Let's have a Lesson on MGD & Dry Eyes

[sazy123]

Well, isn't it just from inflammation? If you are producing very little inflammation for a while then do things that reduce inflammation followed by hygeine, shouldn't you be ok? Add in drops, lifestyle changes and whatever else you can control (I can think of so many different things that make my eyes work better.)

You don't think it can be worked around though, seriously?

My to cents on MGD,

I have a perplexing case of MGD, with NO blockage at all. I would assume that inflammation not blockage is causing the problem- also since i appear to have some type of ocular rocasea effecting blood vessels in the eye lids not the eyes. They theorize that ocular rocasea is caused or largely related to inflammation, so going off this basis.. it doesnt make sense to me that EVERYTHING i have tried over 3 years i.e high doses of omega 3, GLA, doxy, restasis, other things i cant remember (barr progesterone cream) have been completely ineffective.

Due to the fact that progesterone cream has helped about 30%- i know theres an element of inflammation in/around eyelids causing the dry eye. So surely these other things should be more effective! Doxy usually helps alot of people but i dont hear that many success stories for omega 3 etc, restasis when it comes to MGD. I am very skeptical about omega 3's effectiveness for severe dry eye. However i think supplements are more effective in mild dry eye. Just trying to be realistic, theres no harm in using them just incase you are lucky.


When it comes to hot compresses for MGD, it can a be catch 22, like rebecca pointed out. Heat is compromised in rocasea- your body temp goes up rocasea can flare up. So if you had ocular rocasea you have to be very careful that its not to hot. Im sure i used it too hot during my worst eye times a while ago. Also if you have inflammation- like in ocular rocasea, is heat a good idea? In my case one thing i know is that due to the fact that i have no blockage and normal consistency- when they do flow, hot compresses never helped me (except for some relief). So i try not to use them too often.


We have to make the best out of the few treatments we have, some people are able to control there symptoms- which is great. Others cant seem to get to that controllable level no matter what they try, i.e even with progesterone cream my symptoms are not controlled, i still cant go out and enjoy an evening with out my eyes burning, although it is alot more bearable than it was before. If i hadn't got hold of progesterone cream i would be alot worse off.

The key is try to find out the cause, dont just rush to get plugs you will end up wasting alot of money, as i have found out. Only recently have i really tried to work out the cause.

I understand rorys frustrations, being in the UK and all, i have been lucky to get hold of certain things but getting things from doctors is near impossible. Epically when your one of the people who dont respond to hot compresses and other conventional methods to control symptoms, you cant help but feel negative about the whole thing. Rory keep trying to find solutions, if you have MGD try and find a doc who may be able to prescribe P cream..i know its not easy.

As Dr latkany pointed out there seems to be a growing trend towards ocular rocasea causing MGD, hopefully researchers have cottoned on to this and will look for treatment in this area. Not just inflammation but there seems to be quite a big vascular component like there is for facial rocasea. Facial rocasea starts off as vascular -then inflammation comes second to that.

x

[clairvoyant]

Well i think i would run a marathon every morning if it meant i would be symptom free for the rest of the day!

I am not afraid of discipline or hard work... I think the exasperation comes from not knowing what it is that we must do to get the control that you so clearly have.

However if you are 99% symptom free most of the time...you clearly have found a way for yourself.

Well, isn't it just from inflammation? If you are producing very little inflammation for a while then do things that reduce inflammation followed by hygeine, shouldn't you be ok? Add in drops, lifestyle changes and whatever else you can control (I can think of so many different things that make my eyes work better.)

You don't think it can be worked around though, seriously?

[clairvoyant]

Shall i go for the reasonable answer or the honest one? well seeing as I am in such a positive mood today...lets go for the honest one.

With regards to your first question, I would guess that the answer is probably no. Great psychobabble for the hopeless, but still a no. Sure being positive and indeed happy will make you feel better, it will lift the spirits, but the meibomiam glands will remain blocked and the discomfort will remain identical. I know this from years of being happy and positive and suffering constantly at the same time.

With regards to the medical profession. I do believe that the consensus of dry eye sufferers in the Uk at least, is one of universal disdain for the attitude of Opthalmologists towards our condition.

It is also dangerous for them to prescribe treatment from a point of almost complete ignorance as they certainly have done in my case a number of times. So no, I dont expect Drs to be God and know everything. I would respect an admission of ignorance far more than a God like attitude and a seriously incorrect diagnosis. I would also say that I have lived in numerous countries around the world and this seriously poor attitude is pretty much unique to the British senior consultant level. So no, whilst I dont expect them to be Gods, perhaps someone should actually tell them that they are not Gods?

I agree, more needs to be done.

[Rory]

It's chronic as in it will last for the rest of our lives. It will always come back but it will go away too. It will probably even show itself everyday but I believe if managed properly that one should feel symptom free 99% of the time. I think the key word here is "discipline" sadly.

Don't get me wrong I am as frustrated as you are but it is something that one will not escape. In fact it reminds me of a very important life principle:Hard work pays off.

If people do what they're suppose to I am pretty sure that everyone will get what they want (pertaining to this issue)

You have alot more expierence with this than myself */respect* but I figured I would add this side to it.

Well i think i would run a marathon every morning if it meant i would be symptom free for the rest of the day!

I am not afraid of discipline or hard work... I think the exasperation comes from not knowing what it is that we must do to get the control that you so clearly have.

However if you are 99% symptom free most of the time...you clearly have found a way for yourself.

[clairvoyant]

15 years later and I am still as baffled and confused as ever.... i believe that is the real definition of CHRONIC?

I truly dont believe that anyone knows what they are doing or why they are doing it.... and this is fundamentally because no one knows what is causing their MGD.

One that is very popular these days is Rosacea (i see this is becoming terribly popular these days). I was even told that i have ocular Rosacea despite virtually no facial symptoms (perhaps the odd bit of facial flushing in central heating)....and even if we do determine that we have Rosacea..no one knows the cause of this......and so we are basically all left tackling the surface symptoms as all western medicine seems obsessed with doing..... we all have MGD, so rather than seek the answer to why we have this, we merely try to control it superficially.

The original poster for example was diagnosed with MGD.... and her Dr as far as I can see merely threw all available resources at the problem from lid scrubs to antibiotics to Restatis to fish oils etc etc.... surely these can not ALL be equally or even partially addressing the problem?..... you give Restatis a remarkable review and yet it has not been approved in Europe because it has not shown any positive clinical results (i believe refresh endura the vehicle was marketed and just as effective?)... your symptoms may have improved due to lid hygiene but because you are taking Restatis simultaneously ..you offer it some credit also .. i never understand this logic. And does fish oil really do anything at all, other than make vitamin companies alot of money? Does anyone really know what dosage etc etc. is effective if at all? And those plugs that opthalmologists seem too happy to dish out.... surely they are part of the problem also? If people do start to control their condition and improve tear production and quality....surely these plugs (which no one knows if i still have!)....will serve to disrupt any recovery...as they promote stagnant poor quality years anyway?

I cant really remember where I am going with this post...other than to utter confusion and oblivion.

Oh yes...if we do manage to unblock our supposedly blocked meibomiam glands, surely the reason they were originally blocked is because we are producing the wrong type of oil? Well maybe some people are...maybe others will produce perfect oil once they are unblocked.. i dont know and i dont know anyone who does..... so even if the oil is now clear to break through.... it will not offer the tear any useful protection anyway? and of course the glands will inevitably block up again also because we are not addressing the cause of the blockage.

Anyway the original post seemed so clear and positive and structured, that i thought I would offer my confused reality in return. I am sure that you are right and that I am just having a bad day.... but well a healthy balance is always good?

Yours bitter and cynical and even more confused than my 100 confused and useless opthalmologists,

Rory.

It's chronic as in it will last for the rest of our lives. It will always come back but it will go away too. It will probably even show itself everyday but I believe if managed properly than one should feel symptom free 99% of the time. I think the key word here is "discipline" sadly.

Don't get me wrong I am as frustrated as you are but it is something that one will not escape. In fact it reminds me of a very important life principle:Hard work pays off.

If people do what they're suppose to I am pretty sure that everyone will get what they want (pertaining to this issue)

You have alot more expierence with this than myself */respect* but I figured I would add this side to it.

[Rebecca Petris]

I was trying to head off this confrontation. Next time I won't be so subtle. I really hate to see hurtful comments on the board.

Any more outbursts like these and I'll sentence all participants to thirty lashes on the cornea with a punctal plug-studded extra strength reinforced Schirmer strip.

Now where were we. Something about meibomian gland dysfunction. Incidentally, for those of you who want more background information or want to look up individual terms, I would strongly encourage you to go to our home page (www.dryeyezone.com) and start digging through articles. Use the Dry Eye Encyclopedia, it is a useful resource on many topics. There is also a Dry Eyes for Dummies course (written by a fellow dry eye dummy).

[Jade9923]

You can't seem to help yourself from insulting us! Get a grip girl. This is not a community of people you want to continually offend. For heaven sake, this group really understands your pain.

I started typing again to try to explain again about the restatis but to be honest, I'm beat after a 10 hour day and I don't really think you are listening or trying to understand any of this..hence the nonsense comment by you. You can lead a horse to water but you can't make him swim.
.

[Rory]

I reread this thread today and

The only sentence out of all of it that made any sense whatsoever was Rebecca's

"I totally understand the need to vent - but I think that it should also be tempered by consideration for others".

Still there is so much nonsense here. Damn I have done it again!

[Rory]

Dear Jade,

I apologise if you felt insulted by my posts above. It was certainly not my intention.

In the cold light (or is that warm central heating?) of another dry eye day, I regret the tone of my writing yesterday, especially if it offended anyone. However I think I made it clear that I was in a particularly exasperated mood...and that I believe most dry eye sufferers would empathise with this feeling.

When I reread your initial post, I have to say that it is extremely encouraging and inspiring. The only proviso being that I just dont get the Restatis credit at all.... your eyes were improving anyway without it? Would they not have continued to improve without it? (but hey we can agree to disagree on that one).

As I wrote previously, I spent 5 years and thousands of pounds in the 1990s seeking an answer to my problem. I just couldnt take anymore rubbish and disappointments, so I decided to stop searching for an answer. Psychologically that was the best approach (believe me! you would have done the same if faced with the emotional backwardness and sheer incompetence of UK Drs). It is only in the last couple of months, when I had to take time away from work due to the severity of my symptoms that I started seriously seeking an answer again.

So I am back at square one, starting afresh and I have to say that it is very different this time. The DEZ is a remarkably useful and encouraging resource and it does seem that Drs are also beginning to waken up to the problem. I dont feel quite as alone as I was way back then.

I will work hard over the next few months on unblocking these glands (which must have been blocked for 15 years!) and your successful experience should serve myself and others with optimism and belief that things can improve markedly (or maybe they wont..because i dont have restatis? )

The trouble and exasperation I believe develops when you try to learn all and consider all instead of focusing on one definite goal (ie unblocking glands to start with). Too much reading of possible causes and treatments etc can be baffling and counterproductive...and very disheartening.

All the best,

Rory

[Jade9923]

You make a lot of noise, are fast to dish out insults and clearly are in pain, but have you found the solution to your own dry eyes? No amount of complaining and moaning and challenging posters for their knowledge of MGD will get you out of the pain you are in. For that you have to refocus, and start acting. No one is going to magically appear on your doorstep with the answers no matter how mad and loud you are. Get on an airplane and come over here to see our doctors. We have specialists like Dr. Latkany. You have to fight and kick and scream and not stop until you have exhausted every avenue.

I truly dont believe that anyone knows what they are doing or why they are doing it.... and this is fundamentally because no one knows what is causing their MGD.

Yeah and no one knows why my husband died last year at the ripe old age of 46 after suffering 12 years with Multiple Sclerosis. Unexplained dry eyes is no different than a billion other illnesses and diseases people suffer from with no explanation as to their cause.

I have an understanding about my dry eyes because I suffered and sought answers until I found what helped. No one has a clue as to why I have dry eyes. Sure it would be great to know, but in the mean time, I think I will move heaven and earth to try to find comfort instead.

The original poster for example was diagnosed with MGD.... and her Dr as far as I can see merely threw all available resources at the problem from lid scrubs to antibiotics to Restatis to fish oils etc etc.... surely these can not ALL be equally or even partially addressing the problem?....

Merely? lol That's funny. It took a lot of time, patience and intelligence on the part of my doctor to figure out how to help me. These treatments for my dry eye symptoms TOTALLY addressed the problem for me. Remember, I could care less why I have dry eyes, I just needed pain relief. Without it, I wanted to die, I was in such pain. I have a good understanding of MGD because I became a student of dry eyes and watched my glands go from producing thick toothpaste like secretions to thin, clear lovely oil. I have never had a problem locating the glands or squeezing them to see what exactly comes out of them.

your symptoms may have improved due to lid hygiene but because you are taking Restatis simultaneously ..you offer it some credit also .. i never understand this logic

Restatis only came out a few years ago. I started with dry eyes 17 years ago. The lid scrubs helped me tremendously in the early years. I never got total relief until I had all 4 meibomian glands plugged. The Restasis has further improved my MGD. I know this because I can SEE WHAT COMES OUT OF THOSE GLANDS.

And those plugs that opthalmologists seem too happy to dish out.... surely they are part of the problem also? If people do start to control their condition and improve tear production and quality....surely these plugs (which no one knows if i still have!)....will serve to disrupt any recovery...as they promote stagnant poor quality years anyway?

Plugs save lives girlfriend! You may be able to improve your MGD, but I don't know any way to improve tear production. Do you? This is where plugs help. They keep the precious tears in your eyes instead of them draining down your punctums. As far as promoting stagnant poor quality tears, that just is not the case, at least for me.

so even if the oil is now clear to break through.... it will not offer the tear any useful protection anyway?

Again, you need education about dry eyes. When the oil is clear and spreading over your eye surface, it MOST CERTAINLY does protect the tears that you do have from evaporating. I lived it. So have many others here. It makes sense if you understand dry eyes.

You are in big time pain, I can see that. Quiet down, have a drink and then refocus and find help. Don't stop until you find it. Move heaven and earth if you have to. It IS possible to find relief.

[Rebecca Petris]

"Psychobabble for the hopeless?" Rorrrrrrrrrrry.

Dr. Petris has a prescription for you: Get offline and head to the nearest wine bar. Trust me. I used to work lawyer-type hours in an investment banking firm in Fleet Place with the worst & driest air known to man. Corney & Barrows was just what I needed at the end of a really bad eye day.

And I know many consultant ophthalmologists in the UK. Having lived on both sides of the pond, I'm personally convinced they do not have a monopoly on arrogance and uselessness.... though I admit some have a special brand of it.

p.s. Sometimes things come across differently than intended online... If I sound like I'm scolding, I don't really mean to.

[Rory]

Is'nt it possible that a negative attitude can prevent the proper functioning of any part of the body, and therefore the meibomian glands ?
Most medical docters now acknowlege holistic medecin - ie mind and body and spirit are interconnected .
A negative attitude (which can be caused by depression ) along with anxiety can definately magnify pain and cause disfunction of any body part
Also, who said doctors should be like God and understand everything?
They are only human beings like you and me and are constantly learning, and hopefully researching their various disciplines to help mankind - Maybe we expect too much of them
Why should we - who have MGD and DE expect to know why ,anymore than other patients who have no answers
I mean - who has answers to chronic back pain - a notoriously difficult medical problem to solve
Then there is ME fibromyalgia multiple sclerosis the arthritises- the list is endless - These people have no idea why they have these horrible diseases
My point is we are no different to them- they have to "manage" their illnesses as best they can - It's part of the human condition
As far as i am concerned - do everything you possibly can with the help of the medical proffession ,but acceptance is necessary and courage is needed But it is v important to try and have a possitive attitude

Shall i go for the reasonable answer or the honest one? well seeing as I am in such a positive mood today...lets go for the honest one.

With regards to your first question, I would guess that the answer is probably no. Great psychobabble for the hopeless, but still a no. Sure being positive and indeed happy will make you feel better, it will lift the spirits, but the meibomiam glands will remain blocked and the discomfort will remain identical. I know this from years of being happy and positive and suffering constantly at the same time.

With regards to the medical profession. I do believe that the consensus of dry eye sufferers in the Uk at least, is one of universal disdain for the attitude of Opthalmologists towards our condition.

It is also dangerous for them to prescribe treatment from a point of almost complete ignorance as they certainly have done in my case a number of times. So no, I dont expect Drs to be God and know everything. I would respect an admission of ignorance far more than a God like attitude and a seriously incorrect diagnosis. I would also say that I have lived in numerous countries around the world and this seriously poor attitude is pretty much unique to the British senior consultant level. So no, whilst I dont expect them to be Gods, perhaps someone should actually tell them that they are not Gods?

[stella]

Is'nt it possible that a negative attitude can prevent the proper functioning of any part of the body, and therefore the meibomian glands ?
Most medical docters now acknowlege holistic medecin - ie mind and body and spirit are interconnected .
A negative attitude (which can be caused by depression ) along with anxiety can definately magnify pain and cause disfunction of any body part
Also, who said doctors should be like God and understand everything?
They are only human beings like you and me and are constantly learning, and hopefully researching their various disciplines to help mankind - Maybe we expect too much of them
Why should we - who have MGD and DE expect to know why ,anymore than other patients who have no answers
I mean - who has answers to chronic back pain - a notoriously difficult medical problem to solve
Then there is ME fibromyalgia multiple sclerosis the arthritises- the list is endless - These people have no idea why they have these horrible diseases
My point is we are no different to them- they have to "manage" their illnesses as best they can - It's part of the human condition
As far as i am concerned - do everything you possibly can with the help of the medical proffession ,but acceptance is necessary and courage is needed But it is v important to try and have a possitive attitude

[brd888]

Rory,
Of COURSE you must be exasperated with this problem! After all MGD isn't a very scientific diagnosis - is it? All MGD means is something is causing poor quality tears. Trying to optimise the health of the glands is all we can do....
How did you get diagnosed as 75% blocked glands? The amount of oil needed to cover the eyeball is tiny - did you do the school science experiment to measure the width of an oil molecule?
I think I am similar to yourself exepting the duration. All I've been told is 1. I have an evaporative problem (?). 2. My Lacrimal gland "might" be blocked.
I've been treating myself for MGD and Posterior Blepharitis without success for about 6 months so its back to the drawing board. Maybe you too have the wrong diagnosis?
Rgds.

[Rory]

Rebecca,

I appreciate your initial response and it makes alot of sense...much more rational than my rambling nonsense! And yes you were right, i did mean "everyone", Doctors and patients... i do sometimes wonder if anyone really knows fully what they are doing. However I do accept that most experienced dry eye sufferers probably know alot more than the average opthalmologist when it comes to dry eyes.

My post was a post of exasperation and I think that everyone reading it would understand this.

I also agree that it was over the top and negative. There is certainly alot more hope and understanding than there was 10 years ago. Of course people are increasingly learning about dry eyes and MGD (and the DEZ is a remarkably invaluable resource for which I am personally extremely grateful and fully respectful!)

However I have been suffering since 1993 with this condition and I have been through so much complete and utter nonsense in terms of diagnosis and treatment plans. I stopped seeing all Drs for nearly 10 years and it was only the DEZ that sparked a new attempt to find an answer. I am still at the early stages and so I am feeling a little fed up and bemused at times. Apparently 75% of my meibomian glands are blocked, who knows why....and therefore who really knows how to unblock them and keep them unblocked? Who also knows that if i do unblock them that my lid inflammation will improve?...hmmm this negativity just doesnt seem to be leaving me today!

I would also love to know what percentage of those who feel that they have their MGD/dry eyes under "control" live and work in their own conditions for the majority of the time and what percentage work in a harsh competitive heated/aircon business world reality with limited control of their conditions?
I certainly feel that i can control my symptoms almost 100% in my own world, however I dont live in that world long enough for it to be sustainable....and it is not possible for me to avoid office buildings etc for any reasonable period of time.


I apologise again for the previous message and indeed alot of this one ... but I am sure that it is a place that most of us have been to many times and that both post contain questions that most of us have contemplated also.