Daily Check-In

[Eli]

This is probably a silly question to ask at this point (Like I'm sure sure you have thought of it already) but do you think there is a correlation between the mucous in your eyes and ears? Are there any anti-mucolytic agents that you can take? (n-acetylcysteine is an over-the-counter one) Anyway, fall sounds beautiful in Idaho. I hope you are able to enjoy it.

Eli

[stella]

Eli
Shoul'nt think so - Anatomically there is no connection from ear to eye (someone correct me if i am wrong)
There is a connection between eye and nose and throat

Hi all you peri/post menapausal women
Just found this site - after all this time
Wanted to post my latest progress
After a really bad few days, last week I went on to HRT (been on it a week)
It contains a weak androgen as well as precursor to estrogen/progestagen
I feel much better - eyes are improved and mood raised ,not to mention no more hot flushes/night sweats
I had been on estrogen only, for years /i am post hysterectomy
Stopped it as soon as i realized it could be contributing to my DE
Then persauded GP to let me try Livial after a break of 3 months
I still remain on low dose Doxy (on it 5 months now) - i felt it had stopped working as well /or that i had allergy complications
It's too early to say - but am strogly hoping the androgen content of HRT is helping
Will let you know

[Delilah]

Eyes and Sinuses

Well I think that maybe my eyes could be effected by my bad sinuses and ears with the build up of mucus, I am waiting to have sinus surgery and once I get it I will let you all know if my eyes improve. I have enlarged turbinates and a deviated septum, even though I have insurance I am waiting to get this surgery done next year as I am still paying on large amounts of bills. Not too mention that after this surgery I will need about a week to recover and will have to wait until I get vacation time. Stella Im glad to hear you are feeling better, I was on the Depo shot and I will never take that again for birth control, it messes with your whole system, birth control pills never worked well with my body and I dread going through the change later in life Since I suffer from the erythema nodosum, estrogen really flares them up badly so once this Depo is out of my system I have to go on a birth control that is low or no estrogen at all.

I liked the Depo only because it completely took my periods away, the first time I took it, I was on it for 4 years but got off of it as it messed with my eyes causing blurry vision and a lot of weight gain. Tried it again this year and it's done nothing but cause problems, I've had cramps for about 2 months straight now and spotting for 2 months. Anyway's it's always nice to hear when someone is feeling better. Take Care D

[Dotanne]

I think there must be some connection between the eyes and ears as I now get stuffy/blocked ears which I think is my eustacian tubes swelling. It is not wax and I do not have it all the time but it gets worse when my eyes get worse. However it is a new development since July 4 and I did not have it when my eyes were really bad last summer.

Stella - I am interested in what HRT you are taking. What is in it? What is the site you found? I am 62 and still get hot flushes. I went off my HRT because it contained estrogen in the hope my eyes would get better. Now I am on progesterone caps but still get hot flushes about 2 hourly. My eyes feel worse when I am about to get a flush so I still think there is a connection between my hormones and the dry eye. I sometimes think that when my eyes are worse that I get more flushes!!
I have started doxy as my new Dr say my meibomian glands are blocked and that I have mild rosacea. He said that my eyes could get worse at about 2 weeks when things start to unblock(need to keep up the hot compresses and massage) and then they should improve!
Delilah - I am so sorry you are still having so much trouble. You do very well managing to keep working through all your difficulties.
Cheers and God bless
Dot

[stella]

Hi Dotanne
It is called Livial (generic name tibolone) 2.5 mgms taken as a tablet daily
I did'nt get it on line - i got it on request from my GP
I knew about it through a friend who was a bit younger than me and who had it perscribed by her Doc and thinks it is very effective (She does not have DES)
When she showed me the literature - I took note that it contained "weak androgen"
Like you i stopped my estrogen only patches for 3 months to see if it would help -- cant say if it did or not, because it coincided with my improvement in the summer when i was on vacation in France for 6 weeks (away from home- allergens MAYBE??) but also on doxy and i put my improvement down to the doxy
On my return home to my great dissapointment my eyes got really bad and my morale plummeted too(I' m sure you know only too well the feelings )
I tried to analyse why ---
Thought it was allergies in the home and bought 2 ionizers ,cleaned bedding etc
thought it was the fact that i was becomming resistant to the doxy (ihad been on that for 5 months)
Meanwhile i was having all the usual symptoms of menapause - hot flushes /night sweats and depression
So i thought i would go back on HRT but this time ask to go on the stuff that contained androgen As i have said before i am blessed with a really helpful GP - a lady and she is prepared to work with me
It had been agreed on principle at an HRT clinic that i was a low risk patient ie no history of varicose veins ,thrombosis ,and no family history of breast cancer, heart disease ,stroke - so she agreed to let me try for 3 months asking me if i was aware of and prepared to take the risks of the slighly increased chances of the diseases i've just mentioned
I have been on it for a week (a tablet daily by mouth)
It has definately raised my mood and my eyes have been better these last few days so i am really hoping and praying it will bring my DE down to a tolerable level
Dr Latkany in his book is pretty positive that Androgen helps DE so heres hoping!!
I'm booked to have a mamogram on Tues mind since i'm still on doxy and the double risk from it, and the new HRT means being vigilent
I dont know if you can get livial in USA or if it goes under another name
You shold look up posts by Eileen as she is from US and is thinking of,
or taking some sort of Androgen HRT
Take care
Stella

[stella]

Just read all the scare theories about HRT under the appropriate thread
I understand there are risks ,but you have to way up quality of life with these
risks
Personally i often feel so depressed with DE + symptoms of menapause that if i have found something that helps both then i am prepared to take the risks
I dont know if the HRT i am taking has very high risks -
The literature does'nt indicate that it has
I was on estrogen only for 7 years and previous to that (before my hysterectomy ) i was on combination estrogen/progestrogen for 6 years
Because of the length of time i was on it i was sent to an HRT clinic at a good teaching hospital and actually saw the Proff himself who runs the clinic and he was perfectly happy to let me stay on estrogen only for the rest of my life (he obviously did'nt know about DE which i did'nt have at the time)
On the strength of that - i intend to give livial a try,at the same time being vigilent with mamograms and watching out for other symptoms like pain in the chest

[liz56]

Spoke too soon

Well, of course, since I posted yesterday that I had gone for about a month without an erosion, one hit this morning at 5:00 a.m. I cannot figure these things out at all, but I am noticing, as we discussed on the hormones and dry eye thread, that it keeps happening around the same time each month. The drops I am on are making things better. My vision is less impacted than it was when this problem started back in May, but between the 15th and 21st of each month is the danger zone, I see, as I look back over my erosion logs. Even during my "free month" in July when I did not have any erosions between mid June and mid August, the nights from the 15th-21st were uncomfortable and marked by two-hour forced wake-ups by alarm.

Any comments / recommendations about using the warm compresses more than once each day?

I am still using Genteal Gel at night but am thinking about switching over to Dwelle. Any comments / recommendations on that?

Thanks!

[Isis]

Hi everyone. My eyes are Ok today, not too bad but not the greatest. It's been really frustrating and hard trying to get rid of this meibomitis without taking antibiotics but slowly but surely, I am noticing a difference. Hope all of you are doing Ok as well.

[carabiner]

Bad day

Hi everyone,
Sorrie, need to vent a bit (in bad english probably). Very scared today, as I start to feel the impact of DES (-though not even that bad probably) on my life. Especially during my work. The always present feeling. Afraid I'll have to change my job (because of the bad climate of the hospital I work in).
For the first time I'm really scared I will not be able to handle the problem. Feeling happiness has become so complex with this annoying feeling present. Feeling relaxed also - it drains energy.
Next monday a new consult with the doctor. Plugs maybe, and there are still stitches in my one lens-implanted eye (the other is post Lasek). They'll be removed next month. So I hope for some improvement still.
Thanks anyway for this forum - especially Rebecca I think.
And even on this day I know there will be better days, a thought I also want to share with you.
Marcel

[Delilah]

Hello Everyone

Well I had to have another ear surgery, new tubes which is nothing new, I have severe TMJ syndrome which makes it worse as it affects my hearing, got steroid injections on each side of my jaws. I feel a lot better than I did before, although my hearing on my left side is still not the same. Need to vent a bit, eyes are getting worse it seems, day by day. I work in front of a computer all day which doesn't make it any easier.

None of my friends understand what it is really like, having this severe dry eye, along with these mucus strings that bother me non-stop. When I wake up in the morning I find that my left eye is the worst, it's so dry I can't open it, I rush to the bathroom to put drops in just so I can see. I am afraid of getting older as I wonder how worse it's going to be? My birthday was on the 2nd of October, I am now 32 I know that doesn't seem old to a lot of people but for me I feel like I am already 70. I hate having so many medical problems, knowing that when I do get to be around 70, how bad will I be?

I have been trying to deal with my General Anxiety Disorder, I constantly worry about everything, even the little things and it's pointless to worry as there isn't anything you can do about it but keep on going, but no matter how hard I try, I still have that constant worrying. Do any of you know what I can do, to try to stop this constant worrying? It would be a great help if I had any answers, I would go to a professional but I really don't have the money as I am paying for this surgery, even with insurance my bill is outrageous. We already got our first snow here in Idaho yesterday, hopefully we will have a good winter, we need the snow fall. Well hope all of you are getting by, having hope and Thanks for always listening. All of you are the greatest friends I've ever had, ones that really understand what I am going through. Feel free to vent on me anytime. Love Delilah

[liz56]

None of my friends understand what it is really like, having this severe dry eye, along with these mucus strings that bother me non-stop. When I wake up in the morning I find that my left eye is the worst, it's so dry I can't open it, I rush to the bathroom to put drops in just so I can see. I am afraid of getting older as I wonder how worse it's going to be? My birthday was on the 2nd of October, I am now 32 I know that doesn't seem old to a lot of people but for me I feel like I am already 70. I hate having so many medical problems, knowing that when I do get to be around 70, how bad will I be?

Delilah, happy birthday!

I know how you feel. I turned 40 this year after no health problems whatsoever and, then, was hit with effects (in the form of recurrent corneal erosions) from a corneal dystrophy and dry eye. I, too, spend a lot of time having to do things that are bad for dry-eye patients, because of work (reading, writing, using the computer), and it is quite uncomfortable and frustrating. There's nothing like an eye problem to make one feel years older than one is, and I have been saying the same things that you are saying. Just this past weekend, I gave up two events that would have been fun, because I wanted to stay close to my refrigerated Restasis drops and because I was afraid of being in a smokey environment. That made me feel old and different! Maybe by the time we are 70, we'll be able to cope with health issues. The longer people go without them, I think, the harder it is when something happens.

At any rate, I hope that you enjoyed your birthday, and I hope that the upcoming year brings you relief and some well-deserved stress-free days.

[calli66]

Dabbing Eyelids w/ Green Tea

It's been almost 2 weeks since I got my 4 plugs. They were OK for 4-5 days, then my eyes started to burn mid-day. I cut back on Restasis to once a day (evening), and that helped. Then, the ITCHING started.

I tried Lotemax, Blephamide, TheraTears, etc. and everything made it worse. A few nights ago, I was having a cup of green tea, and my eyes were miserable, and so I dipped a tissue in the warm green tea and applied that to my eyes (closed)---soaked and wiped the lashes and lids. This seemed to stop the itching and irritation.

So, I've been doing this green tea "bath" for several days---and it seems to help. Just need to get through this adjustment to quadra-plugs, and I think they'll work out.

Has anybody else had this plug problem---the itching? Lord, what next.

Calli

[liz56]

It's been almost 2 weeks since I got my 4 plugs. They were OK for 4-5 days, then my eyes started to burn mid-day. I cut back on Restasis to once a day (evening), and that helped. Then, the ITCHING started.

I tried Lotemax, Blephamide, TheraTears, etc. and everything made it worse. A few nights ago, I was having a cup of green tea, and my eyes were miserable, and so I dipped a tissue in the warm green tea and applied that to my eyes (closed)---soaked and wiped the lashes and lids. This seemed to stop the itching and irritation.

So, I've been doing this green tea "bath" for several days---and it seems to help. Just need to get through this adjustment to quadra-plugs, and I think they'll work out.

Has anybody else had this plug problem---the itching? Lord, what next.

Calli

Although I do not have plugs, I am on Restasis, and the itching is quite an annoyance for me. I notice that I have it in two ways. First, after an erosion, a few days later, my cornea itches. I tend to think of it like a skin wound healing, and how that can be itchy, so I think (rightly or wrongly) that I am healing. However, Restasis sometimes causes an itchiness of my lower eye-lid. I am afraid to do anything beyond what the doctor has told me to do, like reduce usage, though I'd love to do that. So, I am hoping that it is a phase and that it will go away!

[Isis]

It rained today and my eyes felt better, although they did not look better. My eyelids burn and itch and get very swollen. It's almost like I'm getting a stye and then it just mysteriously goes away just to mysteriosly return whenever. Damn, it's annoying.

[Delilah]

Thanks Liz

Thanks for the Happy Birthday and Happy 40th to you this year! My birthday was a lot of fun, work is hard as the computer is wearing my eyes worse but it's a good job for now. I am working through a temp agency and I should have work till next March or April, in between I have been looking for something more stable and batteling this dry eye. It sounds like your eyes are worse than mine and Im very sorry. I don't have erosions yet and I pray I never get them as I have heard they are extremely painful I haven't been wearing make-up to work and have been bringing my eye drops because they burn so bad. I miss wearing my make-up but there are just some days I know that it's not worth going without my drops. Have a wonderful Day and I will keep in touch. D