I Want To Tell My Story

"To understand oneself is a form of liberation-- an emancipation from uncomfortable conditions that hamper the human spirit. It cannot be measured. To understand oneself is the first step to being happy and to live life to fullest."

I've written about this before but I'll write about it again but I'm telling a different story.

I have a heart condition called Mitral Valve Prolapse. It's not a disease. It's just a condition but there are certain abnormalities that I have to deal with like shortness of breath, tired even if I'm at rest, or panic attacks that happen sometimes. It is hard when shortness of breath occur and panic attacks follow because people look at me dazed and I am pretty sure that some think that my complaint of not being able to breathe properly is all in my mind.

I have to understand what goes on with my body right? So I've been reading (AGAIN).

People with mitral valve prolapse seem somehow to be wired differently. Their autonomic response can be much more volatile and unstable, as if set on hair-trigger, so that normal stresses and surprises set off an exaggerated response, flooding their systems with stress hormones called the catecholamines. In fact, there may not be a specific stressor—autonomic fluxes may occur unpredictably like internal weather changes. In some ways this could be defined as a catecholamine disorder. The principal catecholamines are epinephrine and adrenaline. People with mitral valve prolapse are intermittently and unpredictably awash in their own catecholamines. This leaves them alternately innervated and exhausted—"wired but tired" is a common feeling.

So panic attacks are not psychological, okay?

I experienced the worst panic attack ever early this year. I was too embarassed that I wanted to die. Really. During the last day of pyrolympics at the Mall of Asia grounds there was traffic everywhere. I started feeling a shortness of breath and out of nowhere, I started thinking of bad case scenarios-- what if I keep breathing like this and there's no hospital nearby? what if we get stuck in traffic for a couple more hours and I stop breathing? All those thoughts came rushing into my head and I couldn't breathe properly anymore. I think this was the beginning of a panic attack. I panicked because I thought I wouldn't reach a hospital alive. So Alej's mother kept asking me how I was doing at the backseat. I kept saying I was okay and that it's normal for me to breathe uneasily because it usually goes away. When we reached Taft Avenue on the way to Quezon City, his mother insisted that I went to the Emergency Room of the Manila Doctors Hospital. It was the closest hospital and because she insisted, I went.

If the sympathetic nervous system of a person with MVP is aroused, they can suddenly feel crushing chest pain, with heartbeat racing and pounding. They may begin to hyperventilate, feel short of breath, and break out into a cold sweat. Certain people with mitral valve prolapse sometimes experience this with no apparent warning or immediate threat. There can be sensations of chest pain, a feeling of doom or detachment, a fear of dying, or a desire to flee. If you don’t know why this is happening, the symptoms themselves are scary, and the fear of the unknown can prompt an even greater release of stress hormones, driving you into the kind of meltdown of the autonomic nervous system that we call a panic attack. This is an intense, visceral, and scary experience, and the sensations can easily be confused with those of a heart attack.

And I felt all that. I felt the fear of dying, the desire to flee, and my head was spinning. But I tried to keep calm. I didn't want to go into an emergency room but I did. I obliged. After an ECG and examinations, the attending doctor looked at me with a mocking grin. He said maybe I got too excited watching the fireworks that my heart began to race. For him it was a joke. IT WAS A JOKE. If I had known more that this was normal for a person with a condition like MVP, I would have told him to his face that he would have known that this was normal for MVPers. But he didn't explain to me. He mocked me. I didn't know that there was a scientific explanation, a biological more valid reason why I felt this way. Even if everything were psychological (the panic attack), it was triggered by the heart condition. The nurse commented on my ECG that I was okay and when she asked why I was brought to the ER, she gave me a smirk.

Emergency room physicians see a great number of people who come in believing that they are having a heart attack, when they are actually experiencing a panic attack. Once people experience this, they generally have a persistent fear of having another attack, which puts them on a "hair trigger," ready to respond to the slightest symptoms by releasing the very stress hormones that induce the panic attacks, thus escalating a new attack.

I felt stupid. Crushed. Hurt. Embarassed by everything that happened. The long night that went on and the panic attack was too painful to remember because I felt ashamed for being a burden to my boyfriend's mother (even if she was really nice about the whole ordeal), sister, and Nana. I wanted the earth to swallow me whole because I was embarassed. I really, really was.

But I should have known more. I should have known that this happens and that I shouldn't apologize or feel ashamed if I had this condition since birth and it will probably happen again. It's my body's chemistry.

What saddens me is when people don't understand my condition. I hate looks that say "it's all in the mind" when I say that I can't breathe properly for the fear of them thinking this way. I feel hurt sometimes and frustrated. I know it's probably because they don't feel what is in my body, they don't get shortness of breath, they don't experience panic attacks and all that. But I'm writing this now so in case I know you and this panic attacks happen, you will know that I'm not being a drama queen. IT DOES HAPPEN. I wish people understood more so that they would care more. I wish doctors explained more too. I've learned lately that when a doctor tells you something it is my homework to read up more on conditions/diseases because they won't tell unless they are prodded, asked, or even bothered. Some just rush and give you prescription drugs but they don't tell you the what, why, or how.

It may seem odd that all of these symptoms should be somehow related to a heart abnormality. In fact, it’s not that the mitral valve abnormality causes these other symptoms, but it is a physical trait that is a marker of the underlying condition. The valve abnormality was spotted first, and is the name given to the syndrome, but we are now beginning to be able to identify the underlying problem that is manifested in other ways than the heart murmur. The good news is, once we’ve identified it for what it is, we can effectively manage the condition, and the symptoms.

As I write this, I really want to cry. The symptoms that I feel cannot be understood by people. Sometimes I choose to be silent because I hate being told that "it's all in the mind". I think this therapy will be good for me:

Cognitive therapy—This is the basic ground for the holistic approach to mitral valve prolapse. It’s important for everyone with this condition to seek out a sympathetic or holistic physician who can clearly explain the variety of possible symptoms, confirm that they are not imaginings or hypochondriasis, and provide a program of treatment. If you understand clearly what is happening, you can learn ways to block the feedback loops that can lead to panic attacks or hyperventilation, and break the cycle. By performing a "reality check," you can learn to break the conditioned response you have acquired to your own physical symptoms.

There are a number of books that can help you with meditation and relaxation techniques, and there are centers at some hospitals and clinics that offer courses of instruction. Many people find they benefit from taking yoga classes, which combine peaceful relaxation with physical stretching. Dr. Herbert Benson, founder of the Mind-Body Institute of Harvard Medical School and Deaconess Hospital, has written a useful book on these techniques called The Relaxation Response.

So this is my story. Too bad I only read this now. I would have understood then. I want to let this out because in case I know you, please don't think I'm psychotic, a hypochondriac, or if I'm just making things up. I hope you'd understand and be more sympathetic.