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Blepharitis misery

Posted , 8 users are following.

terri95729
terri95729

After years of searching for help with my eyes I was finally diagnosed with blepharitis about 8 weeks ago. My life life had been completely miserable lately. I have had allergies and horrible eczema since I was little ( I'm now 54). The dr seems to b helping me as much as possible . I'm doing the lid scrubs, taking oral doxycycline for 4more months using prescription allergy eye drops twice daily and preservative free drops up to 4x daily taking Allegra daily using erythromycin ointment on eyes 2-3 times daily for 2 more weeks just finished steroid eye drops but truthfully I still feel and look horrible!! My daughter is getting married in May and quite frankly I just want to feel normal again Is there anything I'm missing the loneliness I feel is horrible I don't think people understand how debilitating this can be!!!

0 likes, 21 replies

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  • nicforeman
    nicforeman terri95729

    Posted

    Broke my heart reading this because I can totally see this being me in the future. I'm having a similar experience, was diagnosed with blepharitis just last week and have eczema all over my face and more recently my upper body. I never had skin problems as a child, all started when I was 13 and over the years just keeps getting worse, I'm only 19 now and I dread to think how much worse it could get. I'm having one of those days too today, just don't want to go out or be seen by anyone because it's hideous, and this is only after a month or so suffering with it although I've had it on and off for years and not known what it was. I'm so sorry you're going through it too but sounds like you're taking really good care of it, supposedly most people who suffer with blepharitis have good and bad spells so I suppose just keep up your good hygiene and pray for an improvement soon.

    Not sure what advice I can give other than to just try to carry on life as normal because what else can you do I suppose, don't let it stop you going places or doing things because at the end of the day it's just uncomfortable and sometimes kind of gross skin but that doesn't say anything about you as a person and those who love you won't see you any differently. And they're the people that matter.

    Sorry this was really long, I'm sorry I can't offer much help but I just really wanted you to know you're not alone, I'm really struggling to deal with it too, especially at uni when my friends and flatmates want to go out and they're beautifully made up and I don't go because I look a total (excuse the pun) eyesore.

    The only practical advice I can think of is maybe try taking an anti-histamine once a day to relieve irritation? I'm having a really bad flare up and a doctor suggested that to me so I don't feel the need to be scratching and rubbing at them and it seems to have helped in the few hours since I took it. Also maybe a hot compress, boil some water and when it's still hot but bearable soak a flannel in it and press over your eyes for 5-10 minutes, keep soaking it every so often to keep it warm. It's an excuse to have a little bit of time relaxing and remembering you're more than what your eyes look like, mine always feel a lot fresher afterwards and with some chilled music on it's kind of a blessing in disguise as it forces you to relax a bit haha.

    Keeping you in my prayers.

    • terri95729
      terri95729 nicforeman

      Posted

      Thanks for your heartfelt response! We may b many years apart but we're both at the beginning of our blepharitis journey ! I have learned that good lid hygiene is number one so I make sure to use warm compresses at least twice a day as far as everything else goes I like u r just beginning to see will or won't work I did meet a lovely dr I like and can trust (that's very important)! Plus my daughters a PA so I can always consult with her however hearing about other people's experience and getting their advice is really what I was looking for! So I guess we'll both keep checking for new ideas and reading testimonials from people who r years ahead of us with this stubborn disease !! Stay positive!!😊

    • nicforeman
      nicforeman terri95729

      Posted

      So glad you've had some awesome responses! I've been keeping up with them and I'm going to try dosing up on omega 3 haha, just been and bought some mackerel, sardines and chia seeds (all very high in omega 3, i'm not keen on taking tablets and would prefer to get it from food but chia seeds are amazing just 2tbsp has 4000mg!) and some 1000mg capsules for the days when i can't make up to 6000mg in my food. Definitely going to keep a diary of what I eat each day and how severe my eyes are, hopefully I'll see some improvements by the time the new year comes around.

      Good luck on your journey and please do update if you see some improvements, I'm so glad you have a good support network and lots of suggestions to try! It's so encouraging hearing from others who have it all figured out and are able to keep it under control, we will both learn a lot in the next few years I suppose! Wishing you all the best smile

    • agnes99004
      agnes99004 nicforeman

      Posted

      I experienced really dramatic relief within 24 hours after mega dosing with 1200 mg gelcaps. I just chocked them down with lots of water after several miserable days and nights od severe symptoms. My eylids were so inflamed that I looked like I had severe allergies...which I do not. I put two tea bags on them with a soft cloth to hold them in place and began tak i ng a cap an hour for six hours...six hours llater it was like night and day difference. I added a 10mg zy generic ceterizine hydrchloride tab (allergy pill) daily to take care of itchy eyes and watery eyes, two common allergy symptomz, and used a dab of vSeline (petroleum jelly) Round the periphery of my eyelids which had become flaky and dry from using tea tree oil w/baby shampoo to combat bateria.

      I was doing anything and everything and ultimate ly too much, thus exacerbating thhe condition.

      I am 67 and my bleph, I now have concluded, after almost six months of hellish misery, was due to a hormonal imbalance.

      That said, since it is a chronic condition, I will have to look after my symptoms for the rest of my life and spend a small fortune on quality Omega3 supplements. But I'm not complaining.

      I hope my experiences and ultimate resution can be of some help to others.

      Agnes

    • pamela48771
      pamela48771 agnes99004

      Posted

      Hi Agnes, I'm around your age and my experience echoes yours exactly. My bleph improved dramatically after taking 6,000mgs of Omega3 capsules. I tried to cut down recently to see if it made a difference and my eyelids started twitching within a day. I use dry eye drops after my heat treatment twice a day. I also shampoo my eyes with baby shampoo and after the heat treatment I wipe any excess oils away with tea tree oil wipes. I take a fexafenadine anti histamine tablet a day which works well for me as I have chronic rhinitis and some pollens and spoons can affect my eyes.

      another great asset for me are my new specs which not only are reactions for the sun but have a drive safe antiglare coating which really helps with shop lighting, computer screens, theatre, and night driving.

      its cost a bit but now I'm in control of my bleph it's worth every penny.

      as my eyelids can be greasy I use a cream eyeshadow from No 7 in two shades and just mascara on the special occasions I use eye makeup...and get away with it! Which I had never thought I would be able to do again. 

      I hope our positive posts posts help others persevere with tackling their bleph. Good luck everyone xx

    • rita02437
      rita02437 pamela48771

      Posted

      Dear Pamela,

      It's so heart warming to meet people like you although on  internet only. I am very upset not only about BLEPH but also about none of eye make up.

      So your advice is VERY valuable.

      R

  • agnes99004
    agnes99004 terri95729

    Posted

    You may be doing too much . I have had this condition for six months and I to did too much and made it worse I finally came across some information about hormone imbalance especially in us older women being a big factor in this condition I currently take 6000 that is six 1000 mg capsules of fish oil omega-3 fish oil every single day with meals and snacks every time I eat something I take one this has made a big improvement the other thing I use is an antibiotic ointment on my eye lids with closed eyes twice a day for two weeks running and then I stop for one week and take it up again for two weeks if you use it all the time it loses its effectiveness trying not to take so many oral medications this is a topical condition and for most people change your pillowcase often use Vaseline on the rims of the outside of your eyelids if they get sore or burn don't use anything else or purchase refresh nighttime appointment I news it on the rims of your eyelids at night for extra relief and to prevent dry skin there and flaking try this for a week the oral up the antibiotic ointment is called as a site a Z a SI TE it's covered by insurance but it is an expensive co-pay but it does work I would suggest taking the fish oil flaxseed oil capsules the Primrose oil capsules all of these omega-3 fatty acids that will restore your hormone levels good luck God bless

    • agnes99004
      agnes99004

      Posted

      AZASITE is corre t spelling of antibacterial opthalmic sution. Use after washing eyes or taking shower and letting warm water on clozed eyes wash away rhe accumulated night debris. Then with clean hands using different finger for each eye to avoid cross contamination, crub across closed eyelids one drop each eye. Again at night. Use warm compresses duri g day for relief and Refresh eye drops as needed. Take your omega3 supplements religiously. It is working for me. I hope it does for you too.

      Good luck.

    • terri95729
      terri95729 agnes99004

      Posted

      Thanks for the advice! I know this disease is very different for each person so I appreciate all the suggestions I get in hopes that some will work for me too!!😊

    • terri95729
      terri95729 agnes99004

      Posted

      Thanks for sharing what is working for u! I am slowly absorbing all the wonderful suggestions I am getting from people on this forum . I'll update as I begin trying some of these things! Thank u!😊

    • terri95729
      terri95729 agnes99004

      Posted

      Thanks for your detailed response ! U have a plethora of information that seems like may help me!! I am starting with the fish oil tonight! It's truly proved to b a very stubborn disease and unfortunately it's getting the best of me! I have MS severe migraines and horrible eczema but I've never felt so impatient and genuinely bothered ! My eyes r beginning to feel more like a foreign body rather than a part of me ! I'm just counting on this forum to give me the hope that I need ! Thank u!😊

  • pamela48771
    pamela48771 terri95729

    Posted

    The best thing you can do is read all the posts on this forum as bleph is different for each person. There is a wealth of routines, help and support available like shampooing eyelashes with baby shampoo twice a day, antihistamine daily, omega 3 x 6,000 per day (this was ground breaking for me. Read the clinical trial conducted using this high dose. It is on line), T Tree oil works for some. Wet wipes for staph on eyelids helps others. Dry eye drops are excellent as are drive safe antiglare reaction to light glasses which help with photosensitive eyes so concerts, theatre and shop/public lighting is less uncomfortable.

     You can amass quite an Arsenal of options for your daily routine which will help you feel more positive about being able to get it under control eventually. It took me two and a half years to do it but I've got right on top of it now.

    all the best and good luck, Pamela

    • terri95729
      terri95729 pamela48771

      Posted

      Thank u Pamela for the information. I seem to find myself in very unfamiliar territory. I'm usually the one giving advice and helping others out and now I find myself do desperate for any possible treatment . But not just treatment from a trained professional, also from people like u whose testimonials I feel may truly help me! One of my daughters is a PA and she has been very helpful however her attitude seems a little nonchalant to me. I'm really struggling with this! I have MS severe migraines and horrible eczema all of which I deal with and try not to let it affect my lifestyle but this is really causing chaos in my life! Thank u for the advice! I will try and b more diligent in checking this site for information and knowing that most people begin this journey feeling like me but r able to come out on the other side ! This is all the encouragement I need to plow through blepheritis too!!!😊

  • haircrazydaisy
    haircrazydaisy terri95729

    Posted

    I know exactly how you feel. I'm a bit further down the road - meaning that I have the blepharitis under control most of the time but still get flare-ups. I gave up on the drops - they seemed to make my eyes almost worse. I take Omega 7 - sea buckthorn oil - capsules. They have helped so much. I can't recommend them enough. I keep my lid borders scrupulously clean and only wear mascara on very special occasions. I lost most of my eye lashes because of this awful condition so feel very unattractive most of the time but have to be grateful for the positives in my life :-)

    • terri95729
      terri95729 haircrazydaisy

      Posted

      Thanks for sharing !! I can certainly sympathize with u ; I too feel very unattractive because of eyelash loss and just the fact that I'm unable to wear mascara I just want to fe normal and my eyes always bother me and remind me that u am not ok I've been keeping up with the lid scrubs and everything else the dr had told me to do so I'm hoping that things will get better soon Just reading these posts has restored some of my faith that just maybe one day I'll feel " normal " again 😊🙏

    • agnes99004
      agnes99004 terri95729

      Posted

      Please try taking mega doses of Omega3fish oil supplements. I too was approaching six month mark of misery when i read a post here and one morning when i woke up wirh onflammed puffy eyelids i put tea bags on them with a soft cloth to hold them in place for an hour ttok 6000mg of omega3 and felt better by the end of the day. I now take a zyrtec 1g tab daily for itchy and watery eyes prevention and 6 120g omega3supps with meals throughout the day used Refresh nighttime ointment around my lids that had dried out and woke up flaky every morning from all the other things id been doing to control this situation and the ointment helped. Most importantly i refilled my expensive AZASITE opthalmic ointment, rubbed a drop across each eyelid closed after washing morning and night for two weeks to knock out the bacteria. I then stopped using as my dr said, least it become ineffective with continual use. Was due to go back on a week later but didnt need too. The hormone balance has been restored by taking omega3 which i continue to do along with my daily zyrtec tab and i feel wonderful. Kept expecting to have another outbreak but three weeks later am in heaven. Try the omega3s plus zyrtec what have you got to lose at this point.

      Good luck

      Agnes

    • agnes99004
      agnes99004

      Posted

      Thats a ten mg tab of zyrtec

      And six or five 1200 gelcap of the Omega3

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