Dry eyes

Posted by maryy @maryy, Jun 10, 2019

I have dry eyes due to sjogren’s syndrome. Does anyone else deal with dry eyes?

@lacy2

@marye2, lioness Nice to wake up to such a good suggestion… I am overwhelmed with paperwork, filing cabinet full, desk drawer, boxes etc. and mostly from old and not so old medical files but as my memory is going, can't remember where I filed things when I need them quickly…. but sooo many papers in our files now.
I saw my last doctor for about 2 years and he put my file on usb stick when ended relationship… I decided to print as there was no index.. how can doctors these days find our test results etc. looking on computer when no index and they dont know the date? They cant always do a word search if its a report from another doctor or test result as it hasnt been typed into the computer… word search doesnt work on someone else's addition….. Anyway, 500 pages!! including half printed pages, duplicated info., pages with vert little on and errors…. now multiply that by other doctors, specialist visits …. driving me crazy. I do like getting coy of my patient file tho. and here is an example;

About a month ago i got my previous OPTOMETRIST patient file and only got around to browsing through it yesterday and discovered that during the ten years I saw her for eye exams and eyeglasses, the puff test they did on my eyes for pressure each time had readings mostly 20 and often above and up to 26 and they never told me!!!!! At the end of the ten years I was having terribly dry sore red eyes and they sent me to a new OPHTHALMOLOGIST in town….and I wondered why instead of asking me about my dry eyes specifically he hurriedly did the puffer test and immediately put me on Glaucoma drops, with a repeat prescription for 20 bottles; writing on his short report 'SUSPECTED GLAUCOMA.' I only saw this report last night, 2021 and that report was 2017 and I left that optometrist later 2017 and went to another. She never, ever, mentioned my high eye pressure. Not once. NOW high eye pressure does not mean Glaucoma and low eye pressure does not mean you dont have it… but should she not have investigated? Subsequent to leaving her I went to Toronto and top glaucoma specialist and the rest is history…His optimum reading for my eyes was 14 but current Optometrist says 20 max.

. So extra paperwork or not, good idea to ask for a copy of your patient file …here in Ontario they have to give it to yu and whether they charge or no is up to provider…I have never been charged whether put on usb , emailed or printed and mailed… glad I did because I trusted her with my eyes… had I stayed with her, what would my vision be like now.. but there was just 'SOMETHING" about her that soured.,,although very pleasant but so glad I left when I did. J. (Ontario)

Jump to this post

@lacy2. Thanks for sharing. Sorry if this is embedded in your email but what did it end up being with your eyes? Jen

REPLY
@ess77

@marye2, et al. This has been a long and really difficult journey with these dry eyes of mine. I now, after many years of trying to find something to give me some relief….it seemed to only get worse and symptoms increased and worsened. After visitng my long-term opthomologist and more of the same, I saw the optomotrist at Mayo for glasses w/prisms for double vision assistance
Welll, I reminded her I have Sarcoid, autoimmune disease since I was 40, I'm 74 now, and it hits the eyes often as it does the lungs; I have sarcoid attacks periodically and am always aware it's there.
Funny thing…I had indications of residual sarcoid in my eyes. Missed by my doc and others…..several months ago I went through a couple of weeks when I actually thought I was losing my eyesight, going blind. It was weird, with wosening and long term blurry sight, dull and just off so nothing was clear. Then it cleared up, then back again and I went for several days with much worse sight, buring, dry, itching, light sensitivity was horrid….she prescribed a couple weks ago a steroid eye drop that is amazing. For the first time in years, I can see clearly, with few blurred times and all the other stuff is far less. Now, I live in Fl and we have everything in the world blooming now, so my allergy eyes are having tough time.

I'm tapering off the steroid drops. using Refresh Dry Eye and Systane Dry Eye as needed duriing day, have used PM jel drops and love them. Alwyas ck to be sure no additives, no preservatives, no thimerisol at all.

Also, this doc suggested warm eye patch compresses daily, and an eye mask at night with warm compresses. If you want to think you've gone to heaven, try it. Works wonders for relaxation of body, but also relaxation and pain removal of eyes. Highly recommend. Try Bruder, ordered on-line, got wipes for lids too. Good stuff.
Wishing you all well on this search. elixabeth

Jump to this post

@ess77. Hi Elizabeth. Is there a Systane gel at night that doesn’t have preservatives or additives? I just looked at what I bought and it has .001% preservative. Thanks

REPLY
@bustrbrwn22

@lacy2. Thanks for sharing. Sorry if this is embedded in your email but what did it end up being with your eyes? Jen

Jump to this post

@bustrbrwn22. thanks for being so kind after my lengthy explanation… I just cant seem to say things precisely, but ramble on…
MY diagnosis from the Toronto Western Hospital was NARROW ANGLE GLAUCOMA. The dr. suggested I have an IRIDOTOMY and I might have if continued to go there, but as I got other illnesses and couldn't travel and didn't trust the local eye drs., … I waited 2 years to finally have it done in a town about 1.5 hours away.
I have an interesting article on the increase in numbers of Iridotomies being performed … as they did on my husband and daughter via our Optometrist…… they told them it was "preventative" and it's akin to , say, taking out someone's tonsils so they don't get tonsillitis; taking out their appendix while have belly open, to prevent future appendicitis… this is what the article is about

. However, with my high eye pressure the Specialist in Toronto said I was not to take ANY medications that increased eye pressure, so I took myself off Zoloft, could not use steroid nose drops when had nose/ear pain, and just about all meds I needed had a warning -" do not use if have narrow angle glaucoma. " So I really felt I had no choice than to have the laser holes in eyes.

Things is, I still have to use glaucoma drops as was on them before laser, and the holes can fill in over time.. it really is worrying.Also a lot of meds still say not to take if have Glaucoma but doctors still prescribe!!! I was shocked when the pharmacy staff person told me; dont worry the drops stay in your eyes; NO THEY DONT. Drops put in our eyes make their way into. our bodies and can cause side effects…. even the ones I use now.. Latanoprost/MONOPROST.
I have so many medical issues that I now wonder if they are age related, gene related or medication past/present related… its a merry go round and I cant get off and neither can many people especially with multiple illnesses don't you think…

REPLY

Glaucoma.org (based out of San Francisco) and many other sites have some good lists of the types of Glaucoma drops, and brand name and generic name of each type of drop and show the main side effects.

I also have chronic dry eyes and floaters from laser surgery for holes in vitreous quite a few years ago, plus glaucoma and aging… have woken to double vision when look at alarm clock etc and optometrist is not concerned; but last May I noticed 2 of husband coming up stairs.
So, when have IPAD on lap and looking at it but glance into distance, i get double side by side; yet if I am, say, looking at a vase on my dresser in distance, and i see my laptop in peripheral vision its double. I asked ophthalmologist about it; she did a few tests (not including eye pressure or checking the angles she had lazered 2 months before) she said to me and i am 77;
'You have the eyes of a 25 year old' and when I said what about the double vision she said, get this… it's age-related. I am not going back and when I sent. note to my Optometrist that i had lost faith in her, he didnt answer but my next appointment was not with him but his partner,,,,What do yo think of that?

i now just try and just look at one thing at a time and keep my mouth shut while secretly being very very worried… but living in a small city and not being able to go back to the teaching hospital that is a leader in the glaucoma field, i have no other choice although my daughter said Mum can you try and make the effort and I will drive you back to Toronto to see Dr. T—- at the hospital and pay for our hotel room… and I believe that specialist will see me again… and maybe I could make the trip once… but if he needs to see me more than once I dont think I can do it..

Bless everyone with illness including eye disease, and especially those who because of circumstances beyond their control are not getting the appropriate treatment. Doctors are not magicians and able to detect and treat every single disease, illness, condition… but from my heart I really doubt the knowledge, sincerity and capability of many health professionals.. especially through lockdowns and covid, ageing patients and burn out… and I find for myself anyway I am almost scared to ask questions or speak up , politely, as it isn't appreciated and I find is sometimes held against me/us… but if you go to a clinic that is well known for its knowledge and care,(and I presume Mayor is one of those places,) you can ask all the questions you like… and in fact they encourage it! Together we're better!!

oh dear, too much typing, can see this line but when i glance back up to read its blurry so goodbye for now..my fingers just wont stop typing…..xxx… take care everyone!

REPLY
@lacy2

@bustrbrwn22. thanks for being so kind after my lengthy explanation… I just cant seem to say things precisely, but ramble on…
MY diagnosis from the Toronto Western Hospital was NARROW ANGLE GLAUCOMA. The dr. suggested I have an IRIDOTOMY and I might have if continued to go there, but as I got other illnesses and couldn't travel and didn't trust the local eye drs., … I waited 2 years to finally have it done in a town about 1.5 hours away.
I have an interesting article on the increase in numbers of Iridotomies being performed … as they did on my husband and daughter via our Optometrist…… they told them it was "preventative" and it's akin to , say, taking out someone's tonsils so they don't get tonsillitis; taking out their appendix while have belly open, to prevent future appendicitis… this is what the article is about

. However, with my high eye pressure the Specialist in Toronto said I was not to take ANY medications that increased eye pressure, so I took myself off Zoloft, could not use steroid nose drops when had nose/ear pain, and just about all meds I needed had a warning -" do not use if have narrow angle glaucoma. " So I really felt I had no choice than to have the laser holes in eyes.

Things is, I still have to use glaucoma drops as was on them before laser, and the holes can fill in over time.. it really is worrying.Also a lot of meds still say not to take if have Glaucoma but doctors still prescribe!!! I was shocked when the pharmacy staff person told me; dont worry the drops stay in your eyes; NO THEY DONT. Drops put in our eyes make their way into. our bodies and can cause side effects…. even the ones I use now.. Latanoprost/MONOPROST.
I have so many medical issues that I now wonder if they are age related, gene related or medication past/present related… its a merry go round and I cant get off and neither can many people especially with multiple illnesses don't you think…

Jump to this post

@lacy2. I totally agree and am just figuring that out for my own body! 55 yo and just figuring that out, crazy. My sister had the narrow vision and the surgery corrected her vision but she takes no other medication. She’s almost 80, very overweight, and has no other issues while the me and one of my other sisters have all kinds of issues and we were the ones that worked out, ate healthy, watched our weight, etc. go figure

REPLY
@bustrbrwn22

@lacy2. I totally agree and am just figuring that out for my own body! 55 yo and just figuring that out, crazy. My sister had the narrow vision and the surgery corrected her vision but she takes no other medication. She’s almost 80, very overweight, and has no other issues while the me and one of my other sisters have all kinds of issues and we were the ones that worked out, ate healthy, watched our weight, etc. go figure

Jump to this post

Hi all? i am writing in response to" weiss ring", who posted re: a floater, via vitreous detachment. My husband had cataract sx in june,2020, since then so many issues ! sx went well however, a large floater developed on side of eye. went to 5 opthalmologists, and all they did was of course, prescribe drops, hes been on so many drops, cant keep up the list ! really? after reading all of your posts, i find he is not alone ! i wonder about these doctors and why no one can really find why these things occur. He does have sinus issues, living here in humid florida. I know the eye is affected by the sinus cavity, no eye doctor will tell him that, but he did go to an ENT, she said she couldnt find anything wrong. He has some pain in right eye after, almost 9-10 months now, off and on.
he went s far as leaving town, to an island in caribbean, for 8 weeks, and his eye LITERALLY , cleared up !! i was shocked.
he is back in florida with same issues. Go fiqure! he probably will have to move there ! anyone????

REPLY
@sunny1971

Hi all? i am writing in response to" weiss ring", who posted re: a floater, via vitreous detachment. My husband had cataract sx in june,2020, since then so many issues ! sx went well however, a large floater developed on side of eye. went to 5 opthalmologists, and all they did was of course, prescribe drops, hes been on so many drops, cant keep up the list ! really? after reading all of your posts, i find he is not alone ! i wonder about these doctors and why no one can really find why these things occur. He does have sinus issues, living here in humid florida. I know the eye is affected by the sinus cavity, no eye doctor will tell him that, but he did go to an ENT, she said she couldnt find anything wrong. He has some pain in right eye after, almost 9-10 months now, off and on.
he went s far as leaving town, to an island in caribbean, for 8 weeks, and his eye LITERALLY , cleared up !! i was shocked.
he is back in florida with same issues. Go fiqure! he probably will have to move there ! anyone????

Jump to this post

@sunny1971 oh I cant stay away…such a thirst for information and trying a little bit to offer help or tell my story; an ophthalmologist does some surgery but is there a limit to their knowledge/expertise? I have twice had it done in their office and ws not as comfortable with it as if it had been day surgery in a hospital.
I annually saw a vitriol specialist several years in a row out of town before diagnozed with glaucoma… i had had laser where i live and left me with floaters. He mentioned a cataract starting and that he could remove and 'clean up the eye at the same time' i presume do surgery and I think they replace vitreous with a liquid – sorry its some time ago but can be checked on internet; however, I do understand that it is not always successful if it was I think all of us with floaters would rush to have it done/…there is a post on here somewhere and a man has been seeking someone to remove his floaters and it has not been easy to find and last person/surgeon he saw is deciding whether or not to even do the surgery….
what peeked my curiosity is the being away from Florida for 8 weeks… was it the pain in his eye that cleared up while on the island, or the floater? I know sometimes on an overcast day or where I am sitting myfloaters are not as noticeable, another day looking out of a window its like puffs of smoke; looking over a sunny lake i see black dots…. am sure you will get lots of responses i am curiius to read them too. As far as eye drops – well, its never ending search in my opinion, for some of us. J.

REPLY
@lacy2

@sunny1971 oh I cant stay away…such a thirst for information and trying a little bit to offer help or tell my story; an ophthalmologist does some surgery but is there a limit to their knowledge/expertise? I have twice had it done in their office and ws not as comfortable with it as if it had been day surgery in a hospital.
I annually saw a vitriol specialist several years in a row out of town before diagnozed with glaucoma… i had had laser where i live and left me with floaters. He mentioned a cataract starting and that he could remove and 'clean up the eye at the same time' i presume do surgery and I think they replace vitreous with a liquid – sorry its some time ago but can be checked on internet; however, I do understand that it is not always successful if it was I think all of us with floaters would rush to have it done/…there is a post on here somewhere and a man has been seeking someone to remove his floaters and it has not been easy to find and last person/surgeon he saw is deciding whether or not to even do the surgery….
what peeked my curiosity is the being away from Florida for 8 weeks… was it the pain in his eye that cleared up while on the island, or the floater? I know sometimes on an overcast day or where I am sitting myfloaters are not as noticeable, another day looking out of a window its like puffs of smoke; looking over a sunny lake i see black dots…. am sure you will get lots of responses i am curiius to read them too. As far as eye drops – well, its never ending search in my opinion, for some of us. J.

Jump to this post

the pain yes, cleared up and the light sensitivity, which i didnt even mention, from the start of all this 1 omg i have been thru enough with him suffering and complaining, but i understand too !anyway he just went for it he is 67m healthy and decided to get out of fla, and go surfing ( his passion) for 2 months ! best thing he ever did, instead of hoping and praying on doctors !!!!

REPLY
@ess77

@sue225 Thanks, Sue. I'll that. BTW: the Bruder was recommended by the Mayo doc. not me….blessings, elizabeth

Jump to this post

@ess77 May I ask what "Bruder" is? thanks so much for sharing

REPLY
@sunny1971

the pain yes, cleared up and the light sensitivity, which i didnt even mention, from the start of all this 1 omg i have been thru enough with him suffering and complaining, but i understand too !anyway he just went for it he is 67m healthy and decided to get out of fla, and go surfing ( his passion) for 2 months ! best thing he ever did, instead of hoping and praying on doctors !!!!

Jump to this post

oh … I wondered as usually floaters dont come and go..,because if they away went on that island I was going to rent a ship and all of us with floaters are heading for that island.. ahh, just trying to imagine the impossible!
Seriously tho it is difficult listening to someone with health issues.. i know i talk about mine too much and it gets on my family's nerves… so I try not to but somehow end up talking about the pain of the day…. its good that you understand his need to vent and also recognize his suffering, its nice to have someone who cares. J.

REPLY
@bustrbrwn22

@ess77 May I ask what "Bruder" is? thanks so much for sharing

Jump to this post

@bustrbrwn22 Dure! Gotta' laugh, since I just threw it out there, didn't I? So sorry…Bruder is a co that makes medical supplies for eye…at the instruction of my Opthomologist at Mayo, I ordered some things for my eyes…..eye patches filled with little beads you warm in the microwave; a spray I use on my lids a couple times daily, very cooling and let it dry a few seconds – cleans the lid surface; couple of other items I got since on sale….I'm a SUCKER!

Also got a sinus mask with beads to warm a few seconds in microwave and melt as it takes away the sinus/eye pain, etc. The products are well made, exactly as presented, work wonders for me.

Used eye masks last nite and no night eye issues. I'm still using the steroid drops, thank the good Lord for those. This is the first time in years I can see clearly, all the time! with no pain and not much itch or blur or other stuff. I still get double vision when i'm tired. Doctor says now it's caused by weakened muscles – my body and muscles don't get along well.

I take dopamine to help and it gives my legs ability to walk better, lift and don't feel like tree trunks anymore. Dopamine is good stuff for me. I've needed to improve the dopamine level in my brain for a long time, but finally, taking it for RLS, I find it helps tremendously with other muscle/movement/depression/me issues. Love the stuff! Parkinson's is a possibility……

Amazing…back on the eye diagnosis-.sarcoid and everyone missed it even tho I mentioned it to each doc. Sarcoid can blind a person. I thought I was going blind as nothing cleared up for weeks…..just plain scary…..but sight is back and good and I'm better. And, I'll use the Bruder items forever I'm sure. They are truly helpful. Wonder why no other doctor has ever mentioned any of these solutions? I'm thrilled this one did! It has led to good things, especially with the pollen season exploding and I'm covered in yellow! …Blessings, BB22. elizabeth

REPLY
@bustrbrwn22

@ess77. Hi Elizabeth. Is there a Systane gel at night that doesn’t have preservatives or additives? I just looked at what I bought and it has .001% preservative. Thanks

Jump to this post

@bustrbrwn22 Hi, bb22…don't know. Will ck it out as I absolutely goofed on that one. I use the gel drops rarely, but they do help as they're thicker….but may be a good thing I only used a bit since the preservatives…..primarily thimerisol is tough on my eyes. I'll ck online and see….blessings, elizabeth

REPLY
Please sign in or register to post a reply.
  Request Appointment