New to this...Any input appreciated

[Guest]

Hi all,

Brand new to this board and wanted to share and ask any advice...I know dry eye is different for everyone; here's my story (my apologies if I ramble. It's been a long road). Thanks so much.

It started about 18 months ago. My contacts started hurting and I couldn't figure out why. Wore glasses and could only wear contacts for short durations (2hrs at most). At first I thought the discomfort was from a wrong prescription; saw three different optometrists with mostly the same result. The second optometrist told me I have dry eye; told me to use heat compress, sold me some dry eye supplements, etc. Still didn't get better. I'd never understood the severity this disease can get to.

Then worked with a third optometrist who was much more supportive. Tried eye plugs (no difference). She measured my tear production and said it was below average but by no means the worst she's seen. The dry eye has quickly evolved over the last year and over the past couple of months been really negatively impacting my quality of life.

Three weeks ago (12/5) I bit the bullet, paid $1100 and had Lipiflow done. Absolutely no difference. I have a follow up with my ophthamologist (sp?) this coming week. I'm officially at the point where I'm wondering if I'm just going to have to live with this. I don't even enjoy restaurants anymore and flying is absolutely excruciating. I've worked to limit my screen time; I'm not a person that's on a laptop/phone 12 hours a day.

Currently doing:
Humidifier in the bedroom at night
Systane night time gel at bedtime
Systane Complete drops about 10x (this was the OTC my OP recommends)
Washing lid margin 2x day with cotton swab and tea tree oil
Hot compress 2-3x daily
Blinking exercises (seems totally silly and doesn't seem to be changing blinking habits)

The only relief I get is the two or so minutes after I take the compress off. It feels great and then quickly things dry back up.

Again, apologies for the lengthy post. It's hard to summate 18 months of this into anything but a novel.

Any feedback/suggestions/advice would be greatly appreciated.

CJ

[Rebecca Petris]

Hi there and welcome!

And don't worry about length. You should see the volumes others post here Details are good, they help people get a clear picture.

Am I understanding right that you've pretty much given up contacts now and just focusing on dealing with getting the disease under control?

I think it's not uncommon for Lipiflow to not seem like it's helping at all in the first few weeks (or even making things feel worse). Most important thing is to keep tabs on your meibomian gland health... when they re-evaluate you you'll know whether things are heading in a positive direction.

When you're having huge impact on quality of life it can be really important to just get the tools you need to get more comfortable and functional for the things you want to do - kind of a parallel path with continuing to sort through the medical puzzle and figuring out how to reverse anything that can be reversed. Personally I always put 'physical barrier protection' top of the list when it comes to just getting comfortable again... moisture chamber glasses would help in restaurants and stores and definitely on planes (actually onion goggles are great for flying). You don't mention how bad things are at night but some kind of cover over your eyes at night would probably be helpful *if* you're drying out a lot overnight.

Please note that Systane Complete is a preserved drop. Doctors don't generally recommend any preserved drops for use anywhere near that frequently. I would switch to something unpreserved if you are using them multiple times a day. There's an awful lot of unpreserved drops on the market... if you need something with a lipid you might try Retaine MGD or Refresh Optive Mega 3 or something. Oasis Tears Plus is a really good one. Also FreshKote PF.

Anyway that's a few thoughts for starters.

[Guest]

Hi Rebecca,

Thanks so much. Yes, the initial objective was to be able to wear contacts again. Now it's to avoid constant pain throughout the day/night. I've been using Systane sleeping gel which seems to work pretty well. The mornings are generally the best as far as comfort goes.

That's great input on the eye drops. There are just too many out there! Four eye doctors have given me four different recommendations.

Two questions:

1) I had Lipiflow done three and a half weeks ago with no positive results. Any idea if this is normal? My doctor just gives the old, 'everyone's different' answer.

2) Recommendations on brand/dosage for flaxseed oil? I tried Hydroeye for three months and didn't see any improvement.

Thanks so much; it's already great to have a sense of community out there. I've been feeling like I'm on an island

CJ

[Rebecca Petris]

1) I had Lipiflow done three and a half weeks ago with no positive results. Any idea if this is normal? My doctor just gives the old, 'everyone's different' answer.

That's what I was trying to answer above. There's two ways to look at positive results. One is, do you feel better. That will vary a lot from person to person and not feeling better 3 weeks late is well within the range of normal. Two, is are your glands themselves in better condition after than before - that's the question for the doctor. That tells you whether you're heading in the right direction.

2) Recommendations on brand/dosage for flaxseed oil? I tried Hydroeye for three months and didn't see any improvement.

Somebody else can probably do a better job at that one, I don't have any strong opinions there

[farmgirl]

I agree with Rebecca.... Personally I always put 'physical barrier protection' top of the list when it comes to just getting comfortable again... moisture chamber glasses would help in restaurants and stores and definitely on planes (actually onion goggles are great for flying). Moisture chamber glasses are your best and possibly cheapest line of defense in the short term. One thing I just noticed about flying this last trip is that I always tent to chose an aisle seat because I don't sleep on planes and tend to get restless leg syndrome so I hate disturbing people who do want to sleep if I have to crawl over then to get out to move about or go to the bathroom. What I noticed this time though is that there is much more air movement in the aisle seat than in the window seat because the air is forced out past the overhead luggage bins so it exits just about over top of the aisle seat.

Don't scoff at the blinking exercises, if your blink is weak it could contribute significantly to your problem.

You say you have tried plugs but was it just uppers or just lowers because for me neither of those 2 options helped but getting all 4 plugged was a game changer.

I would not be in a hurry to get back into contacts they are a known contributing factor in dry eye disease.

PRN (Physician Recommended Nutraceuticals) makes a good oil that most eye docs recommend. Not all fish oils is created equal. Physician Recommended Nutriceuticals PRN Dry Eye Omega Benefits is formulated with a high concentration of the anti-inflammatory Omega-3, EPA (eicosapentaenoic acid) in its natural TG form combined with Vitamin D3. This formula works from within to help address and alleviate the irritation and discomfort associated with dry eye syndrome. They are available online.

If LIpiflow doesn't help you might try IPL. My doc has pretty much quit doing Lipiflow because he gets much better results with IPL (he says).

Keep trying because no 2 people are the same but you need to find that magical combination that works for you...mostly trial and error...hang in there.