Eyelid swelling

Posted , 11 users are following.

Hi all, new here and in need of help.

I've just been diagnosed with Sjorgen's and my main complaint is eyelid swelling in one of my eyes that acts up every single day from the afternoon until I go to sleep. I've been to 5 eye docs already and they say that besides the dryness my eyes are perfectly healthy (no sign of blepharitis) and had no suggestions for the swelling besides topical steroids which did not help. Eye drops and moisturizing ointments and Protopic have not helped either.

Has anybody found relief for this distressing symptom?

1 like, 48 replies

48 Replies

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  • Posted

    Shira, No idea whether it would work for your eye condition but I've recently been having a flare-up of dry eyes and found sea buckthorn oil very effective (taken internally, that is). It's the latest Big Thing and is thought to be a cure for all kinds of ills. Might be worth a try.
    • Posted

      Thanks, sounds interesting Lily.

      Can it be purchased online?

    • Posted

      Not in the UK, so I'll check for it online.

      Any brand you suggest?

  • Posted

    Hi Lily,

    Can you tell me how long to you need to take the Sea Buckthorn Oil before you noticed a difference in the dryness of your eyes.  I would be interested in this product if it actually works.

    thanks, Mandy x

    • Posted

      Hi Mandy, In my case it was only about a week before things became more bearable. However, I have to say I suspect the problem might have started improving of its own accord after that time anyway. I'm largely in remission from eye problems at the moment, and the recent problem mainly arose due to staying in a hotel room with fierce air-conditioning, when I'd forgotten to pack my eye-drops for the trip. It's a bit like the aspirin problem - would the headache have gone away on its own if you hadn't taken the aspirin? I was only suggesting it to Shira as a last-ditch possibility since all else seems to have failed.

      I'm actually more interested in taking it long-term as it's thought to improve the general sicca situation, including dry, ageing skin, as well as rheumatic conditions. At the moment, a flare-up of my old friends RA and polymyalgia rheumatica is causing me more grief than dry eyes, so I felt it would be worth a six-month trial for that too.

  • Posted

    Hi Shira!

    Sorry to hear about your eye. This may be a dumb question but have you tried cold compresses? Feel better,

    Sally

    • Posted

      Hi Sally, thanks for the suggestion.

      I have tried cold compresses but they actually made my eyelid even WORSE! Seems that anything that touches it aggravates it.sad

  • Posted

    Hi all, just wanted to give an update: Found out the cause of all my eye symptoms (swelling, drooping, dryness, redness) is due to lacrimal gland dysfunction caused by inflammation. Now trying to figure out how to treat this without reverting to oral steroids.

    • Posted

      Are any of you ladies by any chance double jointed? If you are then look up Elhers Danlos or Hypmobility syndrome. This too can give Ptosis as of course can Sjögren's I have both! So in my case I had a Schirmer and dry mouth that Henrik had he seen me then as he was alive in the 60s he would have told be I had his problem. I too have POTS but In my case my POTS is probably autoimmune as I started to feel faint post my last son when like the D of C I had severe Hyperemasis Gravidarum 
    • Posted

      Hi Shira

      Glad to hear that you have been given an explanation for your signs and symptoms.

      Did the ophthalmologist advise as to the root cause of the lacrimal gland dysfunction and any possible medications?  Jean

       

    • Posted

      Thanks Jean, though the eye doc only diagnosed me with severe dry eye due to scoring 0mm on the Shirmer's test.

      I have diagnosed myself with the lacrimal gland inflammation based on observations from others that the area that gland is located becomes severely swollen as the day progresses and my own extensive research into the matter. I will seek further confirmation from a true specialist (disappointed with my usual docs). From what I've read the root cause is inflammation and may be caused by Sjogren's since there is an attack on the moisture glands and the lacrimal gland produces the eye's tears. Haven't yet found mention of medication targeting this problem besides steroids and perhaps testosterone cream. Will continue researching.

      Pam- I'm not double jointed.

    • Posted

      Shira

      I think that you should follow up your research with an examination by an Ophthalmologist who specialises in auto immune conditions. I have been pleasantly surprised by the extensive knowledge that ophthalmologists have at my local eye hospital.

      As you have identified fr yourself you need to find out the root cause of the lacrimal dysfunction. Do you have a neuro ophthalmologist in your neck of the woods?

      If you PM me I could suggest a couple of hospitals where you could obtain more information as to the possibilities oof your dysfunctional lacrimal glands and the treatment of this. Hope thi helps.

    • Posted

      I am currently searching for an ophthamologist who would understand more about this. I'll check into the possibility of a neuro ophthamologist but I've never heard of one. I'll PM you. Thanks!

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