Open-Angle Glaucoma Sufferer's FAQ


High Intraocular Pressure (IOP).
Intraocular pressure (IOP) is the fluid pressure inside the eye. TonometryEye pressure is the method eye care professionals use to determine this. IOP is an important aspect in the evaluation of patients at risk from glaucoma. Most tonometers are calibrated to measure pressure in millimeters of mercury (mmHg). The increased pressure prevents the blood flow to the optic nerve and the cells near the periphery die and the damage gradually moves inward. Because it occurs over a long period, you don't notice the loss until it is too late. Your brain fills in details that simply aren't there which makes your life very dangerous. Especially when you drive.
My mother suffers from the exact same issues with approximately the same losses in each eye (80% in the left and 60% in the right eye). I believe her mother also suffered from the disease although I don't think she knew it. This suggests to me the disease may be due to a defective gene on one of the X-chromosomes and thus carried down the female line. This also explains why one sibling gets glaucoma whereas another does not since they received the other of the pair of X-chromosomes from their mother. Neither my brother nor my sister have any symptoms.
Why is it so hard to discover?
It is estimated there are 4 million people, in the USA alone, with glaucoma—mostly with Primary Open-Angle Glaucoma (POAG)—only 50% have been diagnosed. The disease is invariably discovered long after the damage is done. Gene based therapiesIndividuals predisposed to glaucoma should be identified at the earliest possible stages of the disease, so that treatment can be initiated before the optic nerve is irreversibly damaged. Although current therapy is not curative, for many patients lowering the IOP using currently available pharmaceutical and/or surgical approaches can slow the progression of the disease and limit the overall loss of vision. Thus, biomarkers might be invaluable tools to identify individuals at risk for disease and, depending on the approach, could serve to measure the outcomes of therapies.
Symptoms that sent me to the doctor.
I kept banging my elbows on door jambs and falling over or kicking things on the floor. By the time it was diagnosed, it was already too late. There were other symptoms that I had attributed to seasonal allergies.
Is there a test that I can perform at home?
Amsler GridYes, a very simple one that only takes a few seconds. It's called an Amsler Grid. Get the full-size version and hold it 12-14 inches away from your eyes. Cover one eye, then focus on the dot in the center. Can you see all corners and sides of the grid? Don't forget to test both eyes. My left eye is considerably worse than my right. If you have a telescope, you will notice that you can’t see the whole image through the lens and likely it will be worse with one eye than the other. Spot lights and lasers such as car brake lights will have refractive patterns or haloes around them. Distant objects such as the moon and stars may appear doubled. You may suffer uncontrollable panic attacks as your brain becomes confused—if this happens, close your eyes and hold on to something until the feeling goes away. Avoid large areas that are predominantly lit by fluorescent lighting such as stores. The Gears Illusion looks like it is standing still if you have Glaucoma.

How it affects you

If you lead an active life, the effect will be devastating.
Up until my diagnosis in 2006 I led a very active life. Skiing, motorcycle racing, hiking, and lots of other outdoor activities. I have two children at school and can now no longer do the things I enjoy because of the risk of injury that would prevent me from working.
Can you drive?
Possibly, if you are aware of your limitations and adjust accordingly. Scan left and right continuously as you drive (it will soon become second nature). Choose your trips carefully, avoid traffic, make use of freeways (less traffic coming in from the side), and try not to change lanes. Check at least twice before pulling out and wait if you are not sure. Look at the gap between your vehicle and others around you as you cannot rely on your 3D vision, especially as you come to a stop behind the car in front. Always travel by the same route if possible. Avoid travelling in unfamiliar places. Let others drive if you are not alone. Give yourself plenty of time to make maneuvers and always check vehicles close by. Select a vehicle which will help such as the Mercedes ML320 which has sensors all around for people and vehicles and also has adaptive distance control for cruising. Do NOT drive at night except in an emergency. The Association between Primary Open-Angle Glaucoma and Motor Vehicle Collisions is statistically significant.
You may suffer uncontrollable panic attacks as your brain becomes confused—if this happens, close your eyes and hold on to something until the feeling goes away. Avoid large areas that are predominantly lit by fluorescent lighting such as stores. About the longest I can stand being in a store is thirty minutes and it starts getting uncomfortable after ten minutes.
Drooping eyelid.
The medical term for drooping or droopy eyelid is Ptosis or Blepharoptosis. In severe cases of glaucoma the brain doesn’t bother opening the eye fully. This is particularly noticeable on photographs.

Is there a cure?

No, it is a permanent loss.
Glaucoma loci defined by linkage studiesWhen I was 46 I started having reading problems. Up until then my eyesight was perfect. At the time it was recommended that I see an eye specialist as I was showing signs of vision loss. I started wearing glasses for reading but did not heed the advice to see a specialist. In 2006, at the age of 58, I was diagnosed with glaucoma. Realizing that I could have done something to save my sight all those years ago, was a blow I have not been able to come to grips with to this day. Operations such as Trabeculectomy  can only prevent further damage. But there is hope with upcoming stem cell research. Identifying the genes (and here) involved in glaucoma will go a long way to finding the cure. See the research funded by the Glaucoma Research Foundation
Types of eye drops.
Drops on the back of the fingerHere is a tip for those having difficulty using eye drops. Because I couldn't see the bottle, I found myself jamming eyelashes into my eye, missing my eye completely, and so on. So, I came up with a foolproof method of applying the drops. If you are right-handed, place the eye-drop bottle on the back of your index finger while lining up the top of the bottle with the tip of your finger. Now, pull open your lower eyelid with your index finger and apply the eye drops by squeezing the bottle with your left hand. The bottle is perfectly lined up even though you can't see it. Eye drops are perfectly lined up
Alpha agonists work to both decrease production of fluid and increase drainage.
Beta blockers work by decreasing production of intraocular fluid.
Carbonic anhydrase inhibitors (CAIs) reduce eye pressure by decreasing the production of intraocular fluid. These are available as eye drops and as pills.
Combined medications can offer an alternative for patients who need more than one type of medication.
Prostaglandin analogs work by increasing the outflow of intraocular fluid from the eye. They have few systemic side effects but are associated with changes to the eye itself, including change in iris color and growth of eyelashes.
Dorzolamide hydrochloride-timolol maleate ophthalmic solution (0.2%/0.05%), formerly marketed as Cosopt by Merck is now generic. I had to stop using this as it caused severe stinging after a few months of use. After switching to another medication the stinging slowly went away. I recently switched to the newer Cosopt PF (Preservative Free) which, to date, has showed no signs of the stinging that the regular Cosopt did. The generic Dorzolamide-Timolol Maleate (22.3mg/6.8mg per ml) is also not a problem for me. WARNING: Make sure your doctor prescribes this as Dorzolamide-Timolol (22.3mg/6.8mg per ml) and NOT 0.2%/0.05% or you will be charged for the expensive Tier 4 drug.
Brimonidine tartrate/timolol maleate ophthalmic solution 0.2%/0.5% is sold as Combigan.
Latanoprost 0.005%. This is now generic.
Travaprost 0.004%. This is made from some of the most valuable material on the planet. As a 0.004% solution and ~$90 for a 2.5ml bottle then this works out at ~$535,000/gram.
Timolol Maleate 0.5%. This is generic.