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My Story So Far, From June 2020

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  • My Story So Far, From June 2020


    It feels really relieving to be among people whom I know shall be able to understand the kind of pain and suffering that only we know. I've tried communicating my grief to many people around me. But the sad truth is that people who do not suffer from what we suffer, can hardly ever guess what we are going through. To cut a long story short, my bulk of suffering began or in or around the month of June 2020. I remember that I received a diagnosis of meibomian gland dysfunction. My symptoms back then were rather mild and got my share of eyedrops and came home rather happy. being diagnosed with meibomian gland dysfunction, or blepharitis. In a place like India is a separate ballgame altogether. As you keep researching on the internet, you realise that you yourself might be way ahead of the physicians who are treating you and who are yet to update their own treatment strategies and modules. Yet the tragedy is that you cannot administer more advanced medications to yourself while you need to wait for the indigenous market to develop and for new options to be available in order for physicians here to firstly learn of them and then begin to prescribe them. But by the time that they do, the damage, of course has been done. Well before June 2020, I suffered from a bout of viral conjunctivitis I only managed to get rid of it by means of steroid drops namely FML. Now I can dimly recall that I received a prescription of blepharitis long back and back then I was only told that it was a mild case of eyelid inflammation that came and went. But my regular grappling with this disease came on after June 2020. I kept on using eyedrops until I got prescribed azithromycin ointment. But the symptoms only kept getting worse. And they varied from occasional burning to stinging to scratchiness of the eyes. The doctors I visited merely said that my glands were blocked and they kept on prescribing the same variety of eyedrops and it is also interesting to note that preservative free eyedrops are hard to come by In India. Eventually, as the winter came around, my symptoms got much worse. And there were times when the burning got so bad that the eyes began to water and visual acuity was hugely challenged by episodes of blurriness and haziness. My career began to take a hit. And it was only then that I got diagnosed with seborrheic blepharitis It all began to make sense to me because I had suffered from seborrheic dermatitis for a long time. My eyelashes always contained dandruff and the skin around my eyelashes and eyes would always remain rather dirty if I may say so. My eyebrows had dandruff and any place where any hair grew contain dandruff and I began to see that perhaps it was the eyelashes that also were putting out dandruff. And as a result, I ended up with this one. Now I have been put on corticosteroids. They are helping but I fear the day that the course will come to an end and things might be back. I'm looking for strategies to manage it. And I hope that I can get some constructive help for seborrheic blepharitis over here. How do you manage your condition? What are your symptoms?

    To sum up-

    Symptoms of burning, watering, and cloudy vision. Ingrown lashes, occasional lid pain, wind intolerance, hordeolums or such growths underneath upper lid of right eye. Another thing is that warm compresses seem to make things worse for me. Cold weather is hell.

    Currently on chloramphenicol and 0.5 % hydrocortisone, carboxymethylcellulose eye drops. Cleaning 2x a day with hypochlorous acid spray on a cotton ball. Trying oral fluconazole for sebderm, along with shampoos and lotions galore. On oral doxycycline as well.

    Thanks for all your help! I know that DEZ is the best there is for sufferers like us!

    I'll be glad for any advice.

  • #2
    Hi Soham, thank you for your post, and I'm sorry to hear about your challenges. I have had plenty of struggles with doctors in the USA so I can only imagine it must be much harder in any country where there is less funding for healthcare. It's just dumb luck I was born here; these things are deeply unfair, and I wish everyone had equal access to treatment. So, my heart goes out to you.

    I wish I could be more helpful, but I do not have seborrheic blepharitis, just regular blepharitis. I probably cannot tell you anything new, but I will share some thoughts in case they help.

    You didn't mention diet in your post, so it may be worth looking into diet as a possibly underlying inflammatory cause. Have you ever noticed your symptoms getting worse or better based on what you eat? You could try eliminating any foods you're unsure about, and gradually add them back. Diet has made a big difference for me, plus drinking lots of water. I make sure to drink at least 1 liter every morning, and it really helps.

    In addition to dry eye and blepharitis, I have very sensitive skin and a history of acne. For me, too much shampoo causes my scalp to produce more dandruff. I used hypochlorous acid before as well and at least for me, I found that using it too often dried my skin out and made things worse. 2x a day would be too much for me, but this is not an issue for some people, and you know your own body, so I would trust yourself on that. Over the years, I have found a couple more mild brands of "natural" shampoo that dry my scalp out less and help maintain a more even level of dandruff. Fish oil and/or flaxseed oil for omega-3s can help, but it can also be challenging to find a good brand. You could try eating more fish (if you aren't mostly a vegetarian like me).

    If warm compresses make things worse for you, then I'd say don't do them. But I would definitely do blinking exercises as often as you can remember. And I find it helpful to gently massage the meibum out of my eyelids with knuckles on my thumbs.

    Cold weather and wind are still difficult for me too. I wore sunglasses anytime I went outside when my dry eye was bad. If you live in a cold or dry area, it may help to have a humidifier running indoors at all times, or to even move somewhere more humid if possible. Cold, dry, weather adds irritation and inflammation and I think I would have had a much harder time in that climate.

    One last thing: how do your corneas feel when you wake up in the morning? I tend to sleep with my eyelids partially open, and this sleep mask helped a lot it is expensive but it's been worth it for me. If you have undiagnosed lagophthalmos that could be contributing a lot to your symptoms.