Still looking for a way to put it under control: sclerals? Botox?

[waterbee]

Hi ltree. During the years my eyes were severely dry, I also had very droopy eyelids, excessive blinking, and involuntary closing. It is definitely socially awkward, as I constantly had friends and complete strangers asking me if I was ok. One time I took my son to emergency for an asthma attack, and when the medics saw us come in they ran up to me and said "We can bring a wheel chair for you right away, where does it hurt?!" Funny (now) stories aside, one of my specialists told me the eyes drooping/blinking/closing was my body's automatic defense mechanism to protect my eyes, and it should be resolved once my dry eye problem became more manageable. She was absolutely right. So rather than trying Botox, perhaps wise just to wait it out, than the possibility of making it worse or adding more issues to what you already have.

You mention you're considering IPL. I can't recall if you have MGD, but that's what IPL is for.

Regarding sclerals, given the limited venues in Canada and you cannot come to the states, perhaps the EyePrintPro sclerals are worth a try? There's supposed to be little guesswork in fitting since the lenses are made from a mold of your eye, and Rebecca Petris recommended EPP sclerals in one of her recent newsletters right up there with Boston PROSE lenses. I think she wrote she currently uses an EPP lens and it works for her. I know it's tough to decide given EPP sclerals are relatively new, you don't know if sclerals will work for you, and this will be out-of-pocket. But if you are running out of options, it may be worth a try at this point.

Hang in there, ltree, it will get better.

i agree with this, eyes look very different when on worst days (photos show me this, otherwise i actually didn't notice, after all its chronic you forget what your lids once looked like until you start to get some improvements ) im having a bad flare right now and now ive trained myself to see the small changes in the lids and now only after years can its actually very obvious.

(also started noticing random peoples eye lids on TV and such and there blink rate. i sit there and say to myself "eh, they need to take some fish oil, so much blinking. " or "i wonder if they know they have dry eye? some times you dont notice it before it gets bad,,,")

(i need to get out more)

[Hokucat]

Hi ltree and Reggie. In Rebecca's last e-mail newsletter there was a link to The Scleral Lens Education Society, which lists fitters by location who have shown proficiency in fitting, evaluating, and management of patients for sclerals. I saw my USC doctor listed who I think very highly of and who has extensive training and experience, as well another doctor I've heard good things about. Given this and that Rebecca sent it out, it may be a good resource for you. It lists two doctors in Ontario, one in Vaughan and the other in North York...not in Toronto, but at least in your province!

http://www.sclerallens.org/scleral-fitters

ltree, regarding if certain eye drops can damage your eyes, they can because of preservatives, especially BAK (benzalkonium chloride). My uncontrolled blinking where my eyes would involuntarily shut and I could not quickly open them (including while driving) actually started a few months after using the steroid Lotomax, which has BAK. Check if the steroid drop you are taking has BAK, I think there are a few that do not have preservatives but cost more, ask your doctor. In the meantime, try rinsing your eyes with preservative-free saline ~20 minutes after you use any drops with BAK or other preservatives...one of my specialists agreed this was a good idea to minimize damage from preservatives. This can also be refreshing, and some people use saline in addition to or instead of artificial tears. Rebecca sells several preservative-free salines in The Dry Eye Shop.

https://www.dryeyeshop.com/mobile/pr...ines-c162.aspx

Waterbee, I had a good laugh reading about you evaluating people's eyelids and blink rates on TV :-)

[farmgirl]

Hi Itree: I am so happy to hear that you got the plugs and that, at least for the moment, they are working. I know I could never be without mine.

I am also happy to hear that you have found a doctor whom you like and will refer you to an ophthalmologist, but I am really sorry to hear that your spasms are worse. By the time you figure this all out you will be able to write your own book. It is so frustrating but you are really on the right track exploring all of your options and I am pretty sure that you will get your answers eventually.

I do have preservative free steroid drops that I have needed on occasion. They are Bausch & Lomb Minims.5% . What really ticks me off is that regular drops are covered under my prescription coverage and these are not. It is not that I insist on no BAK I simply cannot tolerate it. They are more expensive but my gripe is that the coverage will not even grant me the cost of the drug if I got the preserved type.....grrr. Oh and BTW I use them until the little container is all used up, I am not wasting this stuff.

I wish you luck, I will be interested to find out what you discover....stay in touch....cheers....F/G

[Jahcpa]

It is a weird condition. I'm not sure the doctor even believes me when I say that I think the dryness is caused by closing my eyes so much. But I think he - you know - humors me. All I know is after I have a botox treatment, the feelings of dryness go away. Then as the botox starts wearing off, the dryness symptoms return.

It was a different ophthalmologist that finally got the diagnosis right. He referred me to a neural ophthalmologist, who I see now.

Botox is not perfect. It gives me the ability to drive short distances, work, and enjoy life again. Driving and walking are still challenges for me, but manageable. And then botox wears off - so I need a treatment every 2 months, probably for the rest of my life. Oh well.

[ltree]

Hi Itree: I am so happy to hear that you got the plugs and that, at least for the moment, they are working. I know I could never be without mine.

I am also happy to hear that you have found a doctor whom you like and will refer you to an ophthalmologist, but I am really sorry to hear that your spasms are worse. By the time you figure this all out you will be able to write your own book. It is so frustrating but you are really on the right track exploring all of your options and I am pretty sure that you will get your answers eventually.

I do have preservative free steroid drops that I have needed on occasion. They are Bausch & Lomb Minims.5% . What really ticks me off is that regular drops are covered under my prescription coverage and these are not. It is not that I insist on no BAK I simply cannot tolerate it. They are more expensive but my gripe is that the coverage will not even grant me the cost of the drug if I got the preserved type.....grrr. Oh and BTW I use them until the little container is all used up, I am not wasting this stuff.

I wish you luck, I will be interested to find out what you discover....stay in touch....cheers....F/G

Hello farmgirl:

One funny thing is, the plug insertion, steroid drops and worsened blepharospasm all coincided at around the same time - together with the alleviation of the dry eye sensation.. Maybe they were related, because after 2 weeks, my eyes feel drier again. No steroid==more inflammation?

I do not feel the plugs at alll right now. They are collagen, so is there a chance they have already significantly melted, or I have lost them? I suppose these are good questions to ask the optometrist.

I keep forgetting - I should mention the Minims to the doctor next time. They might be part of the mix to put things under control. Another question: For you, how long does it take for the drops to kick in? For the Durezol, it does take a day or a few days.

And yes, by the time I get this figured out I can write a book about it.. Better yet, contribute and/or help organize the material on this site to help other people with DES. The optometrist I saw this week who is fitting scerals for me (more on that later) said Canada is 20 years behind on this!

Take care too.

[ltree]

Hi ltree and Reggie. In Rebecca's last e-mail newsletter there was a link to The Scleral Lens Education Society, which lists fitters by location who have shown proficiency in fitting, evaluating, and management of patients for sclerals. I saw my USC doctor listed who I think very highly of and who has extensive training and experience, as well another doctor I've heard good things about. Given this and that Rebecca sent it out, it may be a good resource for you. It lists two doctors in Ontario, one in Vaughan and the other in North York...not in Toronto, but at least in your province!

http://www.sclerallens.org/scleral-fitters

ltree, regarding if certain eye drops can damage your eyes, they can because of preservatives, especially BAK (benzalkonium chloride). My uncontrolled blinking where my eyes would involuntarily shut and I could not quickly open them (including while driving) actually started a few months after using the steroid Lotomax, which has BAK. Check if the steroid drop you are taking has BAK, I think there are a few that do not have preservatives but cost more, ask your doctor. In the meantime, try rinsing your eyes with preservative-free saline ~20 minutes after you use any drops with BAK or other preservatives...one of my specialists agreed this was a good idea to minimize damage from preservatives. This can also be refreshing, and some people use saline in addition to or instead of artificial tears. Rebecca sells several preservative-free salines in The Dry Eye Shop.

https://www.dryeyeshop.com/mobile/pr...ines-c162.aspx

Hello Hokucat, thanks for bringing up the link on pratitioners. I realize I probably came across that recently elsewhere at DEZ - the lens fitter I saw this week *is* a practitioner on that list, in Vaughan!

So, did your blepharospasm resolve after less/more careful using of the steroid drops? I will make note of your technique to use saline rinsing after the drops if needed, thanks.

[ltree]

So, I am excited to write back that I am about to order the scleral lens. It is very expensive - CAD1400 for the fitting fee, plus CAD910 for each lens.

I have concerns about the usefulness of it, whether it can significantly protect my eyes from irritation and dryness at the office and other places with irritants and low humidity. This is because when I tried a sample pair at the clinic, it made my eyes feel wonderfully hydrated at first, and at the end of the 45 mins, it felt a little drier. So i wonder if the hydration can hold up for the 8+ hours a day that I need. Given that the trial lens are not customized for my fit, the sight discomfort is understable, but it is the hydration/protection on my corneal surface that I am concerned about.

[farmgirl]

Sadly Itree you will never know if you don't actually try them. When I got mine I was able to try them for a period of time before I committed to paying for the actual lenses. The fitting fee for me was $600 and that was not refundable but the cost of the lens was. I bought the lenses and found I could not wear them for more than 4 hours as my eyes got sore and bloodshot so sigh...I lost my $1200.

[Hokucat]

Hi ltree. My blepharospam first starting getting better (but did not go away) a year and a half ago, after doing meibomian glands probing followed by drinking the lemon in green tea 2x daily, at which time I was still on the Lotemax which had BAK. Last summer when I went off Lotemax, after a month or so the blepharospasm completely went away. Late last year I was put on a drop with BAK for a different eye condition, and rinsing 20 minutes after with the preservative free saline seems to have prevented the bleparospasm from returning. However next month I still will be switching to a drop without BAK to prevent damage from long term use.

BTW, I found the study below on how green tea may help ocular conditions like dry eye:

https://www.ncbi.nlm.nih.gov/m/pubmed/21364905/#fft

Glad you are trying the sclerals. Yes, the customized fit for you can make a big difference, especially the size of the lens, so pay attention to the different diameters you try. Be picky about how it feels, especially the edges. There are some things you can do that may help the edges feel more comfortable and less dry, like using a few drops of artificial tears when inserting and while wearing the lenses, etc. There may be periods or days when you cannot wear the sclerals, and they might only be part of the solution for you, so just don't expect it to be perfect. But if it is, that would be great!

[Reggie]

HI Itree,

I know the feeling of seeing doctor after doctor and feeling very helpless. Hang in there and keep pushing forward. I am in the process of applying for prior approval for out-of-country coverage so that I can get new PROSE lenses at Boston Sight. There have been patients here who have had their lenses completely covered by the Ontario government. One of my lenses is 7 years old and the other is about 9 years old so I was told that I was long overdue to come back for a checkup, as well get my lenses replaced. Have you considered applying for the coverage? I am seeing a doctor at the Vision Institute named Dr. Jennifer Liao. She was trained in Boston and works at the Kensignton Eye Institute which is supposed to be the first clinic in Ontario that will start making scleral lenses (supposed to start this summer).

Edit. I just read that you are ordering sclerals. Where are you getting them from?

[ltree]

Sadly Itree you will never know if you don't actually try them. When I got mine I was able to try them for a period of time before I committed to paying for the actual lenses. The fitting fee for me was $600 and that was not refundable but the cost of the lens was. I bought the lenses and found I could not wear them for more than 4 hours as my eyes got sore and bloodshot so sigh...I lost my $1200.

Hello farmgirl:

That is terrible and you are absolutely right - we won't know unless we try the lens... Imagine a world, maybe 20 years from now, when the lens are available much more affordably, and offered as an option at the early onset of a corneal issue - before it exacerbates to a situation in which the lens are a last resort because of the extreme cost... That would be great :-)

I will be in a similar predicament - the fitting fee is the part not refundable.

[ltree]

HI Itree,

I know the feeling of seeing doctor after doctor and feeling very helpless. Hang in there and keep pushing forward. I am in the process of applying for prior approval for out-of-country coverage so that I can get new PROSE lenses at Boston Sight. There have been patients here who have had their lenses completely covered by the Ontario government. One of my lenses is 7 years old and the other is about 9 years old so I was told that I was long overdue to come back for a checkup, as well get my lenses replaced. Have you considered applying for the coverage? I am seeing a doctor at the Vision Institute named Dr. Jennifer Liao. She was trained in Boston and works at the Kensignton Eye Institute which is supposed to be the first clinic in Ontario that will start making scleral lenses (supposed to start this summer).

Edit. I just read that you are ordering sclerals. Where are you getting them from?

Hello Reggie,

Thanks for the encouragement which I very much need - another very time consuming appointment today, with a third opthamologist...

Do you mind sharing with me how you apply for coverage? My lenses are fitted by Dr Thakrar in Vaughan, and she mentioned that currently OHIP covers 24 patients per year for sclerals, although this year they have not approved anyone yet. It is all about funding (or lack of) and pretty sad.

I hope it is going to be a lot more affordable and practical if and when the lens are made locally.

[ltree]

Hi ltree. My blepharospam first starting getting better (but did not go away) a year and a half ago, after doing meibomian glands probing followed by drinking the lemon in green tea 2x daily, at which time I was still on the Lotemax which had BAK. Last summer when I went off Lotemax, after a month or so the blepharospasm completely went away. Late last year I was put on a drop with BAK for a different eye condition, and rinsing 20 minutes after with the preservative free saline seems to have prevented the bleparospasm from returning. However next month I still will be switching to a drop without BAK to prevent damage from long term use.

BTW, I found the study below on how green tea may help ocular conditions like dry eye:

https://www.ncbi.nlm.nih.gov/m/pubmed/21364905/#fft

Glad you are trying the sclerals. Yes, the customized fit for you can make a big difference, especially the size of the lens, so pay attention to the different diameters you try. Be picky about how it feels, especially the edges. There are some things you can do that may help the edges feel more comfortable and less dry, like using a few drops of artificial tears when inserting and while wearing the lenses, etc. There may be periods or days when you cannot wear the sclerals, and they might only be part of the solution for you, so just don't expect it to be perfect. But if it is, that would be great!

Hello Hokucat, thanks for the tips and info, especially the part about dealing with BAK and your experience of blepharospasm from it - this is like gold for me because none of the many specialists have ever told me about this possible link.

I will also note your suggestions when I finally get the lenses. The clinic says I may get them as early as this Saturday! They are going to be 17 mm, which the optometrist says are the biggest that can fit reasonably well for me.

[farmgirl]

Hi Itree: I'm just wondering if you ever got your lenses....F/G

[ltree]

Hi Itree: I'm just wondering if you ever got your lenses....F/G

Hello farmgirl, thanks for asking :-)

Yes I did, a week, about 2 weeks ago.. I have not been writing because my blepharospasm had been acting up, and it did not help that we had been getting a lot more sunshine now that spring is here.

I mentioned that the optometrist did not give me a straight answer when I asked about how many re-fits it would take to get it to being comfortable.. It has been rocky so far, although I am trying to be hopeful.

The first customized set gave me blood red eyes after I wore them for a few hours. I let it heal and tried again after a few days. Now I can wear it to work, but they definitely irritate me at the lids and at the cornea. The dr says the next ones should not push down on my eyeballs too much. I get irritation - dryness and red and itchy eyes at the end of the day and cannot wait to take them off as soon as I get home.. On weekends I feel better not wearing them. So there is definitely some more tweaking to be done. Getting the second customized pair later today and hope they are better.

I guess I have another 2.5 months to decide whether it works for me, and if it does not, like you, I have the option to lose the fitting fee and not keep the lens.

Thinking of starting another topic on blepharospasm. It is very weird, the last optom. and opthal. I saw both said I do not have dry eye symptoms anymore (although I still feel irritation at work and in public places), yet the blepharospasm is getting to be an "extreme case" now.