Announcement

**Hokucat** · 07-Jun-2018, 22:38

Given your condition was brought on by birth control pills and you had cramps, perhaps some type of hormone cream or oral supplement is worth a try. My rheumatologist had offered to prescribe pills for me when I had severe dry eyes and my testosterone level was on the lower side. I also saw a dry eye specialist who prescribed testosterone cream to put around my eyes, but at the time my glands were blocked with scar tissue, so that nor anything else worked. Some Naturopaths who are MDs also prescribe the cream and hormone pills. If you happen to live in Southern California, I can PM the names of these doctors. If you pursue this, make sure your hormone levels are regularly monitored by your doctor.

Sclerals are an important part of managing dryness I have, due to several atrophied glands. If you can tolerate the lenses, it could give you some immediate relief. Some people cannot tolerate the sclerals, but worth it to go to a consult to try them on. They do not solve the underlying cause, but just feeling better is huge. I agree if you have to clean the lenses a few times a day, that's very minor.

If you are able to find a job using the computer less, that's ideal. Staring at electronic devices all day will only worsen your MGD over time.

Several members in this forum have done IPL with no side effects. Perhaps reach out to a few of them. I never did IPL. The main things I did to get better are probing (because many of my glands had scar tissue), healthy diet changes, sclerals, and quitting my computer-intensive, long driving commute job.

Erc, hope you find some thing(s) to help soon. Lol on the peeing comment, good you still have a sense of humor after all this!

**MGD1701** · 08-Jun-2018, 03:50

Hi Erc
looks like you have a good plan. Maybe these would help
1) add tea tree oil products as lid cleanser to kill demodex - most ocular rosacea suffers have demodex

2) lid cleanser with pure HOCL, like Avenova, is effective to control bacteria overgrow without resistance.
Many and more doctors in USA now recommend such cleanser. Very interesting topic.

3) maybe avoid meat?
---------------
Real Manuka Honey: Do you find it help?

**Erc138** · 08-Jun-2018, 05:03

Thank you MGD1701-

I did forget to add, I have been using Avenova and I do have a generic one when I run out. It might help? But it certainly doesn't hurt so I'm going to continue it. I did try the Manuka Honey for a while and I've actually used it on small scraps and such and can attest to its ability to heal, I just think in regards to my eyes it may have worked as an "antibiotic" but did not treat the underlining inflammation. It burned when it got into my eyes, not unbearable, so helped them to water but I wasn't seeing an improvement. So I am switching to metrogel 1% which is a topical gel for rosacea ...I "borrowed" it from my mom. I read one study (from 1996) that there was some improvement after 3 months use. So here I go, I think I've come to feel comfortable being a human test subject. Here's a link to the study- https://www.ncbi.nlm.nih.gov/pubmed/8942885

I actually don't eat meat. I'm a vegetarian but occasionally have eggs and fish very very rarely. I think dairy, alcohol, and sugar are the real things to stay away from...much easier said than done. But since I do believe my eyes are because of hormones I've done a lot of research on things that mimic estrogen (which may be the cause?). oh and avoiding bpa and plastics and such...oh boy.

Anyways I do have tea tree cleanser for my eyes by "we Love eyes" bought it off amazon. Maybe I didn't use it long enough? Do you know how long it takes to see results? Or how often it should be used?

Thank you so much for your response! Much appreciated.

Oh my gosh- Hokucat- I have tried soooo hard to get a doc to prescribe hormone creams but they are all very hesitant due to my age (35 ish) and not having had children yet and being within the "normal" range for hormones. Screw kids, I want healthy eyes. Lol. I'm just kidding. But maybe an endocrinologist? I did read about a hormone specialist in my area, pretty sure she is a naturopath/traditional md BUT it costs about $500 dollars just for a consult.... maybe I need to suck it up. But I spend so much money already on my eyes. It's hard to give money away with no results. I am on the East Coast so unfortunately Southern California is not doable- Thank you though. I feel like I've had some improvement over the past year or so and I honestly just want to be able to do things that don't revolve around managing my dry eye. My fiance hates the phrase " I forgot my eye drops!" as we are headed somewhere because he knows we either have to go back home or head to the nearest pharmacy. Tardiness due to dry eye? Sure.

AND good for you making lifestyle changes ( job and commute) I wonder what kind of job I can get that is not so computer heavy? hmmmm I'll have to think.

Quick question- a sclera lenses prescription? It's actually pretty hard to find a ton of info on sclera.

Thank you so much for your help.

**MGD1701** · 08-Jun-2018, 05:26

TTL cleanser: Cliradex proved to be effective/safe to kill demodex, which contains 4% TTO.
So good to make sure % of the cleanser you use.

IPL seems very effective for people with rosacea and inflammation, what I have read.

BlephEx should be more effective to control inflammation.
Ocusoft has a kit to kill demodex, performed by dr. Maybe you could ask your dr about this.

Iron, zinc: make sure you have enough since you are a vege.

**Guest** · 08-Jun-2018, 06:02

Ok did steroids help you?

How long were you on restasis?

how long did you take fish oil and what brand and at what dose?

how do you do your compress? Meaning, what type of compress do you use and are you checking the heat with some type of thermometer?

As for CBD, I've noticed you need 300-500mg for it to even touch the inflammation. I would change my diet as well, no sugar, ketogenic just for a while to get the inflammation down. I promise you won't have to eat like that forever. Avoid anything that dries or irritates you, computers are huge for me. Even if I consciously blink?, my eyes get dry. Make sure you aren't drying out at night, sleeping with eyes open, that'll ruin your whole next day.

Hope that gets you started on a better path. Answering the questions will help me identify your problems better also.

Edit: just saw you used avenova...it kills demodex eggs but not the actually parasite. So if you use it properly long enough, should help control demodex. If not I'd use cliradex wipes personally. Safer and less irritating than most TTO you'll find.

Im 38 yo male, my testosterone was 60 and the lowest reference was 72. So I had the testosterone of a 65+ yo man. Testosterone is a schedule 3 drug so yes, people are reluctant to prescribe. However if you have bloodwork showing a deficiency, shouldn't be an issue getting the script. Testosterone hasn't cured my issue, I believe once it starts you're just SOL and have to manage it....but it does help a lot. Maintaining the low end of the estrogen and higher end of the testosterone scale will inhibit inflammation.

Also, autologous serum tears have changed my life. If you can find someone to make them, I believe they will give you extreme comfort. At least that's been my experience.

**MGD1701** · 08-Jun-2018, 07:18

Hi Erc
Happen to find this from famous Dr/Prof. Richard Yee website , one of his treatments

Compounded Eye Drops: Spironolactone, Dapsone, and Testosterone

http://www.drrichardyee.com/dry-eye/dry-eye-treatments/

**Guest** · 08-Jun-2018, 07:23

Originally posted by MGD1701 View Post

Hi Erc
Happen to find this from famous Dr/Prof. Richard Yee website , one of his treatments

Compounded Eye Drops: Spironolactone, Dapsone, and Testosterone

http://www.drrichardyee.com/dry-eye/dry-eye-treatments/

If you want my humble opinion here MGD...I don't think drops or creams are as effective as systemic androgen therapy. However, I haven't tried the drops, I believe they're still in phase 2 trials. They may very well work but I feel that injections or at the very least orals/creams are the bestoption at the moment. It's very clear though that hormones play a role in dry eye, the lacrimal and meibomium glands are androgen receptor mediated.

**Erc138** · 08-Jun-2018, 09:32

Dowork123- Thanks for the response

To answer your questions-

Ok did steroids help you?- They may have helped stem inflammation but I really didn't feel a huge improvement with them. Doc said my eyes looked better but I didn't feel it.

How long were you on restasis? I was on restasis for 4 months, doc said if I didn't have an improvement by then to go off, I've since seen info that says you have to be on it a year? I'm still on Xiidra.

how long did you take fish oil and what brand and at what dose?- I took nordic natural, 2 capsules twice a day for a year, And I've recently seen this study- https://www.nih.gov/news-events/news...lacebo-dry-eye

But I've tried algae oil, flaxseed oil and sea buckthorn oil in addition

how do you do your compress? Meaning, what type of compress do you use and are you checking the heat with some type of thermometer? I actually have to be very careful about heat compresses, my lids can get very inflamed and this can exacerbate symptoms for me. I have just used a warm shower and warm water when washing my face. Heat and massage causes me a lot of discomfort if done too regularly. I know it works for some but not for others.

As for CBD, I've noticed you need 300-500mg for it to even touch the inflammation. I would change my diet as well, no sugar, ketogenic just for a while to get the inflammation down. I promise you won't have to eat like that forever. Avoid anything that dries or irritates you, computers are huge for me. Even if I consciously blink?, my eyes get dry. Make sure you aren't drying out at night, sleeping with eyes open, that'll ruin your whole next day.- I'm open to trying different diets, I don't think keto is for me since I don't eat meat BUT I've thought about doing a modified diet of reducing inflammatory foods. I'm trying the CBD, we'll see I don't think it can hurt at this point, I purchased from a source I think is pretty transparent.

Edit: just saw you used avenova...it kills demodex eggs but not the actually parasite. So if you use it properly long enough, should help control demodex. If not I'd use cliradex wipes personally. Safer and less irritating than most TTO you'll find. - I'll look into that thank you.

Im 38 yo male, my testosterone was 60 and the lowest reference was 72. So I had the testosterone of a 65+ yo man. Testosterone is a schedule 3 drug so yes, people are reluctant to prescribe. However if you have bloodwork showing a deficiency, shouldn't be an issue getting the script. Testosterone hasn't cured my issue, I believe once it starts you're just SOL and have to manage it....but it does help a lot. Maintaining the low end of the estrogen and higher end of the testosterone scale will inhibit inflammation. think it's progesterone with estrogen spiking (so hopefully increasing my testosterone would convert some estrogen to testosterone.) A couple of studies have shown that testosterone cream is only beneficial for menopausal women and progesterone cream works better for women with dry eye who are not menopausal. ugh so much to try to figure out.

Also, autologous serum tears have changed my life. If you can find someone to make them, I believe they will give you extreme comfort. At least that's been my experience. - THANK YOU! that gives me hope. I actually asked about this and the medical office said they don't make this for people with my condition. Finding the right care and a doctor to help is so difficult. Maybe I'll try again. My grandmother actually has them for an unrelated condition.

Thanks again for the information, I really appreciate it.

**Erc138** · 08-Jun-2018, 09:36

MDG1701- I do have zinc and iron supplements, I don't take them very religiously- I'll add them to the list! AND thank you for the additional info on Dr. Yee and what he suggests- I bookmarked his website.

**sophie0416** · 08-Jun-2018, 10:05

OMG! this is my story! this happened to me too!!!!!! I'm sure you've read my post around this forum (If not I recommend you to do it!) I swear we're in the same situation! It all started with my birthcontrol, my doctor told me to stop it but I never went back to be the same!!!!!! this is sooooo soooo sad!!!!! /......

**Guest** · 08-Jun-2018, 10:49

Ok so I'll start with the placebo study, the placebo was olive oil. Which is a healthy omega 3 containing oil. So what the study says to me is, you can consume any healthy oil, but you need to consume a lot of healthy oils....macadamia nut, avocado, olive, fish, etc. good call on the Nordic naturals, I take 10g a day of their liquid formula.

Ok, I had issues with warm compress too...however once I did hem correctly, and controlled my inflammation, they finally worked really well. So how did I do that...first I was on alrex, steroid, to reduce inflammation. Then I bought a bruder hot compress and started measuring the temp of the eye pads with a laser thermometer. I apply the compress when it reads 45-46C and after it cools, about 5 mins, I reheat and do it again, then I express my glands by pressing on my lids, then avenova to clear the crud...then serum drops to wash away the bad oil/bacteria from my eye. After a month I was so much better it was insane. Once you unclog the glands you'll feel a lot better, less congested in the lids. This is the most important thing I do for my eyes.

Get the serum if you can afford it, call drs and ask what they offer. My dr does them in house for me, in and out in 35 minutes.

Yes, for younger women progesterone could be the issue. Hormones are a balancing act. I could have great test levels but if my estrogen spikes, I feel like crap.

i won't tell you how to eat but that's a huge factor. You can do keto andbe vegetarian I believe...it's just harder of course. But limiting carbohydrates and clearly processed sugars was huge for me.

Im still struggling with this myself. All my issues started about 7 months ago. I have been suicidal because of the pain. But I'm finding better ways to manage, so I know you can get better. It's hard to have hope when you're in such pain, but I genuinely believe you can find a routine that suits you and makes you feel
better. Please keep us updated with your progress.

**Erc138** · 08-Jun-2018, 11:57

sophie0416- It is the worst but it does make me feel better that someone else can relate to this. Have you found anything that has helped you? Have you ever tried another BC to see if taht could help reverse? I'm nervous to go down that route again.I really wish I could go back in time and never taken BC but such is life. I do feel pretty determined to get to a new normal that I can live with.
My new dry eye mantra is " even though you're fed up you gotta keep your head up" -Tupac

Dowork123- Thank you. I will certainly try the hot compresses, I'm actually able to express my glands without heating (of course I don't have quality oils) DO you think the heat is necessary? Anyways I like how precise your information is, I will try it- How often do you do that?

I rememberhaving to take a day off from work and I was sitting on my couch all day with ice packs on my eyes because they burned so bad thinking, "I can't do this, if this is how everyday is going to be, I can't." I have improved a good amount since then but life has yet to be the same. But now I have faith things will continue to improve and all of the info I've gotten on here in such a short amount of time has been so helpful and hopeful.

**Guest** · 08-Jun-2018, 14:01

That makes me happy to hear you're better and hopeful.

i do my compress twice a day. At first, I was going wayyyyy too hot. Was making my inflammation worse. So I had the laser thermometer and decided to check the temp. I saw a video by David kading on warm compress and just tried to replicate lipiflow as best I could. So lipiflow heats the back of the lid to 40C for 12 minutes. With a hot compress, you need to be at 45C to get past the musculature and vasculature of the lid to get the back of it to 40C. So I hear my compress and apply it to my eye around 45-46C and leave it for 3-5 mins. Then I express my glands as I'm hearing the pad again...rinse and repeat. Then I clean with avenova.

So do I think the heat is necessary?....absolutely, especially for thick meibum. It's like butter, you need to melt it then press out that garbage so the healthy oils you're eating can fill the space. Then, you should flush your eyes out after the compress. You can do this before or after avenova. But again, you just melted a bunch of crap into your eyes, wash that out. I genuinely think it will help...but you can't guess, gotta be precise. No lie, I use 22 seconds on my microwave, the temp on the mask can range from 47C to 58C so it's very important you get a laser thermometer and not guess...if you burn your eyes you'll just make things worse which may be why you didn't like them. You may also need a steroid just so you can tolerate the compress..then once things clear up, you won't need it again hopefully.

Just my experience and and I hope it helps.

**Hokucat** · 08-Jun-2018, 15:41

Hi erc. Regarding your question on a scleral prescription....one of your eye or medical doctors usually refers you to a scleral fitter, or you might contact the fitter to see if a referral is needed. There are local optometrists who started fitting sclerals as part of their practice, but the experience and expertise of the fitter is so critical in your success being able to wear sclerals, would stick with a reputable scleral specialist.

When you go for the consult, they usually have you try on the lenses to see if you can tolerate them, and if it gives you some relief. If it does, they check your vision and can make the lenses with your prescription. Some top brands and associated specialists Rebecca mentions and where several members in the forum have had success are Boston PROSE, EyePrintPro, and LaserFit.

I went with PROSE because the specialist was local, my medical insurance covered the majority of costs, the PROSE folks did all the paperwork directly with my insurer, and my fitter was so skilled, she got the right fit first try. Often one has to go through at least a few different lenses to get the right fit and comfort. There are several PROSE clinics on the East Coast, so would be convenient for you to go for a consult. The doctor referral form is on their website, along with all the clinic locations/contact info, good descriptions of sclerals, etc.:

http://www.bostonsight.org/PROSE/PRO...atment-Process

EyePrintPro and LaserFit make custom lenses for the shape of each individual's eyes. I have no personal experience with these two, but many people in this forum have had great success. EyePrintPro has many locations. For LaserFit you would have to travel to Texas.

https://www.eyeprintpro.com/patient/

https://laserfitlens.com/

Hopefully this will give you enough info on sclerals to start with.

Announcement

Dry Eye- 1.5 years of dealing with this. So this is my life now?

Dry Eye- 1.5 years of dealing with this. So this is my life now?

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment

Comment