I've been reading on this site for quite some time and finally jumping in. I could use some advice. My eyes are pretty miserable. My name is Leslie. I was diagnosed with Lupus and Sjogren's syndrome officially last year. I saw many eye doctors over the years and would tell them my eyes are dry and hurt, but nothing was ever found or diagnosed. They would tell me it was okay to wear contacts even though I told them it was so uncomfortable, but I gave them up on my own. I couldn't tolerate them for even an hour.
My eyes can hurt so bad it triggers migraines and we didn't figure that out until after treatment for the dry eye began. My rheumatologist diagnosed me and then I found a better eye doctor later who did a thorough exam and finally began treatment for the dry eye. And I began to take less and less migraine meds! We tried Restasis last fall and although it helped somewhat I needed collagen plugs put in during winter. Within six weeks the collagen was gone and although my eyes weren't as miserable, the tops of my eyes were still painful. We suspected the cold winter had a lot to do with delaying the healing. So we put in permanent punctal plugs and continued the Restasis.
By the beginning of summer this year I felt so much better. The difference was night and day. My eyes were still dry and hurt at times but it was significantly better. However, my troubles returned when I decided to go back to college. I noticed the more I had to read both online and in textbooks during the summer, the tops of my eyes began to feel miserable again. And once again it was triggering migraines. I was taking a lot of migraine med for it until one day last month I had a migraine the med wouldn't touch and had to go to the ER for help. My rheumatologist put me on prednisone at the time as I've also had a bad flare up with a few joints too. The prednisone did wonders for the eye pain also. But once the prednisone started to taper down, although the joint pain was under control, the eye pain returned more and more with time while I tried to catch up with my classes. I'm not having to take my migraine med but I'm pacing myself a lot slower than I was. Which means it takes me forever to get my work done. I have provisional status at the college and am allowed more time, but I think they can only stretch the due dates as far as ...I think everything has to be completed by two weeks after the semester ends. And I'm falling more and more behind.
I recently went back to my eye doctor telling him about the trouble. His suggestion is that I try Restasis 3-4 times a day instead of twice a day and see if that helps. So I'm combing this site and other sites to look into the risks of using so much Restasis before I try it. I also purchased some eye ointment I plan to start trying tonight. I've been using otc eye gel along with the Restasis and still am. I had no idea there was an ointment for eyes and am a little hopeful maybe it will be just a little extra something that will help. Even if it takes the edge off I'll be thankful.
I've been fighting with depression lately. I'd cry at times if it wouldn't give make my eyes more miserable and give me a migraine. Last year I thought by now we'd have this under control better than this and I was feeling really hopeful at the start of summer. I'm wondering if the long dry hot summer weather we had added to the problems and maybe it wasn't just the reading. We went without any rain at all for a month solid. But now it's cooler and we've had lots of rain and they still hurt. Maybe that created some damage to already damaged eyes?
I make it a point to blink often when I read, take lots of breaks from reading, I drink plenty of water and then some, etc.. My husband helps read a lot of the material. I would love to hear from someone that has been down this road too. Is it just something that will take longer to heal because it's the top of the eyes? When I first met this eye doctor last year he told me he's never seen eyes so dry and damaged, so I'm curious if it's just years of damage that may take years to heal? And since it's at the top of my eyes, it will just take longer? Since the tops of my eyes have to obey the law of gravity, I'm thinking they just don't get the moisture the rest of the eyes do? Does anyone out there understand any of this?
Welcome LeslieC1988. I have not had the eye problems that you have. I use Reiki to help my eyes feel better. With winter coming on I will have to use it more than I do in the summer. I often meditate instead of sleep. When I do sleep, I may do so with my eyes open and then they hurt.
If you and your husband have not read "Spoon Theory", here is the link:
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Hi Leslie and Welcome.
I also have a dry eye problem, using Alrec right now which is what dr said he has to try prior to Restasis but he having me do something that might help you. There are Ocu-Wipes out there but I think they are too expensive and my dr recommended something this: When your eyes are dry they don't filter and you get gunk around the rim of your eye and inflammation. My eye dr called it white froth. He told me to use a soft clean cloth, put a little baby shampoo on it and clean my eyelid rims. I am not talking about IN the eye or on the lashes!!! This is the lid area where you lashes end at. Not the lashes (like I was doing wrongly he said) but the rim there. Ask your eye dr about it and it might help. A humidifier helps too. I am getting a small one for my desk at work.
I have the "bumps' under the eyelids on the top of the eyes. I think that is what you are referring to? My dr said mine was allergies. Sigh! Maybe just an allergy med would help. Ask the dr first as I don't know what reacts with what.
My eyes were doing fairly well until the weather changed here in IA and I think I have a mild sinus infection too. My eyes feel more like a pressure squeeze and bumpy on the lids under the eyes. I am on the computer alllllll day too at work so I am working on blinking more, looking away more and putting those drops in.
Hope my suggestions help you a bit! Good Luck
Leslie,
Welcome to this site!
I also have eye pain and headaches. You are trying all the right things to help the dryness. I don't know why the tops of your eyes are dryer than the rest of them. You might try some sleep goggles in case your eyes are staying slightly open while you sleep. Experiment with different brands of eye drops in addition to the Restasis, and use them often. I hope that the ointment you bought will help, too.
You might ask your eye doctor if there is a doctor in your area who prescribes the autologous serum eyedrops. I understand they can help the damaged surfaces of your eyes. There are members here who have used them with success.
Best wishes,
Cheryl
Hi Leslie. So sorry to hear that your eyes are not doing well. I have a hard time with my eyes also.
Have you tried the lacricerts that is smaller than a grain of rice that you insert in your eyes. It takes skill and practice to make them work but I find them to be wonderful.
Hi Leslie-
Sorry to hear about your eye problems. It sounds very painful and you were probably smart to give up the contact lens at least until you have the problem under some control. Since I have had Lasik surgery with devestating results (bad) please do not put that on your plan of attack. Many people have decided since they can't wear contacts because of dry eyes, then they would have Lasik or PRK. Having dry eyes is a contraindication to surgery. Some unscrupulous surgeons will take a patients money and run through the Lasik mill and their eyes will never be better.
You might try using either warm or cold compresses on your eyes during a rest period o 10 minutes or so a couple of times a day. When I was still working, I had a small ice pack in the office frig and would take breaks and find a private place and put that on my eyes. It got me through the day many times. There is a helpful website for people with dry eyes from all types of causes. You can find much information by using the "search" feature. There is a dry eye store with things you might want to purchase to see if they help. I have no interest in the website except that I've been a member since it's inception. Lucy
dryeyezone and dryeyestore
Hi LeslieC,
First allow me to welcome you to Sjogren's World! ;)
If you've been reading here for some time, you can see there is loads of information and many understanding people who care.
In regard to your eyes, I can relate to some of your struggles. I have ongoing issues with keeping dryness and inflammation at bay. I'm sure you'll receive responses about different over the counter drops and things to try. You may want to experiment with a few OTC drops and as Cheryl says, use them quite often. I use mine about once an hour many days!
Another prescription drop that has helped me, and I don't see mentioned often, is named FreshKote. Bepreve is another that has relieved my dryness and inflammation. All this with the Restasis seems to keep things fairly under control.
Oher ideas are a humidifier, and the night-time goggles.
Unfortunately, if you are feeling stress with school work, it could be making all your Sjogren's symptoms worse. Is it possible to have other modifications, as well as having more time to finish? I wonder if you may qualify for more modifications/assistance under Section 504 education laws. This link has some good info. http://www.pacer.org/publications/adaqa/504.asp
Again, welcome to the fold, and we look forward to hearing more from you.
Take care,
Melinda
Hi LeslieC,
Let me also welcome you to the SJS World and family! I'm glad that you've been able to look around as I find this site very informative and friendly!
I too have horrible dry eyes, and they got so bad that I had to quit driving as I could not see well enough anymore (it was kind of like looking through porous material); those were some pretty bad days (thyroid was also giving me grief). Anyway, wound up with a good opthamologist and I see better than I have in ages (have plugs all around and have been using Restasis for six plus years now. I use goggles (when I can remember to put them on - I swear I need to write up a "before I go to bed" list ;) :D). Do I still have problems with them, yep, but as long as I can see well enough to work, I'm good.
I see the others have given you some good information and theres not much that I can add.
Again, welcome and I hope that you'll find this site as amazing as I do.
Take care of yourself now -
Patze