I have dry eyes due to sjogren's syndrome. Does anyone else deal with dry eyes?
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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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Thanks for the great information. I too have chronic blepharitis and use the oculus pads. I'll check for the General.
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
Genteal for severe dry eye is over the counter and really helps me.
..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.
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
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
.. 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…
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.
a humidifier near my bed seems to help, swim goggles sounds like a good idea but seems like they would be too uncomfortable. Helen
oh years ago it was suggested by someone somewhere to wear goggles, glad it works for you sue. i just remembered couple years ago optometrist sold me sort of eye mask with little pads that warmed up as opened and you slipped into the mask. but specialist in Toronto said no because at the time had narrow angle glaucoma and was concrned about the elastic band around eyes; so year ago i had IRIDOTOMY to release pressure in eyes but now dont know if i can wear that heated mask or not…hoenstly i have so many irons in the fire right now i dont know if i am coming or going and all drs ssooo busy re covid restrictions and i am in City of just of 50,000 with line up at door of all medical…also the optometrist got fed up with me and passed me back to his partner and i didnt have the guts to ask why! nice guys finish last , or so they say!
@lacy2 I don't blame you for having a "pity-party". Hope you recover from the c-difficile soon. My friend's daughter was quite seriously ill with that. On top of that, we are still in the midst of this pandemic.
I had no luck with Restasis. It caused lots of burning and stinging for me and it takes several months until you know whether its effective or not. I did fill a script for Xiidra, (expensive), and it sits in a cabinet. Reluctant to use it. It takes a couple of weeks using it to know whether it will work.
Thankful that, so far, I only have the dry eye.
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