Dry Eyes, Dry Mouth

It took eight years for the medical profession to work out what was causing the pain and itchiness in my eyes.  I was at the point of giving up work all together as I simply could not stand bright light of any kind.  I Had to wear dark glasses everywhere and I even turned the brightness down on the TV.  When eye specialists looked at my eyes they would draw them with small circles on them and describe them as pitted.  The dryness was extreme and I was told I might have been attacked by some kind of virus.  Thick eye drops offered relief for only short periods and I thought I might end up living in a dark cave somewhere. 

Rule 1 - don't stop asking until someone makes sense to you.  I went to at least six specialists.  I do not believe in one opinion for anything these days.  Amazingly, when my partner was trying to find answers to a problem his son had, a doctor tried to discourage him seeking other opinions and said " You know if you ask three people, you'll get three different answers and then you'll be even more confused."  Makes you wonder about the medical profession at times.  Anyway at last I found a young specialist who declared my eyes to the driest he had ever seen - very unusual in someone in their 30s.  His test showed I was making only 1/6th the amount of moisture I should be making and this was damaging my eyes.  He also thought it was probably an auto immune disease called Sjogren's Syndrome, and organised an appointment with a Rheumatologist.

Sjogren's Syndrome (SS) was named for the Swedish opthalmologist Henrik Sjogren, who originally described  three symptoms together in patients, dry eyes, dry mouth and rheumatoid arthritis.  An alternative name is autoimmune exocrinopathy, which describes what is happening.  Basically the body's own immune system attacks the exocrine glands - salivary, lacrimal (eyes) and other moisture secreting glands in the body.  As in any autoimmune disease, for some reason the immune system sees these things as foreign bodies and so tries to destroy them.  Half of all SS patients have arthritis, hence the major player being a rheumatologist.

I have only ever met one other person with a diagnosis of SS.  However I have met others suffering severe dry eye problems and so I wonder if it is simply that many eye specialists simply don't know enough about it and who would ever think of going to a rheumatologist for an eye problem?  It turns out that I also have dry mouth issues.  I hadn't realised that, though I knew I had an issue eating things like dry chicken breast and peanut butter.  The dry mouth means I need to keep a good eye on my dental situation.  Saliva does much to protect your teeth, so a lack of it causes much faster decay.

I've had a number of specialists say I have the driest eyes they have ever seen, so clearly this is my major symptom.  I found a miracle product that has helped me return to a normal life.  Lacrisert inserts, http://www.lacrisert.com/ are what I use.  As long as I have popped one of these tiny cellulose inserts into each eye within one hour of rising, I have a perfectly normal day.  If I don't I'm scratching my eyes out and in severe pain after a couple of hours.  Sadly, as so few people require them, they are no longer available in Australia, so I have to obtain them from overseas.  For me, the alternative of eye drops, is very limiting, as they are very thick, so I can't see properly for a short while, and then they only last a short time, sometimes as little as 10 minutes. 

I'd also like to suggest, if you do use eye drops, on a regular basis, to ensure you find eye drops that are preservative free.  My specialist told me that the preservatives can damage the eye over time.  There are some good references to this in this article: http://fiteyes.com/forum/eye-drops-dangers-lurk-within-by-bill-sardi-809

From a dry mouth perspective I use the Biotene range of products. http://www.biotene.com/ I find the toothpaste very good, the oral gel I pop in when I go to sleep and the mouth wash is alcohol free and very gentle.  I also put some micropore tape on my mouth before I go to sleep.  Sounds crazy, I know, but it really helps and is a trick I learned when I went to a Buteyko breathing course.  I'll tell you all about that in another post.  Basically taping my mouth shut, means I breath through my nose and so my mouth doesn't dry out.  This saves me from the dryness that creates coughing fits in the middle of the night.

So far I'm arthritis free and am determined to stay that way.  I do have dry skin issues, and other dryness, but I think we'll cover them in a different posting. 

PLEASE NOTE.  I receive no financial gain from any of the companies mentioned.  I only include them as I've found others want to know what works for me.

3 comments:

  1. Cheryl,
    I also had extreme dry eyes & have now (after 40 years of contact lenses)have to wear glasses full time. Allergy to mould in my bedroom meant waking up to swollen eyes & could only see through thin slits. Apparently, the long use of hard contact lenses meant my eyes were drying out too much. Used Cellufresh for the first 3-4 weeks of wearing glasses & they are now much better.
    (I thought I had SS earlier this year). Also had chronic Blepharitis (inflamed eye lids).
    Hope you are able to improve soon - you don't realise how important your eyes are, until you have a problem with them, do you.

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  2. Hey Victoria, we do have a few things in common. I too had blepharitis, found Sterilid worked well. I use Celluvisc if I need an added boost of moisture and polyvisc at night. Can't use contacts at all with the damage on my eyes. As long as I have the lacriserts I'm fine. I'm hoping long-term my attention to my health will see this repair, even though Drs say this is it for life.

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  3. Wow, that sounds awful. So glad you have found what helps. I agree with continuing to ask questions until you find something that works. I have had doctors tell me some ridiculous stuff (after a life threatening accident). Had I listened to just them I would not be doing well today. You've got to be your own greatest advocate!

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