"Life on Hold"

[hannahmaywils]

Hey,

So I really just want to express how i'm feeling recently. I think my thoughts have got the better of me. I can't stop thinking about my future and whether i'll be stuck like this forever.

Im 24 years old, I have had punctual occlusion of my lower tear ducts and plugs in my upper tear ducts. I had a meibography of my glands about two weeks ago and they showed that I had about 1/3 of my glands missing in each eye ( bottom eyelid). She didn't really look at my top ones. I also have a schmirer test of 0 in each eye. They were that dry the strands of paper actually stuck to my eyes when she tried to take them off. It was painful.

Anyhow, I have tried warm compress, blephasteam goggles, doxycycline, various omega 3 capsules, manuka honey and moisture chamber glasses for work. I have also had blood work for any auto immune disease- they are all negative. The consultant in London now wants to put me on Ikervis eye drops. Has anybody had any luck with these? I believe they are the equivalent drops to restatis/ xidra?

Anyway, I am for the first time starting to believe that I am getting worse Were before I was quite positive about it, getting up, going to the gym, going to work with my moisture chamber glasses and now find myself quite hopeless. My family keep telling me that my life is "on hold" and that things like this happen in life. They say I am at my lowest and that things will get better. I was OK with that for a while but now I feel at a loose end. I'm constantly on google looking at new treatments, have looked at going to America to have stem cell injections. I can't remember the last day I woke up and didn't think about my stupid eyes.

For those wanting to know whether removing my marina coil has made any difference. It hasn't yet. I had it removed about two months ago. I already want to go back on contraception but I want to give it a bit longer. Anybody else felt better after removing the marina coil?

I know there's more treatments currently out there, but nothing excites me anymore.

[Meibum Ian]

Hi,

Sorry to hear you're feeling like this. I can definitely relate.

While 1/3 missing glands is obviously not ideal, there are people who are comfortable with less than this, at least once decent oil is produced by the remaining glands.

I also had a schirmer score of 0-1 last time. Also they were not able to take an osmolarity reading as there was not enough tear present for it. For some reason, this made me frustrated and angry at myself and also the ophthalmologist for even trying. It's easy for unhelpful negative emotions to add to the physical problem.

Have you looked into counselling / therapy? I started a while back and it's helping a bit. It's important to be able to feel kindness and compassion towards yourself. Although I don't know you, the phrase "my stupid eyes" is sad to read. Again, I feel I can relate somewhat.

For me keeping in the habit of going to the gym (don't always manage it) is one of the best things I can do for myself. Keeping the moisture chamber glasses on while exercising causes tears to flow a little, and for meibomian oils to soften up bit. That might just be though.

I think there's no reason not to use Ikervis. I started on it a month ago so too early to tell if it's helping my symptoms yet. In my case I think it's a good thing to be on even if noticeable symptoms don't improve from it because of its known benefits on ocular health (inflammation, goblet cell density, reduction in corneal staining etc). It's equivalent to Restasis but at a higher concentration and in a formula that's probably more effective at delivering the cyclosporine to the eye surface.

Xiidra is a different anti inflammatory. I am looking into the possibility of importing this into the uk for myself with a uk private prescription.

Have you been prescribed steroid drops at all? Improvement on these might indicate that controlling inflammation helps your symptoms.

I'm interested in knowing who you saw in London?

[quattroboy]

HI hannahmaywils, I can also relate. My dryness is post LASIK on top of existing dry eye (which I didn't know I had), so I'm carrying a ton of guilt and self-blame.

Like Meibum Ian I've kept exercising by doing my 3 weekly runs, helps with the mental health side and my eyes feel better int he fresh air. And I'm also getting counseling, which I hope to follow up with a mindfulness for health course.

In terms of treatment, I'm also on Ikervis and steroids via my NHS consultant. It's been about a month also, so not really seeing any benefits. My consultant dismissed the idea of AMT and Pilocarpine which upset me a bit, but he did say if the Ikervis shows no sign of improving things then he quickly mentioned serum drops, which I never expected to hear.

He fitted plugs as well but I've had plugs before and they didn't really help.

It's heard for family and friends to understand, but everyone on here does.

[quattroboy]

Hi,
I think there's no reason not to use Ikervis. I started on it a month ago so too early to tell if it's helping my symptoms yet. In my case I think it's a good thing to be on even if noticeable symptoms don't improve from it because of its known benefits on ocular health (inflammation, goblet cell density, reduction in corneal staining etc). It's equivalent to Restasis but at a higher concentration and in a formula that's probably more effective at delivering the cyclosporine to the eye surface.

Are you using anything else at night or just the Ikervis? I'm putting some drops in 15 minutes before and then Ikervis, nothing else afterwards, waking with very dry sore eyes.

Checked with the consultant and he's told me that's right, couldn't really offer a solution!

[edmunder]

Putting something in your eyes before bed is important so they can heal at night. I put in coconut oil in each eye. Then use goggles. I wake up with steamy goggles in the morning and eyes that feel ok for a few hours.

[hopeful_hiker]

I am sorry you are going through this. I perfectly understand the "life on hold" sentiment. I am taking one day/week at a time, too, depending on the severity of my symptoms.

I think finding out the cause of your dry eye is one of the most helpful things you can do because treatment depends on the root cause. For instance, I did blood work AND lip biopsy to rule out Sjogren's. Blood work is not enough. People with Sjogren's or aqueous deficiency usually benefit from Restasis (cyclosporine)/Xiidra (or Ikervis which is also cyclosporine-based). In my quest for the dry eye causes, I visited several ophthalmologists/optometrists who have settled on the ocular rosacea diagnosis as the culprit for my MDG. Now I have some hope for IPL as a tool for improvement.

You already got rid of the coil, but it does not mean your hormones are back to normal. Hormones play a huge role in dry eyes. Birth control can do many shitty things that, of course, no one told me about. I tested my hormones through a urine and blood serum tests. Unfortunately, they have shown different results, but I tend to believe a 24h urine test more than a random one time blood test. You could have very low androgen levels, for instance.

Whenever I read the success/improvement stories, I see that many have two thing in common:
- finding the culprit: hormones (MCK, PG, justamom), computers (pythonidler), Sjogren's (Luke), or a combination of causes (PrettyEyesMel, Hokucat), etc.
- and/or finding a very tailored regimen through trial and error, because, obviously, finding the culprit is not always possible.

In addition, in the meantime, finding what helps with symptoms also is necessary.

I hope you find a good doctor and get relief soon!

[edmunder]

hopeful_hiker very important to find the root cause. Mine must be accutane use when i was 17. Though i am 37 now. Seems a LONG onset time.

No lasik. Dont think its hormones or autoimmune though friday im getting full blood work. Im a teacher so not much computer use other than youtube videos. Diet and exercise were excellent. So im guessing must be the accutane 20 years ago.

[farmgirl]

Hi Hanna: Interesting you are the first person, besides myself I have come across that reported pulling the skin off of the eyeballs when doing the schmirer test. My test in that eye was obviously 0 and that was being quadra plugged as well. What has helped me the most are the moisture chamber glasses and being quadra plugged plus serum tears which keep the corneas healthy.

It turns out that after having negative blood work the biopsy did indicate Sjogrens so I think it would be a safe bet to say that you are aqueous deficient with probably, like me, some MGD thrown in for good measure. I highly recommend you get a biopsy done because it will often show Sjogrens where the blood work rarely does. I am currently having IPL done and have had two treatments so far. I actually think that my right eye is pretty good but the left is uncooperative and I don't know about you but I find my eyes are sympathetic, if one feels crappy the other follows not far behind.

I think it is a bit early to consider the expense of stem cells as you would benefit from having a diagnosis first and stem cells are not yet proven to work well. Even with known Sjogrens I am waiting until there is more concrete evidence that it could be the answer to my prayers before I fork over my hard earned $$$.

For eight years I the last thing I do before I go to bed is put a drop in and the first thing in the am I put a drop in so I hear you when you say "I can't remember the last day I woke up and didn't think about my stupid eyes."

The good news is that I will say that I am ever so much better than I was when this all started so time seems to help we just seem to find that combination of things that add up to greater comfort.

[Hokucat]

At least half of my glands have atrophied or are short, but I have still been able to get better, manage my condition, and get my life back. After several years, I was finally able to address the root cause, which made a world of difference. I honestly think if I were able to find the solution sooner, I would have lost a lot less glands, and would not have any degree of dry eyes anymore, but it’s still very manageable now. So it’s important to keep pushing ahead, you WILL get better, but likely the sooner you find what works for you, the better shape you will be in the long run.

As mentioned by others above, you should get comprehensive testing...check for autoimmune disease, hormones, vitamin deficiencies, thyroid, etc. This may or may not show anything, but if it does, diet, supplements, meds, and other treatment options can be more appropriately targeted to address your condition.

I think Ikervis is worth a try now since you have aqueous deficiency, plus it can take several months before seeing any results from these rx drops.

You might also look into trying a few sessions of LipiFlow or IPL, or some combination of both. If those don’t work, there’s probing which in much more invasive, but if you have scar tissue like I had, only probing can unblock that.

Things that helped or still help me with dryness symptoms are a good gel drop like Genteal Severe Dry Eye Gel, and scleral lenses. The Genteal was the only drop/gel that made my eyes feel moist and soothed when I used to have zero tear film, plus it was longer lasting...that little tube of gel literally kept me sane during the years I had severe dry eyes. Sclerals I wear now 12 hours a day to help with remaining dryness from atrophied glands, and it makes it more comfortable to do daily activities and function. Not everyone can tolerate them, but if you can, it can provide some relief. It’s worth going for a consult to try on a pair.

I know it’s not easy, but hang in there and keep looking for what things can help. Also, wanted to share my Dry Eye Story I recently submitted, in case there’s something there that might help you:

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

[hannahmaywils]

Meibum Ian Thank you for your response and kind words. Yes I suppose the good thing is that my oils are flowing. The lady in London, which I will find out her name for you expressed my oil glands and she said they weren't blocked and that the oil was clear/ not much came out.

If i'm completely honest my parents have become pretty good counsellors! I've never really like to show weakness so it feels OK when I cry to my parents! But no, I don't know what I would've done without them through this.

Yes the gym and exercising has always been a massive part of my life. I was an international squash player for 14 years, travelling the world before I had to give it all up. It makes me sad how now I barely make it to the gym down the road. But like you said, exercising is so great for mental health. I would recommend exercising,bike rides, long walks if you are feeling down. It helps.

Please keep me updated on the Ikveris drop. Im seeing a consultant tomorrow to try and get it on the NHS. Can I ask do you have it on the NHS? If not I will have to get a prescription from the lady in London.

Yes I have tried a weeks course of steroids. I don't think they did much unfortunately. Maybe reduce swelling marginally.

The Lady I saw in London was called Caroline Hodd, she is based at the Dry Eye Centre ( 7 Devonshire Street, Marylebone). I know that they offer IPL there. I also mentioned to her about the stem cell injections in America by Dr. Cremers. She said two of her patients have had them and have been very happy with the results. I know there are a few other dry eye clinics in London that you could explore also.

[hannahmaywils]

quattroboy Hey, im sorry to hear your story. I certainly wouldn't blame yourself. But like you, i do try and retrace my steps and think what the frig did I do so bad to make my eyes turn out like this!
Its good to know that your NHS consultant has given you Ikervis. Can I ask what is AMT and Pilocarpine that you mention?

[hannahmaywils]

edmunder Hey! Yes I did attempt to put castor oil in my eyes for about 2 weeks, they felt great in the morning. However, I think I reacted badly to them. Massive swollen eyelids, like nothing ive had before. Maybe I will try coconut oil this time

[hannahmaywils]

hopeful_hiker Hey. Thank you for your response. Yes I quite like the idea of it " life on hold", things can only get better. Everyday is a mental challenge, especially when prepping myself to go to to work and sit in that horrendous air conned room. I also travel 45 mins to work there and back so a lot of thinking time unfortunately.

How do i go about getting a lip biopsy? I have tried numerous times to get this done by my GP and he assures me that the blood work is all i need. I get angry. If im honest, I am now at a point were id given up slightly. I think it's so hard to articulate all this to a GP and them look at you as if your mad. That's how I feel anyway. I think I just need to speak with my parents and do this all privately. See a hormone specialist and rheumatologist.

I need to just to find my feet again I think. Everybody is so encouraging on this forum. It means a lot

[hannahmaywils]

farmgirl Hey! Yes it was horrific, bless her she was apologising a lot whereas i've seen a consultant in Liverpool who just ripped it off and pretty much told me to buy different drops. He was great. Oh also, he suggested a mock desk test. I thought what the frig, he said buy some plants, set up a desk in your house and pretend you are at work. I looked at my dad thinking PLEASE GET ME OUT OF HERE RIGHT NOW. He also shouted at my dad for talking during the schimrer test. We were trying so hard not to laugh. A strange one I must say.

I'm glad to hear IPL is working for you, I hope your improvement continues.

Yes you're right. I'm not jumping at the idea of stem cell treatment just yet. But it is very good to know that treatment is out there. Big shout out to Dr. Cremers!!!!

Yeah I think one of the hardest things for me is going to sleep, forgetting about it all a I can sleep through the night no hassle and then waking up and thinking here we go again. I feel sorry for my boyfriend who tries so hard to make me happy and get me out the house. I'm trying my best not to lose him.

How many more IPL sessions are you having ? Do keep me updated

[hannahmaywils]

Hokucat Thank you for your response hokucat! Yes after all these responses I am now definitely going to get a lip biopsy and my hormones tested first.

Yeah i've never been sure on which one to go for- IPL or Lipiflow. Also the thought of spending loads of money and having no improvement makes me so angry. I just think you're not having my money "mate". But that's just how I feel now. I think for me, IPL would be the next step.

Which ones helped for you?

Yes I use a gel called Xailin eye gel- they have a night and day one. I used this in combination with Hylo-Forte eye drops for anyone interested