WELCOME TO MY WORLD

Hello, my name is Yolanda and welcome to my world of Agoraphobia, generalized anxiety and Panic disorder.If you’re reading this it is probably your world too. Your description of your world might be different but it’s just a matter of words.

The term Agoraphobia was unknown and unheard of forty years ago. That is about how long I have had this problem. If you notice I said had! Most of my symptoms are gone. I would like to say all but will explain about that later.

First let’s talk about the devastation of Agoraphobia. Do you wonder how many people have it? There are figures out there but I know they are wrong. No one really knows for sure. If the pharmaceuticals knew they could sell a lot more pills. But that’s another conversation.

 Most of us who have this are not out in society. We are not at doctors’ offices. We can’t organize a “Run for the Cure”. We are in our houses. Some of us can’t even leave our bedrooms. We also can’t get to the doctor’s office, even if we have a ride. Sitting in a doctor’s office with other people is very hard for us. Society doesn't know about us because we are not verbal. At one time we were, but not anymore, some never. You’re never going to see a fund raiser for Agoraphobics, even though it’s left us completely debilitated. Were crippled but a wheel chair won’t help us. The only one who knows how bad it is, is us. We are self medicating with booze and drugs. We are at home beating ourselves up for having this.

A lot of us are barely getting by. We can’t go to work and disability has been denied us. Some have a significant other to share life and finances with. Others work from home and produce meaningful income. All of us are wonderful bright fun loving people. We have PhD’s and Masters. We are incredibly talented. We would be an asset to anybody who knew us. All of us have been kicked to the curb by “Agoraphobia” who is hell bent on destroying us. Some of us are more limited than others. Our symptoms are many and they come and go like the wind.

Let’s talk about our family. They either accept us or accuse us. They only know the person we used to be. We were for the most part out going. We did things with them. We helped them.  Now that person they used to know is gone and it’s our fault. Our family tells us to get over it. They ask us when they see us, “do you still have that?” They are over the top in denial. Or they just plain tell us we are lying. So we add that to our list of things we have to endure.

Then there is the medical community that we look to for answers. Instead we get antidepressants and anti-anxiety medications. They tell us we need psychotherapy. We take their medication that they tell us isn't habit forming. They say the end justifies the means. This is very hard for us because we are medicine phobic.

We go through desensitization. This is to face the things we think are going to kill us. They say the more we go to these places that we fear the more anxiety will lesson. This would be fine if we were a dog.

They tell us we have to retrain our brain. That’s like telling the person who is falling that he really isn't falling he just thinks he is. There are a thousand books on agoraphobia aimed to relieve you of your money. They go over and over what you have to do to be well. Most if any of these authors have never had this thing. If you are one of the people who have been helped by these books consider yourself VERY LUCKY. The medical profession has left us addicted to pills and condemning ourselves for our own self imprisonment. I for one am not buying any of it!

So what can we do to help ourselves? Do we have any other options, yes we turn to the internet, and it is our best friend. It is a life line for people like us. The information it pushes out is over the top. God did not leave us alone, He gave us the internet. That is where I found my answer and I know it is an answer for a lot of you.

Agoraphobia found me when I was twenty eight years old. At different times in my life it tried to introduce itself to me but I ignored it. Then one day as I was almost ready to graduate from Beauty School it forced itself upon me and I could ignore it no longer. My world as I knew it ended that day forty years ago.

My symptoms were varied. I had dizziness lots of dizziness. I didn't know if I was spinning or the world was spinning. It was like when you are sitting in a parked car in a parking lot. The car next to you starts to move and you feel like you are moving but your still in the same place. Then the panic begins. You feel like your pitching forward. I could not drive anymore or ride in a car. The noise and lights in a grocery store were overwhelming. Standing in line brought on severe dizziness. And then panic set in. Of course this panic was accompanied by shaking. Panic and shaking went hand in hand. I could not stand in an open area and talk to someone I felt like I was pitching forward onto my face. This is not good for a friendly conversation. One day I found I couldn't sign my name to a document, or anything if people were watching me. I would start to shake and could not even get my hand close to the line. Filling out forms at the doctor’s office was a nightmare of worry.

My house was my safe place. I had to use vodka to be able to go to school functions or teacher conferences for the kids. Walking into my back yard was as far as I could go.  Sitting in a restaurant was impossible I was finally able to sit in a booth only some of the time. Sitting in a theater or church was to over whelming unless I was in the last row with no one behind me. Then it was only bearable. I became an expert at excuses. Hours were spent thinking up creative excuses. The sad part was I loved people and being with them. Driving was one of my best pleasures. Grocery shopping was also something I enjoyed doing.

I ask you does this sound like something I did to myself?

I went through life hanging on as best I could trying to keep myself image intact.(lost the battle on that one) I always had an attitude of “I will find a way out of this” I spent forty years looking for something that would give me my old life back.

Then one day as I was taking a shower I went to turn around and my eyes did something funny and I thought could it possibly be my eyes? After the shower I went straight to the computer and looked up “Agoraphobia and the eyes” I found an internet site that talked about just that. It listed all the symptoms that I had and said you needed prisms put into your glasses. WHAT!  Could this be true? The place was called Vision Specialists of Michigan. I called and made an appointment and spent the next three years getting used to my new glasses and getting rid of my symptoms. This condition I found out is called Vertical Heterophoria.

In school eye doctors are told that the eyes will make up this difference and not to test for it. This condition is where one eye is higher than the other and causes all of these symptoms and more. Before a commercial pilot can fly he has to pass this test for vertical hyperphoria. If he is one diopter off he is refused a license. 

Us agoraphobics are running around with this condition which is much worse and think it is all in our head. I can hear some of you saying “glad that isn't me” but it probably is you. I know we have all been looking for that break through. Maybe something like a brain misfireing that would need a huge operation. Something this awful could not be fixed with prism glasses, right?

Your question might be “why didn't you know this before?” I did not look like I had one eye higher than the other. When you are young your eye muscle works to bring the eyes in alignment. But when you get older and stress hits the muscle gives out. I am finding more and more people are having this condition younger. If you look at some photos of yourself you will probably see your head tilted to one side. Also look in a mirror at the little lines over the eyes. One of the lines is higher than the other.

Heterophoria is where the two eyes have difficulty looking directly at the image being viewed. The eye muscles take over and try to correct this condition. But over a long period of time the eye muscle becomes over worked and you end up with the symptoms of agoraphobia. Agoraphobia is not the result of panic, panic is the result of agoraphobia. Some symptoms are strained eye muscles which cause headaches, usually in the front of the face or in the temples. As the muscles strain they become fatigued and they quiver, causing the eyes to move rapidly but minutely, which creates the feeling of dizziness, lightheartedness  disorientation and a sense of imbalance. Other symptoms are face ache, eye pain or pain with eye movement. These symptoms are similar to sinus problems, migraines, TMJ problems, neck ache and upper back pain due to head tilt. Symptoms similar to spinal misalignment problems, motion sickness, nausea, poor depth perception, unsteadiness while walking or drifting to one side while walking, lack of coordination. There are also symptoms similar to those seen in patients with MS or Meniere’s disease. Difficulty with concentration similar to ADHD. Difficulty with reading comprehension, skipping lines, while reading, words running together while reading similar to those seen with learning disability. Also blurred vision, double or over lapping vision, shadowed vision, light sensitivity, difficulty with glare or reflection.

Feelings of being overwhelmed or anxious when in large contained spaces. Like malls or big box stores. Feeling overwhelmed or anxious in crowds seen in patients with agoraphobia and anxiety. This condition may be caused by head trauma, stroke, or neurological disorders. However, most often this is a condition you are born with. It may take years before symptoms occur, as the body will do its best to compensate for these problems. This condition runs in family’s

To correct this problem, the optometrist adds prism to your lenses. Prism is a way of making the lenses such that the image seen by the eye is moved up or down or to the side. Whatever is needed to allow the eye to point in the correct direction without straining the eye muscles. Proper prism correction leads to a reduction of symptoms of (on average) about 80%.

This information was taken from the book “If the Walls of my Exam Room Could Talk” by Debby Feinberg O.D.

This problem is looked at by the medical community and the government as a physical disability. If you have this you are entitled to disability. This cannot be cured but can be helped by putting prisms in your glasses. You will probably never be one hundred percent symptom free but you will be able to lead a pretty normal life. Knowing what the problem is, is a cure in itself. After your eyes have been corrected what ever symptoms are left you can deal with because you will know what is causing them.

After putting prisms into my glasses I was able to, go to the store and not be dizzy or panic. I could stand and talk to someone without the pitching forward feeling. The shaking while signing was gone. I can walk over three miles from my house alone. I can also go to the store alone but take a half of .05 mg Xanax  I drive to the store.

 Prisms were put into my glasses a little at a time. You have to wait for your eyes to adjust before putting more prisms in. It took a period of three years for all symptoms to drop. Some people go much faster. I still have trouble going places alone, but if I have to I do it. 

At this time there are only two doctors in the country that do this. One is Vision Specialists of Michigan and the other is Dr. Akira Tajiri in Reedley, California. It would be good if more doctors could see that this is needed but for now this is the way it is.

I have written a book about my journey, which can be ordered on Amazon. The kindle price is only 3.50 so it would be available to everyone. The book is displayed here.

I would love to hear about you and your journey with agoraphobia.

 Thanks for listening, Yolanda

.