maybe ask your dr. if you can titrate up to it....

Also, for me, I could never use cyclosporine so close to bedtime - if I did, it would leave my eyes red and irritated as all hell for days - instead, I use my last dose of the day about 2 hours before bedtime - give me time to flush it all out before I sleep at night (putting it in and flushing it out closer to bedtime doesn't work for me)

I now have moisture chamber goggles for when I'm at home but as well as the sunglasses but I can't quite bring myself to wear the clear lenses when I'm out and about - a hurdle I'll have to get over soon I think. I think I'm lucky in that I have no abrasions/erosions considering how dry my eyes are but I know I've got to take good care of them to try and avoid that.

Get a pair of sunglasses moisture chambers (ex. Wiley X's). That's what I do since I can't bring myself to wear the clear Wiley X's in public either. Wear them everywhere - I wear mine shopping, running errands, indoors and out - even at work where it's business attire and the Wiley X sunglasses don't fit in at all - but it makes a world of difference. In the beginning, I found it depressing to wear them even indoors, so I just forced myself to NOT look in any mirrors when wearing them... made it easier to pretend I was still the old me, which was good for my mental health hehe

Allergy testing was all negative.

You still may have some food or other sensitivities that traditional allergy testing can't detect. In my case, it's wheat - I give up wheat, and my rosacea AND MGD completely clear up. Go figure. I was shocked. Eye redness and itchiness improved a ton too.

Your mileage may vary of course, but could be worth a trial of giving up the most common food allergens for a month, then re-introducing them one at a time.

Anyhow, baby your eyes... this will pass... (just maybe not as quickly as you'd like, right?)... you can do this... we have, and you can too... you'll see. It'll be so worth sticking it out when you come out the other side of this and are feeling more functional.

re: sleep issues - sucks to not sleep... but do your best to give your eyes a chance to rest for at least 8 hours a night... maybe if you look at it as time to lie down and relax, not necessarily sleep, your body will eventually take the hint and fall asleep... either way, even lying down relaxing with your eyes shut for 8 hours a night can be useful to rest your eyes. The sleep will come eventually... it will!

re: passing the time when your eyes hurt too much to stay open - use cool compresses as much as possible to bring down inflammation - instead of watching TV, just listen to it (for most shows this is enough to figure out what's going on.. you can always peek once in a while if you have to) - audiobooks are fabulous for passing the time (I use an ipod touch to listen to them, and you can buy them from audible.com... your local library may have them too, so check that also)

re: depression - things I found helpful that you might also...
a) I trained myself to not dwell on everything that was sucking, like my eyes... it took time to get good at it, but with practice, you can get pretty good at putting all the dark thoughts and worries into a little locked box in your brain that you refuse to open
b) If I'd feel a fresh wave of depression coming on, I'd force myself to think of things I was so lucky to have (ex. not blind, have a roof over my head and am not homeless, live in a safe country (ie. not a war-torn one like others do), have clean water, have enough food to eat, not a paraplegic, not dying a painful death of cancer, etc. etc.)
c) kind of related to (b)... I'd think of all the things that would be so much worse than what I was going through, and be glad that wasn't happening to me... crazy as it sounds, I'd listen to a lot of post-apocalyptic fiction and the like since it was pretty much guaranteed that the character's lives were waaaaay worse than mine (and I find it fascinating to listen to, so there's that too hehe)
d) distraction, distraction, distraction - try to find things you can do, even if it's going out armed with copious amounts of eyedrops and your sunglasses Wiley X's and only pretending to have a good time (you might find that acting your heart out and faking it leads to you actually having a good time for real after a time... works for me... maybe you too?)

[NotADryEye]

lizlou, great to hear that you are seeing Dr. O'Brart. Keep us posted post appointment.

SAAG, great!

lizlou, in case you can't use PF drops, you might try plain sterile saline .9% before and after drops instead of the PF OTC lubricating drops. The sterile saline comes in single use vials. You squirt a few times in the eye, maybe 4 times, or even as little as one or two. It's good if you, like me, can't tolerate PF lubricating drops. In the US it is available via prescription, 60 vials per box.

[lizlou29]

SAAG - Thanks for taking the time to type all of that. Diet is the next thing to attack. I eat pretty clean but I need to be stricter as I haven't completely eliminated all dairy though I avoid sugar and don't eat bread though I have pasta occasionally. With my rosacea I can even eat a curry without my skin flaring up. Moving from hot to cold environment and vice versa causes me the most problems.

I've explained 3 times to my GP what punctal plugs are and she still thinks my sore eyes are from allergies. I know they aren't specialists but come on! Basically I just use her now to get referrals.

NotADryEye - I will keep you posted. I have Unisol that I ordered of Amazon UK to poor in my eyes occasionally but even that doesn't stop the burning even for a few minutes.

I do wonder if I have a low pain threshold. A few eye docs have said that despite a TBUT of 2/3 secs and a Schimmer's of 1 there is no reason for me to be in the pain I describe. I know it isn't psychological. A year ago I had a Schimmer's of 5 and although my eyes were irritating I wouldn't say they were painful. I wonder if it is the rosacea as I have visible blood vessels on my eyelids and the eyelids go red. When the pain is bad the way my eyes look tends to correlate with that so I know I'm not imagining it. Just gets annoying that I've been told things like "if you were in that much pain you'd have corneal abrasions" and "what I'm seeing doesn't tally with what you are describing". I described the pain as having hot needles jabbing my eyes and the doc said that I seem to cope pretty well if that is the pain I feel. Well I can't spend all day crying out in pain can I. I don't know if it's because there is something they aren't seeing or it's just a case of it being hard to imagine a pain you haven't felt.

[Faith1989]

I am lucky to have a doctor who does believe me when i tell him i am in pain. But yes when the lids are red and the inflammation is high, it is painful!! I agree with Sagg, when she said you need to try to address the rosacea internally and it may help the lids. This is what I am doing with an anti-inflammatory diet. I would try the low/no sugar thing. It is hard but i try to tell myself instead of "I cant have that" "I dont want that, I dont want the pain" -it helps a bit

[runnergirl]

Hi Lizlou,

I just want to say that many of us have felt like you do. We all have severe dry eye and other things. I have a touch of blepharospasm too. so my eyes shut at will. This alone is annoying. I began this horrible trail a year ago. Prior that a year ago, I was perfectly fine with nothing wrong with me. I am a mom of 3, I work full time, my kids are in sports, I go to school. I dont have time to sit around and mope. However, that did not stop me. I have never been depressed before in my life. For the first time, I fell into the deep hole if depression, I didnt eat, lost 10 pounds in a week and a half. when I did sleep, I was afraid to wake up to have to deal with the eye pain again for 12 hours.

I had to remind myself that there are many in the world worse off than us. I work in a hospital and see worse. People live without limbs and go on. They live without sight and go on. They live with pain and go on. I remind myself that I really need to be grateful to God for giving me what I do have. You can walk, you can see, you can talk, you have arms, you even have a boyfriend. REally, you do have alot. Yes, this disease is a pain in the you know where, but getting on your knees and spending time with the Lord, thanking him for what you do have has been a life changer for me. I spent most of my time on my knees asking for healing and right now please. Then I spent time on my knees asking "why me what did I do to deserve this?" I am reminded that I need Faith not Fear. Fear of what will happen tomorrow is just time wasted. Joy and peace can not live in you when you are filled with Fear and dispare. Worry is the mind racing around trying to find a solution to its situation. The proud man worries the humble man waits. Take time each morning to ask God and the Lord for help in controlling your fear. Dont let this take over your life, for feelings are a choice, you need to choose to put the fear behind you and just deal with what life has handed you, we all are. You can do this. If I can , belive me you can. God bless you! I will pray for you too.

[Guest]

A few eye docs have said that despite a TBUT of 2/3 secs and a Schimmer's of 1 there is no reason for me to be in the pain I describe. I know it isn't psychological.

Those docs are wrong, wrong, wrong. What about neuropathic pain?

See: "I argue that a faulty tear alarm system is the underlying cause of most cases of chronic dry eye-like pain and that hypersensitivity to tear evaporation is the explanation for these symptoms" http://www.bostoneyepain.org/my-personal-thoughts/

A year ago I had a Schimmer's of 5 and although my eyes were irritating I wouldn't say they were painful... ... When the pain is bad the way my eyes look tends to correlate with that so I know I'm not imagining it.

Mine are like that too... was actually happy that was the case since it vindicated me somewhat hehe

Just gets annoying that I've been told things like "if you were in that much pain you'd have corneal abrasions" and "what I'm seeing doesn't tally with what you are describing". I described the pain as having hot needles jabbing my eyes and the doc said that I seem to cope pretty well if that is the pain I feel. Well I can't spend all day crying out in pain can I.

Totally agree - you can either cry all day and become a wreck, or grit your teeth and get on with life. The fact that you aren't rolling on the floor in pain doesn't mean you aren't experiencing any!!

[NotADryEye]

I have Unisol that I ordered of Amazon UK to poor in my eyes occasionally but even that doesn't stop the burning even for a few minutes.

lizlou,
These are the ingredients in Unisol: Sodium Chloride, Boric Acid, Sodium Borate

I've found that anything with Boric Acid and/or Sodium Borate is irritating. The only ingredient in the sterile .9% saline vials that I could tolerate is Sodium Chloride. Maybe you too are sensitive to one or both, Boric Acid and/or Sodium Borate.

[Rebecca Petris]

Back on D'Eyealogues many years ago we had a post LASIK member whose signature line read: "There are ten kinds of people in the world: Those who understand binary, and those who don't."

When I read things like this:

A few eye docs have said that despite a TBUT of 2/3 secs and a Schimmer's of 1 there is no reason for me to be in the pain I describe.... I've been told things like "if you were in that much pain you'd have corneal abrasions" and "what I'm seeing doesn't tally with what you are describing"

...I start wanting to put in my signature line something like, "There are ten kinds of corneal doctors: Those who understand pain, and those who don't."

These doctors who have spoken so to you might (?!) be perfectly competent in many areas, but they are not competent in the subject of corneal pain. How long will it be before more of them ARE? I mean COME ON! Even the FDA takes dry eye SYMPTOMS just as seriously as it does SIGNS... which, ironically, works against us because we can't get any drugs approved because nobody can prove a drug improves signs and symptoms both, enough.

Cornea MDs tend to get the concept of a sign-symptom mismatch in theory on paper somewhere, but far too few of them carry an understanding of it into the clinic with them and simply do not take pain seriously unless your epithelium is sloughing off which we all agree is murder. I want to be fair, because theoretically it is a GOOD thing for us that these doctors are committed to trying to figure out what's wrong (as opposed to treating stuff they can't see and can only speculate about) - but, at the end of the day when someone has crippling symptoms and nothing dramatic going on clinically, the doctor's role needs to be helping them figure out how to get functional again, not how to persuade them that what they feel has no basis therefore, er, ahem, etc. - I'm reminded of one of the best known of the early BFS successes, a lady with classic "white and quiet" eyes, no visible signs of disease, but crippling photophobia. They treated her, instead of writing her off as a malingerer as so much of the profession would have done (had done).

[lizlou29]

I find most eye docs I've seen start off being sympathetic about the pain then when they can't really help they say the signs don't match the symptoms and use more eye drops etc etc

Actually caused me some issues with my GP as an ophth sent a letter to her saying that my eyes were "white and quiet" but I was still complaining about pain and they suggest I take a more positive approach to managing the symptoms myself. Hence to this day my GP thinks I'm exaggerating things.

Off to see David O'Brart now. Not looking forward to travelling through London with burning eyes!