Author Topic: new here and looking for help with my dry eyes  (Read 816 times)

kelka

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new here and looking for help with my dry eyes
« on: January 03, 2019, 05:15:28 PM »
hey everyone! i'm new here and still awaiting diagnosis for sjogrens, i hope i can find some relief here and help cause from all this my anxienty and depression got really bad :/ my most worries at the moment are my dry eyes and dry mouth. I'm just really worried to lose my vision and getting blurry eyes even though i don't know how severe my dry eyes are but i can't let it go and can't find relief.When i first got problems with my eyes i went to the eye doctor many times and he justthought it was a infection and gave me cortisone drops many times untill he did that test for dry eyes and said i had dry eyes.

 so far hasn't really helped me  much he tried putting temporary plugs in my bottom ducts but didn't really feel a diffrence.. also went to a eye doctor in the hospital but she didn't really seem good cause she was jsut saying i didn't have dry eyes and gave me more cortisone drops wich ofcourse didn't help.. it's really frustrating and i feel over here where i live in Belgium they don't have as much options as other countries. i'm seeing a dry eye specialist next week hoping he can help me. i've been reading about castor oil being able to help with dry eyes but i'm worried about it honestly, just wondering if someone tried it yet and if it helps and recommend a brand? i'm also trying aip diet atm wich is hard cause i miss my junkfood but i gotta keep strong. Also i'm taking PRN fish oil capsules and GLA borage capsules for my omega 3 and omega 6.

happylife

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Re: new here and looking for help with my dry eyes
« Reply #1 on: January 03, 2019, 07:55:09 PM »
Hey Kelly

Sorry to hear that.

What is your schirmer eye test scores?

What is RPS inflammadry eye score?

What is your ocular stain score?

Please get these tests done..... This will very clearly tell the dryness status?

What is your unstimulated whole salivary flow @ morning 7am and 11am. (Just do Google search. You can do this test at home)

If it is proven to be inflammatory dry eyes, restasis is a standard medication and this will provide significant relief in 2 months.

Please don't try castor oil kind of solution until the above tests are done.

Happylife.

« Last Edit: January 03, 2019, 07:57:24 PM by happylife »

araminta

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Re: new here and looking for help with my dry eyes
« Reply #2 on: January 04, 2019, 07:22:28 AM »
Welcome to the forum, Kelka.   I'm sorry you're having all this worry.

I was told my Schirmer test was normal, however an ophthalmolgist told me I had dry eyes because of meibomian gland dysfunction.   I have some quite good eye drops (HyloForte), and I use Lacrilube at night.   I do also sometimes use organic castor oil in my eyes at night, I mentioned this to the ophthalmogist and she didn't seem concerned.   However it's best you get a proper diagnosis.   I hope the specialist can help.

I also had blepharitis when all my symptoms started, and for that I found that very diluted tea tree oil worked wonders. 
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

kelka

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Re: new here and looking for help with my dry eyes
« Reply #3 on: January 04, 2019, 04:08:27 PM »
@happylife my eye doctor never told me the score of the schirmertest, i should ask him about this next time also he never mentioned any other tests whatsoever how do i go about asking this? i feel like he doesn't really care to much or explain a lot to me...

i tried to google about the unstimulated whole salivary flow test but i can't really seem to find much about it?

@araminta i tried many eye drops also hyloforte i use hylo gel for at night an't really seem to find any relief from it honestly it's really bringing me down, also my family doesn't really show any sympathy and just think i am going crazy :( i really hope the specialist can help me.. i was thinking of scleral lenses might be helpfull maybe if that's an option at least, guess i'll hopefully find out more soon.

thanks for the help it's really apreciated

markt

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Re: new here and looking for help with my dry eyes
« Reply #4 on: January 04, 2019, 06:18:25 PM »
Bandage contact lenses; they are life savers for me when it comes to dry eye.  You have to use regular preservatives free drops to keep them moisturized/satiated... but the really protect your cornea / conjunctiva from damage and mechanical irritation  (blinking).  I still use restasis 2X daily and put them in.  They are a bit easier to manage than the prose/scleral lenses.  Once diagnosed; I highly suggest you enroll in the Lacriprep clinical trial...I was part of that, my poor eyes really looking forward to the day its commercially available!


kelka

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Re: new here and looking for help with my dry eyes
« Reply #5 on: January 04, 2019, 09:05:54 PM »
@markt thanks! i'll ask about them next time i visit my eye doctor sadly i live in Belgium so i am not able to enroll for lacriprep trials, i read about it and it sound really promising and i contacted them on facebook asking how long it would take for it to be released and it could be a few years so that sucks especially before they get released over here might be even longer, did you find using lacriprep helped a lot?

 also is it normal that my eyes don't really sting superbad all the time but i feel like this dull pain in my eyes?
guess it might be because of the dryness.

happylife

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Re: new here and looking for help with my dry eyes
« Reply #6 on: January 04, 2019, 09:22:42 PM »
@happylife my eye doctor never told me the score of the schirmertest, i should ask him about this next time also he never mentioned any other tests whatsoever how do i go about asking this? i feel like he doesn't really care to much or explain a lot to me...

i tried to google about the unstimulated whole salivary flow test but i can't really seem to find much about it?

@araminta i tried many eye drops also hyloforte i use hylo gel for at night an't really seem to find any relief from it honestly it's really bringing me down, also my family doesn't really show any sympathy and just think i am going crazy :( i really hope the specialist can help me.. i was thinking of scleral lenses might be helpfull maybe if that's an option at least, guess i'll hopefully find out more soon.

thanks for the help it's really apreciated


Please visit this page to see the instructions for unstimulated whole salivary flow test at home.


https://www.mah.se/fakulteter-och-omraden/Odontologiska-fakulteten/Avdelning-och-kansli/Cariologi/Cariology/Caries-risk-assessment/Diagnostics---Dental-Care/Test-for-Saliva-Secretion-Rate/

Maria3667

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Re: new here and looking for help with my dry eyes
« Reply #7 on: January 05, 2019, 04:21:14 AM »
Hi Kelka,

I'm in The Netherlands so might be able to give you some useful tips.

As you've probably discovered, we don't have Restasis here, but a few weeks ago I was able to get generic cyclosporine eye drops from my local pharmacy (prescribed by opthalmologist).

Also, I've tried castor oil drops from 'Holland & Barrett' (do you have them, used to be called 'De Tuinen'). It does relieve burning - problem is can't use during day because make up will become runny...

Other cheap & effective option: Tea Tree oil (from same store). Dilute 1 drop in at least 20 drops (I use 50) of water. Massage eyelids close to eye lashes 2x daily with q-tip (wattenstaafje). Does sting a little, but quickly improved my blepharitis, so it's worth it.

To increase eye moisture: try rubbing progesterone cream on eyelids 2x daily (maybe 4x in beginning). For me this is most effective option so far. Positive side effect: also increases saliva flow (and mental well-being, never knew!). Cortisone may kill the infection, but increases dryness for me.

Feel free to PM me if you have more questions!

Sterkte!
51. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('03), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis ('18), frozen shoulder ('19). Meds: pilocarpine, T3&T4, 25mg quetiapine, low dose testosterone & progesterone. Allergies: nickle, methylisothiazolinone, latex

bluegardenia

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Re: new here and looking for help with my dry eyes
« Reply #8 on: January 08, 2019, 05:39:10 PM »
i made the test for the salivary flow and I'm scared... I produced 5 ml of a thick foam. thats it.
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Morticia91

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Re: new here and looking for help with my dry eyes
« Reply #9 on: January 16, 2019, 11:00:33 PM »
My ophthalmologist was the one who diagnosed me. He spotted that I have corneal abrasions and dry eye, and recommended the AN1 blood test.

A couple of over the counter products that have helped me are the Occusoft eyelash scrubs (for getting rid of the eye gunk and preventing infections) and Refresh Celluvisc. The Celluvisc is a thick eye drop. It's not as thick as some of the gel stuff you might use at night, but it's thicker than Visene.

Permanent punctal plugs and omega 3 supplements seem to be helping me too.

You can also sit with a warm wet washcloth on your eyes for about 20 minutes at a stretch. That gives some relief.
Since SS also causes blepharitis, you can also check this video: https://www.youtube.com/watch?v=vn8JPBNXnac.

One other thing to note is that SS can kick any allergies into high gear, so if you're allergic/sensitive to things like sulfites or glycerin (like I am), some products can irritate your eyes all to heck. TELL YOUR DOCTOR AND OPHTHALMOLOGIST EVERYTHING. If you get any prescriptions, double and triple check with the pharmacist about the ingredients.

Hope this helps.


Joe S.

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Re: new here and looking for help with my dry eyes
« Reply #10 on: January 16, 2019, 11:45:26 PM »
To the new forum members, welcome. I am sorry to hear that you have this disease. I use vitamins and minerals to treat. D3 and Omega-3 are helpful. I take a lot of omega-3 to lower cholesterol. It does help with other things. I take 2000 units of D3 daily.

For Sjogren's I take Acetyl-L-Carnitine and R-Lipoic Acid. to repair mitochondria DNA damage and remove the debris from the repair.

I had bad reactions to the traditional medicine treatments.
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janny

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Re: new here and looking for help with my dry eyes
« Reply #11 on: January 17, 2019, 09:46:47 AM »
I am so sorry to hear of your anxiety with this. I well remember when I initially got this and suffered so much with my eyes! All I can do is give you what has given me my "eye life" back. I finally had my ophthamologist permanently close my bottom tear ducts and I also have plugs in the top ones. I take fish oil everyday and do notice if I skip a couple days, so I would recommend that. When I get stressed, my eyes will still get very dry in the evening and I ordered some glasses with foam around them to wear at home (they are essentially prescription goggles) from a company with "7" in the name (I don't believe we are allowed to give brands--sorry--you can PM me if you need to) that are lifesavers. I did try the Restasis for a long while in the beginning and unfortunately, I had no luck with it! Everyone is different, though. Please try not to be too anxious over this (I know, easier said than done!) as this, as least for me, exacerbates everything. You will find some things that work for you, I promise. God Bless You!

Deseree

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Re: new here and looking for help with my dry eyes
« Reply #12 on: January 18, 2019, 09:41:43 PM »
Sorry about your dry eyes, I know how painful that can be! I have heard of a product called "Lacriserts" that is basically like xylimelts for your eyes. They are small thin discs that you place under your eyelids and they dissolve over a few hours. I haven't had dry eyes bad enough to need these, but I will certainly try them if mine ever get worse!
30 year old female. Mildly positive ANA and RF. Positive markers on Early Sjogren's blood test. Negative Ss-A/Ss-B. Dry mouth, nose, throat, and eyes. Currently taking generic Evoxac.

kelka

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Re: new here and looking for help with my dry eyes
« Reply #13 on: January 19, 2019, 03:48:35 PM »
thanks everyone for the help and the kind words!, still awaiting my appointment for the rheumatologist in the end of february, feels like it takes forever.. i went to a dry eye  specialist and checked me and said i had dry eyes and dry wounds in my eyes( one eye was 8 and the other was 4 on the schirmer test he gave me this product called evotears eye drops wich puts like a film over my eyes to protect them and i have to use them together with eye drop gels and also ointment for at night, so far not really noticing much improvement it seems i still got bad vision on distances or maybe i'm focussing to much on it anyway can the blurry vision or bad vision be helped along the way or am i screwed? that's liek probably my biggest worry cause atm i can deal with the discomfort it brings. next week thursday i am supposed to get back to the dry eye specialist and he said he's gonna take his time and check everything properly and i'm gonna ask him about some stuff see if he knows about restasis and so on. he really seems passionate about helping people with dry eyes so i feel i am in safe hands with him at least. also i wanna add i still am trying the aip diet but don't notice much diffrence so far, i have cheated  though cause it's been hard for me just wanna eat comfort food to feel happier... just bought a blender though so might make it a bit eassier for me now. did anyone else try aip diet? i don't really wanna give up all the stuff i can't eat with it and since i'm still not 100% sure i got sjogrensit's been a battle so far.
hope all goes well for everyone else!
« Last Edit: January 19, 2019, 03:58:55 PM by kelka »