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Neil (USA)
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 acceptablealternative. 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
K (France)
I've already written my testimonial
regarding my main disease "neurotrophic keratitis" but I also have
severe allergic and symptoms similar to atopic keratitis. In my case
allergy and tobacco are the two main adverse factors contributing to my
disability. Since i got better care in Paris and Rouen, including
cyclosporine and scleral lenses, my situation is better... or should i
say less worse. One big issue remains that affects all my treatments
and prognostic: severe ocular allergy that last as long as 5 or 6 months
every year (I'm mainly allergic to several tree pollens: plane, ash,
flaxinus, etc and graminea: grasses, etc).
During that period every year, it's
a permanent fight to try to maintain the sclerals to keep my ocular
surface healthy. however, allergy and allergic swelling seriously
complicates my task. Another aspect that seriously complicates my
situation is that I need to avoid preservatives in eye drops. If it
weren't for preservatives in eye drops I would probably have a much
better life and some control over allergies. the fact is that the new
ocular antihistaminic as absurd as it may seem all contain benzalkonium.
I have had some severe reactions to thimerosal but more than that it's
preservative cytotoxicity -particularly detergent ones like BAK - that
I've learned to fear. it's absurd because preservatives increase
inflammation which in turn is an important vector of inflammation.
Moreover, preservatives are toxic in long-term use so how can one treat
seasonal allergies which such drops? Cytotoxicity of preservatives leads
to epithelial cell death thus increase the main problem in my disease
(lack of cell regeneration). Drops are meant for unhealthy eyes but seem
to be made for more than healthy ones...
Anyway, I used to use BAK
containing drops every year to help me control over allergies and some
control over my life (in particular professional life) however, after a
few days of being better, I usually had superficial keratitis, sometimes
even ulcers each time I used BAK-containing drops -the last one I used
was Opatanol) for more than 5 or 6 days. Some drops did help during the
first 3 or 4 days but beyond it usually lead to corneal erosions. These
corneal erosions sometimes lasted as much as 15 days during which i
could not work. So in the end it only made matters worse... and it's
just not worth it. I've stopped using them but I do not have a solution
to control my severe allergy that in combination my main disease do not
enable me to open my eyes during some periods of the year. At least by
stopping the BAK containing drops (and using the older and less
effective drops that are usually commercialised in single use vials...
more expensive but worth it) I've managed to reduce at least 75% of my
corneal erosions even though I do not have a solution to lead a normal
life. If I had continued to use BAK-containing drops, and considering
the damage cause by BAK, the amount of corneal scarring would very soon
lead to complete loss of sight in one of my eyes. Only systemic
cortisone seems to help but that long term consequence of that is
glaucoma or cataract... So I rinse my eyes frantically to wash away the
allergens as much as possible. I do spend a fortune in preservative-free
saline serum single use vials and some antihistaminics.
I do love winter and snow... guess
why?
I'm always amazed by the little
attention severe ocular allergy gets and particularly atopic and vernal
keratitis... It's truly a disability to work with corneal erosions and
yet no-one seems to care. It must have some impact on productivity
right? Same thing for preservatives, I still get prescriptions
containing BAK and sometimes docs are surprised when i tell them that a
particular drop contains BAK. "Is that true? If so you're right you
should not use it". Ok, then but what should I do besides what I'm
doing: preservative free vials and constant rinsing?
Even though docs are increasingly
aware of preservative use risks, they have very few alternatives. And
that's my current dilemma that may cost me... my eyes.
To finish in a lighter tone, I must
that there has been a serious improvement in terms of ophthalmologists'
awareness of this preservative paradox. More and more, I don't even have
to mention it, docs will automatically suggest that I use preservative
free drops only... by themselves. Before, I used to intervene on this
before they agreed. At least the problem is now identified... we have
identified the solution to fix this: make all ocular drops available in
preservative free versions. So let's do it.. what are you pharmas
waiting for? to be sued?
Steve (Sweden)
As a newly-diagnosed dry-eye sufferer with Blepharitis, I was advised
only to "try all the over-the-counter drops I could" until one seemed to
help. This was in Sweden where the quality of care for chronic
conditions is quite poor, and finding a specialist who can see you
within a year is sometimes difficult. So I couldn't just find a better
specialist.
One of the few drops that felt soothing when first applied was Visine
Night, a European OTC product which includes Benzalkonium Chloride in
known cytotoxic concentrations. I didn't know this, all I knew was that
my eyes often felt worse in the morning than at night when I put them
in, and that the dry-eye was slowly worsening. Worse, I was trying
other drops in the daytime, and even the most promising ones were
painful to use.
When I finally found out about the dangers of BAC, I trashed the Visine
Night and looked around for a preservative-free alternative. As an
unexpected side benefit, I found that some good day drops that had been
too painful to use, were now quite soothing!
Over the next two months I saw a noticeable improvement in my dry-eye
and Blepharitis symptoms, and can now use several eyedrops that were
previously too painful. I hope I am healing from the damage caused by
the preservatives!
Steve,
Stockholm, Sweden
Toril (Norway)
Testimonial about using a drop with
preservatives:
I have autoimmune-related dry eyes, and for treating inflammation in my
eyes my eye doctor put me on
Vexol. Vexol is a cortisone drop, preserved with the preservative
Benzalkonium Chloride. Unlike many other
cortisone drops, it’s not likely to risen the ocular pressure with
extended use, and is therefore considered as safe for long term
treatment. The plan was to use it for 3 months before starting treatment
with Restasis (ophthalmic cyclosporine), as cortisone works faster than
cyclosporine.
The first couple of weeks my eyes felt better than...
in a long time, and looked whiter and less inflamed as well. The drop
burned a bit upon installation, but it went away
within some minutes. Then, after using the drop for about 1 month or so,
I noticed that the conjunctivochalasis I’ve got in both eyes got worse,
and the whitening effect the drop seemed to have in the beginning was
getting less "effective". This continued for a
while, and after Vexol for 2 months my eyes all of a sudden got much
worse than they were before I started using the drops. They got terribly
sensitive to sunlight, it felt like the few tears I had were evaporating
the same second as they were spread on the eye, the eyes felt terribly
sore, and well…as a result I was hardly able to keep my eyes open. I was
panicking of course, wondering what on earth was going on. I had read
about allergy to Benzalkonium Chloride and I
recognized some of the symptoms. So, after discussing it with my eye
doctor, I decided to stop using Vexol to see if it could be the drops
causing all the new gained problems. Within 2 weeks my eyes gradually
turned “better” again (well…back to state they were before I started the
drop that is).
Conclusion: I obviously developed a sensitivity
towards Benzalkonium Chloride, which explains why my eyes felt good in
the beginning when I used the drop (as I benefited from the
anti-inflammatory effect of cortisone) but later got worse than ever (as
I, after some time,
developed a reaction to the preservative). If
there had been cortisone drops without preservatives on the market, this
problem had been avoided, and my eyes would have gotten better with
treatment instead of worse!
Toril (Norway)
Matt (USA)
I had LASIK in 2006 and I have
experienced such intense, chronic eye pain in my post-LASIK life that I
can count on one hand the number of times where I went for over 30
minutes without being aware of the pain in my eyes. Based on what I have
learned, I would NOT recommend LASIK to anybody!
An eye
doctor who has worked with many post-LASIK complication patients said it
best when he stated; “My feeling is that LASIK surgery and other
refractive surgical procedures exist solely to enrich doctors and the
corporations that manufacture the laser equipment and not to benefit
mankind.”
I understand that there are people
who are “happy” with their LASIK outcome. However, these same people
would have been happy with glasses and/or contact lenses had they never
heard of LASIK. For those of us who have had bad outcomes (and believe
me when I say that we are not as small of a % as the LASIK industry
would want you to believe), we are left to live with various
complications including, but not limited to poor vision, eye pain, and
dry eyes.
I
should note that I have 20/20 vision from LASIK, but I wish that I could
turn back the clock when I wore glasses and did not experience chronic
eye pain and severe dry eyes. LASIK MD’s often have very few options to
fix LASIK complications. Therefore, if you become one of the LASIK
complication statistics, you will find yourself in a place you wish you
never knew existed.
The
cornea is the most highly innervated tissue on the surface of the human
body. When the cornea is damaged, the corneal nerves can emit an
incredible amount of intense physical pain. Having said this, there are
very few people in this world who truly understand eye pain and can
sympathize with it. Most people who have not had ocular surface damage
from LASIK or through the use of preserved drops or through natural
problems like autoimmune diseases have no idea how much pain the eye can
produce.
I will also point out that it is
amazing what a story like the Wall Street Journal (WSJ) article titled
“A Closer Look At Dry Eye” can do for public awareness of the issue. I
have a relative who finally "got it" that dry eye can be debilitating
simply because a post-LASIK dry eye patient was quoted in the WSJ
article as stating that “Dry eye just sounds so trivial, but it’s a
disability”. Just the fact that this statement was printed in the WSJ
made it valid in my relatives’ eyes. The fact that he has heard it from
my wife during conversation just didn't seem to make it sink in like a
media article.
I have learned the hard way that
when it comes to your eyes, you must have a good dose of healthy
skepticism when it comes to what is recommended to you by the eye
community including eye doctors. There is a very good reason why most
eye doctors where glasses and do not get LASIK. I am equally confident
that if an eye doctor needs eye drops, he will reach for drops that are
preservative free.
Unfortunately, the eye community
does not feel a sense of obligation to insist that a harmful procedure
like LASIK be terminated or that pharmaceutical companies should produce
preservative free drops whenever possible and charge a few extra
cents
for the added cost. Remember, the health and well-being of your eyes are
at stake and the last time I checked, we only get two eyes in this
lifetime.
Money 2 (USA)
I went to an eye doctor for
an eye infection that still bothered me and for 2 mos they have given
me different drops. 3 of them at once pataday, optivar andn lotemax
and by the 4 days i had a swelling sensation in my sinus's. they said
it was because of using the antibiotics, optivar and within a 4 week
period the other three and that happens....stop taking
them.... i am highly allergic to sulphites.. i told them
first.
The next drops they gave me
patanol, and i made the
mistake of using a netti pot. which spread the drops and probably the
infection into my sinus and ear. the pressure was so excruciating
the next day i called my doctor for antibiotics because i thought it
was a sinus infection. 3 different antibiotics and within a week and
a half the eye inflammation and redness came back. went to another
eye doctor. he put a non preservative drop in my eye which helped..
and sent me home with lotemax.....for 4xs a day i used it and
for 6 days. i had the same horrible swelling fluid sensation through
my head and in my ears and sinus's. when i finally wrote it all down.
i thought about preservatives. and called the eye doctor for all the
common ingredients in all those drops and asked if sulphites where in
them......he said they dont have to list per the fda the small
percentage of sulphites in there. all that time i was basically
poisoning myself. i had to figure it out. i trusted that they would
not give me sulphites since i mentioned it first. while on the
internet i found out that some topical eye drops contain sulphites...
also found out the edta disodium and another perservative all in all
otc eye drops and nose sprays..... its been a horrible experience and
i am still having eye pain and pressure and burning in my sinus's. i
appreciate your wedsite and cannot believe that doctors cannot know
what the dirivatives of sulphites are or that preservatives are in the
drops. i cant be the first person with a problem. i wish i never
used the netti pot/sinucleanse because i spread it throughout. thank
you again for your website.
A.W. (UK)
Thank you very much for your useful info on the
internet about the dangers of Benzalonium Chloride - detergent
preservatives in eye drops for glaucoma etc.
There was a long article on the dangers of this in
"REVIEW OF OPHTHALMOLOGY" journal in June 2001. Jun;8(6):74-80.It
said BAK can cause cells in the eye to die. But this article seems to
have been largely ignored since then. That is why I was so pleased to
be told by a friend of your internet info. Is there anyway we can get
this out into medical & consumer journals do you think?
The article I mentioned in REVIEW
OF OPHTHALMOLOGY which detailed eye problems caused by this
preservative, stated that BAK in eye drops can cause toxic
inflammatory changes of the ocular surface, fibroblasts, dry eyes,
cell death, allergic reactions etc. Chemical reference books state
"Keep BAK away from eyes." Yet it is added to eye drops! Evidence
is accumulating that BAK can be stored in the iris, retina, aqueous
humor & other parts of the eye & that it may cause cataracts. Using
small daily bottles which don't use preservatives seems to be the way
ahead. If the industry doesn't act then many of us want to be
pro-active on this as people are becoming aware of the long-term
risks.
Glaucoma patients could be using eye drops several
times a day for over 35 years! All the UK glaucoma eye drops that
I've looked at seem to contain BAK. These include the brand names
Xalatan, Betagan, Timoptol, Trusopt etc. Yes, I have
glaucoma & because I am not old it means I will be taking the drops
for decades, 3 times a day. My father has glaucoma too & has to take
eye drops 5 times a day!
Display the Testimonials in French
This is what we call the 'Preservative Paradox!
Preserve
our Eyes, not our Drops!
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Keratos 2007
