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?

@lioness

@lacy2 I have used vitamin drops from India I found that when I used them I didn't have to use as many times before I put drops in about 4-5 times a day but with using drops and Dr put me on AREDSfor my M.D. I use maybe I 1-2 times a day here it also depends on the weather

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@lioness hi oh I never thought about the weather… our homes in winter heated inside and windows closed the air is dry but i have tried various humidifiers then read they are supposed to be cleaned out with bleach every couple of weeks etc., as get mold in …same as Brita water jugs! some days just cant do it… i have been closing my bedroom door and opening window a crack and its about 16C in here … i think i saw something on internet about their implanting a little something or other under the lower lid to secrete moisture into eyes but I would hazard a guess its not too simple to have done. Wonder for how many centuries humans have suffered from dry eyes or is it a recent thing…. oh well, give me something to look up on internet today! Like you, having glaucoma , and am not sure but I also have floaters, would be nice to find something that works 100 per cent eh? Even my migraines are ocular and I have flashing lights about 20 minutes before, but for past 20 years not the pounding headache so have to be grateful for small mercies! Thing is last four migraines during recovery my memory is going regarding names of things and its a bit of a worry. On and on it goes….. and reading of what a lot of people here are living through I don't know how they get by…. am afraid I haven't coped well the last 3 years. Anniversary today – 59 years in Canada from uk when i was 18 !! Love Canada and my Canadian children but……. (fill in the gap) Take care everyone…. J. snow's almost gone… yeah!!

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@sue225

@lacy2 My very dry eyes seem to prefer the ingredient "hydroxypropyl methylcellulose. The first drop I ever used all those many years ago (1976!) was IsoptoTears 1% by Alcon. (No longer around). Today, I use Refresh Celluvisc (preservatives free) which is the same ingredient. I believe your Hylo is probably hyaluronic acid or similar which I have not had luck with.

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hi @sue225 When you say had no luck with hylo, was it because it didnt last very long giving relief? i find it doesnt coat my eyeballs like some others drops,but then again systane ultra makes my eyes feel sticky ;; i have learned one small thing after all these years, i was splashing the drops into eyes but not then carefully closing and wiping dropsoff eye lashes and i think the drops were sticking on my eyelashes/// not that i have many eyelashes left… but i am always nervous of introducint bacteria or germs when washing/wiping my eyes so i boiled and cooled some water and put 1/4 tsp salt in and dipped in one of those little round makeup pads and wiped my eyes… but didn't experiment long enough before tooth out and had a different cup water/salt to rinse my mouth; its like a mini hospital in my bedroom! I am going to give Refresh Celluvsic another try then……J. ps. it seems each new drop works for a bit then the eyes say; UH UH, nope, not doing it!!!

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@lacy2

@lioness hi oh I never thought about the weather… our homes in winter heated inside and windows closed the air is dry but i have tried various humidifiers then read they are supposed to be cleaned out with bleach every couple of weeks etc., as get mold in …same as Brita water jugs! some days just cant do it… i have been closing my bedroom door and opening window a crack and its about 16C in here … i think i saw something on internet about their implanting a little something or other under the lower lid to secrete moisture into eyes but I would hazard a guess its not too simple to have done. Wonder for how many centuries humans have suffered from dry eyes or is it a recent thing…. oh well, give me something to look up on internet today! Like you, having glaucoma , and am not sure but I also have floaters, would be nice to find something that works 100 per cent eh? Even my migraines are ocular and I have flashing lights about 20 minutes before, but for past 20 years not the pounding headache so have to be grateful for small mercies! Thing is last four migraines during recovery my memory is going regarding names of things and its a bit of a worry. On and on it goes….. and reading of what a lot of people here are living through I don't know how they get by…. am afraid I haven't coped well the last 3 years. Anniversary today – 59 years in Canada from uk when i was 18 !! Love Canada and my Canadian children but……. (fill in the gap) Take care everyone…. J. snow's almost gone… yeah!!

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@lacy2 I use Ointment at night There are alot from diff co.but I like Gen teal eye ointment I keep a window cracked open at night Fresh air is important since houses are closed up during winter What does Dr say about your ocular migraines? Have you seen your opthalmologist and a neurologist? I googled and saw certain foods can add to these headaches I'm sure you have googled about ocular migraine the article I read said to see a neurologist also Your to young to have these problems Bless you do the best you can

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I have had Sjogren's for most of my life but was diagnosed 30 years ago. My dentist said to only use Biotene toothpaste as it doesn't have the drying ingredient that other toothpastes have. It has saved my teeth. I get frequent canker sores and put the Biotene gel on the sores and they go away within a few days. Since it has given me a dry cough, I use the Biotene mouth spray. That really helps at night too when my mouth and throat get really dry. My favorite eye products are Genteal for severe dry eye- (I use that at night or in dry places like hospitals), and all of the Systane products. The above items are all over the counter and there are usually coupons available. I also use Restasis twice a day and have tear duct plugs. With Sjogren's you are prone to have blepheritis which can be really serious if not taken care of. It's bacteria that builds up on the eyelids. So I us OCuSoft Original lid scrubs twice a day. Be careful of the ones that last all day as they burned my eyes. I do warm compresses at least 4 times a day. The "cosmetic" rounds are perfect for compresses and are 100 for $1.49. If your parotid glands get blocked, you should use a heating pad for 20 minutes and massage from the ear down. I used to be a phone counselor for the Sjogren's Foundation and the above items seemed to work. Of course if you find something better, use it. I am taking CBD/THC for the joint pain. Since you are new to Sjogren's , it can be a scary diagnosis. But I am 76 and still going strong. The maintenance is a pain but it works. I will try to answer any questions you may have. Good luck and wear a mask all the time. Joan

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@lacy2

hi @sue225 When you say had no luck with hylo, was it because it didnt last very long giving relief? i find it doesnt coat my eyeballs like some others drops,but then again systane ultra makes my eyes feel sticky ;; i have learned one small thing after all these years, i was splashing the drops into eyes but not then carefully closing and wiping dropsoff eye lashes and i think the drops were sticking on my eyelashes/// not that i have many eyelashes left… but i am always nervous of introducint bacteria or germs when washing/wiping my eyes so i boiled and cooled some water and put 1/4 tsp salt in and dipped in one of those little round makeup pads and wiped my eyes… but didn't experiment long enough before tooth out and had a different cup water/salt to rinse my mouth; its like a mini hospital in my bedroom! I am going to give Refresh Celluvsic another try then……J. ps. it seems each new drop works for a bit then the eyes say; UH UH, nope, not doing it!!!

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@lacy2 It was some time ago that I tried that drop (around the year it first became available). It just didn't alleviate the dryness to the same degree as the Refresh Celluvisc (which has the 1% hydroxypropyl methylcellulose). It was just not as effective for me.

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@lacy2

…hello, always interested in dry eye drops .. had condition i think 20yeas (how have glaucoma and some other issues) Am in Ontario and think over the years I have tried just about every over the counter drop, starting with those with preservatives and last five years or so, no preservatives, single dose but are a bit costly. I have never tried prescription dry eye drops but have prescription Glaucoma drops and even those have side effects. I am interested in a drop with oil…. but what I really neglected to do was really find out the cause…. as there are a few reasons like not producing enough tears, or tears evaporating etc. and the optometrist was just starting to check the little oil producing or tear producing of eyes when it was found i i had glaucoma then i got other illnesses and "REASON" for the dry eyes got left in the dust. Sometimes my eyes feel like they have been boiled in oil from all the chemicals in eyedrops … it must be a multi million dollar business these days; daughters have them now from computer work all day. Right now am using one bought in Canada but made in German and they have a whole line of products, just over the counter; Candor Vision HYLO . it is expensive and last 6 months but very hard to put in eyes with a plunger type applicator so have to be careful. I am not suggesting anyone buy it, but many countries are trying to find dry eye solutions. The idea of a drop having oil in appeals to me… so hope to read some good news…thanks for sharing your results etc. June

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Genteal for severe dry eye is over the counter and really helps me.

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@lioness

@lacy2 I use Ointment at night There are alot from diff co.but I like Gen teal eye ointment I keep a window cracked open at night Fresh air is important since houses are closed up during winter What does Dr say about your ocular migraines? Have you seen your opthalmologist and a neurologist? I googled and saw certain foods can add to these headaches I'm sure you have googled about ocular migraine the article I read said to see a neurologist also Your to young to have these problems Bless you do the best you can

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Thanks for the great information. I too have chronic blepharitis and use the oculus pads. I'll check for the General.

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@lioness

@lacy2 I use Ointment at night There are alot from diff co.but I like Gen teal eye ointment I keep a window cracked open at night Fresh air is important since houses are closed up during winter What does Dr say about your ocular migraines? Have you seen your opthalmologist and a neurologist? I googled and saw certain foods can add to these headaches I'm sure you have googled about ocular migraine the article I read said to see a neurologist also Your to young to have these problems Bless you do the best you can

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hi all, h @lioness; Thanks. It was odd, had teleconference with neurologist, out of town, as office closed, and only seen him a couple of times since getting p.n. 2016 from meds…. I had some flareups during last few months, thats why clinic dr referred me back to him. That was march 16 he thinks Essential Tremour (internal) and it was coincidence that then had another ocular migraine march 23rd 6am… but forgot to tell neurologist about getting forgetful after the migraines…. not all the time – anyway, daughter phoned him that day and receptionist said as its a different reason from original referral (p.n.) I will have to get a new referral. I dont have family dr so will have to contact clinic again and wait.

I think I already mentioned I had 2 x occular migraines that morning and when after waiting months, the ENT phoned (my daugher had phoned from her house to cancel as i was ill) …he yelled at me for almost the whole 10 minutes … said he has so many urgent cases to deal with, and that i wasn't listening to him…. could i breath, could i smell….and said well 35 years ago you had tmj etc. etc. I put phone on speaker so husband could hear, it was awful.
I was at dentist yesterday to get a small piece of bone taken out left when they took out tooth last week and told him about being yelled at…. oh yes he said Dr.Prinja has a bad temper! I am not stupid i know ent is very busy with more urgent cases but just wanted some professional help with the ear pain, echo, fullness etc. I was referred there by a doctor, get mad at the doctor for referring me then!!!
And, the sharp piece of bone sticking out of the hole in my gum is attached to the bone so dentist nipped off a tiny piece but said the gum will grow over the rest, but to go back if bother me…… help !!!! just kidding, could be worse! If i could get some energy and my nerves back in shape and out of this bedroom a bit more …… but no where to go anyway! Thanks for caring especially when you have so many issues to deal with lioness, and everyone

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@jmb73

Genteal for severe dry eye is over the counter and really helps me.

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..thanks i have a list somewhere of drops i tried and why i stopped, of course cant find it now, but am going to try the celluvisc.. i think i did years ago…. so many years have passed and my body has gone to pot…. i think overall general health of eyes sometimes plays a part whether or not the dry eye drops help, not sure… its a merry go round for me.

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@jmb73

I have had Sjogren's for most of my life but was diagnosed 30 years ago. My dentist said to only use Biotene toothpaste as it doesn't have the drying ingredient that other toothpastes have. It has saved my teeth. I get frequent canker sores and put the Biotene gel on the sores and they go away within a few days. Since it has given me a dry cough, I use the Biotene mouth spray. That really helps at night too when my mouth and throat get really dry. My favorite eye products are Genteal for severe dry eye- (I use that at night or in dry places like hospitals), and all of the Systane products. The above items are all over the counter and there are usually coupons available. I also use Restasis twice a day and have tear duct plugs. With Sjogren's you are prone to have blepheritis which can be really serious if not taken care of. It's bacteria that builds up on the eyelids. So I us OCuSoft Original lid scrubs twice a day. Be careful of the ones that last all day as they burned my eyes. I do warm compresses at least 4 times a day. The "cosmetic" rounds are perfect for compresses and are 100 for $1.49. If your parotid glands get blocked, you should use a heating pad for 20 minutes and massage from the ear down. I used to be a phone counselor for the Sjogren's Foundation and the above items seemed to work. Of course if you find something better, use it. I am taking CBD/THC for the joint pain. Since you are new to Sjogren's , it can be a scary diagnosis. But I am 76 and still going strong. The maintenance is a pain but it works. I will try to answer any questions you may have. Good luck and wear a mask all the time. Joan

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Joan, thanks so much for your input, all new info is valuable; I’m glad you’re still “going strong”, that’s my goal! ☺️ Helen

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.. i think different things work differently because could be different 'reason' for dry eyes and some conditions like my daughters on computers, a quick few drops through the day… but long term and tears not being produced or evaporating too quickly… i had an appointment with dept. head dealing with dry eyes at on of Toronto's teaching hospitals the year i was diagnozed down there with glaucoma, but got cdiff and had to cancel and not been able to travel since, well can manage the 4 hour drive its the fecal incontinence etc. etc. etc. etc. and finding a room during covid …but honestly i would suggest to anyone starting the dry eye route to see someone who deals with it , reputable and not just selling a fix, and find out 'WHY' and take it from there, i have used and spent hundred and hundreds on eye drops that may not have even been suitable but i must admit have never tried prescription dry eye drops… maybe thats been my mistake. if i sound grumpy its been a couple of 'more than usual' weeks and just having a pity party for myself. take care everyne…

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@lacy2

..thanks i have a list somewhere of drops i tried and why i stopped, of course cant find it now, but am going to try the celluvisc.. i think i did years ago…. so many years have passed and my body has gone to pot…. i think overall general health of eyes sometimes plays a part whether or not the dry eye drops help, not sure… its a merry go round for me.

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One recommendation from my ophthalmologist that definitely works, is to wear swim goggles at night! I was amazed at how much moisture builds up inside the goggles. I may go back to doing that.

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