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Living With Panic Disorder

My Story

I don't think I truly grasped what the phrase "hell on earth" meant until November 26, 2002. On that night, the evening before Thanksgiving, my life took a dramatic turn. Although I've learned to cope, and have found some relief from a combination of therapy and psychotropic medication, I will never be the same person that I once was.

going for a swimThe First Attack: I had just retired from my role as publisher of Ellora's Cave so that I could spend more time with my kids and do what I loved best: write. I was happy with this decision, elated by it, and couldn't wait to start pumping out book after book. Thanksgiving was going to be at my house that year - the first time I ever hosted it. I had a brand new house, a brand new Mercedes-Benz, two happy, successful kids, and I finally felt all grown up. 

It was cold and snowy out that night. The Matrix was playing on the DVD. I was sitting in a chair watching the movie with my youngest daughter when I became aware of a sensation of tightness in my chest. I had felt that same curious sensation the night prior when driving to the Post Office, but hadn't dwelled on it, and eventually the feeling went away. The next night, however, I dwelled on it... and the feeling didn't go away.

The tightness worsened and a choking sensation gradually accompanied it. I began to hyperventilate. My heart rate, as it would many more times over the years, skyrocketed. I was nauseous. Dizzy. Chills and hot flashes racked my body. I couldn't breathe. A sense of impending doom smothered me and I knew with every cell of my being that I was having a heart attack. I was going to die. "Get Jazz," I gasped to my youngest, instructing her to find my eldest daughter. "Tell her to call 911 for mommy."

I laid on the sofa as paramedics hovered over me, hooking me up to all sorts of machines. Finally, they got me on a stretcher and in the back of the ambulance. I remember being certain I'd never make it to the ER. The roads were terrible - so icy. It took forever to get there. I made the paramedics promise they'd tell my husband, parents and children how much I loved them, that they were my last thoughts.

The ER nurse fed me nitroglycerin. It gave me a headache, but didn't alleviate my symptoms at all. Blood was drawn. Test after test. My heart rate would not go down. It was beating so hard you would have thought I was running a marathon rather than lying in a hospital bed.

Several hours later, an ER physician tells me, "I'm not certain what happened to you tonight, but I don't think there is anything wrong with your heart."

Not certain? Doesn't think there is anything wrong with it? 

Very comforting.

I was discharged not too long thereafter. My mom drove me to her house since it was closer and I slept in bed with her that night. I cried myself to sleep, afraid I wouldn't wake back up. Something bad had happened, something unlike anything I'd ever before experienced, and I just knew I was going to die of this undiagnosed illness.

Death didn't come that night, but two nights later I was back in the ER again. All the same symptoms and terrifying new ones: numbness and partial paralysis. I couldn't breathe. (I can't begin to describe how terrifying it is to feel as though you are suffocating.) Again, I was certain I was dying. I would be certain of this fact more times than I can count over the following years.

True Terror: Nobody told me, or even suggested to me, that I was having panic attacks. I went on for the longest time believing there was an undiagnosed, deadly disease lurking inside of me that would, sooner rather than later, kill me. I was in rural Ohio, God's country, a place where one doesn't speak of "mental illness" let alone tell a solid member of the community that they have one.

The hell of it is, I believe those doctors gave me panic disorder. There is a difference between having a panic attack and having panic disorder, you see. People with PD have severe, multiple attacks, ranging anywhere from a few times a year to several times a day. I was functioning at the several times a day end of the spectrum.

If I had been told I was having panic attacks back when I'd suffered but one or two of them, there is a plausible chance it wouldn't have progressed into PD. The not knowing, and being told "we don't know what's wrong with you", was unbearable. I dwelled and dwelled... and suffered attack after attack after attack. The attacks would last for an hour or more, multiple times, every single day. It was, and sometimes still is, hell on earth.

Medicines: My primary doctor didn't know how to help me. He should have referred me to a specialist the minute he suspected PD. Instead, he took matters, and my mind and body in the process, into his own uneducated hands. What came next would be truly grueling. And because I was so doped up that I sometimes couldn't function, I don't recall about a solid year of my life.

The next year would see me on a steady diet of drugs. Paxil. Ativan. Beta blockers. Zonegran. Xanax. Cymbalta. Nortiptyline. Lexapro. And probably others I don't remember. Each drug carried its own side effects. Weight gain was awful. Some medicines induced suicidal compulsions, horrible feelings of believing I needed to die. Some just made me a zombie. Some agitated me, caused me to pace for endless hours. Some knocked me out, keeping me from believing I was dying, but preventing me from living as well.

Eventually I'd had enough and took myself off all medication. An unfortunate residual effect of all the drugs I was fed was that, to this day, I am medicine-phobic. In other words, I practically have to be force fed new medicines. If I haven't tried them before, and am therefore uncertain as to if they will make me suicidal or give me some other bad reaction, it's mission impossible to get me to take it. And I don't just mean psychotropic medicine, but also things as simple as antacids and antibiotics. But I digress...

Without the drugs I could feel, think and rationalize again. But, unfortunately, I couldn't seem to rationalize myself out of having PD. I took up yoga, went to a counselor, went to a psychic healer. I would have gone to a witch doctor if I'd known where to find one. There was no non-medicinal cure I wasn't game for trying.

I didn't get better. I lived in a constant state of agitation and fear.

Therapy: I told my then-counselor that I feared never getting better, never working again, just withering away until I went insane and died. (FYI: no one has ever gone insane or died from PD.) She had me do mental homework and we talked about my underlying fears, but in the end it wasn't enough. There seemed to be no answer, no end in sight. I could feel myself getting worse as the attacks became more and more frequent. I knew it was just a matter of time until I started having them all day every day again. I couldn't live like that, in a constant state of agitation and unadulterated terror. For the sake of my husband and children I knew I had to keep fighting, but there were quite a few times I considered giving up and ending the nightmare.

The thing of it is, there is no sure-fire way to prevent future panic attacks from occurring in me. All those months of not having answers, of wondering what was going on, took their toll on my mind. Maybe knowing it was panic would have stopped the attacks from progressing into PD - maybe it wouldn't have. Maybe it only takes one measly attack, just a single moment in time, for the complex human brain to become self-aware of all the dark, terrifying places it can take you to. The person who has never suffered a full-fledged panic attack lives in ignorant bliss, unable to fathom this hellish place in the mind that people with PD are taken to. 

God, how I envy those people.

And how ironic that I was watching The Matrix the first time I ever had an attack. Suddenly I understood how Neo felt... life would have been ignorant but blissful had Morpheus not enlightened him.

At any rate, I knew I needed intense therapy, something much more than a 50-minute session once per week. I found an anxiety clinic in St. Louis that said they could help me. I didn't exactly believe them, but they were reputable. And at this point, I literally had nothing to lose. I took off for Missouri a couple of weeks later, hoping, praying, that this was the golden ticket.

I stayed at the clinic for 3 weeks. It was awful, horrible and wonderful. It was like boot camp for the brain. The doctors mentally tore me apart before putting me back together. They forced me to have panic attacks - constantly, endlessly - until I just didn't care anymore. They promised me that the fear would lessen as I allowed myself to have them. Eventually, it did.

Those weeks were heaven and hell all at once. The doctors and nurses not only induced panic attacks in me, but they also managed to talk me into trying the medicine Zoloft. I still remember sitting with the nurse, Jean, at a table and staring down at the Zoloft tablet. I cried for about 5 minutes before I found the nerve to swallow it. They made sure I wasn't alone for the next few hours to prove to me it wouldn't kill me.

Today: Over time, I gradually began to get better. I could get out of the house, drive alone, even travel to Europe again. I could spend time with my kids, doing everything from playing Yahtzee to trekking to Jim Morrison's grave. I could work to promote my company and our authors once more, even make TV appearances. In essence, I now lead a pretty normal life.

The panic attacks eased, only resurfacing around my menstrual cycle or in moments of extreme emotional duress. There are still days when my mental boot camp training and Zoloft aren't enough and I need the additional help of Xanax. But, fortunately, those days are now more the exception than the rule. Still, there are also days when nothing, not even Xanax, will turn off the internal PD trigger. 

I try not to let fear of future attacks get the better of me, but I'd be a liar if I said fear doesn't occasionally surface. My biggest worry is that one day the mental training and Zoloft will stop working altogether and I'll be back at square one.

For the most part, though, I remain hopeful and optimistic. I have a life again, and one that I cherish with a depth I didn't before I developed PD. If there is anything I can thank the disease for, it's in helping me realize that spending time with my loved ones is more important to me than spending time at work.

If you are having panic attacks, please don't suffer in silence. Get help. You are worth it!

Why People Have Panic Attacks

One of the first things I learned in St. Louis was that it isn't possible to rationalize your way out of a panic attack. Reason being, it isn't the advanced part of the human brain that is acting out of turn, but the primitive, emotional part inherited from our ancestors. Our body's natural response to a physical threat is called the fight-or-flight pattern... it's as instinctual to humans as migration is to birds because it's what kept our prehistoric counterparts from being killed off by larger predators.

If you walked around the corner and found yourself face to face with a saber-toothed tiger, your body would do all the same things that it does during a panic attack: heart rate accelerates, thereby quickly pumping blood to the muscles. Sweating commences, making it easier for you to slip away and harder for the predator to hold onto you. Adrenaline races, giving you the needed energy to stay and fight the threat or run and flee from it.

A panic attack is triggered by the very same fight-or-flight reaction that saved the life of your grandfather hundreds of thousands of generations removed when he was faced with a saber-tooth tiger. The only difference is that when the bells and whistles go off in your brain and your eyes visually scan for the threat and find nothing, your mind turns inward, begins scanning your own body, and decides there must be something terribly wrong internally. Hyperventilation soon occurs as the belief you are dying kicks in.

To this day, scientists still do not know what sets off the misplaced fight-or-flight reaction that PD survivors are (seemingly) randomly attacked by. Forgive the soapbox, but we inhabit a sexist, misogynist society. PD tends to be dismissed as an "emotional weakness" because it happens primarily to women. If it primarily happened to men, you can best bet we'd have some answers already. 

Scientists can give 80-year-old men sex lives, but can't find an answer to PD? There is something terribly wrong with this picture.

Underlying Causes

For the better part of two years I listened to idiotic doctors tell me "it's all in your head". I almost believed them because they couldn't find anything physically wrong with me, but I never quite gave up the deeply seated belief that something physical had brought on that first attack. After all, for about 6 months before my first attack occurred, I'd had this really weird symptom that no doctor had been able to plausibly explain to me: my ears would turn really bright red and be hot to the touch, like they had been lit on fire.

I had at least three doctors tell me it was a blushing mechanism. (Ooookay.) I obviously remained unconvinced as I was not a moron and knew what blushing felt like, but I wouldn't get any answers for another couple of years. Eventually the feeling of being lit on fire spread to the rest of my face and to one of my thighs, but again I digress...

Finally, after part of my face went numb, an ER doctor admitted me into the hospital for tests. My new primary physician in Florida told him that while I was in there she wanted me checked for this, that and the other. I underwent a battery of tests and, indeed, it all turned out to be in my head, though not quite in the manner that my former doctors had thought.

Five lesions were detected in my brain, indicating possible Multiple Sclerosis. I was depressed and elated all at once. I didn't want to have MS, but after all this time it was a relief to think I might finally have some answers as to why this had all began.

MS is not a diagnosis one can be given on lesions alone because there are many things, including smoking and migraines, that can cause brain lesions. I am still, all this time later, undergoing MS tests, but at least now the doctors are taking my symptoms seriously.

In addition to possible MS, the doctors also found a condition called Hashimoto's Thyroiditis in me as well as another condition called sleep apnea. Hashimoto's means the thyroid is dying, but isn't quite dead, so it doesn't show up in traditional blood studies. (You must ask your doctor to check for HT specifically and will probably need an uptake scan to confirm it.) 

Sleep apnea is a condition where you quit breathing in your sleep and never enter full REM. The result is you believe you have slept, but are, in fact, sleep deprived. It causes depression, anxiety, fatigue, sensory changes (i.e. tingling and numbness), and a slew of other problems. If you snore, it's a good indication that you might have sleep apnea.

At any rate, both Hashimoto's and sleep apnea feasibly explain the symptoms that led to my first attack. MS would explain the feeling of being lit on fire if it turns out I do have it. If I don't have it, then I will seek further tests until I do find what's wrong.

Not everyone will get their first panic attack for the same physical reason, but I will always believe in my heart of hearts that there is indeed a physical root for every panic attack sufferer out there. Doctors used to say that certain ulcers were caused by stress, only to find out later that they were caused by bacteria. In other words, they don't know everything, they just pretend to. 

If you feel something is wrong with you and your doctor doesn't take you seriously, don't listen to their BS. Go to a different doctor - and another and another - until you finally find one that takes you seriously and is willing to inconvenience their self long enough to solve the riddle. If I had stayed with my first doctor, I'd probably be in an institution today, convinced I was crazy and it was "all in my head."

During college, I learned in Bio-Psych that it is impossible to separate the psychological from the physical because they affect each other at every turn. Every illness seen as mental should be studied to find the physical cause.

Panic Attack Symptoms

4 or more of the following, reaching an apex within 10 minutes:

  • a feeling of imminent danger or doom
  • the need to escape
  • heart palpitations
  • sweating
  • trembling
  • shortness of breath or a smothering feeling
  • a feeling of choking
  • chest pain or discomfort
  • nausea or abdominal discomfort
  • dizziness or lightheadedness
  • a sense of things being unreal, depersonalization (example: see people talking, but cannot understand what they are saying)
  • a fear of losing control or "going crazy"
  • a fear of dying
  • tingling sensations
  • chills or hot flushes

Because panic attack and heart attack symptoms are hauntingly similar, if this is your first attack, please seek medical help immediately.

Getting Help

I only feel comfortable recommending what worked for me - the Saint Louis Behavioral Medicine Institute - but there are many different programs out there. SLMBI is awesome... I can't say enough good things about their program and staff. They use a combination of cognitive-behavioral therapy and medication dispensed by a highly trained psychiatrist who specializes in anxiety disorders. SLBMI is world-renowned and touts a heady success rate. 

If you suffer from PD or any other anxiety-related disorder, don't wait! Call them today. You are worth it!