Back to Normal(ish)!

[Guest]

Hey Friends!

Rebecca always mentions that once people get better and return to some semblance of their normal lives they tend to disappear from this forum. Because those who get better don't spend time on here anymore, things can look a bit hopeless. I personally haven't been on here in ages, so I'm not absolving myself of blame by any means.

When I first found this forum, I was absolutely bereft. I was extremely depressed, experiencing excruciating debilitating eye pain, and eventually had to make the decision to leave my job because I just could not function. I had extremely severe dry at only 22 years old, and I felt that my life was honestly over. (I had worked with the pain until around 24 when it became too much and needed to take medical leave).

Fast forward to now (I'm currently 26) and my life has actually ostensibly gotten back to normal. I've returned to work at 80% time. Because of a generous insurance policy my company has for all its employees, the remaining portion of my salary is paid out through disability insurance. As of last month, I'll have been back at my job for a full year. There was a time where I thought I would never be able to work again, so this was a huge milestone for me. Particularly because I am a software engineer, so working on a computer is a crucial part of my job.

My eye discomfort is always present but it is manageable and no longer all consuming. I still need to take frequent computer breaks, but I've been performing very well at work, and my management chain is very happy (I may even get promoted soon. Fingers crossed).

This new state of being is a fragile equilibrium though, and I do need to take care of myself. I exercise regularly, eat Paleo, and limit alcohol consumption. Additionally, I'm constantly on top of my medical care. Here is my regimen:

Hot Compresses followed by cold compresses 2x a day
Ocusoft Lid scrubs 2x a day
Umbilical Cord Serum Eye Drops 8x a day
PRP Eye Drops 8x a day
Restatis 4x a day
Xiidra 2x a day
Lovaza (prescription grade Omega 3s)
Lipiflow 3x a year
Azasite the first week of every month
Cymbalta 70 mg (for anxiety and neuralgia) a day
Seroquil 20 mg (for sleep and anxiety) a day
Punctal Plugs (one in lower left and one in upper right)

I've also done meibomian gland probing of my left upper and lower lids followed by PRP insertion into the glands (This is something that I think only Dr. Sandra Cremers does). I've done rounds of IPL before and found those very helpful. I'm currently on a treatment schedule IPL once ever 2-3 weeks. I'm 3 treatments in so far. She wants me to complete around 8.

There are countless other things I've tried. Over the course of the last four years or so I've filtered what I found helped me and what didn't.
Some things that didn't really work:
DHEA drops
doxycycline
Evoxac
Gabapentin

I want to stress a few things.

1. Improvement is gradual! At one point in time I had all 4 punctal plugs in and was still miserable. Gradually as I improved I was able to transition to control flow plugs and then remove 2 of those completely.
2. Mental health is crucial. I was more depressed than I had ever been and I had forgone my SSRIs because I knew they could dry me out. Eventually being off anti depressants became untenable and I started Cymbalta. Cymbalta also acts as a nerve agent which I think may have helped with my neuroglia. Being more in control of my mental health helped me manage my physical symptoms better.
3. Expectations should be reasonable. When I first got diagnosed I wanted desperately to get back in my contacts and to wear makeup. Looking back, these wants seem trivial in comparison to the ability to just lead a relatively normal life, work functionally, and not be in excruciating pain. I accepted that I needed to live life in glasses and without makeup, and starting managing my expectations around those constraints. I lost weight and picked out frames I love to help me be confident in my appearance.

Anyway, I hope that was in some way helpful to someone. I was so lost when I first found this forum. It really helped me when I needed it. Things do get better.

Best wishes,
Kristen

[Amdavis]

Thanks. I'm just diagnosed with MGD after a bad eye infection in both eyes. Thankfully I am without pain most days minus a random headache . But red, dry eyes have become a part of my life in a matter of months. I go from hopeful to hopeless some days. But I'm working with Sara*Sazy* . And I intend to get lipiflow to return to what I hope to be normalcy with maintenance. I will write a triumph once I feel better. Mental portion is half the battle.

[KittyCat]

Thank you so much for posting this! You're so right, the posts on this forum (although extremely helpful to a lot of people), are massively skewed towards 'this will never get better', because as you said, people leave the forum when they get better. I guess it's like TripAdvisor, people are more likely to take the time to post a negative review than a positive one!

I'm so so happy for you, that you're doing much better, this makes my heart happy and my mind optimistic! Just like Amdavis , I'm also newly diagnosed (Amber I've seen you on the FB groups, I'm Kate Argus!) and this forum is both helping and hindering me in that it's super useful but also super scary. We need more balance such as your wonderful post above! So thank you for taking time out of your day to do this.

Did you have MGD? Or was it a mixture of things? I have MGD, and I'm going for IPL tomorrow and hoping I'll see some improvement. I'm a proofreader and 33, so I really need my eyes to be healthy for another 30 years at least!

xx

[Helen J. Waller]

I am glad to read this post. Thank you so much. It gives a lot of insight into your real-life experience. It is giving a lot of positive strokes to the readers. Please keep updating your status.

[Amdavis]

KittyCat Hi! Yes, very true. Mental is half the battle. I go from hopeful to hopeless some days but when I asked how others kept the faith when faced with difficulty, someone said they just make the intention to get better as there is no other choice. The mind and will to survive is so powerful. I woke up feeling better than I have in a while this morning. There is hope. We will get better. There are so many people that do. My faith has really transformed me and I know I will be healed as long as I put the work in.

[LindaDawn]

Thank you so much for posting. This is very encouraging.

[Hokucat]

Kristin, thanks for coming back and sharing how you have been able to successfully manage your condition! There are a few of us who still post in this forum who have been able to overcome this debilitating condition, but it is so true that many who get better are not active in the forum anymore, so really happy to see your post!

You provided some truly valuable insights on what could be expected on this journey, and that it can take an on-going disciplined regimen to manage the condition. Have you considered submitting your story to Rebecca and Aidan’s Our Dry Eye Stories, if you have not already? You have a great success story that would be great to capture there. I’ve had many people reach out to me on that platform who are and are not in this forum, so on there your inspiring story could reach more people.

It’s great you were able to find glasses that you feel good wearing. I have a smaller nose bridge and pretty high lens prescription, so any glasses I get are heavy and don’t stay up well. However I am able to wear scleral lenses which provide moisture over my eyes all day long and can be prescribed with very high prescriptions, so it’s like I’m wearing contacts again while at the same time getting relief from dry eyes. I also am able to wear make up again while wearing my sclerals since my eyes are not watering or irritated as much, but ever since having dry eyes I don’t wear much make up and do prefer the natural look! Anyways, just wanted to mention how much sclerals have helped me, and something for those suffering with dry eyes to consider. Many people consider it a last resort, but if you are able to tolerate sclerals (some people cannot) and they give you some relief, that’s worth a lot.

[anteloper]

I've also done meibomian gland probing of my left upper and lower lids followed by PRP insertion into the glands (This is something that I think only Dr. Sandra Cremers does).

Kristen, thank you for making the time to post about how things are going and what has and hasn't worked for you. If you do check back here, I'd be extremely interested to hear about the gland probing and PRP treatments, and how they've affected your symptoms (if you can tell).

I've had Lipiflow twice in roughly the past year and I expect I may keep needing it, so I'm very interested in any treatment that might help improve the basic function/structure of the glands.

I agree and identify with your points about mental health. I had some similar feelings about life when my dry eye was at its worst, and trying to deal with my mental health challenges head on helped me become a more proactive patient and ultimately see improvements in my dry eye.

[orange86]

Hi Kristen, your story sounds similar to mine. I developed severe dry eyes last year. Auto immune most likely - oil and tear deficiency. I had lipiflow and IPL treatments but the meibum glands blocked up again.

Dry eyes developed into corneal neuralgia which is absolutely horrific. I'm on ast drops and gabapentin. I used to get the full on stabbing eye pain and headaches but still have some pain and hopefully this continues to improves over time.


Did you find any offending food items in your diet that was causing the inflammation ?

[kshimrob]

Thank you soooo much for posting this story!! I needed to hear it.

Question, why do you do Hot Compresses followed by cold compresses 2x a day?