So glad I can post this

[wissen1]

Hello everyone,

long time no see. (don't get me wrong, gladly)
But at the moment it feels like I'm almost back to square one. It's almost unbelieveable for me to see that my worst time is almost 5 years ago now. Sadly it feels like I'm almost reliving this.
The forum has always been a source of hope for me and just reading my own thread here again makes me feel a bit better. Over the past months my eyes slowly kept getting worse and especially my left eye is giving me a hard time with a lot of burning throughout the day, starting only minutes after I wake up.
On friday I have an appointment to get a complete dry eye checkup and discuss what treatment I will get. I'm already so scared of the Schirmer's test which was very bad even years ago... I don't know why I'm so fixated on these numbers, but I've always been a numbers and statistics guy...
I wonder if anyone from the 'old' days is still around and has made major progress and is still not having any major relapse. Or any other long-term sufferers that finally found their own cure.

[dryeye99]

I am lucky to be able to stop worrying about red scary eyes and feeling pain daily too ! I myself have tried ao many prescrptions, diets, supplements but right now Tea Tree eyelid wash twice daily has cured my dry red painful eyes thank goodness ! Blephadex was too much so I have been successfully using Tea Tree wash from Trader joes shampoo full strength across closed eyelids in my shower letting the suds sit for a minute and rinse off in shower or over a sink. Gentle application, gently soap across lashes, gently splash water and gently pat dry. Never rubbing. I’ve done this for a year and solved my dry red scary painful eyes with a huge bottle for less than five dollars. hth I am back to living life normally but wanted to share to help others here

In fact autologous serum is still on my list to try out. A clinic near me even does these. It's just that I'm training for a 10K running race in fall this year. Such a huge blood donation messes heavily with your endurance performance, so I'll wait at least until late october.

The amount of blood given is minimal, I give 8 vials, so it's like a blood panel. Not to mention giving blood is extremely healthy. You remove damaged blood cells and in a week your bone marrow produces new ones. I'd personally do it but only you know your body and how it reacts to stress during training...so you gotta make that call but you're good imo.

[wissen1]

In fact autologous serum is still on my list to try out. A clinic near me even does these. It's just that I'm training for a 10K running race in fall this year. Such a huge blood donation messes heavily with your endurance performance, so I'll wait at least until late october.

I want to push you into two additions to your plan based on what you said about blinking and sleeping. You need a mask at night and gel or ointment to mechanically protect the eye at night. Also, blinking exercises...google a video, do that a few times per day and it will help strengthen your lids.

our stories are similar...I'm finding that the reason my days are so bad, is because the eyes are exposed at night. Once I started addressing the lagopthalmos, my eyes got better.

If you can get autologous serum, I guarantee you'd feel much better, it's just the cost and finding someone to do it.

I think you have room to improve and get more stable, I think we all do.

PS I totally agree about stress, anxiety, depression, etc. causing dryness. When you're chronically stressed, the chemical make up of your body is very different.

[Hokucat]

Hi Wissen! Good to hear from you, and thanks for the update. Great you are able to work again with little/no issues, and found some things that help. Those are good observations about stress possibly being a factor in your case.

I can’t recall if you ever used night wear like EyeSeals 4.0 or TranquilEyes to protect your eyes while sleeping, since you said you sleep with your eyes slightly open? Some people use bubble bandages, or Saran Wrap around head and over eyes if they cannot keep the goggles on while sleeping.

https://dryeyeshop.com/collections/nights

i use Evoxac (Cevimeline), which is similar to pilocarpin. My doctor says Evoxac often works better for most people, in case you want to try this. I use it to give my eyes more moisture. especially when I’m going to use my eyes more or be out all day like driving, watching a movie, going to the theme park, or to an all day sporting event. And yes it does give the mouth more moisture and unfortunately make one sweat more, but have learned to deal with the sweating by always wearing a cool cotton shirt, and bringing a jacket or sweater if needed.

[wissen1]

Update

MaquiBright didn't change anything for me.

I'm back on Ikervis (Restasis) since 6 weeks. Got drops for ~4 months left, I'm not sure if I will continue this until the end.

My only lubricating drops are Hylo Gel right now, nothing comes close to this imho. One 10ml bottle lasts me about 2 weeks.

My eyes are most problematic after sleeping, even if it's just a minor nap at noon. But working at the the office 8-9 hours a day is really not a big problem anymore. In general close up screen work is much easier on the eyes than watching tv. I still can't watch a full movie...

If have some additional thoughts to share about what I think might be the cause for my problems. Well all I can do is speculate because 3 clinics and 7 ophthalmologists didn't find an answer.
I do have anxiety problems since my very early adulthood and I often noticed my mouth going dryer when being in situations which put me under stress. Well it's nothing new that a dry mouth even for healthy people is common in stressful situations. But you can't really find much written about eyes going dryer in such situations. I indeed discovered a study saying that people who suffer from depression and/or anxiety reported excessive dryness in 50% of the cases.
Since my anxiety is pretty much a general anxiety disorder nowadays, my glands could also be affected in "general". Makes sense to my eyes. So to summarize this, I don't think my problem is an actual problem of the glands but the regulation of the glands.
Sjoegrens patients probably already came in contact with medication involving "pilocarpin". You can read up on Wikipedia what it does exactly. Even with severly damaged glands Pilocarpin is able to upregulate the fluid production of the glands (sadly even the sweat glands) by activating the parasympathic nervous system. What else does this? Relaxation techniques, sports and physical activity in general.
I think I'm getting lost in my own text right now...long story short: do workouts and try to relax more.

[wissen1]

Actually my regimen has been slimmed down very much. So this was what I first posted:

- acupuncture once a week last session in february. will maybe continue at some point.
- some alternative medicine involving snake venom. I don't know the exact formula, it's individual for any person anyway, but it should help the liver to deliver more moisture to the connective tissue since mine is pretty bad no more since ~decembre. might also continue this at some point.
- fish oil & 1 spoon of flaxseed oil a day still daily. i also got a new pill that I take daily now called MaquiBright. can't really tell if it makes a difference so far. but in the U.S. it's just ~EUR 8 per month, might be worth a try for ADDE patients.
- running/biking 6 times a week still the same
- washing my lids with "Navi Blef" 2-3 times a day 2-3 times a week
- cleaning lids with "Ilast gel" once a day twice a day now
- lubricating drops every 1-2 hours depends on the activity. had a day without any drops, on a bad day with much screen work something around 6-8 times throughout the day.
- thick gel at night. my gf noticed that I don't close my eyes fully at night sometimes. and I think I'm a partial blinker at day only regular drops now. I implemented this routine where i give my lids a gentle extra squeeze just before I fall asleep. i think it's working.
- healthier food, more veggies sometimes it's not working out as I want it to be, because I hate cooking. but overall my nutrition is better.
- hypnotherapy to deal with the eye symptoms only 2 sessions. tbh it's really too expensive for me in the long run.

What's new is that I started reading books about the mind body connection when it comes to health and pain. This somehow changed my view a bit on the whole dry eye situation and helped me cope better with the whole thing.

P.S.: even in the morning I can see oil drops on my lid margins now.

P.P.S.: Amazon has several dealers with chrysantemum in stock.

[Hokucat]

Love having you as our advocate, Rebecca! Thank you!

[Rebecca Petris]

I'm starting to learn to live the moment and it feels GOOD RIGHT NOW.

wissen1
Yessss!

I agree how your eyes feel is the most important factor. I've read about several people having normal Schirmers yet their eyes feel awful.

Hokucat
While normal Schirmer can sometimes mean nothing more than that it was measuring reflex tears (unanaesthetized schirmer does that), your broader point is key to understanding what's wrong with dry eye care today. Researchers and clinicians want to improve our tear film, on the assumption that that will solve our problem. We, on the other hand, want our eyes to feel better, and we want to be able to use them more comfortably more of the time so we can go about our normal lives. Theoretically, these two things should align perfectly. Yet we know they don't. My personal mission this year is to start aggressively promoting, to researchers and clinicians, the importance of learning what patients actually want/need and how to ensure those are factored in to dry eye research and dry eye care. I'm feeling ambitious

[MGD1701]

Hi Wissen
Congratulations and thanks for sharing.

chrysantemum
Where did you get this? in supermarket? Thanks!

[Hokucat]

Hi Wissen! So glad to hear you are doing so well now. I agree how your eyes feel is the most important factor. I've read about several people having normal Schirmers yet their eyes feel awful.

Are you still doing the regimen and diet you posted above several months ago? I always remember you because of the snake venom!

[wissen1]

I'm back. ;-)
The last days are the closest thing to having a normal life I've had since months. I mean objectively I'm almost fully healed. Overall I used eyedrops about 10-12 times in the last 5 days (not per day). This includes 5 office days with 9-10 hours of screen work.
I woke up one morning and didn't think about my eyes for at least 30 minutes. That's crazy because it's mostly the first thing I notice and think about.
Maybe this lasts only days, maybe not. I'm starting to learn to live the moment and it feels GOOD RIGHT NOW.

[farmgirl]

I agree with chuto those are just numbers. If you are feeling better that is what counts. Are you still doing the acupuncture, maybe another session or two will get you over this hump.

[chuto]

Dear wissen1

I think Schirmer test is not that relevant because its results can sometimes be misleading.. So I think your own perception about your eyes' condition is more important than Schirmer test results.. Also, TBUT increase is a much more accurate indication that your eyes have improved. If you feel your eyes are better off with your current treatment regimen, please do not be desperate and continue what you are doing right now.. If you are that much concerned about this, you may further investigate possible health issues leading to tear production decrease, that you have not been checked up yet.