The Loss of my Eyesignt
First Posted June 22, 2008
Updated January 13, 2014
January 13, 2014
It has been about 4 years now since
my last post on this subject. My eyesight has not gotten any better, but,
it does not seem to be much worse either, which I am thankful for.
Even though there are many things I cannot do any longer, such as
drive and read books, I am very glad of the small amount of eyesight I still
have as it still allows me to do many things I enjoy.
And still, there is no definitive explanation as to what actually happened
to cause this situation, I have been doing a lot of research over the
years, of and on, reading articles and following leads. It is hard to say if I could ever get a
doctor to agree with my theory or not.
There are so many ways for this type of blindness to happen, is one of
the reasons the medical profession has had a hard time dealing with it.
Ignore my earlier posts here. Many of those were just desperation, as I
wanted my eyesight back. Here are the
things I know and seem to be relevant.
Around 1998, or so, I started to develop
digestive problems. This was at about
the same time my doctor suggested I should be losing weight. And lo and behold, I started to lose weight. At the time, I thought I was doing really
good, and why did other people think losing weight was so difficult. It was also at this time I started to have
problems with diarrhea. Well, not much of a problem, it would happen on
occasion, it was just ignored.
Around 2000, I found out I had an arrhythmia. The cardiologist said it was benign, so it
did not require treatment. However, this
was probably the first solid warning sign, but, nobody recognized it as
such. Although, that was probably a good
thing. The two doctors who thought the arrhythmia should be treated wanted me to go
on beta blockers. My cardiologist said
no, so I never took them. Beta Blockers
may have treated the symptom, but probably would not have treated the cause.
The cause? Most likely, from what I have read, it was
probably low magnesium. Low magnesium
can cause arrhythmia as well as hypotension. Hypotension is low blood pressure. The arrhythmia
and hypotension are both risk factors for Anterior Ischemic Optical Neuropathy.
However at the time, my regular doctor was pushing to put me on blood pressure medication
for high blood pressure. Quite often I
would come out at 140/80 at the doctor’s office, which is right at the border
line. I am sort of glad I was stubborn
about the blood pressure medicine. It
can aggravate a situation where AION is involved.
The next thing in the mix was a colonoscopy.
The evil part of that, the prep, gives
you real bad diarrhea, which probably made a big hit on my magnesium
levels. When they hooked me up to the
EKG, they commented on my arrhythmia, but I stupidly assured them that my
cardiologist said everything was OK.
And finally, Proton Pump
Inhibitors. These also lower your absorption
of magnesium. I was on Protonix for
about 6 months before I had my first episode of AION in my right eye.
Now, like I said, this is only a
theory. No where did I actually find
anything that tied this altogether. I
found little pieces of information, like, low magnesium can cause hypo tension
and Protonix can cause low magnesium and hypo tension can cause AION. And there were papers that talked about people
who had digestive problems that went on PPIs that seemed to be prone to AION.
This is one of the problems with the
medical profession is that tend to treat symptoms rather that fix causes.
Now that my digestion has stabilized,
the arrhythmia has gone away. This tends
to illustrate the problem of going to doctors.
I don’t think you will ever hear a doctor say “Heart problems, get your
digestion fixed”. Not that all heart
problems are related to digestion.
Still, I think you probably have experienced something similar to this.
My recommendation is that if you are
taking a proton pump inhibitor (Priolosec, Protonix, Nexium, Previced, etc), I
would take a calcium/magnesium supplement as well as B-12. All of these have absorption problems related
June 22, 2008
This has got to be one of the most stressfull experiences I have ever
been trough. This all started on May 21, 2008. As of today,
which is June 22, 2008, I have full vision still in my left eye, but my
right eye is still pretty useless, although, it does look like over the
past few days, things are finally beginning to improve. The are
still days of ups and down. And no cause has yet been determined
(and thus, no treatment).
On May 21, 2008, I woke up with an itchy, watery right eye. This
is not all that unusual. I have alergies, and I get that from
time to time. Although, this was particuarly bad. The next
day, however, it became clear (unclear) that something was wrong.
I attempted to make an appointment with an opthamologist.
That proved to be a lot more difficult than I could imagine.
I was trying to get in to the Sansum Clinic here in Santa Barbara
as they had a good reputation. I explained to them that I needed
to see somebody now, rather than two weeks. So, they found a spot
for me. The doctor that examined me said she could find nothing
wrong, and diagnosed as Blepheritus and not to worry. The next
morning, the vision in the lower half of my field of vision went dark.
I continued to treat the eye for Blepheritus for a bit over a
week, and when things were just not improving, I decided it was time to
find another Opthamologist. When I explained to him what the
other doctor said, he scoffed and said "Blepheritus does not cause loss
of vision!". His diagnosis was that the optic never was swollen.
Two common causes of this are a stroke in the eye, or MS.
The stroke angle got me in touch with my cardiologist the next
day, as well as an appointment with a nurologist on the following
monday. The nurologist confirmed that the optic nerve was
definately not working correctly. The cardiologist, however,
could find no smoking guns for a stroke. Caratoid Duplex,
Standard echo cardiogram, and transesophageal echocardiogram
because my cardiologist thought there was the posibility of a hole
between my left and right ventricles. Turned out, thank goodness,
that everything was normal there.
The nurologist ordered an MRI, looking again for signs of stroke and MS, and it seems I have a picture perfect brain.
I since went and saw a third opthamologist. He noticed that there
was some leakage (bleeding) around the optic nerve, which took me to a
Retina Specialist. That was on June 19, 2008. He did an
angiogram on my eye, and determined that blood flow to the upper
portion of the retina (which is where the lower field of vision is) was
indeed restricted. He is currently trying to think of what tests
for me to get done so that we can find a true cause of the problem.
Meanwhile, I am tapering down prednisone, but taking one full asprian a
day, to help keep my blood thin so as to not cause any other problems
with the thin blood vessles. And just for the heck of it, I am
taking Vitamin B12 and a multivitamin. I am on Protonix as well,
which prevents the absorption of B12 from food (but not vitamin pills
of all things)....
I should also not, that I am grateful that I have only lost my eyesight
in one eye (so far at least). I consider myself lucky. But
it is still extremely stressful. My family and wife have given me
great support and many friends and family are praying for my speedy
recovery....which I am very thankful for. It is very difficult
not to be bitter. My attitude about eyesight loss has definately
I will keep you posted and things devolope.
June 24, 2008
My eyesight Does continue to improve a bit. Not much, but a lot
better than it was. I am probably at about 50% right now.
It is still frustrating dealing with the medical establishment.
Doctors need info, and the labs can't give it to them directly
(or me, for that matter). So, more time is being wasted.
At the moment, it would seem almost a sure thing that this is being
caused by cat scratch fever. It can affect the nervous system.
And I am beginning to show other signs. Numbness in the
feet, for instance.
July 12, 2008
Ok, now I am starting to see dramatic improvement in my eyesight.
I am not sure, but it may have been my dentist who came up with
the "cure". About a week ago, a tooth I have been having minor
problems with for the last 6 years or so, finally started having major
problems. On July 8th, I went in to see my dentist. He
refered me to an Endodontist who said "Yep, you need a root canal
son!". He prescribed me Amoxicillin...(the root canal starts on
the 16th). Well, the antibiotic seems to be doing the trick, not
only for the tooth, but also my sinuses and my eye...hmmm....so what is
the eye problem related to? I don't know...is it the dental
problem, sinus problems, both, or niether? Anyway, my central
vision has improved. Now it is only the lower portion of my
field of veiw that is really bad. If my central vision returns,
however, it will sure make driving and reading a lot more pleasant.
In the portions of my right eye where I can see...I am also begining to
see more detail. And the blind spot in the center of my vision
now looks like a circular spot. The lower 1/3 of my vision still
looks pretty gray.
October 20, 2009
And Just When You Thought it wass Safe to Start Taking Your Meds
The saga continues, but at elast now I know a lot more about my
condition thatn I did the first time. The condition I have is
called Anterior ischemic optic neuropathy (AION),
and it can be caused bty many things., such as giant cell arteritis,
MS, bblood clots, infections and several others. However, from
what I have been able to gather, this is a very rare condition.
As noted above, in May of 2008, I lost the vision in my right
eye.. I was told back then that the chances of loosing the sight in my
left eye the same was was very slight. WWell, in September of
2009, I began to loose the sight in my left eye as well.
And sure enoughh, it was exactly the same cause as the right eye.
This mystified the doctor. After some checking I discovered
that the Proton Pump Inhibitor that I was on (Protonix), can cause
exactly the problem that I have. Needless to say, I stopped
taking Protonix right away. By September 20, I was almost totally
blind.. since the, (Totay is Oct 20), some of the vision in my
lesft eye has returned. Although, as you may well notice, there
are a lot of typing errors in this, mostly because I can barely see
what I am doing. ZoomText will read this back to me, but it isn't
perfect. At this time, there is still a lot of controversy over
the connection be AION and proton pump inhibitors. But at least I
am starting to get the word out.
One of the
problems is because doctors don't really know a whole lot about this.
I have been educating the doctors as I go along, which doesn't
make this any easier. Most are surprised to learn that these
drugs can have very serious and life changing side effects. When
shown the articles, the most common reaction is "Oh My".
problem is ttrying to find an opthamologist that can diagnose
AION. The first doctor I went to diagnosed it as Bacterial
Blepheritus...but I later learned that this doctor will call
whatever she can igure out Blepheritus.
December 19, 2010
Well, here it is, a year or so latter, and still nobody knows why this
has happened to mwe. I at least now am legally blind, but I have
lost my job (they put me on disability). whjich has not done much for
my feelings of well bing. I am now going to the braille institute
trying to learn how to cope with my loss of vision. I am using a
white cane now, which does have a few perks.
The thing that is discouraging is that nobody really seems to know the
reasons for how AION can happen. There is some light at the end
of the tunnel, so to speak. A company called Quark Pharmacuticles
seems to have a drug called QPI-2007 that can be used early on in an
eye stroke to prevent damage to the optic nerve. It would apear
from the liturature that it is too late for me, hoqwever. But, on
my next appointment, I will be asking the doctor what he knows about
this drug. The other bad thing is that it is still in the trial
stage, and it would be several more years before it iwill be
availiable. This drug is also also being tested for used in the
treatment of wet macular degernaration.