IPL with Dr Toyos

[sazy123]

Gretchen- No he said they were open.

Which i did think myself. He said the oil was crystalised, but he didnt mention lack of oil due to inflammation.

[Gretchen]

Thanks Sazy -

So he said that the oil was crystallized but the glands were open? So they are open but blocked?

I guess what I am trying to get at here is did he think that he could help your particular problem? Or was he vague (Dr's usually are about results)?

Thanks,
Gretchen

[sazy123]

Thanks Sazy -

So he said that the oil was crystallized but the glands were open? So they are open but blocked?

I guess what I am trying to get at here is did he think that he could help your particular problem? Or was he vague (Dr's usually are about results)?

Thanks,
Gretchen

that they are definitely open, but the oil coming out is crystallized due to inflammation, although i don't think 'just' crystallized oil is the only the prob, i do think the inflammation is stopping them producing oil, he didn't mention that- but i will ask him next time. Otherwise when i have another illness the oil wouldn't just become 'uncrystalised', as the oil flows ok and eyes feel great when i have another illness.

He did say he thought it would help the crystallisation, and that i have viens/tangestaica (which aren't very obvious to me, but he could see). But im gonna ask again about the conjunctivitis.

I emailed him, he said alchole is ok, just drink plenty of water as well, red wine is best, beer being the worst. And stay out of sun.

[skygoddess]

Sazy,
The Dr said it can take 6 weeks to notice a difference after going fragrance free. It is so hard. I screw up all the time. I stupidly used a eye makeup remover yesterday, and now 24 hours later I am having a reaction.

Fragrance is in everything, everywhere.
Take care and watch out for candles, air fresheners, hotels , friends houses.
My mother slathers lotion on that just about kills me.

Most time it takes anywhere from 24-72 hours to have a reaction,
and for myself up to a week to get it to calm down again.
That is , if I don't do anything stupid in that week,
Then I go back to the drinking!

[sazy123]

Sazy,
The Dr said it can take 6 weeks to notice a difference after going fragrance free. It is so hard. I screw up all the time. I stupidly used a eye makeup remover yesterday, and now 24 hours later I am having a reaction.

Fragrance is in everything, everywhere.
Take care and watch out for candles, air fresheners, hotels , friends houses.
My mother slathers lotion on that just about kills me.

Most time it takes anywhere from 24-72 hours to have a reaction,
and for myself up to a week to get it to calm down again.
That is , if I don't do anything stupid in that week,
Then I go back to the drinking!

So just walking into a bathroom where someone sprayed airfreshner, or being near someone who is wearing perfume can do it? what about if you just pick something up that has been washed in powder to move it? I just dont think its possible to avoid that when you are at work etc.

Im sharing a room with another girl, so wont be able to avoid it in the room then

Where is your conjunctivitis? is it inner eyelids/ white of eyes or both?
And i assume your glands werent blocked?

Thanks Sara

[skygoddess]

Unfortunately, yes

It can be incredibly difficult. I am a flight attendant , and work with a different group of girls every week. They all wear different fragrances, and seem to be continually spritzing. Plus the cleaners, clean our crew room with something that contains some industrial strength air fresheners.
Some times if I am having a particularly rough day, I will ask if they would mind refraining from spraying around me. They usually don't mind.

Before I realized I was allergic, I remember hearing about a lawsuit where someone sued a co-worker because she had severe allergies and her co-worker disliked her and wore extra perfume.
Can't recall exactly, but I believe she won, and it was covered as a disability.
But I may be mistaken about that.


Sorry got off track.
My lids burn and swell slightly, then the glands get blocked.
Azasite usually handles a bad case.

[sazy123]

Unfortunately, yes

It can be incredibly difficult. I am a flight attendant , and work with a different group of girls every week. They all wear different fragrances, and seem to be continually spritzing. Plus the cleaners, clean our crew room with something that contains some industrial strength air fresheners.
Some times if I am having a particularly rough day, I will ask if they would mind refraining from spraying around me. They usually don't mind.

Before I realized I was allergic, I remember hearing about a lawsuit where someone sued a co-worker because she had severe allergies and her co-worker disliked her and wore extra perfume.
Can't recall exactly, but I believe she won, and it was covered as a disability.
But I may be mistaken about that.


Sorry got off track.
My lids burn and swell slightly, then the glands get blocked.
Azasite usually handles a bad case.

Ok so if you have that to deal with and have managed to get 90% better then its doable. I haven't been around perfume since ive done this, apart from the odd smell. and i have used cleaning spray for tables at work but i think it might go out the window when i have to share with someone, i can hardly say could you not use perfume etc coz i ''might'' have an allergy lol.

When you say your glands are blocked how do you mean? can you see capped or blockage etc? what about the conjunctivitis are your inner eyelids inflammed?

My left eyelid is slightly swollen in the left corner (inflammation is slightly worse) but the rest aren't.
Oh azasite didnt help me (except for short relief).

[clairvoyant]

crystalized oil is just mgd..

[eva b]

Sazy,
I've been following this thread, and your posts in general, with great interest because we seem tohave very similar problems - and also seem to fail to find any solutions!

I've done the whole allergy/cleanliness/fragrance free routine, like you, and found that basically it made little difference...apart from avoiding fragrances wherever you can, but of course sometimes it's impossible.

In an ideal world we could live in a protective bubble, to keep out all possible allergens and irritants - the that's just not feasible.

I just spent an hour sitting with a sick neighbour, who had wet washing hanging in her bedroom which smelt strongly of fabric softener (which she claimed she could hardly smell)...now I'm in hell with burning eyes.

It really is a bummer.

I hope you don't mind, but I'm going to send you a pm with some quite specific questions, but I need to get my brain together to get them in some order....

I've got MGD and my local optometrist expresses the glands nearly every week - but it's not getting any better and I'm running out of avenues to pursue

This whole thing is so frustrating - and I think you're very brave trying the IPL treatment, and really hope it works for you!

[stephgurl1986]

Sazy, did Dr. Toyos say anything about food allergies?
I believe I have food allergies or food intolerances but tests are negative. I've read several times that food allergies/intolerances can cause dry eyes. And it is very hard to find intolerances with a blood test. So doctors tell people they should find out by themselves. I'm thinking of having this special diet (ONLY rice and potatoes) for a few days and see whether my eyes get better. Has anybody thought about that?

[sazy123]

Of course eva email me

Yes i thought i there was a definite difference the other day after doing all the allergy things but i have done nothing different in the last two days and my eyes are bad again, i think my throat was the reason my eyes felt abit better then.

My eyes were feeling bad yesterday morning, and after that i had my hair done (highlights) and eyelash tint (i know- but i cant wear mascara- i only have this done 1/2 times a year), and my eyes feel no worse than they did the morning before i had it done. so who knows!

I wrote Dr toyos a letter with everything ive tried and hasnt worked- i put down all the allergy stuff and everything thats come back negative and hasnt worked, he didnt mention it which i was surprised about as other doctors have.

Ive been on all sorts of strict diets, and its made no difference, but a blood test did show i was sensitive to dairy and wheat- but avoidance has not brought about any difference. I give up avoiding dairy sometimes- because i need to make my throat bad so i can actually do things, dry eye is impossible.

[skygoddess]

Gretchen,
(love your name btw)
My entire lid margin swells then I usually develop a sty or two from the swollen glands .
Then I start rubbing and conjuntivitis quickly follows.

I can clear it up with azasite. I am going to get a bottle now.

I think I may be allergic to lanolin. The eye makeup remover I used to get myself in this condition was fragrance free, but contained lanolin. Apparently it is another common allergen. Plus it is in lots of things.
Also Free and Clear has a ingredient, cocosomething or another, that I can,t use.
The stuff was the 2005 allergen of the year. ( who knew)

Also people allergic to fragrance usually aren't allergic to all fragrance, just components of some common mixes.

You really should go to the dermatologist and ask for TRUE TEST .
It will give you a more definite place to start looking.

This is just a thought, google formaldehyde free clothing.
My cousin is allergic to formaldehyde, which is in permanent press fabric and some other fabric finishes. I don't know much about it,
just that its possible. Since we all wear clothing, ( I hope,) maybe it is overlooked.

[sazy123]

Skygoddess when did you first notice eye problems?

Did you have a trigger like others had i.e anti depressants or lasik... or did it come along without anything or come along gradually?

[skygoddess]

I think I was having symptoms for quite a while, Just not severe.
I couldn't tolerate contacts at first, so I had smart plugs put in.

Then about two years ago ,suddenly my eyes were painfully swollen,
with the sensation of multiple styes
My journey to hell began.
Dr.#1 said it was blepharitis .
Dr.#2, Dr3, Dr4, All said blepharitis and or ocular rosacea.
But blepharitis is not supposed to hurt, and no one could explain my pain.

Surgeons #1,2,3. all discussing removal of smart plugs.
They thought they were lodged somewhere in my lacrimal track.
Never went through with the surgery .

Exploratory & Surgery,

I just think some words do not belong together.

Experimental & aircraft
Single & engine,
BTW, since I fly for Continental, Single & Pilot are now going on my list

Dr #5 suggested allergies as a culprit.
He prescribed Azasite. That was the first real help I found.
So I decided to give his theory a try since no one else had given me any relief.

Went to Dermatologist for TRUE test.

So now here I am,
Ducking air fresheners and using Azasite as needed.
Not perfect, but a hell of a lot better than the two previous years.

Sherry

[autumnn]

Hi All-
Today is a week since my third treatment. I have had some decent days- for example today I am up and about without my wileys and only have some dryness (not really pain) in the left eye (this never happened before starting IPL)....then I have had some tough days (office ones mostly) which emotionally are so hard to deal with.

Now, I use no drops (except Pataday), no scrubs, no compresses and no sleeping mask- my routine is quite simple. I have allowed myself to concentrate on this treatment and let go of worries about other eye issues and treatments.

I advise anyone starting this process to know it is an emotional one- especially if you have been dealing with pain for a long time. It is a lengthy process in that each treatment is at least a month apart and one may need up to 6.

Because of all I have been through I am (sadly) a pessimist in ways that I wasn't before this eye pain. However, my gut believes that I am making progress different from any I have made in the past- but, as I mentioned, the times I feel the familiar pain from before, I am set in a whirl of worries.

I have emailed poor Dr. Toyos far too much and he assures me that each time he has seen me I have shown improvement and as soon as we get the oil pumping and producing good oil I will feel better. He tells me that we are heading in the right direction with my eyes. I have to be patient- who knows, maybe I will be one of the ones who needs 6 treatments. I just want to hand this advice on to all who may be starting this journey.....esp since I may not be on this forum as much as before (I tend to worry more when I read a lot of posts)....