Not sure what to try next & who to see :(

[Betsy]

I have tried all the conventional treatments and also tried serum drops. I had lipiflow on one eye. The LF eye now hurts more. Both eyes hurt constantly there is never a break. I don't know what to try next. I wanted to try cautery because it helped my mom. But keep hearing if i have inflammation that would make things worse. Do we not all have inflammation ? How do I know how much inflammation I have? I take restasis, used steroid drops (didn't help at all, plus the BAK ugh), omega 3, NAC, ALC etc...the lipiflow optometrist feels that my right eye hurts due to the blockage (thus recommending it for that one eye only) but guesses the left hurts due to inflammation, but she didn't know other than process of elimination.

So I don't know what my next step is to help myself. Do I try IPL? Probing? cautery? tear drain irrigation? If I ask someone doctor or patient, they naturally tell me one thing is vastly superior and nothing else works but that is what worked for that patient or what the doctor likes for whatever reason. I need a doctor who offers various things and can tell what most likely will work for me...

So Dr. Dieter in MN uses various drops; angrogen, amniotic fluid (not membrane), preservative free steroid etc....

Dr. Yee in Houston uses many drops, drops he developed, but they don't disclose details of them as they are new but he is happy with them I think.

Then there are IPL clinics in Cali I could fly to. But they require a few treatments.

Probing ins't easy to find and ****** is very far and expensive for me.

Scleral lenses are expensive though I hope my insurance would pay some, but if they only pay for one fitting and it takes more to get the right fit, how much does that end up costing people?

The wrap around glasses are tricky because my prescription is so high -6 that they would be heavy and I have troubles getting use to new glasses, sometimes I don't even, due to dizziness issues I have, I am very sensitive, so if they don't work I am out that money and if they do, they will be heavy on my bridge which is very thin unfortunately but if they worked I'd probably feel better.

I did a goggle humidity test though and think I may have nerve damage because the humidity didn't make my eyes feel better enough.

I am scared to do nothing and scared to try things. I don't want to mess up my eyes more, I barely function at all anymore, just going to work and back. I don't know what treatment I need.I don't know who to trust. I can't believe something like lipiflow could make things worse, it seems like such a non invasive procedure. Someone said it can cause the plugged glands to be further plugged, but I don't how.

I still don't even know what made me so much worse so quickly. I was using a couple eye lash growth products but 1. they had no BAK 2. they had no parabens 3. they had no prostaglandin 4. no prostaglandin cousins 5. opthamologist said they were safe. I don't use anything anymore but the irony is that I need something now more than ever because i went from short thin lashes to huge gaps of no lashes now. Not that I can even wear any eye makeup anyway anymore.

I know some people have tried it all. But my resources are very limited, as it is I have to let go of basic necessities just to fly out to see one doctor alone. I am hoping to get advice on what makes the most sense to try next. I can't afford to fly everywhere and my eyes can't handle it either. Just typing this alone is hard.

Any advice appreciated. Thank you.

[Arcluce]

Have you used any preservative free saline solution/drops? I personally use Purilens Plus Ultra PF (I love dumping this in my eyes, it feels great) or any drops that are preservative free. The rest of the drops I have tried end up just making my eyes feel worse and nobody wants that. If you are talking about something other than drops I wouldn't have any idea. I too was not a fan of serum tears. I would also suggest marijuana(preferably an indica strain). I have a hard time keeping my left eye open, although my vision in that eye is always blurry so I just keep it closed, but when I hit my bong the pain dissipates and I can keep my left eye open. Keep in mind it's only a suggestion, I don't expect anyone to go this route, but for me I will keep on smoking it.

[Betsy]

Hi Arcluce. Thanks for your response. I use PF refresh because they are readily available and discounted at Costco. I have not heard of Purilens. I always thought that marijuana dries you out? Perhaps this indica strain is different? What about marijuana oil that you put on your skin? I know even on the skin it can absorb systemically into the blood stream.

[Arcluce]

Purilrens Plus PF, is the same as Unisol 4. The only problem with that is that you have to purchase it online. When it comes to marijuana some strains can dry them out worse than others. It all depends on the strain I would like to say, but hey depending on how much I smoke the pain more or less dissapates for the time being. Indica is more of a downer and sativa I would consider to be more of an upper. (I cant forget the hybrids- part sativa and part indica) There are websites out there that explain the different strains in detail. On another note I wouldn't even know if it dries my eyes out, because my eyes tend to be dry all the time (the schirmer's test that I was given read 3mm if I am not mistaken, this just gives you an idea of where I stand) You could always just make edibles with the marijuana, but that oil somewhat intrigues me.. and essentially that's what you create when cooking with it. I don't see why it wouldn't work placing on your skin, but would it have the same effect as ingesting it. I would like to say I don't think it would make a difference. Hey, it might even be better that way, who knows, because I sure don't. Lol. Another thing I noticed is that when it comes to the majority of people it's always the left eye that gives them the most trouble and this also pertains to me also.

[Greg Dahlen]

Betsy, sounds like you're looking for a conventional solution. I will tell you what has helped me, although it's not conventional, and if it grabs you you can try it: for the last seven years, and currently, I have been living on milk. Every day I drink somewhere between one and two gallons of cow skim milk, and really hardly eat or drink anything else. It really seems to make my eyes feel tolerable. I think the reason is that milk is a very easy food for the body to process because it is made from food that has already been broken up by the mother. I have tried the kind of diet that nutritionists recommend, which is fruits and vegetables, and fish; but for me that diet didn't work, and I had eye pain on it. But when I returned to milk, my eyes felt better, and tolerable. Since my body probably doesn't work too differently from other people's, I would guess that since it worked for me, it might work for others. In truth I can't see any harm from trying. Living on milk you might miss a few nutrients, but I believe it has enough of the important ones that one does okay. If people on dryeyezone tried it for a few weeks and it wasn't working for them, I suppose they could stop it, and return to whatever they were doing. But wouldn't it be nice if it helped them as it has helped me?
My primary care physician knows about the diet and is okay with it. She says if it works for the patient, then she's okay with it.
The diet may sound a bit monotonous, but surprisingly in practice it's quite enjoyable. Milk tastes quite nice and is quite refreshing. For me I'm really motivated to do it because it makes me feel better physically. It might work that way for other people as well.
If you do try it, would you let me know how it goes, whether it works for you, and how well, doesn't work, or whatever your experience is. If it turns out it works for people other than me, I can spread the word.
The idea isn't mine. I got it from the Masai tribe of Kenya, who are famous for living only on food from their cattle, beef and milk. I just emphasize the milk part

[heyjude0701]

Hi Betsy, boy do I sympathize with you! I wish I had answers but I am still searching myself. I too had all the standard treatments and take Restasis, live on Refresh drops from Costco, go through those boxes really fast and I am still struggling. I had success with PROSE scleral lenses for about two years, but now they don't fit anymore. Insurance paid for them the first time, but now I am on Medicare which doesn't pay for scleral lenses for dry eye. The last time I checked, the cost was $12,000. I lived in NY when I got them, but now I live in northern CA and there is no place here that offers PROSE lenses. UCSF is supposed to open a PROSE clinic, but they have been saying that for a year now and I am on the waiting list and the clinic is still not open. But I am not sure that I want to shell out 12k without any assurance that the new pair will fit. My local eye clinic in Monterey started fitting Jupiter lenses, and I am giving that a try. Their price is reasonable- $180 for the fitting and $250 for each lens. That price is good for as many trials as I need in a three month period. So far, I am on the first pair and they are very uncomfortable. I am waiting for the next pair with adjustments in fit to come in; it takes about two weeks. Right now, I am not very hopeful but maybe I am wrong.

I haven't tried autologous serum drops yet; that will be my next step if the Jupiter sclerals don't work.

I know I have no circulating testosterone, and I think that may be a cause or part of the cause of my dry eye (I don't have earwax either, and no hair on my arms and legs anymore). I tried testosterone eyedrops that an ophthalmologist at Weill Cornell in NY prescribed (they were made at the compounding pharmacy in San Jose CA) but the drops burned so badly I couldn't tolerate them. I am wondering if I should look for a doctor who would prescribe testosterone patches for me, but I am afraid of possible side effects. I could not find a doctor in NY who would prescribe systemic testosterone, but a friend in California said there are concierge doctors here who would. Of course they are very expensive and not covered by insurance.

I know there are a few treatments in the clinical trial stage; hopefully there is an effective treatment in the pipeline. Until then, we wait and suffer, try unproven treatments and hope we are not doing more harm... and we're spending a lot of money.

The best help I am getting now is from rose-tinted glasses I ordered from TheraSpecs. My eyes are extremely sensitive to light, and the rose-tint helps a lot. I have a pair for outdoors and a pair for indoors that is not polarized. Still, my eyes hurt all the time.

Hang in there! This problem is getting more and more common. At least now eye doctors take it seriously. One of my eye doctors in the past who was a great surgeon (treated my cataracts, glaucoma and retina) couldn't understand why I can't just live with the dry eye syndrome. Judy

[Teary824]

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[xpro]

I think probing will be good to try, but Dr. ****** is too expensive. Dr. Steven Safran in New Jersey charges way less than Dr. ******. You might want to consider him. Also maybe you have demodex?

[Betsy]

Hi guys, I haven't been on here a while due to being miserable (so hard to be on computer all day at work, when I get home I stay away from the computer.) Funny thing is I didn't get notification of responses in my email either! I tend to not get responses on other postings when I would check in the past, so now that I have, I really appreciate it I will respond tomorrow to the responses since it's so late now. Thank you!

[eye_allergy-kids]

I have tried all the conventional treatments and also tried serum drops. I had lipiflow on one eye. The LF eye now hurts more. Both eyes hurt constantly there is never a break. I don't know what to try next. I wanted to try cautery because it helped my mom. But keep hearing if i have inflammation that would make things worse. Do we not all have inflammation ? How do I know how much inflammation I have? I take restasis, used steroid drops (didn't help at all, plus the BAK ugh), omega 3, NAC, ALC etc...the lipiflow optometrist feels that my right eye hurts due to the blockage (thus recommending it for that one eye only) but guesses the left hurts due to inflammation, but she didn't know other than process of elimination.
said they were safe. I don't use anything anymore but the irony is that I need something now more than ever because i went from short thin lashes to huge gaps of no lashes now. Not that I can e
So I don't know what my next step is to help myself. Do I try IPL? Probing? cautery? tear drain irrigation? If I ask someone doctor or patient, they naturally tell me one thing is vastly superior and nothing else works but that is what worked for that patient or what the doctor likes for whatever reason. I need a doctor who offers various things and can tell what most likely will work for me...


Any advice appreciated. Thank you.

Hi Besty

You are in same situation as me five years age about my son's eyes. I followed a method which is 99% I am free from troubles.

You may try this

http://www.dryeyezone.com/talk/forum...pathy-ayurveda

good luck

[Betsy]

Arluce -
how do you take it? I'd rather not smoke anything because it's bad for the lungs and I have never smoked s not wanting try now. Have you tried the oil ? I really want something that will treat more than just the symptoms. Though right now I am so miserable i would take anything.

Greg,
I am so glad you found something that worked. I am no fan of milk so it would be so hard for me to drink 2 gallons of it. That leaves no calories for a variety of foods. But if it works for you, that is what matters most. How long before you saw results? I could try, not sure how long I could do it for. I am not lactose intolerant but I do think my stomach does not like milk too much.

Heyjude -
too buy the costco refresh plus as much as they let me, whatever their limit is. What makes the PROSE lens better than the others do you know? Was that the first ever scleral lens? I wonder what the first scleral lens was that Dr. Rosenthal invented. I heard the most comfortable is called eye print pro lens but it's like 5K because it's super customized and insurance does not pay. I had an appt to get fitted but canceled due to costs, I wonder what type of lenses they had. I am not familiar with them all. So Juniper is not comfy? Shute, I hope they can make it comfortable :/

I am suppose to try testosterone+progesterone drops. I wonder what made your eyes burn. Were yours preservative free? Mine are suppose to. Ugh $124 at Leiters Pharmacy in Cali for 10ml they dont have them I am suppose to wait but ugh the cost! I'd hate to pay so much only to find out after one drop that they burn to much to truly test. Where did you get yours and do you recall the cost? I have not had my testosterone tested and don't *think* have any other low testosterone symptoms that I know of....I too worry about worsening condition since we are at a point of trying new things when we have an opportunity, but their new.

The costs you quoted for sclerals is crazy, that place sounds awful !

Xpro-
I too wonder if probing may help me but can't find anyone on the west coast let alone closer to me than that. I was told I don't have more demonex than average as I guess all people have some mites. But I never had the eye lash test. I have heard of Dr. Safran, are you going to see him?

Eyeallergykids -
Thank you for the link, I glanced but since there is a lot of info and my eyes are killing me, I will read it all tomorrow. Thank you.

Thank you for the responses. I can't believe how tight my eyes feel, like there is a seat belt around them that's so super tight I can't loosen it.

[xpro]

Xpro-
I too wonder if probing may help me but can't find anyone on the west coast let alone closer to me than that. I was told I don't have more demonex than average as I guess all people have some mites. But I never had the eye lash test. I have heard of Dr. Safran, are you going to see him?

I might go see him in 2 months if I don't find someone in Ontario. I used to have lots of issues with dry eyes before getting probed by Dr. ******, now my eyes are pretty much normal but I would like to get probed again just to make sure my glands are open and stay open.

Also for the demodex, they are not easy to check for. So I would say just start treating for it. I think my main problem was demodex from the start! When you start treatment, your eyes might get worst initially but they will get better within weeks if you have demodex. I would recommend washing your hair and face with tea tree shampoo everyday. I let the shampoo sit for a while before rinsing.

[Arcluce]

I personally smoke it out of a bong or one hitter, but a better way would be to smoke it out of a vaporizor. Seeing how that your are not keen on smoking it I suggest ingesting it. If I had oil I would give that a try. I remember eating it years ago and it would take awhile for the thc to absorb, but it always packed a punch (in a good way that is). My brother doesn't smoke anymore, but he was always insisted on eating it. The choice is merely yours. I have been searching high and low on the Internet to find something that could help, but have yet to find useful information. It seems as though the medical field is further behind than I anticipated. It is what it is. I shall continue to lurk around on this website. Into the shadows I go! Literally, because having eyes that are sensitive to light sucks. Although, the darkness has always comforted me lol. "A strange one you are Arcluce!" Yoda's words not mine lol. Keep in mind I am sober atm.

[heyjude0701]

I never got notified of a response to my message here either, so sorry for the delay. My testosterone drops were from Leiters in San Jose; I don't remember how much they cost, it has been about three of four years since I tried them. California is a medical marijuana state, and since I also have glaucoma I was considering trying marijuana for dry eyes too, just to see if it helps. I would get it in a form to take it orally, not smoke it. I was also going to try serum drops from Leiters lab, but I've heard from others besides you that it didn't work. My second set of Jupiter lenses are not comfortable either and they make my eyes red. I'm still brainstorming what to do next

[dominorose]

Hi Betsy, how are you with the hormone drops?