So glad I can post this

[wissen1]

Hi all,

so it's been about 1 month now since my eyes are getting better. In June-August 2017 I had my worst time so far with dry eye. Burning from waking up until going to sleep. I don't know what's helping me at the moment, but I'm back to working again and my eyes are usually only burning for about 1 hour a day. So I got my regular 8 hour office day and some time at home at the screen. So this is as much strain as eyes could possibly get. I've been using Restasis for 1 month but I'm not sure if this actually helped. Now I'm off it for 3 weeks I think and the eyes kept getting better.

My current treatment plan is:

- acupuncture once a week
- 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
- fish oil & 1 spoon of flaxseed oil a day
- running/biking 6 times a week
- washing my lids with "Navi Blef" 2-3 times a day
- cleaning lids with "Ilast gel" once a day
- lubricating drops every 1-2 hours
- 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
- healthier food, more veggies
- hypnotherapy to deal with the eye symptoms

Since I started acupuncture my mouth got so much better in terms of dryness. I was very afraid of having an autoimmune disorder and my mouth kept getting drier and drier. Probably because of the massive stress and anxiety. Now I'm back to normal saliva flow. I don't know if acupuncture helps on the eyes yet, but I'm just 2 sessions in it so far. 5 should be made at least.

I don't know if this will last. But I was so desperate just a few weeks ago and was afraid that this status will last forever. And if I ever get worse again, I will open up this thread and see that there is hope everytime even when times look as dark as they could possibly get.

For me sports are a huge factor. It's probably to get stress out of my body. The nervous system regulates every gland function in the body and if you're stressed you WILL produce less moisture.

[Hokucat]

Wissen, am so glad you are doing better, thanks for sharing what worked for you. You certainly took on a lot of different things since you first posted. I guess after you have been stable for a longer period, you can start taking one thing away at a time, to see if it made a difference or not. The snake venom in interesting, first time I ever heard of that!

[wissen1]

Thanks Hokucat. :-)
I want to be stable for a least 6 months before I change anything.
BTW if you're into tea. Try chrysantemum/goji tea. Traditional chinese medicine has this tea especially against dryness. Drink 2-3 times a day for a few weeks.

[Hokucat]

Yeah, good idea to be stable a long time before changing anything. After the probing and lemon/tea helped me, I was so scared to stop any of the many other things I was doing! But am glad I did (although slowly and methodically), cause I was able to greatly simplify my regimen, and save money :-). But important to feel good first, I am truly so happy for you!

I have been adding back goji berries into my green tea, how I used to drink it for several years. Before doing the probing and lemon/tea, my acupuncturist had given me chrysanthemum tea, the actual dried flower, so I would steep it. I used it for a half year but it didn't help me, maybe I will give it a try again, I am always looking to get even better, especially with diet. I understand it can be helpful for eyes in some cases. Thanks for mentioning it!

[MGD1701]

Hi wissen1
Thanks for sharing the great news!

Drop every 1-2 hours seems a lot. Does it make you feel better?
If not, maybe good to try other brands? I have read that if over 6 times a day is not good - wash away our natur tears? Just something to share too!

[wissen1]

Now this post probably isn't really fitting to my initial topic, but since it continues my story, I hope I can still write it here. Don't read it if you're easily triggered by a negative post.

Alright so I was at a checkup at the clinic and I did a new Schirmer's test. 1-2mm on both eyes... Just 1 year ago I scored 8/5mm. Before the appointment I was even contemplating if I should go to the clinic or not, because my eyes felt pretty good the last weeks, except some minor incidents. I had days where I used lubricating drops just twice throughout the whole day.
Now I am miserable again. I cried like all the time during my drive home and smoked like half a pack of cigarettes despite although I managed to quit just 2 weeks ago. And now that I collected myself, I'm starting to analyze. Is it really possible to have such a decline in tear production despite the fact, that I felt so good the last weeks? Also other tests didn't reveal any worsening of my condition. In fact the BUT went up! Corneal staining is still present, but very minimal, just like a year ago, just like 2 years ago.
All this leads me to the following thoughts. How much can your central nervous system intervene in your tear production when you're nervous? Not only was I nervous because of the outcome of the Schirmer's test, but I also got social anxiety and everything that involves having to deal with other people puts a varying amount of stress on me.
I think anyone experienced a dry mouth at some point of his life when being really nervous, for example before a presentation in school. So I wonder if my catastrophic Schirmer test is actually due to me being nervous and stress as hell.

How to pull myself out of the abyss again?

[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.

[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.

[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.

[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!

[MGD1701]

Hi Wissen
Congratulations and thanks for sharing.

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

[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

[Hokucat]

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

[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.

[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.