Accutane induced MGD - I've completely given up

[Sylfaen]

I have been diagnosed with severe MGD as a result of taking accutane. It's been about 5 years now, and I am steadily getting worse and worse. It's gotten to the point now where I am in so much pain that I can't even keep my eyes open anymore. I spend 100% of my time outside (I live in Florida and it's very humid) to avoid the air conditioning. I found that if I did so, I could use my laptop without any problems. So I've spent the past 4 years outside on my laptop, and could do literally nothing else. Reading, school, working, sports, nothing works. I can't be in even the slightest amount of wind or air conditioning without having to close my eyes. Thankfully my patio has a wind shade and so it doesn't effect me. However, it's gotten so bad that I can barely even use my laptop now.

Things I use to treat my condition:

- I have an herbal eye wash that acts as an anti-inflammatory, and increases circulation to the eyes. I've been using this from the beginning, and it is BY FAR the best treatment I have.
- Natural tear drops when waking/sleeping
- Hot compresses
- MGD Retaine mineral oil drops
- 2% castor oil based drops (all drops preservative free of course)
- Punctal plugs
- Ibuprofen
- Very rarely I use Dexamethasone anti-inflammatory drops if I'm severe. (However these no longer seem to benefit me.)

Procedures I've had
- Mite check (Dr. Scheffer Tseng)
- Restasis (Dr. Scheffer Tseng)
- Dr. Steng also performed a procedure in which he opened the eye glands manually. He did this procedure 3 times. Oil production was still working, however the glands always closed up after 2-3 days despite my flawless following of his post-op instructions.
- Lipiflow (made me severely worse I believe)
- Scleral Lenses (They couldn't make them big enough)


All procedures have failed miserably. I'm spiraling into horrible depression for the fact that I have run out of options. I have seen many many many opthamologist (Dr. Tseng included), optometrists, neurologists, psychologist, hormone doctors, health specialists, acupuncturists,.. You name it I've been there. None of them can figure anything out for me. No one can even make my suffering even slightly more bearable.

I have more or less given up hope, as I sit here in terrible pain trying to construct this post. I don't have the ability to sift through every thread and read them all, as it would be far too painful. If anyone has any suggestions at all, I would love to hear from you.

Some side things of interest:

I have no visible inflammation of the eye lids.
Inflammation of the eyes is virtually non-existent, except for the right side of my right eye where the eyelids rest when closed.
Oil production seems to be working fine underneath the closed lids.

[Tanner]

doxycycline might help

[DCRdryeye]

sylfaen - how long ago did you take Accutane? Can I ask your age? It's a terrible position for you to be in especially having available all the BEST specialists on tap. That's so discouraging.
Personally, I don't think there is any cure, may-be temporary relief for MGD, there is a forum on here highly recommending NAC for MGD and of course ophthalmologists will try you on Doxycycline (that did nothing for me...but it might help you. This condition is very individual.
You mentioned they couldn't make a scleral lens large enough for you? Who couldn't make them big enough? What diameter were you getting eg: 18mm ? You can get older ventilated scleral lenses that still work and are 26mm and almost covers the entire conjunctiva. Jupiter lenses are also large (so I've been told). So perhaps check this path a bit more. I know from first hand experience that smaller sclerals don't help. I am encouraging the sclerals again for you because there seems to be no cure for MGD and many treatments don't work. Sclerals prevent the evaporation of tears caused from MGD.
We understand how you feel, I've had severe depression from my dry eye condition, can't socialize with friends, can't read the books I want to read, and go to bed for relief (but firstly filling my eyes with Thera tear gel) and trying to go to sleep. But the anxiety caused by this condition can cause insomnia...so it perpetuates and gets worse. One member here wrote that "Temazepam" immensely helped her eyes and wanted to know what was in the pill pharmacology that caused it. But she missed the point, it was the fact that Temazepam gave her a deeper and better sleep allowing her eyes to rest. MGD sufferers need at least 6 to 8 hours sleep a night. That member will not get the deep sleep after a few days, Temazepam, tolerance is developed very quickly.
Don't let hope slip away despite all your effort, time and money spent for relief. There has been an exponential effort more so than previously for finding an effective treatment for MGD. You WILL improve, baby steps.

[Sylfaen]

I took Accutane when I was 16 years old, and I am currently 22. I had scleral lenses fitted and inserted by Dr. Ed Boshnik in Miami. He was recommended to me by Dr. Tseng. The size of the lenses were 20.6mm, which I was told is the largest he would be able to get. This was definitely true, because it took me an hour to get them in and out, they were so large. However, there were large amounts of eye uncovered, and those areas were still in significant pain and so the whole project was useless.

I also am taking Trazadone, and so I can relate to the Temazepam. I went from having sleeping issues to sleeping 8-10 hours a night easily.

I understand that there are baby steps to be made, but I feel like I'm at the end of that road. I'm sort of just sitting here trying to kill time as best as possible waiting for anything else to come along.

[BigNate]

Sylfaen,

I feel your pain...I too am 22. Long story short, I have done most of what you have done, plus a couple more. To keep this brief and to the point, here is what we have in common based on what you have wrote:

1) We're young so this isn't age related
2) we have no visible inflammation

My advice to you, based on what has helped me and what I have read:
1) Stop doing the warm compresses, maybe change to cold
2) Take a multivitamin (This has helped me more than many steroids)
3)Take a probiotic (try culturelle...probiotics eat away at harmful bacteria causing inflammation)
4) Take NAC supplement (I am going to try this very soon. Have done a lot of research)
5) Take lactoferrin supplement (Just ordered these. These have been proven to restore tear making ability and cut away at inflammation

Also as a word of encouragement, there are two drugs coming out. One (Lifitegrast) will be released at the end of the year and the other (forgot the name) will be released in beginning of 2014.

As a side note, I know you say you dont have inflammation, but maybe it is too far down in the glands for anyone, including your doctors, to realize.

Good Luck,
Nate

[DCRdryeye]

WOW you still feel pain with 22mm sclerals. Most are using 18mm and finding relief. I find that fascinating. I wish Rebecca was here to read this. I've found a new scleral lather in Australia who can go up to 22mm for me, it might bypass my Pinguecula in both eyes where the 18mm sclerals always seems to rest on and cause so much redness and discomfort. Dammit, why are sclerals so difficult to fit. It really annoys me.

Nate, I'm sceptical about the Accutane causing the condition, I was on it too, but got dry eyes 30 yrs later. You have a 6 yr gap, so you would have developed it much earlier by now. Sometimes dry eyes just happen for no known reason. Have you looked in Prokera? There's a forum on it here. It might give you some relief.

[Sylfaen]

Sylfaen,

I feel your pain...I too am 22. Long story short, I have done most of what you have done, plus a couple more. To keep this brief and to the point, here is what we have in common based on what you have wrote:

1) We're young so this isn't age related
2) we have no visible inflammation

My advice to you, based on what has helped me and what I have read:
1) Stop doing the warm compresses, maybe change to cold
2) Take a multivitamin (This has helped me more than many steroids)
3)Take a probiotic (try culturelle...probiotics eat away at harmful bacteria causing inflammation)
4) Take NAC supplement (I am going to try this very soon. Have done a lot of research)
5) Take lactoferrin supplement (Just ordered these. These have been proven to restore tear making ability and cut away at inflammation

Also as a word of encouragement, there are two drugs coming out. One (Lifitegrast) will be released at the end of the year and the other (forgot the name) will be released in beginning of 2014.

As a side note, I know you say you dont have inflammation, but maybe it is too far down in the glands for anyone, including your doctors, to realize.

Good Luck,
Nate

I appreciate it. I will indeed try these things. Likewise, I would recommend to you the anti-inflammatory herbal eyewash I use. It hurts going in, makes your eyes a bit red for a minute, but it is AMAZING. The vendor who makes it is a family friend of mine. He makes and distributes it himself. It seems he's taken it off his website due to a lack of market, but he still makes it for me. You can try and contact him here and ask him about it if you are interested. http://alphaherbs.com/

[spmcc]

Sylfaen,

I don't see moisture chamber goggles on your list of things you do/tried. You should really get a pair. They may allow you to be inside without pain.

Good luck,
Sheila

[Sylfaen]

Sylfaen,

I don't see moisture chamber goggles on your list of things you do/tried. You should really get a pair. They may allow you to be inside without pain.

Good luck,
Sheila

I've tried moisture chamber glasses and they seemed to irritate more than help. Do you know of a specific brand that might be better than others?

[spmcc]

Rebecca has a guide to moisture chambers: http://www.dryeyezone.com/talk/showt...ighlight=guide

I have many pairs of WileyX (Rout and Brick frames and others). I also own multiple pairs of 7Eye. I tried less expensive goggles, but I prefer the better, more expensive ones (e.g., WileyX and 7Eye).

Remember: the seal doesn't have to be perfect, but they do need to be comfortable enough to wear for long periods (like every waking minute for me!).

If you can find a Harley-Davidson store near you, you can try on different pairs. Check prices and compare with the Dry Eye Shop.

Links to locate:
Harley-Davidson shops: http://www.harley-davidson.com/en_CA...r-locator.html
Wiley X dealers: http://www.wileyx.com/ordering/dealer_locator.aspx
7Eye dealers: http://www.7eye.com/Dealer-Locator/

Good luck.
Sheila

[DCRdryeye]

Sylfaen - would you have the ingredients of herbs your family friend makes for your eyewash? He has a great website and many products, perhaps he needs to market it to a niche audience such as here. How do you you use the eye wash?

[Sylfaen]

Sylfaen - would you have the ingredients of herbs your family friend makes for your eyewash? He has a great website and many products, perhaps he needs to market it to a niche audience such as here. How do you you use the eye wash?

The ingredients on the bottle are listed as follows: Bayberry, Eyebright, Golden Seal, Red Raspberry Leaves, Cayenne. These are the herbs. The base liquid is Raw organic apple cider vinegar, and alcohol.

You take an eyewash cup such as one you might find at a pharmacy, bundled with distilled water or something. Fill it to the line, add 2-10 drops of the eyewash, and then straight into your eyes, up to 6 times a day.

The more drops, the worse it stings. And when I say it stings, I doubt you've ever put anything in your eyes that stings more than this. However, it is totally worth it. I have not gone a day without using it 6 times in the past 4 years. Not a single one.

[Jenn1]

Hi Sylfaen,

I was also given accutane like you for around 6 1/2 months and was also told by the opthamologist that my mgd was the worst hed seen. Can I ask how long you were on the drug and what dose? Which country are you in? I have heard of people getting cataracts and other problems after accutane when these arent mentioned as side effects. What brand of accutane were you on also? Have you had your thyroid levels checked regularly also? Hot weather can make your eyes worse, I am in the UK so its not warm most days. I think you may actually benefit from moving to a much colder climate if your eyes arent calming down as your eye health is very important to prevent more severe, future complications.

[DCRdryeye]

thanks Sylfaen. I'm familiar with all those herbs, if the cayenne was taken out the stinging wouldn't be so bad

[Sylfaen]

Hi Sylfaen,

I was also given accutane like you for around 6 1/2 months and was also told by the opthamologist that my mgd was the worst hed seen. Can I ask how long you were on the drug and what dose? Which country are you in? I have heard of people getting cataracts and other problems after accutane when these arent mentioned as side effects. What brand of accutane were you on also? Have you had your thyroid levels checked regularly also? Hot weather can make your eyes worse, I am in the UK so its not warm most days. I think you may actually benefit from moving to a much colder climate if your eyes arent calming down as your eye health is very important to prevent more severe, future complications.

I'm not sure about the dosage. I am in the United states. Cold, moist weather has been the best for me, for sure. However, I can't consider moving anywhere because I literally cannot support myself in any way shape or form. I can't leave my outside patio, much less work or travel to the store myself. I'm not sure about the thyroid either. I'm having blood tests done in 2 days, so we'll see.