At what point do you "give up"?

[quattroboy]

Hey, I can only speak from my experience.

Post LASIK dry eye nearly 15 months now.

I've been near taking my own life several times.

I too found a good consultant in the UK to work with who wants to help me. It makes a huge difference.

He is the only one who gave me a complete diagnosis of my condition.

He helped me mix my own NGF drops, he's now got me on Salagen to help tear production. He still got ideas including sclerals.

I not better just improving.

Despite this I still had probing done, which has helped, you don't need to go to the states for this. I can provide you a contact in the UK, £800 both eyes. I had blocked glands and scar tissue.

I'm going to Spain to Vissum for another confocal and opinion.

Finally, don't see sclerals as your enemy. If they give you your life back, take it. Many people rely on wheelchairs, artificial limbs etc to live their lives. See sclerals like that.

[Guest]

It really helps to be remembered that I am not alone.

Definitely! Try not to forget that. :-)

Yesterday I had an altercation with my father who absolutely doesn't care about the condition of my eyes. So I was pretty depressed.

I'm, so sorry to hear that... what a devastatingly hard thing to deal with. :-(

The only people close to me who sympathize are my mother and my girlfriend.

I'm glad to hear you have two people in your life who are supportive. I think it's common to have only a small number of people who truly understand what we go through.

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.

Yeah, not an easy thing to do... hopefully the new TTO you order will be better. Fingers crossed!

[Alix]

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?

I hope you are feeling better today. I know what you mean, I miss cycling along the river…for me as well going to the cinema now is out of the question I went there over Christmas and was never in so much pain, the bright screen, the air conditioning…….also am less sociable compared to 13 months ago but trying to force myself to go out….

What I was trying to say is that at least we don’t have a life threatening illness like cancer, and at least we are still physically able. I work with a bunch of guys who have various sports related injuries - neck issues from rugby, back pain from rowing, knee injury from running on concrete etc. They can take painkillers and can forget about their pain at least for a couple of hours, whereas we have constant burning pain. Still would I want to swap places with them? Not sure.

[Alix]

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?

Thankfully I have no other symptoms or illnesses apart from burning eyes. I admire your attitude but I need a break from the constant researching. I have a full time job with limited holidays - each time I’ve had hospital appointments, I’ve had to take half days off work here and there which has added up over time. I’m not prepared to sacrifice any more holidays this year, it is making me depressed. The hospital itself is also a very depressing place.

As for keratoconus, the first time I had a topography was 2 months ago, so I do not know how long I have had this. I have a feeling that I did it to myself with too much vigorous massaging after warm eye compress in the past year but there is no point speculating. The surgeon assured me that if I had “real” keratoconus ie not subclinical, I would have shown signs a long time ago, and it is definitely not going to worsen over time. When I go back to the hospital in one year’s time this should be confirmed.

The consultant I saw previous to this surgeon was very keen to get me to use stronger steroids ie dexamethosone but I refused and the surgeon confirmed I was right to do so. My corneas are healthy, damage-free, and the inflammation I have in the sclera (caused by poor lipids/blocked glands) apparently looks worse than it actually is, and so the risks of using steroids far outweigh the possible alleviation of inflammation.

I do not have a medical background so I have to believe what doctors tell me. It does not help that each one tells me something different but I am satisfied with the latest explanation, and I am going to take their advice.

[Alix]

Hey, I can only speak from my experience.

Post LASIK dry eye nearly 15 months now.

I've been near taking my own life several times.

I too found a good consultant in the UK to work with who wants to help me. It makes a huge difference.

He is the only one who gave me a complete diagnosis of my condition.

He helped me mix my own NGF drops, he's now got me on Salagen to help tear production. He still got ideas including sclerals.

I not better just improving.

Despite this I still had probing done, which has helped, you don't need to go to the states for this. I can provide you a contact in the UK, £800 both eyes. I had blocked glands and scar tissue.

I'm going to Spain to Vissum for another confocal and opinion.

Finally, don't see sclerals as your enemy. If they give you your life back, take it. Many people rely on wheelchairs, artificial limbs etc to live their lives. See sclerals like that.

Hi there I am really sorry, I have had dark thoughts as well but when I said “give up” I did not mean ending life.

You are very lucky to have found a consultant who is genuinely interested in helping you and by the sounds of it you are well on your way to a pain free life. I wish you all the best.

Personally I am not even going to entertain the idea of doing any more treatments, whether it be more IPL or probing, I have decided that I am not prepared to spend any more time or money on this.

I will carry on with Blephasteam, lid hygiene, and artificial tears but that will be it.

I am now going to focus on getting the right fit sclerals and get on with my life.

[Guest]

Hi there I am really sorry, I have had dark thoughts as well but when I said “give up” I did not mean ending life.

You are very lucky to have found a consultant who is genuinely interested in helping you and by the sounds of it you are well on your way to a pain free life. I wish you all the best.

Personally I am not even going to entertain the idea of doing any more treatments, whether it be more IPL or probing, I have decided that I am not prepared to spend any more time or money on this.

I will carry on with Blephasteam, lid hygiene, and artificial tears but that will be it.

I am now going to focus on getting the right fit sclerals and get on with my life.

Good luck, hope you move on and can be happy!

[farmgirl]

At what point do you give up?....since you asked, NEVER.

For me this has been a 9 year journey and there is so much new stuff out there now, I am constantly seeing improvements. I am about 80-90% better now than I was when this first started. I have tried lots that didn't help and found some things that did help. Each one of those things that did help gave me one step forward. Then I found things that I was doing which were making me worse, like most of the drops that I was putting in my eyes for example. I have become so chemically sensitized that for the most part I now just use non preserved saline. It is a journey and I am still on it but the ride is ever so much more comfortable and mostly thanks to ideas shared on this forum....thanks again Rebecca!

[Guest]

Thankfully I have no other symptoms or illnesses apart from burning eyes. I admire your attitude but I need a break from the constant researching. I have a full time job with limited holidays - each time I’ve had hospital appointments, I’ve had to take half days off work here and there which has added up over time. I’m not prepared to sacrifice any more holidays this year, it is making me depressed. The hospital itself is also a very depressing place.

As for keratoconus, the first time I had a topography was 2 months ago, so I do not know how long I have had this. I have a feeling that I did it to myself with too much vigorous massaging after warm eye compress in the past year but there is no point speculating. The surgeon assured me that if I had “real” keratoconus ie not subclinical, I would have shown signs a long time ago, and it is definitely not going to worsen over time. When I go back to the hospital in one year’s time this should be confirmed.

The consultant I saw previous to this surgeon was very keen to get me to use stronger steroids ie dexamethosone but I refused and the surgeon confirmed I was right to do so. My corneas are healthy, damage-free, and the inflammation I have in the sclera (caused by poor lipids/blocked glands) apparently looks worse than it actually is, and so the risks of using steroids far outweigh the possible alleviation of inflammation.

I do not have a medical background so I have to believe what doctors tell me. It does not help that each one tells me something different but I am satisfied with the latest explanation, and I am going to take their advice.

First let me say thank you, but don’t admire my attitude please. It’s only born from the fact I’m healing and feeling better. I don’t really take credit for that, I’m healthy again so my perspective is very different. I write this same thread, I think I titled it, “when do you give up”. I’ve been where you are at. All I can say is try not to fight yourself or the treatments. If steroids work, take them. Just make sure you’re getting your pressure checked regularly. Once a month, I go twice a month just because I’m worried about glaucoma. More so now that I found I have a genetic predisposition for it. I’ve been on steroids for 6 months and I’m soooo happy I am. Matter of fact, if I hadn’t taken the steroids, I never would have known about my glaucoma. It’s like a blessing in disguise.

So so when you say I didn’t take this treatment and the other doctor agreed, that’s just his opinion. My opinion is any inflammation left unchecked is causing scar tissue, period. Not taking the steroids is worse than taking them. And let me tell you, I saw 7 doctors and none flipped my lid. So none of them gave me a thorough exam. None knew I had papillary conjunctivitis. So if I took their advice, it would be poor advice based on poor examination and diagnosis.

I remeber having this same conversation with you about doxy. So this says to me one thing, you have a psychological block against taking medicine to treat your disease. I get it, doxy is an antibiotic. Your whole lifebyoyrvtold use them sparingly and now you have to rake it forever. Or steroids make you blind, yeah, that thought is why I wasn’t treated properly for a year. It’s true it can happen, but it takes months, you’re not just going to wake up blind one day. But again, I get it, I felt the same way. I thought, I can’t do this, the therapy isn’t sustainable...but it is if you have good treatment.

I think what you need to do, and this is just my opinion, what do I know....is to wrap your head around the treatments and go all in. You need to really dive into this and just accept its terribleness. The only way I’ve found peace is to accept it. Yes easier said than done. But I think once you feel better, your perspective will change. I’m sitting here knowing I could go blind, even without the steroids. You coukd be in a similar situation. That’s why I say press on. If I stayed at doctor 7 and didn’t go to this new guy, I may not be here or I may be going blind AND in pain.

I just want yo to feel better, that’s why I’m telling you this. I just hope you did a way to fight and get it done. I also know money is an issue. That’s one thing I’m lucky for. So it’s hard for me to understand the money issues. I’ve spent about 30,000 dollars since this started and fir me, worth every penny.

[Guest]

"Personally I am not even going to entertain the idea of doing any more treatments, whether it be more IPL or probing, I have decided that I am not prepared to spend any more time or money on this.

I will carry on with Blephasteam, lid hygiene, and artificial tears but that will be it.

I am now going to focus on getting the right fit sclerals and get on with my life."

Good for you and I applaud you. I was holding back from making a response to this post for a while but your answer gave me that push. I don't visit this forum much and actually successfully quit it for over 6 years. Unfortunately I have started to revisit it but I plan on stopping. This forum is helpful but also quite depressing at the same time. I am not going to go into detail about my eye condition other than the fact I too like you woke up one day with red, inflamed eyes. I was 37 at the time and wore contact lenses on and off for 10 years. I had no other health issues and was not on any medication. I was diagnosed with the usual; Dry eyes and MGD. The usual stuff doctors throw at you. My symptoms were constant burning, eye pain, foreign body sensation that got progressively worse over the years. I saw a total of 20 ophthalmologists including corneal specialists at Duke Eye Center (3 total) and Mayo clinic. I live in Charlotte, NC. The diagnoses constantly changed rom mild dry eye to moderate/severe dry eye. SLK at times, allergies etc. you get my point. I was also told that my main issue was corneal neuralgia since I had extreme symptoms with no staining for the most part. Plus, it didn't matter if I had a TBUT of 5 or 10. I always felt the same.

I had tried steroids (I am a steroid responder so stopped and never used them again plus the fact I had a doctor smart enough to tell me the dangers of steroids and with the shape of my eye I was susceptible to glaucoma.). I was on doxycycline which caused 2 months of the worse GERD that required endoscopy. I absolutely refuse to take antibiotics again. I took it for several years for my acne and I can tell you the risks out weigh the benefits in my case. Not to mention I broke out in hives all over my body.

From 2009 to 2012 I tried lipiflow, several sessions of IPL, restasis, lubricating drops, plugs, testosterone over my eyes and then finally Scleral lenses. I am sure there is more on the list but I have forgotten since its been so long. My symptoms marginally improved but mentally it took a huge toll on me. I isolated myself from family and friends. I missed out on birthdays and weddings. Stopped doing the things I enjoyed. I ended a long relationship and fell into deep depression. I continued working full time. In fact I never gave up on my career since I had a great position with an Engineering firm and a comfortable income. A few people at work knew my situation but I hardly ever discussed it and made sure very few were aware of my situation.

During those years I spent so much money on doctor visits, pain centers, MRIs, hypnosis and acupuncture for pain. I could not tolerate any of the pain meds and refused to continue using them.

Anyway in 2012, 2 events happened that made me quit. My dad who was 84 at the time was diagnosed with Lymphoma and a friend from this forum ended her life from eye pain. That is when I decided enough was enough. I gave up the relentless useless search and decided to accept my condition. I knew that as long as my mental state was unstable, I was not going to achieve any eye relief. I was so exhausted and my eyes were not better. Plus, my dad became my priority and I definitely did not want to end up like my "friend". She took her life even though the several doctors she had seen said her eyes looked great. She spent so much time obsessing about her eyes and hours on the computer searching she couldn't find a reason to live. She was a nurse who had just retired.

In 2013 during my routine eye exam I mentioned my eye pain to a really wonderful optometrist. He suggested I wear daily disposable contact lenses. He fitted his sjogren's patients with daily contact lenses and noted that they felt relief. So that what I did from 2013 to 2018. Contact lenses and continued use of lubricating drops. My eyes felt great and the pain went away. My corneas remained healthy and dryness did not bother me. I was worried at first since I was under the impression that contact lenses made dry eyes worse and constant reminders on this forum made me think it was the worse thing to do. In my case, it didn't.

Unfortunately, I have stopped wearing them because of my allergies but plan on using them in the near future.

I guess what I am trying to say Alix is that sometimes keeping it simple is what really works. You need to trust the last doctor you saw. Jumping around from one doctor to another is not the answer. There are no miracle cures out there.

Find something you enjoy doing and keep doing it. When I got to the point of acceptance, I decided on joining a gym. To this day, I regularly work out. I have transformed myself physically and in some ways mentally. I love working out. I wear glasses and I don't mind it.

My routine is simple these days. Eye drops a few times per day and restasis. I tried xiidra for a year but decided that restasis was better suited for me. I am living again. I do have some bad days but I don't get bothered by them as much. Limit your time on this forum. That is part of healing. Like I said, this forum is helpful but it can be so draining.

Good Luck.

[Alix]

First let me say thank you, but don’t admire my attitude please. It’s only born from the fact I’m healing and feeling better. I don’t really take credit for that, I’m healthy again so my perspective is very different. I write this same thread, I think I titled it, “when do you give up”. I’ve been where you are at. All I can say is try not to fight yourself or the treatments. If steroids work, take them. Just make sure you’re getting your pressure checked regularly. Once a month, I go twice a month just because I’m worried about glaucoma. More so now that I found I have a genetic predisposition for it. I’ve been on steroids for 6 months and I’m soooo happy I am. Matter of fact, if I hadn’t taken the steroids, I never would have known about my glaucoma. It’s like a blessing in disguise.

So so when you say I didn’t take this treatment and the other doctor agreed, that’s just his opinion. My opinion is any inflammation left unchecked is causing scar tissue, period. Not taking the steroids is worse than taking them. And let me tell you, I saw 7 doctors and none flipped my lid. So none of them gave me a thorough exam. None knew I had papillary conjunctivitis. So if I took their advice, it would be poor advice based on poor examination and diagnosis.

I remeber having this same conversation with you about doxy. So this says to me one thing, you have a psychological block against taking medicine to treat your disease. I get it, doxy is an antibiotic. Your whole lifebyoyrvtold use them sparingly and now you have to rake it forever. Or steroids make you blind, yeah, that thought is why I wasn’t treated properly for a year. It’s true it can happen, but it takes months, you’re not just going to wake up blind one day. But again, I get it, I felt the same way. I thought, I can’t do this, the therapy isn’t sustainable...but it is if you have good treatment.

I think what you need to do, and this is just my opinion, what do I know....is to wrap your head around the treatments and go all in. You need to really dive into this and just accept its terribleness. The only way I’ve found peace is to accept it. Yes easier said than done. But I think once you feel better, your perspective will change. I’m sitting here knowing I could go blind, even without the steroids. You coukd be in a similar situation. That’s why I say press on. If I stayed at doctor 7 and didn’t go to this new guy, I may not be here or I may be going blind AND in pain.

I just want yo to feel better, that’s why I’m telling you this. I just hope you did a way to fight and get it done. I also know money is an issue. That’s one thing I’m lucky for. So it’s hard for me to understand the money issues. I’ve spent about 30,000 dollars since this started and fir me, worth every penny.

Thank you, I really appreciate your help and insight you have helped me a lot over the past couple of months believe me.

It’s true you are right I don’t want to take medication unless absolutely necessary but I feel like I have tried my best. 2 x 6 weeks of steroid eye drops which caused even more inflammation both times, and then a couple of weeks of doxycycline which I had to stop due to IPL. I restarted after that for a brief while but it destroyed my gut.

I am seeing very small improvements with my left eye I just need to get the glands unblocked somehow, and I believe the Blephasteam, lid scrubs and antioxidants are helping but it is going to take time, and I just need my life back in the meantime, I can’t spend any more time in hospitals.

I’ll post an update once I get my next set of sclerals in case it might help someone who is going through the same process.

Wishing you all the best.

[Hokucat]

When I heard sclerals were considered a prosthetic, I felt some aversion to wearing them. But now I don’t feel that way at all, as they have helped me with my daily functioning and have protected and nurtured my eyes. Even on days that I don’t wear my sclerals, my eyes feel better from wearing them all the previous days. Plus I also put a couple drops of serum tears in my lenses with my scleral specialist’s approval (along with a few drops of Refresh Celluvisc), seems to have helped even more, especially after increasing from 30% to 50% serum tears. If I am going to use my eyes more than usual, I also take the rx oral pill Evoxac (generic Cevimeline) which can help provide moisture to the eyes, usually prescribed for Sjogren’s patients. So sclerals are just part of my daily routine now...get up in the morning, take a shower, dry my hair, insert sclerals, brush my teeth...

I was so tired from continuously going to different specialists and researching and trying new treatments too for many years. Who wouldn’t be when it continuously yields no results or relief? I ended up having to take a forced three year break because I was so bad off I could not even keep my eyes open to do research even if I wanted to, I was literally homebound, exhausted, depressed, and in constant pain. But during those three years, my last resort was having my husband help me look into probing, and that combined with finding the right diet changes was key to addressing my underlying condition. If I didn’t do this, I would not be where I am today, as I had tried sclerals several years earlier, but as my eyes got drier I couldn’t wear them anymore, until getting some tear film back from probing and diet changes.

So it can be good to go with sclerals for now and take a break. Hopefully you will be able to tolerate them (some people can’t wear them) and they give you some relief. Then you might get some functioning and comfort back and feel up to continuing to look for resolution, but in a less intense manner and perhaps in alternative areas. Sometimes it’s something simple and not typical that can help you, as I found with diet. One week I was in debilitating pain, and the following week after drinking daily green tea with fresh lemon juice that somehow took the edge off the pain for me. For you it may be something different, but it can take time to find what works for you.

Many in this forum are aware of my 8+ year journey, but for those of you who are newer to this forum, here is my story in case something here may help you:

https://www.dryeyestories.com/new-bl...ous-deficiency

[Guest]

Thank you, I really appreciate your help and insight you have helped me a lot over the past couple of months believe me.

It’s true you are right I don’t want to take medication unless absolutely necessary but I feel like I have tried my best. 2 x 6 weeks of steroid eye drops which caused even more inflammation both times, and then a couple of weeks of doxycycline which I had to stop due to IPL. I restarted after that for a brief while but it destroyed my gut.

I am seeing very small improvements with my left eye I just need to get the glands unblocked somehow, and I believe the Blephasteam, lid scrubs and antioxidants are helping but it is going to take time, and I just need my life back in the meantime, I can’t spend any more time in hospitals.

I’ll post an update once I get my next set of sclerals in case it might help someone who is going through the same process.

Wishing you all the best.

Well I just want to say this. If your life is upside down, if you are co stabtky thinking about your eyes, if the treatmenr youre on isn’t offering the relief you desire. Then I’d say it’s bad enough that you need the medication. For me, I didn’t take it for two reasons. I genuinely thought compress and lid scrub would fix me (dumb thought) and I almost felt that it I started the drugs, there was no going back. That as soon as I started them, it was confirmation my life was over. So I fought it. I’m very mad at myself for fighting it for so long. Now looking back, not only did I need doxy, I needed steroids. I NEED these drugs now. My eyelids don’t work right anymore. I can either suffer, get surgery or use the drug therapy. My doctor wants me to just take the drugs forever because he’s afraid a surgery may not work. So we take the drugs until we can’t anymore. My point is that there are even worse things than these drugs.

If you were healthy like me your whole life, it’s hard to wrap your head around. I never got into a situation medically I couldn’t pull myself out if. I’m realizing now I was just very lucky. But I’m still lucky, because I have a plan that works. I’d say try to find a plan that works better.