Sufferer Struggling with old wounds reopened

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IAmJohnH

New Here
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.
 

ladee

MyPTSD Pro
Welcome @IAmJohnH , what a horrible anxiety ridden way to live. So glad you are here, not glad for the reasons. I have had a few anxiety attacks that were so bad , couldn't talk, couldn't explain... but nothing like what you have experienced. I am so sorry it is going to take so long for you to receive treatment..

Hopefully you will at least derive some comfort from not being alone with the anxiety, and hopefully meds will be on board and it will help.

Glad you found us...
 

NearMiss

Policy Enforcement
Hi. Hopefully your doctor can get you set up with anti-anxiety meds right away. Don't let them try to start you off with SSRIs though. Those are for depression and won't help you. Most anti-anxiety meds are addictive, so docs don't like to prescribe them, but it's what you need to start with. Good luck.
 

hithere

MyPTSD Pro
Sitting here trying to find a way to begin this, it's clear to me that this is going to be much more d...
Hello. It is no wonder you have extreme anxiety and panic. When my dad had open heart surgery I was told that many, many people who have had open heart surgery begin to have severe anxiety with panic attacks. It is my theory the body went through a huge trauma and is dealing with it. Yes, you were "asleep" through the surgery, still your body knows what's happening to it.

Also, can you find the ER doc that prescribed the acid reflux medication with his/her theory and get an appointment with them? Contact them directly and tell them the acid reflux medication actually helped. I know of at least 3 people with sever, and I mean SEVERE anxiety that once they were on acid reflux medication their anxiety was greatly reduced. ! That part of your body that really gets iritated by acid reflux is not far from your heart. Again, I'm not an expert, but I'd try to find that ER doc and see if he could point you in the right direction. My uncle was an ER doctor and it is such a fascinating field. I feel the ER doctors I've met were some of the best "guessers" of my families medical problems. Some ER doc undoutbtly saved a few of my family members lives by "guessing" correctly when the regular docs never thought of it. Biofeedback may be useful for you anxiety condition. Using one of those neuro machines where you make the dot move with your mind... I don't know what it's called, but I wonder if that treatment would help?
 
Hi John..welcome. You have been on such a tumultuous journey. I cannot even begin to imagine how you must feel about what is happening to you right now.

It seems so ridiculous that when your heart was failing and every time it appeared to be failing you received incredible, life-saving treatment and were completely accepted with that particular medical condition - no questions asked.

But now, you obviously have a mental health condition and are being mostly ignored. I really feel for your situation it is so unjust.

Honestly if you cannot locate the ER doctor as @hithere suggested... I would be pulling out all other stops to locate a physician who is licensed to prescribe the reflux meds and a mild anti-anxiety med for you immediately. I appreciate that turning up to a physician from a cold start and asking for this type of assistance is difficult but maybe print out what you have written ^^ above and let them take a read. Tell them they can verify this with your medical history if needed and if necessary you are willing to be prescribed limited doses with close monitoring by them until you can see a psydoc or someone who can assist you further and who is able to take over prescribing medication.

Alternatively find a physician who is willing to admit you to a psyc facility along with your medical history so they can jump start your treatment asap with a psydoc., overseeing you meds.

You should not have to live like this...waiting for endless rounds of assessments etc., to get some assistance with these panic attacks and the anxiety.

I understand that most regular doc's almost always jump to the worst case scenario when someone with a heart history attends ER with chest pains. That is a really safe way to respond. However once that has been eliminated as the cause for the symptoms it's time for them to behave like grown ups and face the truth - that you have severe panic/anxiety disorder and refer you within a short time frame for assistance. Not treat you like a doctor shopping druggie.

You are definitely not alone when it comes to having severe panic attacks. My chest pain is crippling at times. My blood pressure drops through the floor (who knew??) When I have fainted or lost the feeling in my legs - medical staff make an assumption that my bp must be so high it is off the charts. Again they look for heart issues. They too lose interest when it becomes apparent it is a anxiety/ptsd/panic attack issue. I am sort of ok with that now but it was a really big deal when I started getting them.

You may need to advocate for yourself to get anywhere in terms of treatment and medication @IAmJohnH.

Thank you for writing out your story. I hope we can help support you along the way to managing your symptoms.
 

IAmJohnH

New Here
Thank you all for the warm welcome and the replies.

The day I wrote and posted this I was in a state of despair and hopelessness that I can scarcely understand myself much less describe to others. I felt like I'd hit a wall, like I was utterly powerless and unable to effect any sort of change in my circumstance.

Thankfully those circumstances seem to have changed and I am back to update.

After posting this I had two more experiences in the ER. Both as described above... The doctors ran an EKG and blood work, verified that I wasn't having a heart attack, observed me for a few hours and discharged me.

I finally made it to my appointment with my new "primary care physician" - the person the ER doctors kept insisting I would have to speak to about anxiety.

The first thing my new primary care physician told me, upon entering the office is that she did not treat anxiety disorders and that, in fact, beyond colds and things of that nature she would be unable to treat me for anything at all - as she felt a cardiologist would be better suited to the task. Ironically my cardiologist responded in exactly the opposite way when I spoke to his office to explain what the other doctor had told me.

Catch 22's are so much fun. I have become the projectile in a game of hot potato and it's really something else.

But it's not all bad news.

The primary care physician did agree to treat my GERD / reflux and refilled the Zantac prescription which seems to be helping substantially and my ability to eat and appetite have returned.

In my initial post I'd neglected to mention a factor that I didn't think of as important at the time. The cardiologist had prescribed me a beta blocker, a heart medication, as a precaution. He was not sure if I actually needed it or not, but he felt it a logical prophylactic measure. I had been taking this medication for about 2 weeks when the panic attacks began.

Ironically some beta blockers are used to treat anxiety. Sadly the one I was prescribed seemed to have the opposite effect and may well have been causing or at least exacerbating the unprecedented levels of panic that I was experiencing. My new doctor did not want to validate this notion, nor did my cardiologist - but I did find multiple testimonials online from people who've had similar experiences with this particular medication ( Lopressor ).

The beta blocker was stopped mid way through my ordeal ( after the second Treadmill stress test ) and as it's made it's way out of my system things have begun to improve. Whether this is related or simply coincidental I cannot say for certain.

I have not had an ER visit or a panic attack in 5 days. My anxiety is still worse than it usually is, but it is at least manageable for now.

The next stop on my journey - where my "primary care physician" has referred me for help, is a local mental health clinic. Unfortunately as I stated in my original post - in my area getting seen at the clinic is a process that can take weeks or even months.

I'll be walking into their doors Monday morning at 8:00 AM as a "walk in" for evaluation and to begin their process.

Thankfully things seem brighter than they were the day I first posted.
 

ladee

MyPTSD Pro
Fantastic news. Amazing how reaching out helps so much. Just to know we are not alone, and that people really do understand. Glad you are feeling better.

I am also one who can not take beta blockers... they cause me to be exhausted and muscle cramps... was a long time ago and will have to see if I can remember if my anxiety went up also.. right now don't remember... but for some, they are horribly dangerous drugs... they were given to me after an episode of tachycardia.... glad you got off of it... and really happy to hear you are feeling a little better... thanks for letting us know how you are doing.. :hug:
 
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