Blepharitis and dry eye sufferer for several years.....
Posted , 10 users are following.
I've had blepharitis for more years then I care to remember. This condition started in my early 30's and I'm now approaching 47. Living with this condition has been the most dabilitating thing I've ever encountered. It has affected my personal and professional life in the most profound way. It took years for them to diagnose. The first eye doctor I seen just said you have the eyes of a 90 year old and that was at age 32. It was years before I was finally diagnosed with blepharitis. My eyes are constantly filled with stringy mucus. I'm wondering if anyone else has this symptom as part of their dry eye/bleph condition. It makes it very hard not to touch the eyes because the upper lid fills up so much with mucus it gets very painful with pressure from the mucus that the only thing I can do is push the lower lid up into the upper lid and it will eventually drop down where I can then clear it out. I know it sounds very gross. I recently had my lower ducts cauterized and since having that done I've had two bouts with the worst flare up in my life. My lower lids got so red and crinkled up and the skin actually broke open so they are very sore. I don't feel I'm getting far with the doctors at the eye hospital so I'm now gonna make an appointment with the dermatologist after reading others posts. Can anyone tell me if they have the problem with the eyes producing mucus. The eye doctor says since I don't have any tear film the eyes try to compensate by producing mucus. I'm curious if anyone else has this as part of their condition and any products that have helped them with either the mucus or helped to clear up the cracked and crinkled skin around the eyes. I recently started using the wet ones as I read on here but it's too soon to tell if they will help. Any information on products prescription or over the counter that have helped would be appreciated. Sadly I feel I get more help from the forums then some doctors. I don't think these doctors or anyone for that matter can sympathize and know how dibilitating this condition is unless they have experienced this themselves. No one seems to realize the impact this has on ones life. We have cures for cancer but yet can't come up with anything that cures this dibilitating condition. Any and all comments and help is appreciated. Also recently was given xiidra the new eye drops and this just increases the amount of mucus so I recently stopped this as well. Just another tried treatment that has done nothing.
0 likes, 17 replies
debbie47456 Lena46
Posted
Hi lens. I know how ya feel. All that has happened to me. I've been using bleathaclean wipes now for 2 years and it's under control. Got my life back. You can buy these from any chemist quiit expensive but they work for me. I also use hylo tears twice a day.
Lena46 debbie47456
Posted
Thanks debbie. I looked up the wipes and they are expensive. I'm gonna order them and at least give them a try. If it works
just so so I won't order again due to the price but if they actually help I don't care what the price. Would pay anything to get this under control. Thank again!!
JJ111 Lena46
Posted
Lena,
You are not alone!! Like most on this board I suffer with this condition and it has lowered the quality of my life to near suicide at times. I don't have mucus like you but the burning and stinging all day long is enough to drive one mad. I think it is important not to give up and keep trying new things. In all my research it appears there is no one solution that will work for everyone. Everyone's body chemistry is so different that you have to find what works for you. My suggestion is to try Tea Tree oil and Baby shampoo twice a day if you have not done that already. I would also keep your eyes hydrated with artificial tears all day long even if they are OK. The last thing I would suggest is looking at your diet in regards to sodium. I don't see it posted here but my research has shown that a diet high in sodium (over 1400mg per day) can make this condition worse. Cut out the sodium for a week or two and see if it helps. In the end I feel your pain and you are not alone. They will find a cure for this one day and you just have to keep trying new things until they do.
?Jae
Lena46 JJ111
Posted
Hi Jae, thanks so much for your reply. I have been looking all over the Internet for different things to do to control this horrible condition. I am with you when you say you have been near suicide at times. People don't understand that and just can't wrap their head around the fact that having dry eye could cause that much agony. I honestly don't think the doctors get it either, at least I feel like mine don't. I go to the best eye hospital in Pittsburgh, eye and ear hospital and I get that there is not a cure yet but I don't feel like I am being offered enough of a solution to ease the agony of this. He cauterized my tear ducts this time and thinks if they can keep tears in my eyes they won't produce so much mucus but that was two months ago and there has not been any change. It's hard to work having this especially when on computers and work in a production and quality position. Someone suggested the blep wipes but they are very expensive. I know about the baby shampoo what type of tea tree would I buy and do I mix it with the shampoo. I would imagine my sodium is good, I don't like salt but since you mentioned it I'm gonna start to watch what I'm eating and see how much sodium might be in it. I'll try anything! Someone suggested the Wet Ones hand wipes. I just started trying those too. Thanks again for your message sometimes it just help to blog about it and know your not the only one going through hell with this. Good luck to you and thanks again!!
dawn90509 Lena46
Posted
Would you consider trying manuka honey?
Lena46 dawn90509
Posted
dawn90509 Lena46
Posted
Dawn
GroggerLUFC Lena46
Posted
Hi Lena
I know how you feel. I've had the condition for about 12-13 years now. I've finally got it under control and lead a comfortable life now.
I was at the point a year ago where despite having a wife and child to support I started to consider suicide because of Blepharitis. Really wanted to end it all. I found that seeing the doctor about this is where my recovery began.
I was put on anti depressants and have been on them for 10 months now. These really helped calm my Blepharitis down as having spoken to someone and being on the tablets reduced my stress and anxiety massively.
As well as the anti depressants I started a new routine. I had a month long course of antibiotics which cleared up all the mucus and crust from my eyes. As well as that I bought an eye mask off Amazon and used this 3 times a day. Morning after a shower, after work and then straight before bed. I used to find the hot compresses never worked but I swear by them if you're strict with them.
When I'm in the shower I use a coconut oil based shampoo called Capasal. I get a lather on my hair then use that to scrub my eyebrows and rub the lather on to my eyelids and eye lashes. Leave it for 20 seconds and rinse off with warm water. As soon as I step out of the shower I do my eye mask then spread a very very thin layer of hydrocortisone ointment over my eyelids.
This routine has stood me in good stead even during the winter months when it's at it's worse. I still have red eyes but there's no swelling, mucus or itch and pain.
If it's really bringing you down please speak to your GP about depression. It really helped me!! And please please try the capasal shampoo. Myself and other posters on here swear by it!
Lena46 GroggerLUFC
Posted
Hi,
I can't thank you enough for messaging me. It helps me just to know that I am not the only one that has been suicidal over this horrible condition. I've read that from others on a few websites. It amazes me that doctors don't seem to take this condition as serious as one would think. It effects your quality of life so much. I'm constantly miserable because I feel like it's never gonna end no matter what I do.
Like you I was on a course of antibiotics, doxycycline 100mg twice a day. Nothing it seems will get rid of the mucus. That is what bothers me the most about this condition above anything else. The flare ups come and go but I always have the mucus. Like you my flare ups occur and are much worse in the winter it seems. My doctor talks about the warm compresses, suggested I put rice in a sock and heat it in the microwave for 30 seconds. I've done that, but I find it hard to do it consistently.
Do you think that stress along with anxiety and depression from this actually causes the condition to become worse? I found that my GP did not know much about the condition so I see an eye specialist but unfortunately I still have little relief.
I will definitely buy the shampoo and can you tell me what type of antibiotic you were given for a month? As for the antidepressant I'm already on Wellbutrin, it did help initially as I did not even want to get out of the bed in the morning to face another day of this. I'm thinking I may need a change on this as well. Can you also tell me was the eye mask just a blepharitis mask they sell on Amazon? I'll order one of those as well and try to keep on it as much possible. I will do ANYTHING to put this condition at bey.
Again, thanks so much for your message, it's amazing how much these blogs have helped my sanity. Just hearing from those who suffer with this madness has helped me to know I'm not alone and I learn a lot from others in what they are doing to find relief.
Thanks !!
GroggerLUFC Lena46
Posted
I'm currently taking citalopram for my depression. I was initially on 20mg but it was upped to 40mg.
The antibiotics I was on was OxyTetracycline. I was on 2 a day for about 3 months.
I bought my eye bag from Amazon. I'm not sure what it was called something like MGD eye bag or something like that? You put it in the microwave for about 15 seconds and leave it on your eyes for 10 minutes then rub your eyelids gently with a clean finger to coerce the oils in your eyes to work their way through to your eyelids. You have to be strict with it and it took about 2 weeks before I saw any improvement.
If you're on antidepressants and you still feel low then you definitely need to speak to your Dr about a different medication or a stronger dosage. Even if for you it doesn't clear your eyes it'll stop you feeling suicidal.
The shampoo is available from most pharmacies I've been to. I'm not sure if you're in the UK but you can buy it from Boots and Amazon. It's about £10 a bottle but 1 bottle lasts me about a 6 months.
Something will work for you but everything takes time. Sadly it's not an overnight fix. Try sunbeds as well. The UV light is good for the skin.
Lena46 GroggerLUFC
Posted
Hi!
Was out of town for a few weeks but wanted to just leave a note of thanks! I really appreciate all the help from people on these blogs. You and others take the time out to help people that you don't even know. I will definitely try the things recommended by you and others. At times you feel hopeless with this condition so these blogs truly do help. Thank you again!!
Lena46 GroggerLUFC
Posted
I'm sorry to bother you again and no hurry getting back. I looked up that antibiotic and it does say they use that for bacterial infections of the eye including conjunctivitis. I will tell you that I do not get the eyelid swelling, redness of the eye lid, flaking, etc very often. I will have a flare up now and again but always, always have the clear mucus; that part never does go away. The mucus is the part of this that bothers me the most. When my flare up clears the mucus is always still there. I definitely feel for those that have those flare ups a lot, I can't even begin to imagine.
I wanted to see if you had the mucus constantly even when your flare ups cleared, was the mucus still there? Also, do you feel that the antibiotic is what cleared the mucus for the most part? My eye doc tells me that the reason for the mucus is due to dry eye because blepharitis effects the tear film of the eye so even after the flare up is gone the tear film is damaged. I'm just curious if after you started taking the antibiotic for a period of time if that is when you noticed the mucus clearing? I know you were doing a combination of things but I've used hot compress's and that helped with the actual flare up but nothing seemed to help with the mucus, not even the doxycycline. Actually I was on that for a bout of adult acne at the time, it wasn't for the blepharitis but the eye doctor said being on that might help. It did not.
I don't live in the U.K., I'm in the U.S and at times I honestly think your doctors are more knowledgeable then ours. The doctors here seem dumb founded at times. It took years and about 15 different doctors before I finally got the diagnosis of blepharitis. I was just curious if you felt that the antibiotic is really what pushed things along in clearing the mucus since it does say it's used for conjunctivitis. Again no hurry getting back. For you to not have the mucus anymore is amazing and I would do just about anything to get that to stop. I have an eye appointment coming up and will definitely be talking to him about the antibiotic. I would like to give it a shot.
Thank you again!!
GroggerLUFC Lena46
Posted
Hi Lena
Yeah when I had the antibiotics it cleared up my mucus and the stickiness from my eyes and the hot compresses helped with the swelling.
The only worry with antibiotics is that you can't stay on them forever and after a while if you use them for a long time it can affect your body.
I'm not sure what if you have capasal shampoo in the states but I'm sure you'll have an equivalent under a same name? I have a feeling that will help with the mucus also? It does with me.
Have you ever been prescribed drops for your dry eyes? I used to get them but they did nothing for me.
Have you had an allergy test in the past? That may explain a few things?
Hope you've managed to have a chat with your doctor about your depression. That should be a priority.
Hope this helps?
PS. Just had a quick google search and you can get capasal in the U.S.
Guest Lena46
Posted
Jusy Piriton (chlorpheniramine) tablet help me.
Do yoy test this?
todd80346 Lena46
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Lena46:
Consider doing some research on the National Institutes of Health site. I found some very helpful info there. Just know its doctors posting their research and some of them have financial interests in the conclusions they reach. Nonetheless the background info I found on Blepharitis was very helpful. There was an article by Dr Tseng, maker of those expensive Cliradex pads, that had great background on Blepharitis but there were other helpful articles as well. You might be able to find more about why you have the mucus.
I don't have mucus but my doctor prescribed warm compresses for 5-6 minutes a day AT LEAST 4 times a day, followed by OcuSoft Plus wipes (leave on eyes to kill bacteria and perhaps mites). I have a hard time being consistent with compresses but after 5-6 weeks, and I started very slowly, I've found some great improvement. I also use preservative free drops following the Ocusoft. The drops also help clear up the blury vision from the warm compresses. Oh, I use an eye mask that is composed of flax seeds, bought off Amazon. I've gotten to the point where my triggers like alcohol and caffeine are not causing the dramatic inflamations they used to. Still a work in progress but those warm compreses and ocusoft pads have amde things 80% better. Lastly I find I have great improvements when I wake up in the mddle of the night and used the pads without turning the light on. I understand the mites come out at night.
I've found I can get the compresses done twice before I leave for work and twice after work.
Be careful with the advice you read on the forums. I went down that road and tried using tea tree oil and jojoba on my eyelids and incurred some heavy pain after doing that twice; felt like somone put my eyelid on the kitchen table and hit it with a hammer. Take a look at NIH (in DC) to get more educated.
todd80346
Posted