Sitting here trying to find a way to begin this, it's clear to me that this is going to be much more difficult than I would have thought. So please be patient and bear with me as my thoughts will likely scatter and my emotions may well muddy the clarity that I would normally be capable of.
Thanks.
So... My name is John and I've had issues with PTSD and anxiety for 34 years. I was born with a not terribly uncommon congenital heart defect in the cardiac nervous system that began to cause symptoms with the onset of puberty. Irregular heart rates - arrhythmia. Frequently.
From the age of 13 until the age of 28 I was something of a worst case scenario in terms of the severity of my condition. Many people have this particular defect ( Wolff-Parkinson-White syndrome ) and hardly notice it. Others, like me, suffer greatly and end up in emergency rooms on the edge of death over and over again. In my case quite literally hundreds of times.
At 18 years of age, on a spring evening, the worst outcome finally occurred. I had a full cardiac arrest. My heart slipped into an irregular rhythm called ventricular fibrillation and then stopped. The paramedics and then the ER doctors worked on me aggressively and some fifteen minutes later I had a pulse again. My left shoulder was separated, the socket shattered. My left clavicle was distended and broken. My heart and lungs were severely bruised. Three of my ribs were crushed. I was in a coma and on life support. But I was alive.
My family were told to say their goodbyes as I was not expected to last the night and that, even if I did, I would likely remain persistently vegetative for whatever time I might have left.
Three days later I woke up. A month later I underwent experimental open heart surgery in an attempt to correct the problem. Long term neurological testing indicated that my memory had been slightly impaired but otherwise I was lucid and in possession of my faculties.
A random aside - before the arrest I was very artistic and could play instruments, paint and draw quite well. After the arrest all of those talents were simply gone.
For the next decade life did not change much. My heart continued to go into irregular rhythms frequently. ER visits were common. Stays in CCU units were the norm. Stacks of medication bottles were my day to day existence.
Then, in 1994 my cardiologist called me. A new procedure had been developed - Radiofrequency ablation. A catheter inserted into the heart that burned away the excess nerve fibers that caused the irregular rhythms. Overnight outpatient surgery. A cure.
I was scheduled and underwent the procedure. In my case the cure was not 100% as one of my extra nerve tracts was in a dangerous area of the heart - too close to the necessary nerve bundles. But I was mostly cured.
For the next 23 years I did not have an arrhythmia to speak of. No more medications. No more landing in the emergency room every few days. No more hospitalizations. Just a "congratulations!" and a goodbye.
A few days after the radiofrequency ablation I had my first severe panic attack. The first of countless such attacks that I have experienced since.
My PTSD diagnosis came quickly after that. Combined with an ever evolving host of co-diagnoses that seem to change with each new professional I've seen. Bipolar Disorder, General Anxiety, Social Anxiety, Agoraphobia, General Depressive Disorder... and the list goes on and on.
From my perspective life became a roller coaster - a constant journey through peaks and valleys. I might go a year or two with no symptoms at all and then suddenly find myself having months of clustered panic attacks that would not relent or let up. This cycle repeated for decades. Seasons of good, seasons of Hell.
Two months ago, on May 1st I was in the shower, washing my hair when my heart suddenly went into an arrhythmia. A very bad one. Very fast. Very dangerous. For the first time in 23 years my problem had flared up.
I was rushed to the hospital and within an hour it was over. I had spontaneously returned to sinus rhythm on my own.
The doctors ran some basic tests, which mostly came back good. My potassium was a bit low - a problem for those with irregular heart rates... My white blood cell count a bit high, indicating a possible minor infection. But nothing else was out of sorts.
Ultimately I was referred to a cardiologist and given an appointment, the first one available a few days later.
I was sent home but I did not feel well. Not anything to do with my heart, but other issues. I felt exhausted. I felt a burning sensation in my chest and stomach. My vision was blurring. I had chest pain. My arms and legs were going numb.
I know what panic attacks feel like and recognized most of these symptoms as panic - but some of the symptoms were new. These additional and new symptoms made things worse and undermined my usual coping mechanisms such as relaxation techniques, deep breathing, walking, self-hypnosis, biofeedback and mental distraction.
I could not control the anxiety and it kept getting worse.
I am sure that many who can read these words can and will relate to the surreal frustration that comes from knowing that you are having a panic attack but are unable to stop it from causing physical reactions to happen... Telling yourself "This is panic" even as your pulse begins to race and your blood pressure begins to spike. Trapped in it, watching it play out and totally unable to change it.
I had been scheduled for a cardiac treadmill test and I went and took it. Unfortunately the person who read the test made an error and I was given results that were extremely negative. I was told that my heart had substantial blockage and something called ischemia. I would learn two days later that these results were a false positive - somebody had misread the results. But the damage was done.
That night I wound up in the emergency room, my blood pressure at 300/190 - when it's normally 120/50. My pulse close to 150 beats per minute. I was in a full blown panic attack and I could barely speak. Still I tried to explain to the doctors everything that I thought to be relevant... I have PTSD... This is likely a panic attack... I had a test come back with these results... Please do something about the panic before it pushes my heart into some sort of distress due to the blockage ( that I thought existed at that moment ).
The doctors response? "We're not supposed to treat anxiety here but I suppose we can give you a mild antihistamine and that might help."
Thankfully a bit later another doctor entered the picture and admitted me to the hospital for the night and my symptoms were properly treated. Even more, another cardiac treadmill test - this one with a nuclear study included - was scheduled for the following morning.
The second test showed my heart to be healthy with no blockages or ischemia present. Three doctors came to tell me this so that they could also explain how and why the first false positive had happened... Scar tissue from my original open heart surgery at 18 that a doctor had misinterpreted.
I've been in the ER six times since that night. I've been to my cardiologist twice. I even went to a walk in clinic trying to find some help.
The anxiety attacks flared up terribly following my initial arrhythmia but they went into a whole new level of intensity the day I was given the bad results - the false positive results - from the first treadmill test.
What I am experiencing currently is like nothing I've experienced before. I feel deathly ill all of the time but when the panic hits - it hits instantly and it hits brutally. My blood pressure spikes within seconds and I struggle to retain consciousness because the instantaneous flushing and rush of heat is so intense. My vision goes almost totally blind for the first ten or fifteen seconds. I can't breathe at all. The pain in my chest is total and overbearing.
My family rushes me to the emergency room.
The doctors throw me on monitors, verify that my blood and body are fine and then send me home. They reiterate that they do not treat anxiety disorders.
Last week a compassionate doctor broke that cycle and sent me home with a prescription for two anxiety pills and some medication for acid reflux. He said he wanted to test a theory.
That following day was the only day I have felt healthy in two months. Not only healthy, but normal. Totally normal. Good in fact.
The following night I was back at the ER and a different doctor got angry over the fact that the previous doctor had treated my anxiety - reiterating that they do not treat such issues.
I am fairly certain that they think of me as a drug seeker. I've lived in this neighborhood for well over two years and have never set foot in their ER ( or any others for that matter ) prior to these events. I do not even have a personal physician. I have not interacted with medical personal at all in years... Yet I am positive that their impression of me is as I said.
I have made an appointment with a primary care physician, a regular doctor - but it is weeks away. I have also begun the process of trying to be seen at the local mental health clinic but their system is set up in such a way that it takes months before a patient actually sees a doctor. One makes a preliminary "intake and evaluation" appointment - several weeks out. Once that is done a second "assessment" appointment comes several more weeks out. Then, weeks beyond that, an appointment with a talk therapist...And then, and only then, if necessary one is scheduled to see a psychiatrist.
So for now I struggle to hold on. I force myself to eat a few bites of food each day, despite the nausea. I stare at walls waiting for the clock to move until bedtime arrives. I cannot concentrate on anything. I can't watch TV. I can't talk to friends or family. I walk, because I am told it helps, but I spend the entire time fighting back the overpowering urge to cry and collapse as I do.
I suppose if there is a positive for me right now it's that I have managed to ( mostly ) focus long enough to write this... But I don't even know why I am doing so. Maybe hoping that somebody else has been in this situation and survived it? Maybe in case some other person comes along, reads this and realizes that they are not alone?
I honestly don't know.
If you have read this, thank you for doing so. I'm sorry if it's been disjointed or rambling. It's the best that I have to offer right now.
Thanks.
So... My name is John and I've had issues with PTSD and anxiety for 34 years. I was born with a not terribly uncommon congenital heart defect in the cardiac nervous system that began to cause symptoms with the onset of puberty. Irregular heart rates - arrhythmia. Frequently.
From the age of 13 until the age of 28 I was something of a worst case scenario in terms of the severity of my condition. Many people have this particular defect ( Wolff-Parkinson-White syndrome ) and hardly notice it. Others, like me, suffer greatly and end up in emergency rooms on the edge of death over and over again. In my case quite literally hundreds of times.
At 18 years of age, on a spring evening, the worst outcome finally occurred. I had a full cardiac arrest. My heart slipped into an irregular rhythm called ventricular fibrillation and then stopped. The paramedics and then the ER doctors worked on me aggressively and some fifteen minutes later I had a pulse again. My left shoulder was separated, the socket shattered. My left clavicle was distended and broken. My heart and lungs were severely bruised. Three of my ribs were crushed. I was in a coma and on life support. But I was alive.
My family were told to say their goodbyes as I was not expected to last the night and that, even if I did, I would likely remain persistently vegetative for whatever time I might have left.
Three days later I woke up. A month later I underwent experimental open heart surgery in an attempt to correct the problem. Long term neurological testing indicated that my memory had been slightly impaired but otherwise I was lucid and in possession of my faculties.
A random aside - before the arrest I was very artistic and could play instruments, paint and draw quite well. After the arrest all of those talents were simply gone.
For the next decade life did not change much. My heart continued to go into irregular rhythms frequently. ER visits were common. Stays in CCU units were the norm. Stacks of medication bottles were my day to day existence.
Then, in 1994 my cardiologist called me. A new procedure had been developed - Radiofrequency ablation. A catheter inserted into the heart that burned away the excess nerve fibers that caused the irregular rhythms. Overnight outpatient surgery. A cure.
I was scheduled and underwent the procedure. In my case the cure was not 100% as one of my extra nerve tracts was in a dangerous area of the heart - too close to the necessary nerve bundles. But I was mostly cured.
For the next 23 years I did not have an arrhythmia to speak of. No more medications. No more landing in the emergency room every few days. No more hospitalizations. Just a "congratulations!" and a goodbye.
A few days after the radiofrequency ablation I had my first severe panic attack. The first of countless such attacks that I have experienced since.
My PTSD diagnosis came quickly after that. Combined with an ever evolving host of co-diagnoses that seem to change with each new professional I've seen. Bipolar Disorder, General Anxiety, Social Anxiety, Agoraphobia, General Depressive Disorder... and the list goes on and on.
From my perspective life became a roller coaster - a constant journey through peaks and valleys. I might go a year or two with no symptoms at all and then suddenly find myself having months of clustered panic attacks that would not relent or let up. This cycle repeated for decades. Seasons of good, seasons of Hell.
Two months ago, on May 1st I was in the shower, washing my hair when my heart suddenly went into an arrhythmia. A very bad one. Very fast. Very dangerous. For the first time in 23 years my problem had flared up.
I was rushed to the hospital and within an hour it was over. I had spontaneously returned to sinus rhythm on my own.
The doctors ran some basic tests, which mostly came back good. My potassium was a bit low - a problem for those with irregular heart rates... My white blood cell count a bit high, indicating a possible minor infection. But nothing else was out of sorts.
Ultimately I was referred to a cardiologist and given an appointment, the first one available a few days later.
I was sent home but I did not feel well. Not anything to do with my heart, but other issues. I felt exhausted. I felt a burning sensation in my chest and stomach. My vision was blurring. I had chest pain. My arms and legs were going numb.
I know what panic attacks feel like and recognized most of these symptoms as panic - but some of the symptoms were new. These additional and new symptoms made things worse and undermined my usual coping mechanisms such as relaxation techniques, deep breathing, walking, self-hypnosis, biofeedback and mental distraction.
I could not control the anxiety and it kept getting worse.
I am sure that many who can read these words can and will relate to the surreal frustration that comes from knowing that you are having a panic attack but are unable to stop it from causing physical reactions to happen... Telling yourself "This is panic" even as your pulse begins to race and your blood pressure begins to spike. Trapped in it, watching it play out and totally unable to change it.
I had been scheduled for a cardiac treadmill test and I went and took it. Unfortunately the person who read the test made an error and I was given results that were extremely negative. I was told that my heart had substantial blockage and something called ischemia. I would learn two days later that these results were a false positive - somebody had misread the results. But the damage was done.
That night I wound up in the emergency room, my blood pressure at 300/190 - when it's normally 120/50. My pulse close to 150 beats per minute. I was in a full blown panic attack and I could barely speak. Still I tried to explain to the doctors everything that I thought to be relevant... I have PTSD... This is likely a panic attack... I had a test come back with these results... Please do something about the panic before it pushes my heart into some sort of distress due to the blockage ( that I thought existed at that moment ).
The doctors response? "We're not supposed to treat anxiety here but I suppose we can give you a mild antihistamine and that might help."
Thankfully a bit later another doctor entered the picture and admitted me to the hospital for the night and my symptoms were properly treated. Even more, another cardiac treadmill test - this one with a nuclear study included - was scheduled for the following morning.
The second test showed my heart to be healthy with no blockages or ischemia present. Three doctors came to tell me this so that they could also explain how and why the first false positive had happened... Scar tissue from my original open heart surgery at 18 that a doctor had misinterpreted.
I've been in the ER six times since that night. I've been to my cardiologist twice. I even went to a walk in clinic trying to find some help.
The anxiety attacks flared up terribly following my initial arrhythmia but they went into a whole new level of intensity the day I was given the bad results - the false positive results - from the first treadmill test.
What I am experiencing currently is like nothing I've experienced before. I feel deathly ill all of the time but when the panic hits - it hits instantly and it hits brutally. My blood pressure spikes within seconds and I struggle to retain consciousness because the instantaneous flushing and rush of heat is so intense. My vision goes almost totally blind for the first ten or fifteen seconds. I can't breathe at all. The pain in my chest is total and overbearing.
My family rushes me to the emergency room.
The doctors throw me on monitors, verify that my blood and body are fine and then send me home. They reiterate that they do not treat anxiety disorders.
Last week a compassionate doctor broke that cycle and sent me home with a prescription for two anxiety pills and some medication for acid reflux. He said he wanted to test a theory.
That following day was the only day I have felt healthy in two months. Not only healthy, but normal. Totally normal. Good in fact.
The following night I was back at the ER and a different doctor got angry over the fact that the previous doctor had treated my anxiety - reiterating that they do not treat such issues.
I am fairly certain that they think of me as a drug seeker. I've lived in this neighborhood for well over two years and have never set foot in their ER ( or any others for that matter ) prior to these events. I do not even have a personal physician. I have not interacted with medical personal at all in years... Yet I am positive that their impression of me is as I said.
I have made an appointment with a primary care physician, a regular doctor - but it is weeks away. I have also begun the process of trying to be seen at the local mental health clinic but their system is set up in such a way that it takes months before a patient actually sees a doctor. One makes a preliminary "intake and evaluation" appointment - several weeks out. Once that is done a second "assessment" appointment comes several more weeks out. Then, weeks beyond that, an appointment with a talk therapist...And then, and only then, if necessary one is scheduled to see a psychiatrist.
So for now I struggle to hold on. I force myself to eat a few bites of food each day, despite the nausea. I stare at walls waiting for the clock to move until bedtime arrives. I cannot concentrate on anything. I can't watch TV. I can't talk to friends or family. I walk, because I am told it helps, but I spend the entire time fighting back the overpowering urge to cry and collapse as I do.
I suppose if there is a positive for me right now it's that I have managed to ( mostly ) focus long enough to write this... But I don't even know why I am doing so. Maybe hoping that somebody else has been in this situation and survived it? Maybe in case some other person comes along, reads this and realizes that they are not alone?
I honestly don't know.
If you have read this, thank you for doing so. I'm sorry if it's been disjointed or rambling. It's the best that I have to offer right now.