Tuesday, February 05, 2008

Panic Disorder

I'm a little nervous about this post, which is why I jumped right into the cold water by referring to it. I feel like I'm coming out. Ha.

I apologize for how long it is; I've edited several times. It's a long story.

I was diagnosed with panic disorder when I was 17.

The full story starts back as long ago as I can remember: I was terrified when my parents went out at night. This fear was extreme in every way: it held on too long, and even when it was more age-appropriate, it was intense and unrelenting.

I believed that when my parents left the house at night, they were not going to return. I wasn't terribly specific about how they would meet their demise -- as I got older I usually feared a car accident, but when I was little we lived in a city where they usually took public transportation -- but that wasn't the point. Logic was, indeed, beside the point. I simply knew they were walking out of my life. I reacted with terror appropriate to my belief, but I was the only one who held the belief so it seemed...extreme. Through the sixth grade, I began my panic when I heard of their future plans to go out, and worried off and on (mostly on) until the event had passed. I begged them not to go, I begged them to find one of the few babysitters who would be kind to me (more on this later), I begged them to choose a locale walking distance from our home.

The rules of my fear were this: a) if they were within walking distance, or even public transportation, if I could reach them on my own child's steam, that was okay; b) if I was with a babysitter who didn't get angry at me because I was so frightened, that was okay; c) if they came home on time, that was okay. In order to manage the monster of my fear, I came up with the idea of "the latest." My mom would tell me they would be home at "10:30 at the latest" (or whatever time); then I could relax my vigilance until the hour crept closer and closer to 10:30. Inevitably, they would be late; also inevitably, the phone call with a new "latest" wouldn't come until 10:37. I don't know if you can even imagine what those seven minutes were like for me. The cold sweat, the nausea and vomiting, the animal fear clawing me from the inside out. And the babysitter, furious at me for not going to bed and convinced that I was inventing my physical symptoms for attention.

My mom later told me that they tended to miss the "latest" times because they resented being tied down by my anxiety. Um, thanks. I, on the other hand, sat at home rubbing my hands together with glee over the control I exercised over them.

I was only scared at night. My parents obviously went about their daily lives while I was at school, and we were often cared for after school by a babysitter, and that didn't bother me.

When I was seven or eight my parents took me for psychological testing, both because my fear made their lives difficult, and worried them; and because my father's brother (who died when I was 4) had been seriously mentally ill. Testing ruled out my uncle's problems (paranoia, schizophrenia, bipolar) and revealed me to be just a normal bright anxious kid. So I started seeing a psychiatrist at eight and kept going 'til I was thirteen. I went two days a week. Hebrew school and the shrink were my extra-curriculars.

But nothing changed. I didn't get even remotely better. I remember Shrink #2 (I saw two because we moved to a new city when I was ten) being impressed that I was willing to take the trolley by myself at age eleven. I got the sense that she thought my independence was a sign of improvement. But my leaving the house was never the problem! I started walking to and from school, and had my own house key, at age nine, in a city far larger and more dangerous than the one where I took the trolley (a full year before Shrink #2 ever met me). I had the sinking feeling she didn't really get it, no matter how much I explained.

As an adult, I have other reasons to be highly skeptical of both shrinks. I remember them asking tons of questions about my grandparents and my sister, and nothing else. What they should have known from my parents was: a) I lost both my grandmother and my uncle (my father's brother) by the time I was four. My uncle committed suicide by jumping in front of a subway (my parents tried to keep the details from me but I figured it out) and in the same month, my family moved to the Big Apple. I refused to get on a subway. Good times. b) By the time I was ten and met Shrink #2 I had lived in three cities, and attended six schools. I won't bother to count the Hebrew schools. Really, no consistency. c) My mom is one of the most anxious people on earth. This is readily apparent to passersby, let alone mental health professionals. What the docs could have learned from me was that d) My mom's anxiety sometimes spun into rage and she berated me verbally for hours on end and even hit me. (Never my sister.) I am not saying that any of these factors necessarily caused/affected my panic disorder (though apparently stressors, such as deaths and moves, can trigger it, and it's considered genetic). But I have just listed four serious problems for a little girl, and all they wanted to talk about was sibling rivalry and my cranky (living) grandparents.

Nothing changed until I got to be about twelve, and we stopped having babysitters. I suppose technically I was in charge of my sister but we were both good kids and we knew what to do, what not to do, and how not to get caught, so I never had to pull rank. No babysitter left me with only my own fear to manage; I could distract myself with T.V. and reading and not pretend to go to sleep, I could step out of the house if I needed to, I could use the phone if I wanted to. Knowing I had power was a big, big deal. Ironically, I felt much safer without the authority figure, 'cause all they'd ever done for me was cramp my coping skills.

I collected the few adults that understood my problem, made scratched lists in my journal and went to them sparingly so as not to wear out their kindness. Babysitters got pissed that I was so high maintenance. Overnight camp was a nightmare (and yet I got sent for three summers, my parents thought repeated exposure to agony would cure me). The counselors thought I was manipulative and bratty, no matter how much I tried to explain that I was faced with four weeks of literally not knowing if my parents were dead or alive.

In middle school I came up with a metaphor for my fear. Our language classrooms were equipped with tape recorders in every desk and a teacher's control console. She could send the same signal to every machine, so we could record dialogue practice, or she could send a tape to just a few kids. This setup had a quirk I've never seen before or since: the tape recorder recorded on both sides of the tape. If you recorded on side A, side B was the same recording, only backwards. My fear was like that tape recorder: it took over every corner of my brain, recorded on both sides. Plenty of other stuff bothered me, but nothing else took over my brain and my body.

Life went on like this through high school. I managed to be a relatively normal kid, given how much energy I spent coping with my fear. Nobody ever knew anything was wrong, beyond typical bright-girl-social-anxiety-crap. Yes, even in high school, I was scared when they were out at night. I behaved differently than when I was little, I didn't beg them not to go, but when they were late I was terrified. I have visceral memories of kneeling on the leather couch, looking out the window at the driveway, searching up and down the block for their headlights.

My junior year of high school I went through a funk and a caring English teacher (we're still in touch, she sent Jo an adorable sweater) dragged me to the school social worker (English teacher and social worker were friends). I hadn't been in therapy since 8th grade by that point. (My parents stopped the sessions when I got a little better in middle school, thanks to the disappearance of the babysitters.)

The school social worker, P., turned out to be absolutely fabulous. She had amazing artwork all over her office, and inspirational quotes, and the most colorful and daring wardrobes I'd ever seen. Her office smelled of the marvelous combination of her sweet perfume and incense-y potpourri. I talked about my adolescent angst, and then I figured, she was so warm and open and kind, I'd trot out the fear problem. She nodded and said, "Sounds like panic disorder." My jaw hit the floor. No one had ever said it sounded like anything (except for "manipulatingly spoiled" and "fake" and "indulged").

She sent me to see her friend, Dr W., a psychiatrist at the local mental health clinic. He agreed with her diagnosis and suggested we try some medications. Again, I was floored. A diagnosis and a solution?? It didn't escape me that the school social worker and health clinic doctor solved in a week a problem that all the private psychiatrists in the world hadn't even touched. Though they were happy to take my parents' money. LAME.

The meds situation was a little touchy; my dad had a lot of anger with the entire mental health profession for failing his brother and he was reluctant to let them mess with his kid. Dr. W. was amazing, explaining to my dad how much medications had changed since the 1970s, and also setting up the most extraordinarily careful medication regime you've ever seen. I am always astounded by how quickly kids are medicated these days because Dr. W. was soooo careful with me. He started me on 5 grams of Pro.zac. If you know anything about the drug, you know that wouldn't cheer up my 12 lb dachshund; and also, that to get 5 grams, you have to take the liquid. He slowly titrated me up to a normal dose, 15 grams I think.

He also prescribed a medication called Klono.pin, originally used for epilepsy but now widely prescribed for anxiety. I think it's similar to Xa.nax. I started off with .5 mg pills that I cut in half. (When Alanis Morrissette came out with her album "Jagged Little Pill," that resonated; I had my little bottle of bright pink pills, jagged at the edge where I'd painstakingly cut each in half with a kitchen knife.) The SSRI (class of drugs that includes Pro.zac, Zo.loft, and others) was to lower my level of anxiety in general; the Klon.opin was an as-needed drug that I could take when the panic broke through.

They both worked. THEY WORKED. I started the regime mostly because I wanted to go away to college but I just didn't know how I was going to do it with my fear. And those drugs made it possible. The school of my dreams was 7 hours from home, and I went there, instead of having to limit myself to a local school (which would have been easy, we lived in an area full of colleges) which I feared I would have to do if I couldn't get control of my monster. I was blown away by the Klono.pin in particular. It was unbelievable to take a pill and to actually feel calmer in twenty minutes. I felt like such an animal, but not in a bad way.

Today, I still struggle with panic. I take Lexa.pro (since graduating high school and leaving the town of Dr. W, I have been under the constant care of psychiatrists, who have tinkered with my SSRI prescriptions; I've also been on Zo.loft and Ce.lexa). I still have the Klono.pin for emergencies. I am able to be a person not governed by my fear, and it has made all the difference. I ache for the little girl I was, and now as a full-fledged adult, I still can't understand why so many adults were so unkind to me. The babysitters, the camp counselors, parents on the third grade overnight trip, even my own parents, even the psychiatrists. I work with children for a living, and I've done so in many different contexts. Maybe my experience has made me more sensitive, but I don't think it's so revolutionary to listen to a child.


Renee and Janice said...

Wow! What an incredible story. So personal, so heartwrenching and so true for you. I'm so sorry you went through all that as a child. I am a therapist with elementary children and I just try to listen. I figure that we learn best from our own experiences so i try to remember what I wanted when I ws their age. Thanks for reminding me of those things and for being so honest about your past and things you still struggle with today. I take medication as well and know that some days, life can just be a battle in and of itself.
Best of luck to you!!

Mo said...

Thanks for writing about this. I'm not sure why our culture is so intolerant of a child's behavior that appears to be different or "spoiled". We deal with this all the time when people see some of the Boy Child's behavior and just look at us in disbelief that we "let" him act differently. I'm really glad that you finally found someone who identified your problem and were able to get suitable medication. I'm sure there are many people who just keep on suffering.

Jen said...

Oh, Lo. Wow. I'm aching for the childhood you, too. What a miserable way to grow up, and to have so many adults be so clueless, compounding the suffering. A big, big, big hug is going back in time to that poor kid.

My struggles with anxiety are far less severe, but have really screwed with my life, so I only have the barest inkling of how isolating and agonizing it was for you when you were untreated. I'm glad you are doing so well now.

Thanks for being so honest about something so deep and personal.

judy said...

I have had panic disorder since I was very young. Like you, it was only at night time...I feared the house would fall in (literally.)
As I grew I sought help and learned that panic disorder is a progressive disease that can lead to full on agoraphobia.
In graduate school I earned my Masters in Social Work and worked with people like you and me for years. My ability to empower others helped me so very much...And that is what you are doing right now LO! Through your honest outpouring you are empowering others and helping to stop the shame and misunderstanding.
There are a lot of us out there and I am so glad to have found you.
Please visit my blog (I have lurked for a while, but just started my blog)I have tons of information and quite a nice list of medical professionals who are extremely talented and dedicated to panic disorder. Just so you know I am on Z+loft and have been for seven years. I found a wonderful OBGYN who helped me through two pregnancies while keeping panic at bay.
I don't know if you wish to be a bio Mom, but if you do, please contact me because it can be done safely!

The Fonaholics said...

Thank you for sharing such a personal story, thankfully where i work it is assumed that a child's behaviour might indicate an illness rather than manipulativeness especially at such a young age...even an adult with such enormous fears, i would consider unwell. I agree on the private psychiatrists sucking money out of parents too...

Shelli said...





I'm so proud of you for sharing.

I always used to joke that I "inherited" the worry gene from my Bubbe z"l, but that was just my "cover story."

I have the clonzapan for "emergencies," the dissolvable kind, and lexapro 10mg a day.

I wish, wish, wish that the help you found would have come earlier for you.

Erika said...


I didn't even know there was a name for that which still stresses me!

I have HUGE panic disorder, but it's triggered differently than yours. When someone I dearly love (it was my parents as a VERY small child, then later on that stopped and changed to friends, siblings and girlfriends) travels (as in having to get on a means of transportation for more than 1 hr, usually out-of-town situations) or when someone I dearly love said they'd be somewhere at a specific time and they're not there, I break out in a cold sweat and worry myself to death until I KNOW they're safe.

I didn't even know there was a name for it. I'd always just been called a worrywart. I have had many temporary and permanent side effects from it as well, mainly my chronic irritable bowel syndrome, my gastritis, and I used to get something called dishydrotic eczema (little boils between fingers and toes) because of it.

I too have a history of mental illness in the family, and my mother also has huge separation issues. Do you know if this could be related to that?

Unluckily for me, although my dad is a doctor, he has never believed in "mental doctors" and says psychotherapy and drugs are useless because that branch of medicine is corrupted by a bunch of fags (yeah, he's homophobic... his punishment? 2 out of us 3 kids with my mom are gay ;) hehehe)

Anyway, thank you for sharing this. I will talk to my doctor about it as soon as I can (I was always ashamed because my father -like the adults in your life- simply kept telling me that I was spoiled and I should just "lighten up"). Thank you again.

Lo said...

Thanks, everybody.

I *know* I am not the only person with these issues, but it never hurts to hear it. :-)

Shelli, gotta love those Ashkenazi Jew genes. ;-)

Erika: I am really touched to have helped you. I am no doctor, but what you go through sounds so very similar to what I've experienced, if it's not panic disorder I would think it's some kind of anxiety. Keep asking until you get an answer.

gypsygrrl said...

thank you for sharing this... i believe i have dealth with an anxiety/panic disorder since i was a very very young child. everyone chalked it up to me being overly emotional re: my parents' divorce and such. no one ever picked up on it, that it wasnt normal... i wasnt diagnosed with depression and generalized anxiety disorder until i was 31 years old. THIRTY-ONE. that still blows me away. within a week of starting medications, i was away on a camping trip with then-gf and the carbon monoxide detector went off. i completely went into a panic and she reassured me it was OK and we were not going to suffocate to death by going to back sleep for a few hours (it was the battery source for the camper van, we werent pplugged in, apparently and so the batter ran low) i insisted she open every blessed window in the van and even still, i laid there beside her shaking inside and a.w.a.k.e. for over 90 minutes. the thing with the meds ~ it felt like i finally SAW how irrational that panic was. i told my doctor later, i felt like anyone else woulda understood the battery running out and been fine. i have always carried that anxiety.

phew. i still have problems getting medicated for it [doc refused because i was going into nursing school and said they do "random drug tests" ~~rolling eyes~~] yesterday was my first day of clinicals and i coulda killed for a ultra-small dose of ativan to take the edge off of the anxiety i was feeling. i sucked it up and went without, but seriously... why should people have to suffer when there are medications to help? i dunno.

sorry for the rambling on here... i appreciate you talking about your panic and your history. it is good to know i was not the only kid who panicked like that.


J* said...

Thank you for sharing. Whereas Zoloft saved my life, Klonopin has changed it. I think the more we talk about these things and be out about them, the less there will be a stigma attached.

I still worry and stress like it's my job, but it's not my LIFE anymore.

And I don't know about you, but my wife is the exact opposite of me and has grounded me in so many ways, on so many occasions.

Here's to a semi-panic free existence from now on. :)

Kerry said...

I too have had anxiety forever. My aunt clued me in this summer that she remembers me having anxiety as young as 9. I am now 39. I just finished 2 years of counseling and for right now I am ok. I have anticipatory anxiety which means I think of the most horrible things that could happpen before the event happens. My wife recently got a motorcycle and I worry everytime she rides it. Last week while she was gone the sirens for the firehouse went off, I was hysterical by the time she got back because I couldnt reach her.

I am also student teaching. It's alot and I feel at times I am becoming unraveled.

jay said...

what a post. thank you for your honesty. as we're sharing here in the comments place, i'll chip in and tell you i have mild OCD tendencies, which drives vee mad (and me too) and is worse when i'm anxious. i'm working on it!

and i too wish that the stupid adults had listened earlier. sigh! xx

Anonymous said...

"I got the sense that she thought my independence was a sign of improvement."

It's so frustrating when you're reaching out for help and all you get are compliments on how well you're functioning. I totally get that part.

Thank you for writing this, I know it wasn't easy. I'm sure that Jo's arrival has given you a new subject to be anxious about, but also a source of joy. I hope there's an abundance of the joy part.

isn't it pretty to think so said...

I just found your blog and read this post, and I can't believe what I'm reading. As far as the childhood fears, i mean...that was ME! i was petrified when my parents left the house, so convinced they would die. And none of the crying, screaming, begging, or vomiting would convince them to stay home. And when they didn't go out, I would constantly sneak out of my room to check on them to make sure they were alive. And if I got caught checking, I'd get in trouble. Anyway...seeing in other areas of my life how the fear of losing people is still here and can be quite debilitating. Thanks for your post.

calliope said...

I am just now reading this and am BLOWN AWAY by how amazingly you describe the hell of your anxiety.

Thank you, thank you for sharing this part of yourself with us. You have been so helpful to me as I begin getting ahold of my own mental health issues.

much love