Hi all, I have Primary Sjorgren's and have found over the last few months that my eyes are extremly dry most of the time and even though I have different types of lubricant that I apply constantly and use Carmellose eye drops every 5-10 minutes to relieve the pain and soreness I experience from having dry eyes. Also becuase of this dryness and gritty feeling, I wake up each morning with a horrendous headache which remains for the majority of the day.
I was wondering if people who suffer with something simliar can recommend anything that may be able to help alleviate at times unbearable pain.
Hope someone can assist and thank you in advance if you have any suggestions.
I got my GP to prescribe Viscotears for me. Now instead of every hour, I have my eyes done 2-3 times a day (once in the morning, once before bed and once - if needed in the afternoon).
Poor you! I have had SS for four years now but my main problem is dry mouth so have to continually sip water. But I have had very bad dry eye problems and eventually attended Moorfields Eye Hospital in London. Obviously, I live in England. They prescribed Hydromoor Soothing Eye Drops that are 'None Preservative'.
Not sure where in the world you are but perhaps you can obtain them abd guve them a try.
I have primary also. Started with dry mouth and dry eyes came only about 15 years ago. I use evoxac/civemeline supplanted by sensitive eye moisturizers. I know that the medication isn't much favored by folks on this site, but it works for me where nothing else does.
One needs always to be sipping water to keep all the systems going. Well, almost always, I cut off fluids - except just enough to get thru final 2 rounds.of meds - at least 4 hrs before bedtime because I cant handle multiple waking.during sleep.
Hi Mandy, I recently attended a medical conference on Sjogren's and the doc spoke about special hydrating lenses that now exist for dry eyes. Apparently they bring spectacular relief to the most severe cases. I live in France but I'm guessing they must be available elsewhere. I will try to find the name.
Hi Moglo I am waiting for a diagnosis I have severely Dry eyes Dry mouth sinisis throat I I use viscotears hourly lacrilube nighly and during the day when they get worse which is normally later in afternoon and I get a film come up over part of my eyes I have to wear glasses to stop the wind I also use a saline nasal spray too as I get a headaches but I found a warm flannel over the eyes very helpful and head not to hot though I do this as many times as I feel nessessary I find it helps its trial and error I feel for you all this is horrible syndrome i do find this site very helpful with so many some good tips give the flannel ago good luck Jakki
Thank you Maureen, I will ask my doctor if I can be prescribed these and like you I also suffer with a very dry mouth and need to sip water regularly. I am based in Glasgow. Thank you once again for your help.
Hi Moglo I just thought of something I was told to do when I saw the eye specialist I had a frackle behind it but he said my eyes looked like sjogrens I explained what was going on and he said they are exstreamly dry he told me to practice blinking as apparently we don't blink as often as we did before we had dry eyes Try that as well its remembering all these things to do and try x
Thank you so much Jakki, it is really kind of you to share what works for you. I will give them all a go, I am willing to try anything to try and gain some normality back in my life.
The lenses are called scleral lenses. I can't seem to find much info on where to get them fitted (Moorfield's eye hospital might be the place to start)