Daily Check-In

[Rebecca Petris]

Well, I haven't posted an update of myself in awhile I guess. My sclerals are doing fine though I need a new left lens. Nights have been quite hard lately and I've had to be much more careful/faithful about what I do. For a long stretch I was using Tranquileyes dry, or my sleep mask, but neither is working now so I'm back to Tranquileyes with wet pads every night. I am thinking of adding a warm compress to my morning routine (never done that before - always done it at night). Still seem to be groping my way to the bathroom for some unisol first thing in the morning.

[painintheeye]

night trouble due to scleral lens?

hi rebecca,

are you having difficult nights solely due to your eye condition or is it after the long wear of scleral lens?

regards, chris c

[Rebecca Petris]

The night problem is from dryness. Dryness is up and down depending on time of year, heat, a/c, mgd, sock color as Lucy would say, etc.

My eyes feel great when the sclerals come out (the only problem I ever get in that regard is if I wear them much too long and get some lid irritation). But since they can't be worn while sleeping I'm subject to the same night time problems as I would be without sclerals.

[Delilah]

Eyes getting worse?

Hello everyone, just wanted to give you all the update on my eyes, seems they are getting more dry and the mucus strings are worse too. I am not sure what to do, warm compresses were not working, I tried the castor oil eye drops, restasis, humidifiers and Im just at my wits end. I put preservative free eye drops in all day and night. This summer is extremely dry in Idaho so maybe that is why I am suffering so badly this year? I am going to get my yearly check up soon, Im just very depressed right now because I am so miserable and I know that you all understand and I had to vent. Thanks Delilah

[Judy]

Hi Delilah,

You were supposed to give us an update that your dry eyes, etc. are getting better not worse!! Seriously I'm sorry to hear this and hope and pray things improve soon. My eyes are much more dry than normal and burning and stinging constantly. I don't get it. I don't think I've changed anything in my routine... Bummer. Anyway, one day at a time. Good luck at your yearly checkup. Maybe something good will happen soon! God Bless! Judy

[Guest]

It must be the weather

What is going on with all of us at the moment, we are all having a tough time of it?

I too have had a challenging few days lately. My eyes last night were terribly bloodshot when I went to bed and felt like someone else's when I woke this morning because even mine never felt this bad of a morning.

I have just purchased Dr Latkany's book and read it cover to cover and putting some of his tips into practice.

I am now convinced I have some form of MGD so the eye spa should help with time. I also convinced the DR to prescribe me Doxy (I was concerned about the exposure to sunlight but that certainly isn't a problem in wet old Northern England this summer).

Have also started back on Restasis. Thought I would fire at this from all angles as nothing else was working for me.

Deliah I am really sorry to hear that your DES has turned up a notch.

Rebecca, I hope you can get a solution for your night time dryness and it is good to hear that the Sclerals seem to be working well for you, maybe that is something for me to consider now.

Warm regards everybody

Ian

[Hangus]

Hi everyone
Just back from Cyprus with a great tan having enjoyed 7 wonderful symptom free days in the heat and humidity. The air conditioning was full blast, every restaurant and bar had over head fans blasting out and I did not use a single drop or do one eye massage in the whole week. Like a fool I thought that maybe this was it but the first day back all of a sudden I felt my old friend
(enemy?) return. It is so frustrating! Still they feel a bit better today so perhaps it was just the build up of no treatment for a week and now I am back on the massage, flax seed and blink drops.
Whilst laying on my lounger in my trunks(not a pretty sight) I decided that I would set up a dry eye commune in Cyprus where I would be the benevolent ruler who my grateful followers (i.e. you lot) would worship for bringing them to the promised land. The false idols of restasis and panoptx will be cast aside and eye massages will be banned. So endeth the first lesson!
Any interested followers let me know!
Barry

[Guest]

Barry,

It is wonderful to hear that you had some symptom free days, it certainly lifts your mood and everything becomes possible again.

I am hoping for the same feeling when I head off to Greece in late September.

Take care

Ian

[Natalie06]

Another visit to the DES specialist

Well, my lids don't look much better and the last few days they have been bothering me a lot. So it's hot packs 2 x per day, changing me to minoxi versus Doxi and I asked to try an antibiotic ointment for my upper lid margins.

She is trying to find a local source to compound Autologus drops for me since I can't use restasis. But she also does not think insurance will pay for them. Anyone have an idea how much these drops would cost? It may be moot anyway if she can't find a lab to make them. She is also going to ask the Allergan rep about the androgen drop they have in clinical trials. I am firmly convinced that my hormonal state is making recovery that much more difficult.

I am having our Employeee Health department order a humidifier for my office since I have an MD's note about the severity of my dryness. I had the AC unit redirected but it doesn't make much difference.

So, I am just hanging in there. The good news is that it's going to be rainy for the rest of the week. Living in Maine, that's a sad statement as we spend 9 months waiting for warm, sunny days.

Have a great week.

Natalie

[Delilah]

Thanks Everyone!

Thanks for listening everyone and it helps that I've got you all that really understand what Im going through. Natalie have you tried Leiters Pharmacy? Look for it on-line, they are a compounding pharmacy that is where I had my castor oil eye drops compounded and sent to me, they are in California. They might do the Autologus drops too? I don't think my insurance covered my drops since they are compounded I can't remember, I have been procrastinating on getting them again, they helped for awhile then my eyes ended up back to where they were This year has been one of the worst years for the dryness and mucus strings, Im hoping that it will clear up soon because I've been completely miserable. Again Thanks to everyone, your buddy D.

[Elegiamore]

Delilah,

So sorry you have having such a tough time.

There is so much humidity in Atlanta that you can feel the water in the muggy air. Has that helped my dry eyes? I have no idea, as I'm seldom elsewhere.

However, I HAVE tried sticking my head in the dryer in the middle of a heavy load of wet towels to suck up the moisture - seems to help.

Rebecca always says indoor humidity is the key and the air conditioning is constant in the South.

Dotanne,

Glad the clonazepam is working; it's often prescribed for sleep problems in Chronic Fatigue Syndrome and the next thing I might ask for to help with my insomnia (which really does a number on your eyes).

If you try Lyrica, would you post your results? I also suffer from shingles and am interested to hear if it helps with nerve pain.

Good luck to all y'all and Rebecca, too.

Elegiamore

[Dotanne]

I have had some good days!!

We have just had a week's holiday in Fiji (hot and humid and by the sea )and we did lots of swimming and snorkelling. My eyes felt sooo good while in a snorkel mask - I did not get any salt water in my eyes - I don't dive - but maybe the thrill of being surrounded by millions of tropical fish and looking down at coral gave the endorphins a boost too! My vision was better too. The week before we left for our holiday we had storms and the power was off for 5 days and then after getting the power on at 7 pm it rained all night and we had floods the next day. Fortunately it did not come over the road to the airport (2 1/2 hours away) or into our house so we were able to get away that day. We sure needed a week's R&R!! I did miss having the use of a microwave though!
Elgiamore - I have yet to see Dr about Lyrica - I am having an MRI on 3 August and then will see specialist after that. The clonazapam is making things manageable at the moment. But the ears/dizziness is a new thing.
I hope your shingles comes right soon. That is nasty and I hope you find something to give you relief.
Dot

[calli66]

Success with MiraFlow Contact Lens Cleaner

Last week my eye doctor told me that the deposits on my soft lenses looked "oily." She didn't elaborate why that would be. I was having continual problems with the lens "going opaque," which I thought was a drying problem. But it is the (oily?) deposits collecting on the inside of the lens.

Since I got MiraFlow cleaner, an alcohol-based product, the "oily" problem seems to have been resolved, and my lens doesn't go "cloudy." This is good!

Now, I wonder why my lenses look oily. Has anybody heard of too much oil in the tear layer? I don't think the oil is coming from eye gels or lotions (I don't use any).

Calli

[Rebecca Petris]

Last week my eye doctor told me that the deposits on my soft lenses looked "oily." She didn't elaborate why that would be. I was having continual problems with the lens "going opaque," which I thought was a drying problem. But it is the (oily?) deposits collecting on the inside of the lens.

Since I got MiraFlow cleaner, an alcohol-based product, the "oily" problem seems to have been resolved, and my lens doesn't go "cloudy." This is good!

I don't know what the explanation is (maybe DrG does). But I often had lens clouding problems if I used Boston or other cleaners, and that is why I ended up a big fan of Lobob extra strength cleaner. Sounds like Miraflow is in the same class. Good indeed!

[Rebecca Petris]

my update

As of this morning I'm on my third flare-up of this conjunctivitis-of-sorts. Was out of sclerals for several days last week and all weekend (without them I can't see and I hurt) and after one day back in them, out I go again. Sorry to gripe but I am frustrated. Heading to BFS soon to see if I can get this sorted.