What next?

[jimi51]

Hi,
I have been around a long time and I tend to stay off the board as I only seem to get more depressed. I am (this week) 2-1/2 years post LASIK. I have suffered with severe dry, painful, blurry eyes and floaters to no end. I have been through just about every treatment mentioned here including plugs (X4) Restasis, IPL (X5) gland expressions, steroids, doxy, Azasite etc..My regular optho is basically through with me as she said that I have shown signs of improvement but my symptoms have actually worsened. Recently I found a college of optometry where a couple of residents have taken an interest in my case. I have been told in the past my Tbuts are about 4-6 and my Shirmmers were low as well, I have been told my glands upon expression are sercreting someting like toothpaste. Now, these Dr's have done more test and took pictures of my MG's and they say the look normal, my secretions are close to normal and they performed an osmolity test and it was normal (295). I have been dx with MGD, Rocea and somthing involving the whites of my eyes (poor turgor in the sclera).

But, the pain and blurry vision persists. I have tried several sclera lens fitting and they hurt so bad I was told I had corneal nueralgia as well. These two young residents are now going to have me get autoglous serum made and we are going to try that. Has any post -Lasik poeple ever had sucess with that? Also, my Dr. just put me on a statin as I have high cholesterol, could that be affecting my eyes as well?

How is it that everyone I know who has had LASIKS loves it but it has completley ruined my life, all activities have basically ceased, my poor wife is hanging on by a thread, I am at the end of my rope, I can't see myself living like this for the rest of my life. Any advise is appreciated!

Brad

[Mawsky]

Brad I'm so sorry you are going through this, I did not have LASIK so I can't speak with any authority on that, I'm not really sure what my problem is or how to get better, my sjogrens was neg but I have like, zero tears, tried lots of stuff too, but not as much as you, right now I'm trying the oils, fish, primrose, flaxseed. It does really effect our lives that's for sure, I told my husband it's getting scary how often I can't see, because of putting gel in, like driving, or in a store, and literally can't see where I'm going. Are your eyes better at times? Mine seem to get better, than worse, I can't seem to find a reason for either. Good luck to you, I hope someone is able to help soon.

[Sammy B.]

Brad, it's been a while. I am sorry to hear you're still struggling.

Are you taking anything for anxiety? I turned a major corner when I started taking something. It was like I still knew I had the dry eye but I felt like my old self, not like the self-loathing lump I had become.

The good test results tell me you are on the right track, your regimen just needs some tweaking. How is your diet? Do you eat fruits and veggies and avoid sugar? If you have rosacea, try an anti-rosacea diet. There are books on that very subject.

YES, I would definitely look at each and every medication that you take - see if it causes dry mouth - because if it causes dry mouth it can also be drying out your eyes.

A lady I work with struggled for years with sinus issues and severe bronchitis. She even went through sinus surgery in the hopes of getting some relief but to no avail. One day out of sheer frustration she sat down and began Googling her medications. Turns out her cholesterol med was causing her problems and once she stopped taking it, the problems went away.

You are not out of options. Keep pressing forward.

Rose

[Hopeful2]

Hi Brad,
I was just diagnosed with very low Vitamin A levels. It appears that Vitamin A has a role in dry eye, particularly with the mucin layer that keeps the tear on the eye. I am going to investigate further supplementation with Vitamin A and zinc (which apparently works with the Vitamin A).

Also, it appears that I had this Vitamin deficiency prior to my lasik surgery. The pharmacist who ran the blood chemistry test says that he sees these low levels in one in a hundred. I did not have any overt signs of dry eye prior to my surgery, other then some contact lens intolerance.

One other idea, I don't know what corneal neuralgia is, but I once had shingles post neuralgic pain. I found out that Vitmin B12 and a product called moducare worked well for this type of pain. Within three weeks of this treatment I felt much better. I don't know if this treatment has any application to your situation. If you google (lorna Vanderhaege shingles treatment) you will find a link to the source I used.

Lots to think about. . . off to rest my eyes.

Bella

[fiddle]

Hi Brad, I am new to this forum and am almost a year post lasik with poor results also (corneal scars, severe dry eyes, regression and the loss of my night vision with star bursts to mention a few). While I have not had any experience with what you are looking into I wanted to offer my support to you. I tend to have great downs since my surgery and have found that this forum offered me the comfort in knowing I wasn't alone as [deleted] made me feel I was. Since connecting with others it has helped me to cope, if nothing else from day to day (even moment to moment). I get your frustration and too wonder why my sight has been ruined while everyone else I know who had lasik had great results.
I wish you luck with your search for on-going help and results.
fiddle

[abbygirl]

SammyB,
You mentioned taking something for the anxiety. Would you mind sharing what the medication is?? I am on the fence about taking something especially with the chance tha
t the med could make my eyes dryer...but I am at the point where I need something to help me cope.

[jimi51]

Hi everyone and thank you for your kind replies. I too have lost my ability to drive at night safely, the starbursts are amazing. I actually just began two days ago my cholesterol medication so I am not sure what effect it may have. I do take lots of supplements in fact I take Lovaza which is 4 grams per day of pharmecuetical grade omega 3. I will look in to the vitamin A issue as well but I do take some but I really need to get it up.

Sammy B, what would reccomend I ask my Dr. for anxiety that does not effect dry eye? I am interested in that, thanks to all!

Brad

[Sammy B.]

Brad and Abby,

I tried Xanax with zero luck. In fact the more I took it the more anxious I was. I had a leftover bottle that I used when flying and before I knew it was gone and I had no relief.

So I went to my general practitioner and he explained to me that Xanax is really for those acute, severe panic attacks where you think you're having a heart attack, which I was not having. I was really experiencing daily worry and stress about my eyes from the moment I woke up to the moment I tried to lay down to go to sleep (at which I was not always fruitful by the way).

He put me on Ativan, 0.5 mgs, twice a day (once in the morning and once at night). The day I took it I felt like my normal self, just with dry eyes. It was like I didn't even know who I had become and the Ativan immediately righted the ship. Anyway, it corrected my sleep issues at night as well. I think in taking it throughout the day it calmed the nerves down so that I was able to relax at night. For me, taking something only at night didn't work, because I was SO RILED UP about my eyes by the time I went to bed thinking about how they would be tomorrow or how many times I would wake up throughout the night to deal with them, that it was too late in a way. Taking the Ativan twice a day was the key.

It has been a like a miracle cure for me. Looking back at my life I realized that I was always a huge worrier, which is why I have continued taking the Ativan to this day. My doctor said I'm taking such a low dose - the lowest dose possible - that there is no harm in continuing it for as long as I feel that I need it. I have to go back every three months to get my liver levels checked and to see him and get my refills, and whenever I go in there I feel like hugging the guy because he basically saved my life and my marriage. I was really on the brink.

You need to reach deep and weigh the pros and cons of taking medications, but in cases where you are on the brink as I was, I think medications can be lifesavers.

[abbygirl]

SammyB,
Wow!! Thanks for the advice and the name of the medication that is helping you. I also am a worrier and this eye problem has really made it much worse. I think about my eyes from the time I get up (with little sleep) to the time I go to bed. I know exactly how you feel!!
All the best to you.

[Margaret]

meds for anxiety

Just chiming in on what Sammy B. wrote. I am nearly 1.5 years out from Lasik, severe dry eye, night vision issues, lots-o-floaters, blurry vision, etc. I completely agree with what Sammy is saying about taking a med to save your life. I too take Ativan (Lorazepam). I remember taking for the first time. I had been having severe anxiety attacks that would linger as a low level anxiety for months. I literally found it hard to breathe at times. I felt like I was having a heart attack and wanting to faint all at the same time. I had the pill box for weeks and didn't want to take a drug that could make my eyes even worse, but I finally took the pill and within 30 minutes I felt so much calmer and "normal". I slept that night, the first night in months. I don't take it on a regular basis. I take it when I need it, which means my doc gives me about 30 pills and I go through them within 2-3 months. Regardless of how you take them, I think it's a lifesaver is some cases AND i really, really don't think it makes your eyes drier at all. In fact it probably helps since you are now finally getting the sleep you need!

Have a good night to all,
Margaret

[MaryVa61]

Hi Brad. I've never had LASIK so know nothing about what helps those issues, but if you're asking for a multitude of ideas, I'll share what's helped me. I have a lot of neurological symptoms and one diagnosed condition in that category, but so far none of my doctors have suggested neuro eye issues. Meds don't seem to help my eyes, but I did look up online the side effects of my meds and stopped the ones that can cause eye problems and especially dryness (talked with doctors first).

For dryness:
humidifier/vaporizer helps a lot, in daytime not when asleep.
OASIS plus lubricating drops.
Barleans' Omega Swirl fish oil and flax oil (both at full dose of each)
Refresh PM ointment at bedtime
Changed to meds/supplements that don't cause dryness of eyes, mouth
Sunglasses that fit over my glasses and wrap sides some (cheap ones at drugstore)
Goggles when driving if AC on high (cheap, very clear welder's goggles)

For stinging (which may include dryness):
Allergy skin patch tests & threw out many products in home afterward.
(my allergies included an ingredient in Johnson's Baby Shampoo)
Also eliminated drops containing BAK and Sodium Hydroxide (sensitivities)
Warm compresses (not too warm, not for more than 10 minutes)
Eye scrubs 1 or 2 Xday with Q-tip wetted w/sterile saline, Occusoft foam.

Mood/muscle tension/energy:
Vitamin B-12 (50 mg Pyridoxine Hcl)
Vitamin B-6 (250 mcg cyanocobalamin)
*Magnesium (400 mg Lysyl Glycinate by McGuff Medical Pharm.)
Vitamin C (Ester-C plus, 500 mg)
Folic Acid (400 mcg)
Vitamin E (200 iU)
*Vitamin D-3 gelcaps (1000 IU, was on 5,000 when testing as deficient)
Calcium (Citracal, Calcium Citrate + D3, petities, 2 w/supper)
Good sleep (took a while to make sleep environment ideal. check meds)
Reducing pain (from all disorders)

Some of the supplements I only take because something else I'm on can cause a deficiency or another supplement won't work well without it's companion. I included them though because my mood and energy improved when I started them and I started many at the same time and don't know which of those made the difference in how I felt.

If I were just starting supplements, I'd start with magnesium which helps a lot with my tension and anxiety (even stopped my TMJ) which means you have to also take Calcium (same or double the amount). Calcium can make you sleepy, so I take with last meal of day. Magnesium also helps a lot with my neuro-vascular disorder (Erythromelalgia) and pain disorders. You'd need to do some research on dosage Magnesium (and ration to Calcium) you need, based on weight and health issues. My neurologist wholeheartdly approves of my taking these.

Vitamin D-3 helped my energy level a lot, and therefore my mood, but the doctor tested me first and I was very deficient.

In using humidifiers or vaporizers, It's really hard to keep mold from growing in the motor area. I found it's easier to avoid that if you get the kind that heats the water up quite hot, and only use it every 3 days at most, and take it apart to drain/wipe while still hot. I've considered buying 1 or 2 more (mine is cheap) so I could alternate and therefore it'd have more time to dry between uses.

I had to do a great deal of web research (reputable sites), and experimentation to figure out what would help me. It's taken years for some. It can help a lot to keep a log of what you're taking, new problems, improvements. Then when things change (for better or worse) it's not as hard to figure out the cause. What helps me may not be helpful to you, so you have to experiment/research.

For the newest things that have helped I got the ideas from this site: goggles, Omega Swirl oils, OASIS drops.

I assume you have thyroid tests regularly. Thyroid disorders can do a number on your eyes and anxiety level.

Good luck to you. Sounds like you have really been though a lot and I hope you have some success soon.

[jimi51]

Thank you for your replies,
While I have done / do most of these things, every bit helps! I am looking in to Ativan as well. Thanks to all..

[neve]

Hi Brad - I am so very sorry to hear all you are going through. This disorder SUCKS in every way possible. First off, allow me to say that all I know of Lasik is from this forum and not one single person that I have read of has anything positive to say of it AND IN ONE WORD THAT IS WHY THEY ARE HERE...SUFFERING. I did not have Lasik, nor did I ever use contacts. I guess I am just a run of the mill lottery winner producing almost no tears, faulty meib glands,extremely short TBUT,no health insurance, pain almost constantly, alone with only one friend and no spouse (violent ex marriage convinced my so called friends that I am not a fun person anymore after having a gun held to my heaD MORE THAN ONCE AMONG OTHER BRUTALITIES).

I have two dogs and they are why I get up every morning and exist. I am blamed and berated by the only family member I have for causing my DES. I lost my job and worry every day how on earth I can pay for this extremely expensive and under researched disease w/ no income and no health insurance. But if I was not here anymore, my Saint Bernard would miss me and really be so sad

I wish I could give you advise...your docs sound so cruel considering the pain you must endure. All I can say is this; keep searching for the opth that has a heart and the knowledge and ability to help you. I know that there are postings on this forum that give advice to help ease daily pain as well as tests/treatments you may not have tried. As far as my routine, it is Muro ointment @ night, Systane balance restorative drops for day (supposedly helps restore lipid layer as my tear fil quality is complete garbage), warm compresses twice a day, fish oil pills and the prospect in about a month of installing plugs in my eyes to the tune of 1,000 for two or double that for all four. Even if they fall out a week later and need to be replaced,or are too painful to tolerate, there is no money back/recourse/plan in place to help me survive.

My only suggestion; find a kinf and empathetic therapist if you can. Talking and letting off steam sometimes can help emotionally. Medically, I am sorry but I have nothing. However, I wish for you relief as much as is possible for you to have a real life from your awful pain, a doc and a therapist that "hears you" and a life that is devoid of suffering, as much as possible. Please forgive me for rambling on about my own case. I have just about had it with all that is involved with living with this truly horrible disease. And yes, I am very, very angry. Sorry. Oh, wait a second, forgot to my RCE's. Being afraid to go to sleep is too awful to describe, as you must know.

Keep looking for that doc, I know it is so hard but maybe someone close to you geographically can shed some light on someone that actually cares and won't abandon you will believe all you say and will work their arse off (sorry!) to help your intense pain.

My best to you Brad...pulling for you, sincerely.

Neve.....let me know how you are doing and feel free to PM me if you would like. I care.

[Trac]

Brad,
I have dry eyes for no known reason. I am currently using autoglous serum along with a lot of other meds. It seemed to me like the autoglous serum helped, but with so many different medication how can you tell for sure? Tonight I went to the movies without first putting in my autoglous serum because I just started a new vial and it was still frozen. I used over the counter tears instead, it was the first time I had used over the counter tears since I started on autoglous serum 4 months ago. The over the counter tears were like putting water in my eyes and I went through the entire vial before the movie was over. As soon as I got home I put in my autoglous serum and my eyes felt much better. The autoglous serum and mucomyst seem to help me the most. I get both of these from Leiter's compounding pharmacy in San Jose Ca.

Good luck.
Trac