Sad realization

[hopeful_hiker]

I don’t care if my signs are good, I just want no or mild symptoms and okeish signs (i.e. no damage). I am tired of all those tests... TBUT, osmolarity, TMH, all those words that I did not know existed.

I have had a bad month with one week of absolutely normal and almost normal eyes. Now I am back in my dry eye disease “shackles” where responsibilities become exponentially more hard and “enjoyment of life” is always accompanied by toleration of pain and/or discomfort.

It is like I am made of two parts. One is trying to do whatever activity I enjoy, while the other is trying to deal with discomfort. You can’t be present.

I have had days with almost perfect, normal numbers, yet I felt every blink and my eyes felt prickly.

I have had days when my TBUT was 3-4 yet my symptoms were mild.

I have had really bad weeks immediately followed by 7-10 days of almost normal eyes. And, sadly, the opposite is true.

Sometimes I struggle all day only to suddenly feel better in late evening.

I just want to be free. It does not mean perfect, it does not mean 0 symptoms at all times, it just means that for the majority of time I don’t want to feel pain or strong discomfort.

[Guest]

Do you want to discuss things that you could do, or do you just want to vent? I’m just curious what you’re doing, what hasn’t worked, etc.?

I have been going through the same things. I’m not dry, eyes are moist, yet I feel that discomfort or pain. It’s hard to describe as you know. But the pain makes my jaw lock. It seems there’s no rhyme or reason to it. Am I better, absolutely. Am I where I want to be, absolutely not. I’m getting there....but this is the hardest thing I’ve ever done. I’ve been truly to protect my eyes in some way for 11 weeks now. For the last 3 weeks I’ve been taping my eyes. My eyes feel better, but I’m still ripping the tape off, or mashing my face in the pillow. So I get a few good nights, then a bad one and I’m back to feeling bad. I have literally no clue what to do next. I’m still tweaking the dials, but still not sure.

i hope you find a plan that gets you where you want to be. I understand that split that you spoke of, never being able to be present. It’s hard living like that...a prisoner in your own body.

[Rebecca Petris]

I'm so sorry about your bad month. Totally hear you on prioritizing symptoms over signs. I think that's what dry eye is all about. For me, the optimal place is "background noise". When my eyes are background noise, I'm good. - totally get you on the present thing too. I'm sorry!!

[hopeful_hiker]

Dowork123 I suppose, it is a bit of vent for sure but, yes, who knows what I am missing so advice is good. Thing is a month ago I had good signs (normal person), and two weeks ago no symptoms. So I don't understand how my symptoms go from bad to nothing in a matter of days and then back.

Tried xiidra x 4months
Currently on Restasis x 9 months
Avenova (on and off)
IPL x 3 (Last in August)
Lipiflow x 1 (August)
Manual expression x 1 (August)
TrueTear (but I don't use it much because I have tinnitus and don't want to aggravate the nerve)
Serum 100% x 4 months
Omegas on and off for x 9 months
Compresses x 9 months (on and off but fairly consistent)


Also, thank you for sharing your experience.

Rebecca Petris Thank you for the support!

[Guest]

It’s so interesting to me that a lot of us dry eye sufferers also have tinnitus. My tinnitus became a roaring sound when this all happened. Seems that the injury and stress made my condition much more noticeable. Let me say that my hope is our fluctuations are healing events. Meaning, we heal, it hurts, then we get a break, then healing begins again. I mean I really want to believe that’s what’s happening because overall, I am better. But these fluctuations take a toll on you mentally. So I hope we get an answer soon.

Ok, so two of the best treatments have been done inconsistently. Is there a reason for that? Do you get relief from the compress? Does it make things worse? Let me ask, have you taken doxy before? If so, at what dose and for how long? Do you think it helped? Listen, I HATE pills. Hate them! Especially antibiotics, I’m big on gut flora being healthy. That said, it’s one of the best drugs I’ve used for MGD. I would try it at a maximum dose for as long as you can assuming your dr is ok with it. The literature states some people with rosacea have taken 200mg a day for a year safety. I may do that assuming my gut can handle it because it’s hepped me so much.

Same with steroids. I feel that I needed them long term, 3+ months, to really get this under control. Like I have said before, I’ve been trying to protect my eyes for 11 weeks and still don’t have a great plan. If I didn’t have the steroids, one mistake and the inflammations back. So this is allowing me to make mistakes and learn without paying for it with pain and inflammation. Plus it’s calming things down...they should be calmed as long as they were stressed right? Not everyone can do that. Some people have pressure jumps. But if you don’t have any issues, it may be a good course of action. Again, I know sterouds are see as dangerous. But if I end up killing my self because if this pain, or at best just stay miserable, well the steroids don’t seem as dangerous at that point. Have steroids helped you in he past or are you a non responder?

if you could discuss this with your doc, see what they say, I think it could help you. If you could invest in a preservative free steroid, that would be great. But even lotemax gel isn’t too bad. Only .003% BAK compared to .01% with the drops.

Do you use night protection? If so, what do you use? If I remember right, you have an incomplete blink. That’s almost always associated with lagopthalmos, so I’d try to protect your eyes at night also.

Thats the the best I have, but I think it could help. I really hope you find something that works. Any questions feel free to ask.

[MGD1701]

Do you check Zinc, Vit. A, D?

[MGD1701]

often when my eyes are not ok, first & immediately I check lids/lashes with 20 zoom mirror,
or/and clean lashes with wet q-tip.
Afterwards eyes are ok.
surprisingly I often find something (very tiny stuff)

I always believe, if we search for things, we will find something.

[PG]

It is true, you cannot be present. Ever. I found this very frustrating.
It seems to me that the eyes take an extremely long time to heal.
Manual expression should be part of the IPL procedure.
For me, the lid wipes 3x per day are key - right after I put makeup on, right after I take makeup off and any time I wake up in the middle of the night.
Compresses 2x per day and hydration are also key for me. At the height of misery I always resorted to compresses 3x per day.
Your description of ongoing bad weeks interspersed with pockets of good days smacks of hormone involvement.