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

[ltree]

Greetings all.

Currently I have a “graveyard” of about 10 kinds of eyedrops and ointments that my eyes seemed to react to, and I am coping with the following:

- serum drops
- preservative free hylaluronic drops (Pur Gel, Hylo etc.)
- preservative free saline lid scrubs
- safety goggles, hot compresses, humidifiers, blinking

Still far from being functional. The major issues right now is the dryness and irritation on the surface of my eyes, when in public places and in the office (low humidity which I cannot change, and irritants in the air). Also my eyelids getting inflammed, irritated, resulting in droopiness, excessive blinking and involuntary closing. This is socially awkward and something I really want to improve.

First ophthalmologist only offered a list of drops (of which only serum drops helped a bit), second ophthalmologist who only saw me for 15 mins said I do not need sclerals. Last week I saw a neurologist for the first time who specializes in Botox for blaspharospasm etc. said he does not treat dry eye and cannot help me.

One of the problems, I think, is because when seeing the doctors, they could not see the full extent of the symptoms, because the appointments were typically early in the morning when my eyes were the most rested and before exposed to the irritants, or humidity had been high on a rainy day which made a huge difference. In one case, I was still on steroid drops (which helped somewhat but which the doctor sternly warned me to stop immediately because of the dangerously high pressure). I even emphasized to the neurologist that when he saw me, my eyes were at an 8 for functionality, which would typically drop to a 5 within the hour when I start driving/being in the office and go down to a 3. I don’t think he took me seriously.

So, in Canada where I am, there are private clinics who offer all kinds of treatments but considered non-standard and not covered by any insurance. It would get very expensive, even to get their consultation. Among these that I am looking at sclerals (basic or EyePrint), possibly IPL. Also considering to pursue Botox again, either taking a video to see if I can convince that neurologist of my real situation, or seek second opinion.

Now, from reading this board, it looks like sclerals may help with the dryness and irritation at the eye surface, although may irritate the lids. Also that having an experienced fitter is imperial. I am not in a position to travel to the States for the well-known doctors. I would be looking at the two fitters i my area I found so far, who may or may not be experienced. Any comments on venturing on this?

Also from this board, I read that some people had help with Botox, while other have bad side effects. I had concerns about the side effects - worse dry eye, eyelid unable to close, droopy eyes… But at this point I would want to give it a shot to try anything that can control the excessive blinking and twitching (from struggling to keep eyes open when they drop shut). Any more comments about that?

Thanks so much for reading and for any comments!

[farmgirl]

Hi Itree:;

For sure I can comment. My first comment will be with regards to the botox treatment. My sister in law had that procedure done for the same reasons, the excessive blinking and involuntary closing. It was the worst thing they could have done to her and now she is even worse. The effects of the botox did not wear off with the botox which only lasts about 3 months anyhow but it left her with a permanently droopy eyelid and I don't think it closes well and it did not help at all with her situation it in fact made her worse. She is very upset with them for even recommending it. I don't know where you live but she lives in Edmonton, Alberta. When she refused further Botox treatments they treated her like she was being uncooperative and basically told her that they could not treat her anymore. It has all been very upsetting.

She is currently unable to drive due to the fact that her eyes can slam shut at anytime and she is unable to open them quickly.

I have to ask though, have you pursued other options like punctual plugs? Those have helped me incredibly to the point that I had the uppers cauterized permanently.

I had sclerals made in Calgary but I could never get them comfortable for use more than about 4 hours.which makes them pretty much useless. I may try them later though when I am going through a good phase. I will tell you though, that if you do decide to try them, given that you are sensitive to a lot of things, you may not be able to tolerate the solutions for both cleaning and filling them. I had to resort to non-preserved saline in small Addipak nebulizer doses. I couldn't even tolerate the cleaners I was able to use the peroxide system though. Just something that you should be aware of, because if you do get them made and are struggling to tolerate them that could be part of the problem.

You are already wearing the moisture chamber glasses and that is good, I do find them to be helpful.

I wish you well in your journey for comfort....cheers....F/G

[Hokucat]

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.

[ltree]

Hello farmgirl, thanks so much for all the useful info and the well wishes! Sorry to hear about what your sister in law had to go through, not just the original condition but also the mis-treatment by those doctors. That is adding insult to injury. I hope she is finding a way to improvement.

It is useful to know the undesirable effects of Botox might last beyond those 3 months. There is theory, and then there is the reality that somebody is living out. I suppose that is enough to keep me from even thinking about pursuing that, for a long time.

She is currently unable to drive due to the fact that her eyes can slam shut at anytime and she is unable to open them quickly.

This is pretty much me on bad days. It can take several seconds while I struggle to open my eyes, unless I use a hand to help.

I have to ask though, have you pursued other options like punctual plugs? Those have helped me incredibly to the point that I had the uppers cauterized permanently.

I am surprised my opthamologist has not offered anything more from his list of drops to try. I think I'll book an appointment soon to ask specifically for this (and sclerals) - if he does them and if not, any referrals to another who does it.

I had sclerals made in Calgary but I could never get them comfortable for use more than about 4 hours.which makes them pretty much useless. I may try them later though when I am going through a good phase. I will tell you though, that if you do decide to try them, given that you are sensitive to a lot of things, you may not be able to tolerate the solutions for both cleaning and filling them. I had to resort to non-preserved saline in small Addipak nebulizer doses. I couldn't even tolerate the cleaners I was able to use the peroxide system though. Just something that you should be aware of, because if you do get them made and are struggling to tolerate them that could be part of the problem.

That is very useful info too. You are so right, I need to watch my own back on sensitivity to those solutions, doctors are always "surprised" that my body reacts to stuff they use. May I ask which kind/brand of sclerals did you use, and what size? Also, did they irritate your eyes surface, or your lids?

Along the same lines, would the plugs stand a chance of irritating my eyes? I initially didn't like the idea of putting something foreign in my eyes but I suppose they are relatively low risk and lower cost than the other options.

You are already wearing the moisture chamber glasses and that is good, I do find them to be helpful.

Actually I still haven't found any socially presentable eyewear that works. I wear a safety mask (from Home Depot) when at home and driving, which gives a good seal. I stick damp cotton pads inside them as my DIY version of moisture chamber glasses. Do you have any Canadian leads? I live in Ontario.

[ltree]

Hello hokucat, thanks for sharing your experience and your kind words.

It's great to be able to look back and laugh about it.. I hope I can get there soon enough.

I wish the process of getting sclerals made is more established and more affordable. I think somewhere it was mentioned on this forum that somebody managed to get it covered in my province (Ontario, Canada), so maybe I will post to ask about that.

My biggest fear is paying all that out of pocket and the fit is not great enough to make it work, due to the skill of the practitioner. Also, those are very expensive pieces of plastic that I might easily misplace or damage!

I am going to have a consultation later this month at a clinic. The receptionist quoted that the regular sclerals are $910 per eye, while the EPP is about $3750/eye. We'll see. Maybe I will put together some questions for the clinic based on info I find on this board, before I go there.

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.

[Hokucat]

ltree, another scleral option that might be less expensive than EPP are the BostonSight Sclerals (as opposed to the PROSE lenses), being rolled out by BostonSight starting this month to optometrists. Sounds like this will make Boston's lenses more widely available and affordable. Apparently practitioners do not need extensive training and will have at their office 22 sets of scleral lenses to use to fit patients. Below is 1) the press release Rebecca sent out in her Feb. 22 newsletter, in case you did not see it, 2) link to the BostonSight Scleral website, which includes a practitioner locator - so far looks like only in U.S., however there are two practitioners close to you in Ontario...in Minnesota (Stillwater and Rochester). Likely it will be available in Canada shortly.

http://nn.nnchamber.com/news/details...tem-01-25-2017

http://www.bostonsightscleral.org/

[farmgirl]

Hi Itree: I am sorry I just spent an hour responding to your post and it all disappeared at a click of the button and I can't stare at this screen long enough to rewrite it so will try again tomorrow, you understand I am sure....later....F/G

[ltree]

ltree, another scleral option that might be less expensive than EPP are the BostonSight Sclerals (as opposed to the PROSE lenses), being rolled out by BostonSight starting this month to optometrists. Sounds like this will make Boston's lenses more widely available and affordable. Apparently practitioners do not need extensive training and will have at their office 22 sets of scleral lenses to use to fit patients. Below is 1) the press release Rebecca sent out in her Feb. 22 newsletter, in case you did not see it, 2) link to the BostonSight Scleral website, which includes a practitioner locator - so far looks like only in U.S., however there are two practitioners close to you in Ontario...in Minnesota (Stillwater and Rochester). Likely it will be available in Canada shortly.

http://nn.nnchamber.com/news/details...tem-01-25-2017

http://www.bostonsightscleral.org/

Thanks hokucat, that is good news about the system that seems to address the concern of lack of practitioner skill and experience to give a good fitting. It says zero startup cost, so I hope that there are no regulatory issues that would prevent this from being made available in Canada soon!

[ltree]

Hi Itree: I am sorry I just spent an hour responding to your post and it all disappeared at a click of the button and I can't stare at this screen long enough to rewrite it so will try again tomorrow, you understand I am sure....later....F/G

Hello farmgirl, sorry to hear that you lost your post, I really appreciate that you spent your precious eye time in trying to help me. Just take your time because taking care of ourselves is the most important.

I am excited that later today, I am going to see an optometrist who says she can give me a more comprehensive exam to understand my condition, and possibly put in the plugs as well. She is also going to refer me to opthalmologists she knows has more experience with the condition, and get me more info on fitting sclerals locally.

On the plugs, I see concerns from this board about people whose eyes getting irritated, or whose plugs pop out. I really hope this works for me so I can be more functional again.

[Jahcpa]

I just sort of wanted to give a different perspective. I have been getting botox treatments every 2 months. They have given me my life back. I can drive again, walk with my eyes open, and pretty much live a normal life. It is not a cure and not perfect, but it has help so much.

It took a long time to finally get diagnosed with benign essential blepharospasm (BEB). I just could no longer open my eyes. My doctor (a renowned opthamologist) kept telling me it was a reflex of my eyes due to the dryness. I eventually found out that is not true at all. BEB has to do with uncontrolled spasms in the eyelids. It is a nerve disease rather than an eye disease. I always thought I closed my eyes because they were so dry. I have come to learn that they were so dry because I closed my eyes (spasmed) so much./

Just wanted to give you a positive. Good luck to you.

[farmgirl]

HI Itree: I am very happy to hear that your Dr. will refer you to a more experienced practitioner. I am dying to hear how you make out.

I am reading Jahcpa's response and it once again reminds us that what works for one doesn't necessarily work for another but until you try for yourself you will never know. You can't beat getting your life back, I wish my sister-in-law had been so lucky. Plugs are not going to make you worse if they don't help, as long as you don't get the intercanal type. Make sure you get the umbrella type that can be removed. Sclerals are not going to hurt if they don't help, they will just cost a lot and you will have had the hassle of getting them fitted but beyond that they are pretty harmless and of course unless you try you will never know.

I have to say that of all the things that I have tried the plugs have helped me the most, to the point that I had the uppers permanently cauterized and maintain plugs on the lowers, just in case I make a miraculous recovery. I would be so-o-o much worse without them.


I wish you luck and keep us posted....F/G

[Reggie]

The scleral lenses at the Boston Foundation for Sight have given me my life back as I've worn then since 2006. I am in Toronto and had to travel to Boston many times in the the early years. The doctors in Toronto at the time always downplayed how effective scleral lenses would be for my condition and no doc would write me a referral. Luckily I kept pushing and got my self in against the wishes of the doctors here. Now I am learning that there are doctors in Toronto (trained in the US) that make scleral lenses. I am in the process of trying to find a good doc to help with getting a new pair (over 5 years old). There is a possibility that the lenses could help you as well but you won't be able to tell unless you get them made.

[ltree]

Hello all, thank you for sharing here all your insight about this complex condition, gained through hard-earned experience.

Farmgirl: I have been wanting to post sooner but my blepharospasm has been somehow worse than before (more below). And thanks so much again for the encouragement to pursue getting the plugs, it might have taken me even longer to do so otherwise.

So, last Saturday, I had a long session with this helpful optometrist who is a lot more familiar with DES than all the practitioners I have seen so far. She put in collagen puntual plugs and I could feel an improvement almost right away, with the discomfort from dryness. It has been a week now and even with low himidity most of the time (20%), I definitely needed much fewer eyedrops on a daily basis, from once every hour or two, to just a 3-5 times a day. I still need my goggles and humidifiers etc.

HOWEVER, the blepharospasm seem to have gotten a lot worse than what I remembered, now that the sensation of irration is mostly out of the way. To a point I cannot keep my eyes open most of the time, unless I squint, keep one eye closed, or cover up one eye (these seem to be textbook symtpoms of this condition, btw). It feels that my eyes are extremely light sensitive, but the symtpoms still happen in low light conditions.

It is scary because I was counting on having the involuntary eye closure resolve, when the dryness/irritation gets better. Now it looks like it is not happening, and I read about people who has blepharospasm for life.

I highly doubt that the plugs would have caused that, but it is around the same time I started using steroid drops again (Durezol), two days in a row, when the bleparospasm seemed to have gotten a lot worse. I am even starting to consider the possiblity that some of these steroids/ preservatives/ other chemicals might contribute to the condition. I do remember clearly that back last October when my eyes first developed all these conditions, the day after I had my first opthamologist visit in which they used numbing /staining drops that my eyes reacted to, my eyes felt very light sensitive the first time ever, even though I had already been dealing with the dryness and irriration for 2 weeks by then.

So, any thoughts on this? That some of these drops might cause damage to the eye? And taht the damage might be long-lasting or permanent?

The nice optometrist booked me an appointment with a more promising opthamologist early next month, which I am very much looking forward to. Manwhile, the consultation with the private clinic on the sclerals is next week so I might as well go there and look at the options.

[ltree]

The scleral lenses at the Boston Foundation for Sight have given me my life back as I've worn then since 2006. I am in Toronto and had to travel to Boston many times in the the early years. The doctors in Toronto at the time always downplayed how effective scleral lenses would be for my condition and no doc would write me a referral. Luckily I kept pushing and got my self in against the wishes of the doctors here. Now I am learning that there are doctors in Toronto (trained in the US) that make scleral lenses. I am in the process of trying to find a good doc to help with getting a new pair (over 5 years old). There is a possibility that the lenses could help you as well but you won't be able to tell unless you get them made.

Hello Reggie, it looks like we have a similar mission now, so let's exchange notes if you want.

It is so tru drs are downplayig the importance of sclerals, like the opthamologist who only saw me for 15 mins and said I do not need sclerals. He fails to see that my life is turned upside down from this and I just want my life back. I never understand why many drs, who are supposed to be some of the most highly educated members of our society, would fail to see the need to stay with the frontiers of research and development, on health conditions that are currently not adequately managed. Instead, they seem to think that their training from X number of years ago would be all that is needed.

Ranting aside, I will be sure to share any useful info on getting sclerals in Toronto, in your other post, when I have a chance. Also, are there any good opthamologists or clinics that you can recommend? That would be a great resource for those of us north of the States. It had been terrible having been sent back and forth to specialists and tests that turned out to not have helped much at all.

[ltree]

I just sort of wanted to give a different perspective. I have been getting botox treatments every 2 months. They have given me my life back. I can drive again, walk with my eyes open, and pretty much live a normal life. It is not a cure and not perfect, but it has help so much.

It took a long time to finally get diagnosed with benign essential blepharospasm (BEB). I just could no longer open my eyes. My doctor (a renowned opthamologist) kept telling me it was a reflex of my eyes due to the dryness. I eventually found out that is not true at all. BEB has to do with uncontrolled spasms in the eyelids. It is a nerve disease rather than an eye disease. I always thought I closed my eyes because they were so dry. I have come to learn that they were so dry because I closed my eyes (spasmed) so much./

Just wanted to give you a positive. Good luck to you.

Hello Jahcpa, thank you for your valuable perspective as well. That is pretty much all I want right now - to have my life back, be able to do the basic things you can do.

It is a bit hard to understand how the eyes can get dry by closing so much. Not doubting you, just curious. I do agree it is a neural issue at this point.

So, was it a neurologist who finally gave you a proper diagnosis? Also, did your dry eye symptoms get improved or affected with the Botox? It's good you find a way that makes it mangeable for you.