Not fitting well and was expecting more customization - does this make sense?

[ltree]

Hi Vikki. I've been wondering how you've been coming along, and think of you often. Sorry to hear you are still struggling.

So you just started seeing the main doctor now from the scleral website versus the associate? Hopefully that will help some in getting the lens more comfortable. I was surprised to hear you are still in the fitting process...I thought your fitting period ended a few months ago? You are certainly determined. But it's good you are also being realistic about just how long you can wear the lenses, at least until your condition improves.

The compounded lacosimide eye drops do seem to help those with corneal neuropathy. However, I just wrote in a lacosimide thread you posted on today, that this ingredient does not appear to be currently available for compounding anymore. At least as of earlier this year when Fitch was looking for another compounding pharmacy to make them, after the pharmacy he was getting them from, Leiters, closed down. Perhaps connect with Fitch to see if he has since made headway, or if he has found alternate drops that help.

http://www.dryeyezone.com/talk/forum...ps-please-help

Thanks for the update. Hope things start to get better, even if it's just baby steps.

Hello Hokucat. Thanks again for your caring words..

Yes, I am still in the fitting process after all these months - as said in a post I just wrote, it looks like the trial period restarts with every new manufacturer.

Now I am disappointed about the unavailability of lacosamide, after the initial excitement when I was convinced it would help with the most disbilitating symptom I have right now (photosensitivity). Am waiting to hear back from the compounding pharmacy who said they wrote a few manufacturers, and am prepared I would hear a negative.

On the other hand, I see there are other 2 medications that are used a related study, with favourable results, although I do not see references of them being prescribed for this purpose. I brought this up when I saw the associate optometrist today, but am not positive I would be able to get it:

**https://www.aao.org/eyenet/article/a...eal-neuropathy
**http://bostoneyepain.org/patients-as-teachers/
http://australiandryeye.webs.com/app...ve-as-a-razor-

... right scleral lens was medicated with sterile, non-preserved bupivacaine 0.004%. Moments after its open label insertion she reported total resolution of pain and photophobia in that eye


...Subsequent daily treatment of both corneas with anarbitrarily chosen mixture of ropivacaine 0.005% andlacosamide 0.05% in the scleral lens chambers strikingly suppressed symptoms of photosensitivity, DELP and hypersensitivity to fumes. This analgesic effect continued for 2 years at which time the drugs in the scleral lenses were deliberately discontinued. Pain and photophobia returned to its previous levels within 2 weeks. Reinstitution of the treatment again suppressed the neuropathic symptoms.

[ltree]

Hi ltree. I've been reading your posts. I am in Ontario (Toronto) too. Would you mind giving more details on your procedure and which dry-eye clinics or doctors you goto? Also, where and how do you get serum eye drops in Ontario?

My post is here:
http://www.dryeyezone.com/talk/forum...tasis-and-more

and I'm getting pretty desperate at this stage. Thanks!

Hello DDE. Welcome and I must say you are quite young to have had suffered with this for years. Hang in there and hopefully my resources can be helpful.

I took a look at your post and see that you have had some comprehensive tests and treatments done already (I may have questions for you later)..

While reading through your posts, I had been trying to see how your symptoms compare to mine so I can give you the most relevant info.. Honestly I am not too familiar with MG issues - I do not think I have thick secretion although all the drs I asked never gave me a solid answer on my MG status, only one mentioned they were a bit "turgid" and prescribed scrubs and compresses. I do not see breakthrough improvements from those but I keep doing them.

Like you, I have tried many of the suggested and prescribed drops and the DIY scrubs, compresses, blinking, supplementation etc. I am hesitant with IPL, Lipiflow, probing etc. because when I asked, drs generally said they are not sure and I can and see. I agree with your comment that the specific clinics will simply try to sell you their services.

Sclerals:
I had been somewhat disappointed because when finally deciding to bite the bullet to pay for this months ago, I never expected after so many refittings and manufacturers, I still do not have a comfortable fit (4 manufacturers, about 2-3 customizations each). In retrospect, I wonder if the pricier imprinting technology would have served me better, because it was so hard to find a reasonable fit. HOWEVER the sclerals and the serum tears had been the turning point when I was at my worst, and at least for now, I believe even if wearing/tolerating the lens 6 hours a day, it helps with my DES.

If you have had all the other treatments and haven't tried sclerals and serum tears, I highly recommend them - the tears are relatively hassle free to obtain. The sclerals, a major time commitment that I underestimated - 1 hr driving/visit, average 30 mins wait and 40 mins per appointment, 4 manufacturers, 2-3 customizations each (with a pickup appointment after each customization visit) - total 2.3hrs X 20 visits = 53 hours over the course of several months just for the scleral appointments!

So be prepared but maybe I am the worst case scenario so yours may be better.

Cost is $1400 fitting + $1800 lens (both eyes), although if you decide if does not work for you and return the lens within 3 months, you get the refund for the lens. It appears that the 3 month limit is for each manufacturer, and so if you try the lens from another one, you have another 3 months.

I went to the doctor in the Boston-trained practitioners list at Vaughan Family Vision (Dr T) Despite my experience, I feel that the doctor is quite experienced and caring about my situation. Am I allowed to post names? Let me know if you want to be PMed on that.

Serum Tears
I got them made at People's Choice Pharmacy in Richmond Hill, 40%, about $200 for a 3 month supply. The nurse to draw blood typically is available around noon, and you usually get an appointment within 1-2 days. The drops are made on site and available for pickup a few hours after your blood draw.

I have seen a handful of doctors that were not as helpful and knowledgable - if interested I can PM you and we can compare notes :-)

I see an optometrist where I get my punctal plugs - at Wilson Eye Care. She seems good with the procedure and helpful in general, and she appears to be more knowledgable on dry eye than others, with her visits from the States.

Let me know what else you'd like to know. Hope that helps and best of luck. We are dealing with a condition that is a true test of willpower.

[deep_dry_eye]

Hi ltree. I've been reading your posts. I am in Ontario (Toronto) too. Would you mind giving more details on your procedure and which dry-eye clinics or doctors you goto? Also, where and how do you get serum eye drops in Ontario?

My post is here:
http://www.dryeyezone.com/talk/forum...tasis-and-more

and I'm getting pretty desperate at this stage. Thanks!

[Hokucat]

Hi Vikki. I've been wondering how you've been coming along, and think of you often. Sorry to hear you are still struggling.

So you just started seeing the main doctor now from the scleral website versus the associate? Hopefully that will help some in getting the lens more comfortable. I was surprised to hear you are still in the fitting process...I thought your fitting period ended a few months ago? You are certainly determined. But it's good you are also being realistic about just how long you can wear the lenses, at least until your condition improves.

The compounded lacosimide eye drops do seem to help those with corneal neuropathy. However, I just wrote in a lacosimide thread you posted on today, that this ingredient does not appear to be currently available for compounding anymore. At least as of earlier this year when Fitch was looking for another compounding pharmacy to make them, after the pharmacy he was getting them from, Leiters, closed down. Perhaps connect with Fitch to see if he has since made headway, or if he has found alternate drops that help.

http://www.dryeyezone.com/talk/forum...ps-please-help

Thanks for the update. Hope things start to get better, even if it's just baby steps.

[ltree]

Hey i tried PROSE as well and had a similar experience. The doctors tell me that i have "dry eye that's symptoms does not match the amount of dry eye." I went to Boston and had the lenses fit over a two week period. The doctors were great and listened to everything i had to say about the fit. Over that period the lenses were fit perfectly for my eyes but they are just not comfortable in my eyes. I don't necessarily feel the edges or a pressure sensation which was one of the problems early on in the fitting process they are just uncomfortable. It is hard to describe why they are so uncomfortable but i cannot tolerate them in my eye for long periods of time. They feel unnatural in my eye unlike a soft contact lense the feeling between my eye lid and the lense is disorienting. When i try to work with them in which involves a lot of movement (bussing tables) I am clumsy and hesitant. I cannot tolerate them in my eye for long periods of time but it is hard to pinpoint the exact feeling that i cant stand all i know is that they effect my mood negatively. I spent a lot of money to try these contacts as an option for my debilitating dry eye but believe they are just not the option for me. I struggle with a lot of light sensitivity which is the main problem and would say that the PROSE did not necessarily help with it even though I spoke with people that had similiar conditions that the PROSE had worked wonders.

Xiidra and plugs have helped me next i will try bandage contacts with lacriserts

Hello HSK,

I hope at DEZ your experience is made more tolerable. I am so grateful for caring DEZ members such as hokucat :-) It had been such a difficult experience especially because not even my closest friends could understand how it is like.

Apart from that your lens were fitted at Boston and mine in Toronto, your experience sounds a bit similar to mine. It is hard to describe but overall it feels hard to tolerate having them in my eyes (however without them my dry eye symptoms are worse in the office). After about 6 hours when I finally take them off, I feel so much better.

It must be difficult doing bussing in that condition.. and how bad is your photosensitivity? For me, even outdoors in cloudy weather and in sunglasses, I could not keep my eyes open for long, and have to resort to keeping one eye closed so the other can stay open for a few mm - and peeping through that one eye.

Today I am excited to learn about using lacosamide drops in scleral lens that MAY help with photosensitivity - for those with corneal neuropathy. Some of the patient profiles described sound like mine (I had LASIK) so I am going to ask my doctors if they are available to try:

**https://www.aao.org/eyenet/article/a...eal-neuropathy

**http://bostoneyepain.org/patients-as-teachers/

http://australiandryeye.webs.com/app...ve-as-a-razor-

[ltree]

Hello Hokucat (and HSK)..

First, thanks for the caring response and sorry for not having replied, basically not around for the last 2.5 months. I hope it did not leave you wondering too much... I had been still struggling with the same - DES and extreme photosensitivity and blepharospasm... Still going to work and struggling with day-to-day living, and not feeling hopeful as I got asked to try one scleral lens manufacturer to another to another.

I am now on my 4th lens manufacturer! And now back with the same Dr. that is on the scleral lens website (not seeing her associate anymore). She appears to be quite experienced so I do not understand why it had been such a frustrating experience for me.

I had been taking your advice on adding my hyaluronic acid drops into the lens, which seems to help a little. Recently added the Celluvisc too, my optom. said the viscosity may help keep the lens moving too much thus further irritating my eyes - it looks like my photosensitivity makes me blink strongly a lot, which may cause the lens to further irrirate because of movement and rubbing. They didn't quite help, but "piggybacking" regular daily disposables before putting on the sclerals helped somewhat.. until it appeared that the preservatives in the dailies started to contribute to additional irritation.

Also, recently it appears that my eyes are feeling more "raw" - and even the serum tears and hyaluronic drops do not seem soothing enough. Rinsing with tap water (with eyes closed), steam and hot compresses help somewhat. I am worried that even the most benign drops might be contributing to irritation.

I might just have to accept that for now, I can only wear the lens 6 hrs/day.

And yes, I am still holding my job working at the computer all day long. I know that is not helping, but for now I do not have much option.

The reason why I am back online is because I came across some info on lacosamide drops, that may help with photosensitivity/blepharospasm.. More on that later.

[HSK2020]

Hi my Schirmer score is around 5 with plugs and taking xiidra. This is up from around 1 when this problem started. I dont know what TBUT is.

I have never tried putting drops in but it doesnt seem to be the solution that is uncomfortable as much as the contacts but i will try. Inserting artificial tears normally while contacts are on does help. The sceleras dont seem to help with light sensitivity which is my main problem.

[Hokucat]

Hi HSK2020. Sorry your sclerals are uncomfortable. There was a period where my eyes started getting really dry and my TBUT and Schirmer scores got really low, my lenses were getting really uncomfortable to wear. At my worst I had zero tear film and could no longer tolerate my lenses at all. But when I started getting bettter after probing and some diet changes, and got some tear film again, I was able to wear my sclerals comfortably to help with the remaining dryness.

Do you know what your TBUT and Schirmer scores are? I also had light sensitivity, especially to artificial lighting like fluorescents, which the sclerals did not help with.

Have you tried using a couple drops of preservative free artificial tears in your sclerals with the saline before inserting them? Many people including myself find saline alone is not comfortable enough. A favorite thicker PF drop is Refresh Celluvisc, which seems to provide extra cushioning, or try your favorite drop in the lens. I personally prefer using Genteal Tears for this, which is a thinner drop but I find soothing in my sclerals.

[HSK2020]

Hey i tried PROSE as well and had a similar experience. The doctors tell me that i have "dry eye that's symptoms does not match the amount of dry eye." I went to Boston and had the lenses fit over a two week period. The doctors were great and listened to everything i had to say about the fit. Over that period the lenses were fit perfectly for my eyes but they are just not comfortable in my eyes. I don't necessarily feel the edges or a pressure sensation which was one of the problems early on in the fitting process they are just uncomfortable. It is hard to describe why they are so uncomfortable but i cannot tolerate them in my eye for long periods of time. They feel unnatural in my eye unlike a soft contact lense the feeling between my eye lid and the lense is disorienting. When i try to work with them in which involves a lot of movement (bussing tables) I am clumsy and hesitant. I cannot tolerate them in my eye for long periods of time but it is hard to pinpoint the exact feeling that i cant stand all i know is that they effect my mood negatively. I spent a lot of money to try these contacts as an option for my debilitating dry eye but believe they are just not the option for me. I struggle with a lot of light sensitivity which is the main problem and would say that the PROSE did not necessarily help with it even though I spoke with people that had similiar conditions that the PROSE had worked wonders.

Xiidra and plugs have helped me next i will try bandage contacts with lacriserts

[Hokucat]

Hi ltree. Sorry to hear the scleral fittings are not going well.

At this clinic, did you ever get to see the specialist listed on that Scleral Lens Society website, or did you continue to see the associate? Am wondering if your practitioner did not have enough expertise fitting sclerals. My sclerals are 18mm which I believe are more the typical size, and I've read larger sclerals can be more comfortable, but everyone is different. If you think the experience level of the practioner is the issue, finding a more experienced practitioner may help.

Did you try putting a couple drops of preservative-free artificial tears in the lenses and rolling it around to cover the entire inside of the lenses, before adding the saline when inserting? Several people find using Refresh Celluvisc helps make the sclerals more comfortable and they can wear them for longer periods, and I've read in this forum some people use more than a couple drops of it in their lenses. Personally I find Genteal Tears (formerly called Tears Naturele) soothing in the lenses.

Have you also tried using artificial tears while wearing your lenses? This may help with the friction from your upper eyelid. For saline, are you using Purilens preservative-free saline?

It may be that given the current condition of your eyes, you just might not be able to wear sclerals at this time. That doesn't mean you won't ever be able to wear them, but your condition may need to improve some first. There was a period of several years when my eyes were so dry, I could not tolerate wearing the lenses, it was uncomfortable as soon as I put them on. After I started getting a little better, I was able to start wearing them again, but by then I needed to get new ones to update for the power.

Your work environment may indeed be contributing to your eye problem. I recall you use the computer a lot? Excessive computer use was likely a secondary cause of my MGD. Unfortunately, if you have to extensively use the computer like I did, it's a vicious cycle and difficult for your eyes to get better. I had to quit my job. I know it sounds unreasonable, but is there any way you can take a break from work for awhile (perhaps short term disability, which at least in the U.S. your doctor needs to approve), or change to a job with less computer use?

I hope it all works out. Been wondering how you were doing. Do you still have the blepharospasms?

[ltree]

Hello all.

It has been about 3 months since I started to get fitted for sclerals. The relief from whatever that irritated the surface of my eyes was wonderful when I have them on, but my tolerance for them went down when I tried wearing them on a daily basis - from 8 hours down to 4 hours if I wear them for several days in a row.

My first pair was 17mm and my upper eyelids got quite irrirated from them. I was told either they moved around too much, or my eyelids are "tight" because I am of Asian descent, and the lens caused excessive friction.

After 2-3 alterations, the eye doctor suggested a smaller size (16mm) by another manufacturer. While the new ones are being sent over, she also suggested trying to piggyback a regular lens (Oasis) in each eye before putting on the 17mm sclerals, to see if it will give a better fit. Surprisingly, it helped, although my tolerance still tended to go down when wearing a few days in a row. I suppose it helps the lens from moving around too much.

The 16mm's were less irritating to my lids, but again, I thought I could do better. So I was surprised when told the 16mms cannot be customized further for better fit. I am told they fit well according to her inspection. Also, my eyes feel irritated after 4-6 hours of wearing and I had to take them off, although often the lens would still have solution on them.

I was also offered to try the mini hybrids (15.5 mm I think) when I asked about them, after hearing about it from another optometrist. I only tried them on for about 10 mins so did not have a fair chance to evaluate, but the fit felt weird - if given the chance to wear them longer, it might settle to feel more normal, or...

So, it sounds like I am at the end of the road for sclerals, from this eye clinic. I used to wear regular contacts 10+ years ago and compared to then, the sclerals give the sensation that there is always something in my eyes that i have to tolerate. I suppose soon, I need to decide whether I should keep them or get the refund on the lens (minus the CAD1400 fittig fee), or if keeping, which one to keep.

Although hard to prove, I believe it is my work environment that is contributing to the majority fo my eye irriration, and the lens do help protect my sclera from that. A smaller size, to me, means less protection. What should I do? Should I settle for one of these, or look further?