At what point do you "give up"?

[Alix]

I am asking myself and others here this question because I have spent the last 13 months desperately searching for answers and have spent a considerable amount of money on consultations, treatments, machines, eye drops, medication etc (£3000+) and still have constant burning pain, albeit now just in one eye, the other just feels dry.

At what point do you just accept your situation and get on with your life the best you can?

Quick summary of my history (sorry for those who already know) - I woke up one morning in December 2017 with bloodshot and dry eyes, this came out of the blue. I thought it was because of contact lens overwear/tiredness but my eyes never improved despite switching to glasses.

I struggled on my own with eye drops (tried over 30 different ones) and finally went to the GP in Easter 2018, who said I probably have dry eye, it was very widespread, and that he would refer me to Moorfields where they would sort me out with prescription only eye drops. At that point I thought great fantastic, my eyes would get back to normal in no time.

Unfortunately this was the beginning of my nightmare. So far I have seen 12 different doctors at Moorfields and private clinics. I have been diagnosed with, in roughly this order - Blepharitis, chronic inflammation, chronic allergy, evaporative dry eye, MGD, borderline aqueous deficiency, conjunctival chalasis and keratoconus.

The results of Lipiview last year were that most of my glands are atrophied or dormant, brought on by partial blinking/contact lens wear. They do not know what can be done to get those glands working again as it depends on the individual how they react to medication/treatments.

I have tried everything available in the UK in terms oral/topical medication and treatments, apart from Lipiflow which is a waste of time as far as I understand. I could go to the Spain to get PRP drops and to the States to get Xiidra, probing, prokera etc but really enough is enough.

My latest appointment at Moorfields last week was with a highly experienced and respected corneal surgeon, who diagnosed me with a mild form of Blepharitis (lid margins clean, no demodex). I was advised that surgery for CCH was not recommended in my case, as because it was so mild, almost subclinical, it was not worth the risks involved - apparently most people have some degree of CCH especially contact lens wearers and it is not serious. Also because my symptoms are unilateral these days, it cannot be CCH which is causing the pain. As for keratoconus, again it was subclinical, was not going to develop over time, and only needs to be monitored once a year.

The surgeon told me that although there is some gland blockage, my eyes look healthy overall. I asked why then am I in constant burning pain, I was told this was just “bad luck”, and that nobody really understands why some people have symptoms even though they have no signs. Also it was just “bad luck” that I didn’t respond to the steroids, azyter, doxycycline etc.

So I was told there is nothing more they can do for me, there is no point retrying any of the medication I had been prescribed before because they didn’t work, and that I just need to get on with my life with scleral lenses. Before my latest appointment at Moorfields I still had faint hopes that I could somehow get rid of the burning pain with medication but those hopes are gone now, especially as all this was coming from a highly respected corneal surgeon.

I am currently trying out sclerals, but am having problems getting ones that fit properly. Maybe it is just a case of getting used to them once I find the right ones, but still a lifetime ahead of me using these everyday fills me with dread.

I am mentally exhausted and will be financially ruined if I don’t stop trying to look for a solution which perhaps doesn’t exist. Sceral lenses are not a cure and not a solution to my problem in that the burning comes back when I take them out, but I am coming round to the idea that this doctor is right, I need to stop wasting my time and get on with my life the best I can.

[Guest]

I think if we can afford to lose the money, we might as well use it since the money is available and not needed for anything else.

But, since most of us - myself included - have limits, we have to balance money used for quality of day-to-day living vs. how we'll feel if we spend more money on our eyes and end up feeling it was a waste that yielded no results.

The other day someone said to me "Why don't you just go back to Mexico since your eyes did so good there?" I'm like, "It wouldn't be wise for me to put money towards that now... it's not in the budget - we had to pay in advance for our flights on this continent, we paid in advance for most of our accommodations for this year, flying to Mexico last minute would mean paying vacation rental prices for accommodations and we can't afford to lose all that money we already spent and basically end up paying for all over again in Mexico... especially since this flare up has prevented me from working since last March."

Then another day they're like, "Have you heard about Lipiflow?" And I'm like yeah, have known about it for years... $1400 CAD per treatment, odds are I'll need multiple treatments since the underlying cause of my problem - corneal nerve problems - can't be fixed. Plus, my eyes can't tolerate the 24 hours without any eye drops or ointments that they told me I'd have to endure prior to Lipiflow. I sent them a link to the DEWS II report... figure it'll save me time saying no to any treatments they may suggest since if they see it in the DEWS report, they'll know I already know about it.

I think part of the disconnect is that this person has lots and lots of money... so they've forgotten that at my stage of life when one is supposed to be at the "building a nest egg" stage but has a disability that has prevented one from working at full capacity for over 10 years now, one isn't exactly swimming in an unlimited pot of money... one has to be careful and strategic with money.

There's IPL... there's scleral lenses from different fitters (maybe one will have better luck with one than another) ... there's PRP drops ... there's MG probing... there's all kinds of oral medications for nerve pain (some of which take weeks to wean yourself off of if they don't end up working and/or you need to discontinue the med) ... there are specialists all over the world, each with their own approach to treatment (and some with access to compounded drops you can't get elsewhere) ... lots to spend money on.

If I were rich and had unlimited funds, I'd fly to every expert there is just in case one of them might have the solution for me. I want so desperately to stop suffering. But alas, there are practical limitations.

Hell, if I knew for sure that I'd be cured if I spent every last dime I had, I'd do it even though I'm NOT rich - because as a cured person with healthy eyes, I could earn it all back again and more. But with my ability to work in doubt, no disability payments, and next-to-no pension coming my way in future, I can't afford to take that risk and come out of it with nothing left (since in that scenario, I would NOT be able to earn it all back again).

Anyways, sorry to be depressing. My eyes are bone dry right now and so bloody painful at the moment. I went for a long walk this afternoon because I was desperate for fresh air.. but it wasn't humid enough out there and my eyes are paying for it now.

[edmunder]

How long have you been trying the lenses? Weeks? Months?

Wearing goggles when not wearing the lenses is crucial for me. I cant go without goggles. Or lenses plus moisture chambers over the top.

The lenses do get more normal over time. The goggles make your eyes feel better at night. Goggles plus ointment and I sleep well. Get up. Do some drops. Wash your eyes with warm water. Do warm compress. Clean with hypocholoric acid. Put in lenses.

Flood the eyes with saline during the day.

I have seen at least 15 doctors now. Many famous specialists in the USA. You have to keep going.

What about pain drugs? Can you get gabapentin in the UK? I take 300mg twice a day. Morning and night.

Im now doing cough syrup twice a day. Delsym. Only one active ingredient: dextromethorphan. Helps with nerve pain in the eyes.

Honestly i had a very lucrative business I built up over 13 years in China. I left and its gone. I also lost all my possessions there. My lease was up and i was bedridden in the USA. I had my friends go there, get drunk on my liquor cabinet and have a party. Take anything they wanted. Ive spent probably 15k in USD the last year and I lost about 60k in profits from my business this year (after paying all my bills, vacations, fun, I saved about 60k). That business and all my clients are gone.

There is enough misery to swallow the world. I spend a lot of time on alzheimers and MS facebook groups to see how terrible things are for everyone. You have to make the choice to go on in spite of it. How unfair and evil the whole thing is.

[Topher3]

Alix im sorry to hear about what’s you’re going through right now. I don’t think the doctor should be using the term “moving on” because with this disease you cannot move on as it is a daily struggle and most likely for a long time. What we can try and do however is try and accept the problem. Easier said then done, I know. Something that we hate so much and gives us so much pain and discomfort and just have to be like “well this is how it is now I guess”. It’s important for you to take it one day at a time, as much fun as planning a future and trying to set goals for yourself is you’re going to have to real that back for a bit and set smaller goals in relation to accepting your eyes before you can think about planning life. Gotta start at the root of the misery right now. Yes, you have dry and painful eyes, yes you’re going to have this for a long time yes this is now a part of you, this does not however mean your life is ****ed and you can’t do anything. So much of this is amplified by our mind, we tell ourselves everyday we won’t be able to do this I won’t be able to do that. But we can we just need to try and perceive from a different way. Instead of “I can’t believe I have to wear these sclerals for the rest of my life, I am so unlucky” you need to practice “I can’t believe these sclerals actually have reduced the burning and pain and I am in a country that has access to this technology”. There’s people with this problem over in third world countries how do you think these people feel? They don’t even know what the **** it is and how to stop it. Yes it’s very unfortunate that you have got this debilitating problem but as much as you don’t want to hear it, someone has to be the statistic and no one is owed anything in this life however you do owe it to yourself to try and mentally strengthen yourself to be able to live the happiest life you can.

I’m trying to accept my condition and it’s hard, I am on holidays now and after a long flight my eyes were bloodshot and red so I put on these funny moisture chamber glasses and had people judging and laughing and looking and pointing at me after literally 2 seconds. I had to take them off and suffer. I’m not there yet and need to try and just let go but it’s very daunting and upsetting.

Things will get better, we’re humans and we’re forced to either dwell for eternity or adapt. That’s your two choices, and in time you will adapt, once you’ve accepted this condition your life will be a lot more clear and straightforward and you’ll pick right up from where you left off.

[Milo007]

At some point I will give up for sure. Probably after trying out all I think would work based on my hypotheses. At this stage the last thing left that I think might work for me is demodex control. If that doesn't work out in 3 months I am possibly going to self terminate. I don't feel like I should continue like this all my life. This is not life how it should be by any means. It's a struggle that apparently has no end. I am currently in a psychological situation where I am not even afraid to blow my head off with a gun. Honestly I see no future the way everything is shaping up at the moment. Can't say anything more really. Hope you are doing well.

[woodart]

There is no giving up. I have been suffering for a good 60 years now and have seen many specialists and tried many things. Removing eyeballs seemed to me the thing to do. I finally saw the right doc almost 20 years ago. Although not perfect things are tolerable now. So much is being done for this now unlike year ago. Finding the answer to your problem means not stopping and keeping at it until you do hopefully find your answer. Also keep asking here for help or questions. Nothing like people here going through the same things and sharing their knowledge. As many years as I have been at this I keep learning how things to make things better here. .Do keep the faith, it will pay off.

[Milo007]

There is no giving up. I have been suffering for a good 60 years now and have seen many specialists and tried many things. Removing eyeballs seemed to me the thing to do. I finally saw the right doc almost 20 years ago. Although not perfect things are tolerable now. So much is being done for this now unlike year ago. Finding the answer to your problem means not stopping and keeping at it until you do hopefully find your answer. Also keep asking here for help or questions. Nothing like people here going through the same things and sharing their knowledge. As many years as I have been at this I keep learning how things to make things better here. .Do keep the faith, it will pay off.

Thank you for everything you have said. I am in terrible discomfort for the last few days to the point I can't keep my eyes open for more than 5 minutes. More than one year with this dreadful condition and still no stable improvement. Things are always dicey for me.

[woodart]

My game changer was taking flaxseed oil. No clue why it worked so well for me but not complaining. Even though that did wonders for me I still keep looking. I see it did nothing for others here but that is just the luck of the draw I guess. Tried most everything from restisas to manuka honey. I am on and off this board according to my sight that day. I am very thankful to Rebecca for this board and for helping us keep up with whatever is going on and products that are available we would never know about. I am a very stubborn person and will still try for improvement. I am sure at some point you will hopefully find what works for you. It won't be soon enough I am sure.

[Guest]

At some point I will give up for sure. Probably after trying out all I think would work based on my hypotheses. At this stage the last thing left that I think might work for me is demodex control. If that doesn't work out in 3 months I am possibly going to self terminate. |

... It's a struggle that apparently has no end. I am currently in a psychological situation where I am not even afraid to blow my head off with a gun. Honestly I see no future the way everything is shaping up at the moment. Can't say anything more really. Hope you are doing well.

I'd just like to say that sometimes one gives up *trying new treatments* for a while because one is tired of trying, just needs a break from devoting so much mental energy towards our eyes, or needs to save up some money. I think this is normal, and inevitable at some point... or at many different points in one's journey with this rotten condition.

However, after almost 14 years of ups and downs with this, along with watching many people on these boards come and go, I honestly don't believe 1 year is enough time to put into this before giving up completely. I totally understand the desire to end it all... you're not alone in having that thought cross your mind, that's for sure. However, I think it's a natural human emotional reaction to a tough situation where you don't yet know how it'll work out... BUT it's a reaction that is NOT based on logic.

I can tell you're an intelligent person who is researching the hell out of this condition. That's going to help you over the long term.

But I can say from personal experience that even after a few years of crap dealing with this, things can switch to being totally doable ... for many people a year may not be long enough to find a combination of lifestyle changes and treatment combinations to get you to where you need to be in order to feel happy about life again.

I don't feel like I should continue like this all my life. This is not life how it should be by any means.

Of course not. But don't make the mistake of assuming that how you are NOW is how you will always be, because I'm telling you, odds are high you would be making a mistake to assume that.

Life has a lot of good left in it, and you deserve to enjoy every last minute of what's coming your way. So don't make the mistake of ending it all in 3 months (and therefore missing out on the good stuff coming) if your eyes aren't where you want to be yet.

You need to be patient. Life is long. That means a lot can change for the better. Wait and see what happens.

Besides, the option to end it all will always be on the table... but if you actually make use of that option, the choice to wait and see what might happen is forever out of your reach. So, it seems better to wait this out and see how things go (i.e. wait years if you have to)... hang in there!

[Alix]

@SAAG If a doctor told me today they had a surefire cure and I would be guaranteed to have healthy pain free white eyes again but that cure cost £10k, £20k even, I would pay that in a heartbeat. But that’s just a dream. There is no cure for blepharitis or whatever it is I have. I have been throwing money down the drain, paying for medication/treatments which work for some people, don’t work for others i.e. me, and I have nothing to show for it.

If I won the lottery tomorrow, didn’t need to work and had limitless time and funds, would I fly around the world to try and find a specialist who can help me? Last year I would have said yes, now not so sure, I can’t deal with the rollercoaster of hope and disappointment. As I said I am mentally exhausted.

@edmunder I am still being fitted for the scleral lenses. The last ones I tried I couldn’t keep them in for longer than a couple of hours, they were not the right fit. I am still waiting for the next pair. I wore RGPs for many years without any problems, so I thought scleral lenses wouldn’t be too different but they are. It is a daunting process. Hopefully the next pair will fit.

As for painkillers, I will not be using them, I am not even going there.

You are lucky you can use moisture chambers. I cannot as I have a high prescription - I checked and they can’t make moisture chamber glasses for someone as short sighted as me.

@Topher3 It was more like a counselling session - the doctor said that there was no cure for blepharitis and that in my case there was no point spending any more time or money on medication/treatments because clearly they are not working. The best treatment to manage it is warm eye compress unfortunately it just causes me more inflammation, so the idea is that I just accept my situation and use scleral lenses to stop the burning sensation. Yes you are right, I guess I should be grateful I have the possibility of using them.

You also are so fortunate to be able to wear moisture chamber glasses - you should use them in public , who cares what people think? I would if I could!

@Milo007 Really sorry to hear what you are going through. If it is any consolation I understand what you are going through believe me, but I have never got to the stage where I wanted to end it all - I still want to experience all that life has to offer and you should as well. We are “lucky” (if that is the right word ?) that the “only” thing wrong with us is our eyes.

@woodart Glad to hear flaxseed worked for you. I am taking quite a few supplements which don’t seem to be working but I am afraid to stop in case my eyes get even worse.

[Milo007]

I'd just like to say that sometimes one gives up *trying new treatments* for a while because one is tired of trying, just needs a break from devoting so much mental energy towards our eyes, or needs to save up some money. I think this is normal, and inevitable at some point... or at many different points in one's journey with this rotten condition.

However, after almost 14 years of ups and downs with this, along with watching many people on these boards come and go, I honestly don't believe 1 year is enough time to put into this before giving up completely. I totally understand the desire to end it all... you're not alone in having that thought cross your mind, that's for sure. However, I think it's a natural human emotional reaction to a tough situation where you don't yet know how it'll work out... BUT it's a reaction that is NOT based on logic.

I can tell you're an intelligent person who is researching the hell out of this condition. That's going to help you over the long term.

But I can say from personal experience that even after a few years of crap dealing with this, things can switch to being totally doable ... for many people a year may not be long enough to find a combination of lifestyle changes and treatment combinations to get you to where you need to be in order to feel happy about life again.



Of course not. But don't make the mistake of assuming that how you are NOW is how you will always be, because I'm telling you, odds are high you would be making a mistake to assume that.

Life has a lot of good left in it, and you deserve to enjoy every last minute of what's coming your way. So don't make the mistake of ending it all in 3 months (and therefore missing out on the good stuff coming) if your eyes aren't where you want to be yet.

You need to be patient. Life is long. That means a lot can change for the better. Wait and see what happens.

Besides, the option to end it all will always be on the table... but if you actually make use of that option, the choice to wait and see what might happen is forever out of your reach. So, it seems better to wait this out and see how things go (i.e. wait years if you have to)... hang in there!

Hello SAAG . Thanks for reaching out! It really helps to be remembered that I am not alone. Yesterday I had an altercation with my father who absolutely doesn't care about the condition of my eyes. So I was pretty depressed. The only people close to me who sympathize are my mother and my girlfriend.

I have been trying to figure out what's causing my meibomian glands to behave differently at different times. Sometimes I see copious amounts of lipids oozing out of the gland orifices with just a plain touch over my eyelids (those days I don't have any symptoms). The lid margins also appear thickly coated with lipids that's very shiny. While on some other days I see very little volume of lipids coming out of the gland orifices even with a hard press over my eyelids. This variation in the yield of the glands make me wonder if inflammation is regulating the quantity of secretions. One lady on the "Dry Eye talk" forum has exactly the same problem as me. Her doctor said her lipids were thin and clear but it requires more pressure than a normal blink would generate to push out the lipids. Her doctor also mentioned that this typically results from inflammation and she responds very well to doxycycline and steroids.

I have tried to address some of the possible sources of inflammation :

1. Inflammation due to exposure dessication during sleep (partially closing eyelid). Have been taping my eyelids very well every night.

2. Inflammation from soap, shampoo or facewash getting into my eyes. I keep my eyes tightly closed while bathing so that's not a problem anymore.

3. Inflammation due to evaporative stress on the ocular surface resulting from a low LLT. Have been using MCGs throughout waking hours. The seal is not perfect but decent.

Still I am waking up with eyes that don't feel moist enough or comfortable. I see the inner surfaces of my eyelids deep reddish in color. Interestingly the only few days I woke up with absolutely fresh feeling eyes in a long long time were from 24th to 29th of January this year. I was using TTO on the base of my eyelashes and eyelids at night. While I was on TTO I felt like the improvement was phenomenal. Unfortunately after I stopped using TTO (due to eyelid skin flaking and getting inflamed) on 29th the effect lasted upto 1st February and then things started to deteriorate.Now back to where I was. The other reason I stopped using that TTO completely was because it smelled more like eucalyptus oil so I thought it was a synthetic fragrant oil or an adulterated one. I have ordered TTO and jojoba oil from Edens Garden and waiting for their arrival to begin experimenting again. It will take around 2 weeks. USPS works like a snail. I wonder if the oil I was using had any proportion of TTO in it and hence it worked a bit. Also I am confused if it's really a dip in demodex activity that made a difference or it's the anti inflammatory effect of the supposedly pure TTO I was using. But those days I could definitely observe my glands oozing with lipids unlike now. Also the inner surfaces of my eyelids were pale pink while I was on TTO. So something made things work as it should for sure. I still see cylindrical dandruff on the bases of my eyelashes. More of them in my left eye and my left eye is now the weaker one. I also see more cappings being formed over the meibomian gland orifices of the left lower and upper eyelids. When I puncture these cappings I see lipids flowing out that's clear in texture but with extremely tiny filamentous structures suspended in them. When I blink to spread the lipids over my conjunctival surface I can see thousands of these tiny filamentous structures (barely 1/50 th of a millimetre) floating over the tear film. I doubt if these are the nymphs of demodex brevis that are hatching out from the eggs inside the meibomian glands in great numbers, dying there and causing inflammation. If these pesky mites have nested my meibomian glands I don't know how to kick them out because TTO would certainly not get inside my glands. The only way remains is to stop them from mating at night until all their eggs hatch and they die off naturally. That would require at least 3 months of diligent TTO (and/or ivermectin) use I guess. I really hate parasites. We need nano bots to blow them out entirely. Also the bacteria and viruses.

[Milo007]

@Milo007 Really sorry to hear what you are going through. If it is any consolation I understand what you are going through believe me, but I have never got to the stage where I wanted to end it all - I still want to experience all that life has to offer and you should as well. We are “lucky” (if that is the right word ?) that the “only” thing wrong with us is our eyes.

Thanks for reaching out!

Yes it's difficult for every one of us. But the feeling that you are deprived from even the very basic joys of life and you can only watch others do so many things that you would want to do but you cannot is not a pleasant experience. Life is like that of a caged monkey at the moment.

When was the last time I watched a movie?

More than a year ago. Now I can't even watch YouTube videos for more than 30 minutes. Can't ride a bike. Can't drive. Can't use a PC or smartphone without taking super frequent breaks. It's affecting my career as well. Eventually every people around me will get tired of my problem. I will start losing friends and be couch potato struggling at home or work. I can't even imagine any further.

Honestly I believe if it were something else than my eyes I would have been doing much better.

How are you doing by the way?

[Guest]

Hi Alix, Sorry to hear about how you are feeling. Am pretty desperate myself - housebound and lost my job. I have a high prescriptiont too - -9.50 and ordered a pair of MCG and sunglasses from America - Heavyglare eyewear. They were really helpful. I emailed grant@heavyglare.com. Also got a pair made at Ciliary Blue who work with Eyewear Accessories in the UK but you've probably checked there. Would definitely recommend emailing Grant though - sorry if you've already tried this. All the best.

[Guest]

NEVER GIVE UP! That thought might cost you a chance at getting your life back. That said, it’s not easy. You will fail for a long time, but I think you can find help. Took me 8 doctors and I literally almost gave up. I only went to doctor 8 because doctor 7 couldnt make my serum (so happy for that). So I went somewhere else and the doc changed EVERYTHING! I have a lot of problems, I’m finding out I have more issues. But without this doctor I’d be in pain and now I’m realizing, I’d be slowly going blind and not know it. This guy saved my life..I finally had the chance to tell him that. His response, you’re a work in progress. So he’s still working his ass off fir me and not resting in the fact that I’m feeling better. I think if every one of us had the right doctor, we would feel better. I HAVE to be on steroids the rest of my life. I have to. Thankfully I have a doctor that understands that and is monitoring me. No other doctor would take this approach. Doctor 7 had me disabled and was ok with it. He never even diagnosed me properly. So if treatment isn’t working, it’s probabky because it’s incorrect. I wish you luck, you may have to travel and fight for this. I drive 90 mins to my appointments, my whole day is gone. And I’m lucky..that’s pretty close.

one final comment after the fact...what your describing sounds systemic. You have lid issues, change and Keratoconus. That signals to me possibly a structural issue. Again, I’d think you might have sleep apnea or a collagen disorder based on your symptoms and results. You may need to expand your search. So you have any other health ailments, cobstipation, low energy, bladder infections, anything?

[Milo007]

I HAVE to be on steroids the rest of my life. I have to.

Who insists this?

Given the side effects of steroids I don't see it as an option forever.

Are you ready to risk your eyesight at the cost of a short lived manageable condition of your eyes?

one final comment after the fact...what your describing sounds systemic. You have lid issues, change and Keratoconus. That signals to me possibly a structural issue. Again, I’d think you might have sleep apnea or a collagen disorder based on your symptoms and results. You may need to expand your search. So you have any other health ailments, cobstipation, low energy, bladder infections, anything?

I agree I might have lid issues but why do you think I have keratoconus?

How to ascertain if I have collagen issues?

I do suffer from constipation.