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 to PPIs.  



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 changed.

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 what is the eye problem related to?  I don't 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".  

Another 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.