HELP...I need to make this MANAGEABLE! What to try next...

[mvallence90]

I'm 3 years deep in the hell at 25 years old with no career prospects and a social life a hermit would be jealous off.
I live in Australia with MGD, posterior bleph and Evaporative Dry. My biggest issue is all the pain and dryness I get towards the upper part of my eye and the constant eyelid inflammation in my upper eyelids. My eyelids is where all the pain is felt and often go purple in colour due to how much they inflame. Anything triggers my conditions but things like heating, CPU use, videogames, TV and wind are the worst.

I've been told I have issues with my blinking and maybe Nocturnal Lagopthalmos. I also have Keratoconus but recently had Collagen Cross Linking done on both eyes, at times I feel this has decreased my corneal sensitivity (another things mentioned that I may have) but then for instance the past few weeks my symptoms have flared up badly again. I can only guess its the cold weather down here or a natural supplement I started.

I've tried most drops on the market, do both hot and cold compresses, was intolerant to oral doxy (have struggled with any heavy chemical tablet, making my eyes drier and eyelids swell), tried azithromycin drops. I also am at a loss at where to head next. I've been told to try thing like IPL & Lipiflow but the general view around here hasn't been very positive.

I'm at a loss at what I can try next, Cyclosporine is an available albeit expensive option but my willingness to try these drops is compounded (no pun intended) but the fact they take 6-12 months to MAYBE start to work!

Does anyone else suffering like I do have any other options for me to try and what are you in this community doing to get better, what are you using and what are you daily routines.

Cheers, Matt

[Phillips55]

Have you tried the usual fish oil/ flaxseed supplementation? If you can order cliridex wipes I would use those daily for a month to rule out demodex. They also help increase oil output and reduce the bacterial load on the eyelids. I had a serious loss of corneal sensitivity after having lasik and a treatment called Prokera greatly improved things. Good Luck, if I think of anything else I'll let you know.

[Guest]

Hi,

I'm so sorry to hear what you're going through. I have blepharitis/Mgd and evaporative dry eye too. A major cause behind it is demodex mites that live in the roots of your eyelashes (lovely). I carefully use a diluted tea tree wash over my closed eyes as it is anti bacterial and anti inflammatory and gets rid of the mites causing the irritation. See below.

http://optometrytimes.modernmedicine...odex?page=full

Also for anti inflammatory drops I've been using dipyridamole which has helped my redness/dryness. I wouldn't recommend this without doing a lot of research first. It cannot be discussed on here but visit this link if interested:

http://dipyridamole.forumotion.com/

[No tears in ATL]

What supplement? Is it dehydrating in any way? Check the side effects. I would recommend stopping everything, because I can tell you, living with this since 2008, and trying every supplement, drop, and medication under the sun, LESS is more. Assess how you feel, and then start gradually introducing more, such as fish oil, or whatever suits you.

Doctors may vouch for fish oil, but you are better off just eating the actual fish. A quick Google search will lead you to the research.

During bad flareups, here's what helps me:

Cold compresses. Ice cold. Three times a day if you can. It does feel better.
Low preservative steroid drops, such as Lotemax. Only for a few days, not weeks like some docs recommend, as my eyes get really sensitive to the ingredients.
Warm compresses (not hot) in morning/evening to get the oils flowing, followed by a cool, not cold, compress. You can do this with a washcloth. Massage lids while they are warm.
Avoid stress if at all possible, and sleep sleep sleep.
Humidifier for winter climate.
Moisture chambers (goggles). As soon as you get home, and even better if done at work.

I use 20 mg doxycycline for maintenance/stablization, but I'm not entirely sure if that helps me or not. It varies for each person. I have skipped a few days and not noticed a difference, so who knows. You can talk to your doctor about low-dose doxycycline, which can help the oil quality from the lids. As far as I know, because it is so low-dose, I have been told one can take it indefinitely.

[LiliS]

yes,i,m suffering too...i,m in Hell almost all days& nights...the pain and burning are intolerable...i have Sogren disease and it seems the pain is higher in these patients...i tried ALL arrificial tears,including Oasis ( they said they are the best and natural) ,eye gels,ointments and eyelids sprays...i felt they harmed my eyes even more and made them even drier...now i am on Restazis and autolougous serum drops( i had to travel 800 miles for them to be prepared) but i don,t feel a real relief...in fact i,m scared of Restazis,i don,t know if it is really as good as they say,my eyes pains are huge ....i tried Lipi Flow too,in march,in Italy ...useless and painfull...i was so hopeful it will help me....i don,t know how to deal with those pqins,some doctors say cortisone drops are good,some say they are forbidden in dry eyes...i am a doctor myself,but it doesn,t help much,i wish i wasn,t and not been able to deal with this disease,from all i read and studied every patient is different and the medication can or cannot work on each of us... anyway what is very clear for me now is ,first, that all we put in our eyes dries them even more,i think artificial teqrs supress somehow our natural tear production and second,that the menopquse in women has something to do with this disease( or hormonal inbalance at any age or sex // looks like testosteron is the hormone involved in dry eyes ) . i just hope someone will find out how to help us...

[littlemermaid]

Hello, LiliS, I don't have experience but some members are managing to get comfort with custom-fit scleral lenses eg http://www.dryeyezone.com/talk/showt...hlight=rebecca and http://www.bostonsight.org/Education...-Presentations. Maybe someone can help us with suppliers in Europe http://www.bausch.com/Portals/109/-/...onUpdate21.pdf.

mvallence90 - Matt, I think DCRdryeye has experience with scleral lenses in Australia, if that helps.

[Karmenligia]

Hello Lili, have you seen previous posts from Willwork4tears related to Sjorgens?
Subject: Coenzyme Q10 improves dry mouth (and eyes) in Sjogren's patients

[LiliS]

i do take that...and omega 3/6/9 and everything i read about...Sogren is a systemic disease,i should stop somehow the inflamation from inside out...i,m desperate,in fact ...because nothing seems to work...and more than that i made my own research and found out that Sogren and Mikulicz diseases( both have enlargements of salivary & lacrimal glands and dry eyes & mouth)
are not the same ( like some doctors still think) and they are not treated the same...lacrimal glands are affected differently ,in MiKulicz there still are reflex tears ,in Sogren no...i wished at keast ine of my doctors knew that...now i am considering taking oral corticotherapy which could help in Mikulicz ,but it,s useless in Sogren...

[LiliS]

can,t find these here...and besides my problem is the lacrimal glands,s disease...dry eye comes after that,...if i only could heal my lacrimal glands...

[littlemermaid]

Matt, did you talk to http://australiandryeye.webs.com/ and look at their Optometrist suggestions http://australiandryeye.webs.com/find-a-doc? There might be something helpful. Would micro-environment glasses help you? https://www.dryeyeshop.com/dry-eye-g...asses-c71.aspx DCRdryeye might suggest suppliers in Australia.

[littlemermaid]

LiliS, I use US NIH and MedlinePlus and Medscape for info, especially when we are self-managing without docs. I hope you find comfort soon with eye protection and lubricants. UK NHS website is trustworthy too, I think. Many people here manage flareups, then long remission, and look out for triggers.

[LiliS]

Thank you...sometimes here i found more information than any eye doctor actually could know...i read medical articles from medical journals ( i,m a MD myself) ,but i need know informations from patients like me,bot from the books...i know everything about dry eyes,trust me...and yet,i can,t findna relief for mine... now,for insytance i would really want to know how you all wash your eyes ( not the eye lids!) because i can,t find a solution for that: i tried sterile swline vials,sterile water,washing solutions from the pharmacy ...everything stings and dehydrate even more...and i feel the need to refresh them with something ,,.

[LiliS]

Thank you.,Littlemermaid.....but we dont, have them here...i live in Romania...

[sazy123]

Hi Matt,

Sorry to hear about your dry eye plight.

If you have tried everything with no relief, look into heavy metal toxicity as an underlying cause of your dry eye.
I too suffered with severe dry eyes and tried everything with no relief! I have since realised that dry eye is just a symptom of deeper underlying imbalances in the body. I was toxic with heavy metals and I had gut dysbiosis (everything starts in the gut). I have detoxed my body and fixed my gut now I no longer have dry eye. Don't treat the symptom, treat the cause.

Take care Sazy

[LiliS]

Yes,i can understand you,i have almost the same problems ...constant eye pains,burning( from Sogren disease) ,blurred vision,pains in the eye lids too ( posterior blepharitis) ,sticky deposits in the corner of my eyes,mucus ,redness....andhuge anxiety because all of that...i too tried almost all artificial tears on the market,i find some relief with the gels( Viscoters) and petroleum ointments( Soothe pm) ,but i,ve noticed they dry my eyes even more ...i also find some relief with antibiotic ointments,which means i have infection in my eyes most of the time...i am on Restasis for 3 weeks now,it,s too soon to say it helps ( i don,t tolerate it too well,but everybody keeps saying i have to wait months until it will work...) ..i too don,t know what to do and how to moisture my eyes...maybe someone will help us...