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Preserve our Eyes, not our Drops!

 

 

 

 


      

 

Testimonials: Dry Eye

 

Sara (UK)

My name is Sara, I am 22 years old from the UK. I have been suffering with moderate/severe dry eye for 3 years. I started wearing contacts when I was 14, and I found them perfectly comfortable. By 17 I noticed that contacts were becoming more and more uncomfortable, so I only wore them on a special occasions/ nights out. Eventually I stopped wearing them altogether when I was 19. I would like to add that this ‘mild’ dry eye did not affect me in the slightest and my eyes still felt normal when I took the contacts out. 

All this changed, when I went on antidepressants for 1 month. Was I to know this would dramatically change my life for the worse?  

During this month I woke up one morning and my eyes were stuck together, they were that dry. My eyes had become so extremely dry, the constant array of symptoms included: burning (like cutting onions), constant feeling of air hitting my eye as my tears were no longer providing protection from the environment, stinging, mucous and watery eyes, blinking about 10 times faster than normal (imagine having your wind screen wipers on full when the rain is only spiting), severe dry feeling and sticky feeling, and gritty- as if someone had just chucked a bucket load of sand in your eyes.  

During the first month I tried every brand of artificial tear I could get my hands on (some my GP gave me), but nothing helped, they had the effect of wetting my eyes but did not give any desired comfort, the dryness would subside but then come back even worse 30 seconds later. I found this mild relief very unsatisfactory. People cant appreciate how bad dry eye can get as the term ‘Dry eye’ doesn’t sound that bad, but I can assure you the term ‘dry eye’ does not do the condition justice. 

Just Before this dry eye bomb shell I was a completely normal 19year old, I had just been travelling in Australia for 1 year with my ex boyfriend, I had no other health problems, I am actually fit and healthy, I had plans for university and more plans to travel Asia.  

Then it all changed. The dry eye was having such a profound effect on the quality of my life, I was unable to socialise with my friends anymore, because of the constant pain and irritation. Making eye contact was particularly hard, with the uncontrollable blinking; making conversation was even worse, trying to concentrate when your eyes are screaming at you is not a walk in the park. I started staying at home a lot, and wearing swimming goggles to watch TV and talk to my online community of dry eye sufferers. Even simple activities like reading and watching TV became a struggle. I had to cut down my hours at work. My ex boyfriend decided I was not the person I used to be. Despite all this I still tried to remain optimistic and hope it would improve so I went to university, however I found lectures and socialising so impossible that I couldn’t wait to get back to my room and slap a wet wash cloth on my eyes, or put my goggles on.  

I got so fed up with artificial tears and plugs which my optometrist let me try (but which also gave no relief) that my GP referred me to an eye specialist on the NHS. Naively I expected that they would be able to help me, maybe give me some medication for this horrible disease which was not showing any signs of improving. Other people with health problems i.e. diabetes patients take one medication/injection a day to control their symptoms, whereas dry eye sufferers need to constantly (every 5 minutes if need be) use drops to control their symptoms and pain with minimal effectiveness. As these are both chronic conditions surely they will give me something else, right? Wrong! I waited 3 months for the appointment, only to be palmed off with yet more artificial tears and plugs, of which I had already tried. Despite the constant pain I was in, the eye specialist said ‘dry eye is no big deal you just use artificial tears.’  I asked about Cyclosporine, which is the main stream treatment for dry eye in the US, under the name of RESTASIS. It was dismissed instantly. I asked about Autologous Serum drops, also dismissed. I came away feeling even more depressed than I was before I went in. 

Due to my bad experience on the NHS I decided that I better go private and pay for treatment, which I didn’t mind as this dry eye surely does warrant the money. I saw a eye specialist at a BUPA hospital, but I found exactly the same attitude regarding dry eye: ‘dry eye is no more than a nuisance, you wont go blind so what’s the big deal’ he was really unhelpful, and palmed me off with steroids and told me not to come back. Also, he persisted that despite my symptoms I didn’t even have dry eye and upset me so much that I started to cry, which he went on to comment ‘see you cant have dry eye, you can cry.’ Just for the record, crying is reflex tearing which is a separate function to normal tears. 

All in all I have seen 5 eye specialists who took my money but did not do much to help me. I found a general lack of understanding and knowledge regarding dry eye across the board, and an unwillingness to help or seek solutions. After speaking to many other sufferers in the UK, I realised that I was not alone when they told me of their identical experiences. Most had seen at least 5 eye specialists and were very unsatisfied. There are dry eye treatments out there, Cyclosporine, Autologous serum drops, sclerals, etc. It just seems access to dry eye treatments in the UK is almost impossible.

I became so frustrated with the situation here in the UK with access to treatment and eye specialists that I had to take matters in to my own hands: I bought RESTASIS from an online website, and travelled abroad to receive get a better diagnosis and better treatments. 

Dry eye has been a great financial burden on me, I have probably spent at least £4,000 so far and I am not even close to being comfortable. I am constantly worried about the future, as I am only 22, I have had to put my life on hold, I can’t even imagine going back to university, pursuing a career, having a relationship or starting a family until I find a treatment which makes this severe dry eye more manageable. Not that I don’t try, my last attempt at a relationship lasted one week as doing things that couples do i.e. restaurants/going to the cinema/pubs/clubs do not agree with dry eye, its no fun. 

All this and I am not even considered by doctors as ‘that severe or that bad’ I have severe symptoms but I don’t have corneal ulcers, scarring, erosions etc. My heart goes out to these people, especially if they are not receiving proper help.  

Well that’s a summary of my story, I won't bore you with any more details because I could go on and on about the struggles I have faced with dry eye.  Thanks for listening.

 

Testimonial Neil (USA)

[Message from Keratos: since we don't have a category on iatrogenic dry eye yet, we have posted this testimonial here. however, bellow you'll read an obvious case of preservative-induced dryness and OSD]

I came to My Doctor in 1998 WITH a hypothesis for what was causing me years of chronic, severe eye pain: (ciliary or) accommodative spasm -- a charley horse of the focusing muscles of my eyes.  Based on his exam, and review of my lengthy chart, he said we'd "treat it empirically," prescribing nightly use of "cycloplegic" (dilating) eye drops.  Some months later, one day I woke up with significantly improved vision AND a dramatic reduction in pain.  My diagnosis was correct.
 
In addition, he performed my third strabismus surgery to align turned eyes. This was contributing to the problem.  I was then told to stay on the drops, every other night, as "maintenance."
 
Once "fixed," I went immediately looking for work, since I had been without work for five years.  I took various temp jobs, the last of which resulted in a permanent position with an e-commerce company. 
 
But the workload was intense ... and pure paperwork and computers--the most difficult thing for my weak eyes ... and within months ... the spasm was returning.  My doctor said I should switch to nightly use of the cycloplegics. This was enough for a while, but ... somewhere in that first year back to work, I begin to suffer severe stinging, burning, and dryness in my eyes. 
 
I complained of this to my doctor who referred me to the clinic's oculoplastic surgeon, who said, in effect, "Yes, you have very dry eyes."  He recommended plugging my lower "puncta" (tear drains).  This offered minor help, but the dry eye problem became steadily worse.  He then recommended upper puncta plugs. Somewhere in the early stages of the dry eye complaints, my doctor prescribed a course of Restasis (ophthalmic cyclosporine) and something called Lacriserts.  He may have prescribed other treatments for the dry eye pain, but I don't recall.  None of these treatments had any positive effects.  He never said, "I wonder if it's the drops."
 
Meanwhile, the demands of my 80+ hour a week, computer based job were killing my eyes.  My doctor prescribed stronger cycloplegic agents to keep the spasm at bay.  Simultaneously, I continued to suffer ever-worsening dry eye burning, stinging, and pain.  The oculoplastic surgeon recommended punctal cautery: surgical "welding closed" of the tear drains.  We did first the lowers, then the uppers.  This brought a tiny measure of incremental relief, but ... very soon, the problems got worse.
 
Other docs were looking at me for a potential LASIK (or similar) surgery, but ... based on my worsening dry eye symptoms, I never proceeded.  Refractive surgery is KNOWN to induce, or aggravate dry eye ... and I was entirely risk-averse ... especially since I had NO CLUE what was making the dry eye so severe.
 
Again ... somewhere in there ... we're probably in 2004 by now -- nearly four years after starting work and nearly six years after starting the cycloplegic drops ... the dry eye problem continued to get worse. 

My doctor prescribed Atropine--the strongest cycloplegic drug available.  This helped the cramping issues, but seemed to make the 'surface' pain worse.  Based on MY cursory review of literature, it seemed that Atropine had a "bi-phasic half life," so I e-mailed my doctor that I would like to begin using it twice a day.  He "signed off" on that.
 
Fast forward a bit to August of '04.  The glare and fatigue from being permanently dilated and trying to read is brutalizing me, and the dry eye pain is nearly crippling.  I'm soliciting the leading experts in the world for opinions on my case.  Based on recommendations from my doctor, I seek out Melvin Rubin, retired ophthalmologist and guru among eye docs. 
 
In August 2004, Dr. Rubin told me--in addition to other things--to STOP using cycloplegics immediately ... that they are NOT meant for long term use ... and that the "preservatives in them can damage the corneas."  I stopped using them immediately, having NO desire to compromise the health of my eye (but assuming I was lucky and hadn't ALREADY DONE any damage.  I didn't make the connection between Dr. Rubin's comments and my current situation).
 
So ... with the underlying accommodative issues no longer manageable, I try to manage, but unsuccessfully, my job.  I am declared permanently disabled ... through age 65.

 
I try to switch to Plan B: live a life outside--biking, hiking, skiing, travel, running, windsurfing, etc.,--NO reading and NO computers--but ... very quickly, I realize that EVERYTHING I do hurts.  Being in moving air, heated areas, air conditioning, ventilated buildings, the grocery store, a car with a/c on, sun, wind, sand, hiking, biking, rollerblading, dust .... EVERYTHING hurts ... and my vision is far more variable then ever before.  We were in CONTRACT to buy a home in Fort Collins, Colorado, but--at the last minute--I decided that I could NOT live there because of the low humidity and apparent inability to manage the ocular surface issues.
 
While looking to my doctor for answers and seeking medical advice on what's happening (trip to Denver for evaluation for Autoimmune diseases, internal medicine, endocrinology, infectious disease, etc., etc.), I happen to remember Dr. Rubin's comments about the preservatives damaging the cornea. I look in the medical literature and it is FULL of documentation that--indeed--cycloplegics themselves, AND, more particularly, the Benzalkonium Chloride used to preserve many eyedrops ARE KNOWN TO cause dry eye and severe corneal damage. This has been well documented for several decades and became immediately apparent in two minutes searching on PubMed.
 
My doctor balked at the theory, but referred me to the clinics corneal specialist (whom I'd seen before).  The corneal specialist admitted to having no expertise on the effects of BAK, but suggested I go to a leading researcher for biopsy and further pathologic/histopathologic studies. He thought of a guy in Texas, whose name =I= knew: Steve Pflugfelder, but ...
 
I determined who the foremost authority on the subject was: Pr. Christophe Baudouin, in Hopital Quinze-Vingts, in Paris, France.  Reaching out to him, he said that--based on my history and description of symptoms, it sounded like a clear-cut case of BAK-induced toxicity.  I asked if I could be seen in his clinic and arranged to do so. Baudouin examined me twice--once in July and once in September--performing tear analysis and confocal microscopy, primarily.  Based on everything he saw, he concluded that:
 
 1) I suffer from "corneal hyperesthesia" due to an abnormally large number of hyperactive corneal nerve endings;
 
 2) That the apparatus that PRODUCE the three tear components (meibum, aqueous tears, and mucin) are all damaged;
 
 3) That my eyes show the pathological markers of infection that is non-responsive to trials of antibiotics;
 
 4) That my eyes show the pathological markers of acute inflammation that is non-responsive to trials of preservative-free non-steroidal anti-inflammatory drops;
 
 5) That my eyes are clinically "severely dry;"
 
 6) That it is his opinion that ALL of this was the result of long-term use of cycloplegic drugs, primarily the preservative, Benzalkonium Chloride, and that this damage is WELL documented in the literature;
 
He has no further treatment recommendations at this time, and deemed the damage "irreparable."  He suggests that I avoid heating, air conditioning, dirt, dust, dry places, high places, etc.  In short, he has no idea where and how I will make a life .... ESPECIALLY considering the severity of the addition of the underlying problems for which the drops were ORIGINALLY prescribed.
 
At this point, my doctor is recommending additional specialists (Ocular Immunologist, Harvard) and that I give strong consideration to the following surgeries:  
 -clear lens extraction/intraocular lens implantation
 -conjunctival transplant
 -corneal transplant
 -stem cell transplant
 -additional strabismus surgery, perhaps every few years, to maintain alignment
 
All of these surgeries carry inherent risks, INCLUDING the likelihood of exacerbating already critically dry eyes.  None of them will fix the dry eye problems OR the "corneal hyperesthesia" that Baudouin thinks might be the most damning insult of all.  Some of them--though hugely compelling to me, at this point--are pretty well contraindicated BECAUSE OF long-term exposure to BAK.
 
Dr. Baudouin is of the opinion that the risks of ANY further surgery outweigh the potential benefits.   
And now I'm screwed.
 
My underlying accommodative and binocular function problems were declared disabling to begin with.  And now this.  I don't HAVE a Plan C.  I can't stay inside, and I can't stay outside.  I've got nowhere to be where I'll be okay.  I suffer chronic pain, dizziness, fatigue, cramping and nausea from the underlying issues--GREATLY exacerbated with any nearwork.  Nearwork, for any length of time, causes my eyes to "lock up" in a "pseudomyopic" state, AND alters my eye alignment, causing double vision.
 
But the environmental issues may actually be WORSE: I'm highly light sensitive, intolerant of wind, dust, air conditioning, and heating.  Low humidity (eg, airplanes, mountains) is brutally painful and medically risky. On top of all of this, ocular surface diseases like mine INDUCE variable and blurred vision--the LAST thing that MY eyes need.  It simply makes the underlying issues worse.   At this point, for example, I'm having great difficulty with night driving and may have to stop entirely. 
 
The ONLY additional known treatment that has been unreservedly recommended to me at this point it the Boston Foundation for Sight Scleral Lens Device (about $11,000 in total).  I WILL be traveling to Boston in January to pursue this option.
 
Since all of this has happened, I have been a patient at a Pain Clinic, and am receiving ongoing treatment for depression.  I cannot figure out any way to make a LIFE at this point ... much less a living.
 
CONSUMERS: please avoid BAK-preserved drops where there is an alternative.
 
HEALTH CARE PROFESSIONALS: please don't prescribe drops preserved with BAK when there is an acceptable alternative.  If there is NOT an acceptable alternative, please contact the pharmaceutical companies to urge them to create one AND monitor your patients closely for signs of ocular surface damage or dry eye syndrome.
 
PHARMACEUTICAL COMPANIES: please explore options for preservative-free ophthalmic medications.
 
Thank you,
 
 Neil
 California
 USA

Remember that additional testimonials may be available in both French and Portuguese if you read any of these languages.

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