15 December 2006

curse the internet if you will

but it is times like this that i find cause for celebration.

connections, building bridges, breaking through silences - AND FOR GIVING US A PLACE TO FIND ONE ANOTHER AND A FORUM IN WHICH TO DIALOGUE!

earlier today, i received an email from a woman that had read my blog post yesterday about the latest black box warnings to be added to antidepressants. her name is summer. she sent several links along with her note. i was quite moved by her journey and her experiences with paxil - another commonly prescribed ssri drug.

there seems to be a misconception amongst not only the population, but with doctors, that these medications aren't dangerous in and of themselves. i know that many people have been told that they can stop taking them at any time - and that there will be no side effects. this simply isn't true. as i've mentioned before - the ssri drugs particularly scare me. they are designed to balance a chemical imbalance, hence providing relief. but there are several things wrong with the theory.

*if you don't have a chemical imbalance, the meds can create one, which more often than not finds many people with a life long need for medications that are only intended to be used short term. as for the long term use effect - who knows? they haven't been in existence long enough to see what effects this will have on the taker.
*people aren't being tested for chemical imbalances before being given the pills.
then it gets even murkier:
*does panic/anxiety/depression cause the chemical imbalance or does the chemical imbalance cause the panic/anxiety/depression? again, no one really knows.
*no amount of pills will ever, in and of itself, get a person to the root cause of the problem. for our bodies to enact a fight or flight response, something must be causing it. it is far too simplistic to simply write this all off as a chemical imbalance. or hope that pills alone will do the trick.
*this isn't like having diabetes, where tests can be done to know and then the proper dosages of medication are prescribed. doctors are continuously changing dosages with antidepressants and hoping that one right combo of pills will eventually stabilize the patient and do the trick.
it's an awful lot of playing around with medications that have come under scrutiny for their role in creating violent or suicidal people.
*combine all of this with big pharma companies and reps that court doctors; insurance companies that will only cover the medicating of a population and not the other needed aspect of therapy - and we have ourselves a real horribleawfulterrible mess.

and then there's a whole 'nother level: you've been taking the meds and you want to stop - the other therapies have reached the source, the root - and you want to wean off.

i'd like you to meet summer b.:

I had my first panic attack one night in my dorm room at college when I was a sophomore. I was laying in my bed, waiting for my body to fall asleep. Suddenly, I felt a very uncomfortable sensation -- the right half of my body felt WRONG. It felt limp, heavy, and it tingled with very tiny pins and needles. I bolted out of my bed and into the bathroom, where I stared at my face for about an hour in an attempt to convince myself that both sides were perfectly symmetrical. It FELT like one side was sagging, but the mirror told me otherwise. I couldn't understand what was happening. A tiny seizure? A stroke? I worried myself to sleep.

And then it kept happening -- night after night. So, I began taking the Xanax that my doctor prescribed -- but of course, I only took it as needed for the rest of my sophomore year. When the school year ended, I packed up my car and headed eastward along PA-118. About fifteen miles into the trip, I got a panic attack so severe that I had to pull into a stranger's driveway and knock on her door. Feigning low blood sugar, I explained my situation and asked for a candy bar or something of the sort. The woman was very nice and took me into her kitchen where she offered my ghost-white face a chocolate bar and a chicken sandwich. We chatted some small talk until I felt well enough to leave. The next time I passed her house, I dropped off a thank-you card and a replacement chocolate bar. She wasn't home, so I wedged them inside of her screen door.

Eventually, the time came to go back to school in the fall. I couldn't drive like a normal human being -- I had to stop every 20 minutes or so to let yet another panic attack pass. I usually had to get out of the car, walk around the car a few times, and open up the trunk and re-arrange a thing or two so that other drivers would simply think something had some loose in my trunk, and I had stopped to fix it. I didn't want them to know; I didn't want anyone to stop and ask me questions.

However, I began to have more severe problems during my junior year. I was in the fall semester of my junior year, and finals week was coming up. I felt like I had a tennis ball wedged in the middle of my chest, below my breastbone and above my stomach. It was tight, made me breathe erradically (because it felt so restricting), and caused me to panic on several occasions. I took Xanax all week -- a relatively low dosage; about .25 per day -- and I knew it was bad for me. I decided that something more had to be done; this wonderful drug that was previously able to stop my panic attacks was just barely able to keep me calm now.

I began taking Paxil when I was in my most fragile state. At the time I swallowed my first pill (Paxil CR, 12.5 mg), I was so panic-striken that I could barely move around my father's house during my Christmas break. I would sit still in the living room chair and notice how any tiny movement would incite a surge of adrenaline, in the most awful way, to each and every corner and crevice of my body. I felt, for no rational reason, like I was going to die soon. Swallowing that first Paxil and knowing that I would further be changing my already screwed-up brain chemistry made me even more anxious.

After about one week of faithfully swallowing a pill each day, I began to feel better. I didn't feel "medicated" at all; I simply felt better. I was able to enjoy the remainder of my Christmas break, and slowly began to forget what a panic attack felt like. And "forgetting" the panic-attack feeling was paramount my "success". Often times prior to Paxil, I would have a Tuesday panic attack simply because my body still remembered what the Monday panic attack felt like.

During the spring semester of my junior year, I noticed that my panic attacks had virtually ceased. I wanted to stop taking the medication eventually -- perhaps a few months from then -- but, being a poor college student, I couldn't afford my next bottle. My father had recently lost his 35-year job in the glass industry to some low-paid workers in overseas, and so we had both lost our premier health insurance as well. Previously, I would have to pay only $15 for any name-brand medication -- and now, on a meager student health plan with no prescription coverage, Paxil CR was costing me about $140 per month. I couldn't afford that on my meek $6/hour part-time job in an economically recessed town in central Pennsylvania.

So, I started taking the Paxil every other day without doing any research on the withdrawal effects. I just couldn't afford it any more, and I had no choice but to stop. I probably could have asked my father to pay for the Paxil, even just for a month, but I didn't want to do that to a man who had no job. About three days after this every-other-day regimen, I began to feel more tired than usual. The "Paxil quakes", as I called them, began -- those electric-zap sensations in my brain. I had no idea what they were, but I vaguely remembered feeling a similar sensation during childhood when I had a high fever. I checked my temperature, just to be safe, and it was fine.

The "Paxil quakes", or "zaps", are a peculiar phenomenon. If I sat completely still, stared directly in front of me, and moved my leg or arm, my entire field of vision would quake. All of my visual input rocked back and forth very quickly a few times and then stopped. And THAT was when I was sitting still -- walking around was another story in itself. The quakes continued almost constantly with every step I took, and I felt them over my entire body. Trying to complete routine tasks (like going to class, eating meals, and studying) became arduous. I tried to pay attention to professors but became more concerned about my teetery vision and zapping body. Lifting a fork to my mouth and bending my neck down to look at my plate of food would incite a round of quakes. And studying was nearly impossible; sitting in a chair and looking down at a book made the quakes repeat indefinitely. I had to hold my books straight out in front of me so I could read with a straight neck.

About two weeks into my every-other-day turned every-two-days regimen, I went to my usual Thursday night newspaper staff meeting. Before the meeting started, I laid down on the floor -- and slept through the entire meeting. When I woke up, I barely had enough energy to stumble back across campus to my dorm room.

I couldn't take it any more. I began to suspect it was from my every-other-day (turned every TWO days, due to decreasing numbers of pills) Paxil schedule when it did not correct itself. It was a Friday, and I had another two hours to get ready for my formal induction into Phi Kappa Phi -- a prestigious all-discipline academic honor society.

The induction was at 5:30. At 3:30, I was so tired that I could not stay awake and my quakes were awful. I had four Paxil pills left, and even though I had just taken one the day before (after two days of skipping), I swallowed one and then took an hour-long nap. I woke up refreshed, but still full of the quakes. Halfway through my Phi Kappa Phi induction ceremony, however, my quakes suddenly disappeared and my fatigue was gone. My brain, for the time being, had satisfied its hunger. I now definitively knew that my symptoms were caused by withdrawal from Paxil. I wrote about it in an online journal of mine:


fyi: it really sucks when you don't have a prescription plan, and you can no longer afford the goddamn paxil ($125 per month!) that keeps you nice & calm & regulated. i tried to wean myself off of it last week because i know i can't afford to continue taking it.

please, all: never do that.

instead of taking one every day, i started taking one every other day, and: i had terrible mood swings all week. all i wanted to do was sleep. i would shake randomly, and it felt like i was having tiny internal seizures. i felt like something was wrong. i felt like i was going to die. i felt like something terribly dangerous was happening to me. i felt worse than i ever had before i ever started taking those meds.

i cried for two straight hours on the phone with my dad, and he agreed to pay the $125 (which he cannot afford either, being jobless and whatnot) for one more month of paxil. i hate money. i really, really hate money.

A friend of mine read the journal entry and told her mother, who is a 40mg/day Paxil lifer. She called me one night and put her mother on, who talked to me for about 45 minutes about the benefits of Paxil and how i should NEVER try to go off of it again. She told me about the generic and told me horror stories about how your anxiety will rebound if you try to quit Paxil. Once you're on it, you're ON it, she insisted.

O-kay; not the news I wanted to hear, really. But, sadly, I listened to her for awhile and continued to take it faithfully until July. It was summer break, and I was working near home at an E-Bay drop-off store. I decided that now, after having discovered the generic and non-time-release version of Paxil (paroxetine), I would safely be able to decrease my dosage and go off the drug by cutting pills in half and slowly tapering off. I did exactly that -- I used a knife to split the pills in half for one weeks, in thirds for the second week, and then in quarters thereafter. By the time I was taking the "quarters", or 2.5 mg, I had developed strong withdrawal symptoms including zaps/quakes, general flu-like symptoms, and panic symptoms. I figured that because the panic symptoms had "returned", I clearly had some sort of a "chemical imbalance" and thus, my friend's mother was right -- I would need to be on this drug for the rest of my life. I did not want my summer break to be ruined by withdrawal symptoms, so I sadly went back up to my original dosage.

Time went on, and I began to notice that I was no longer interested in things that I had previously felt passionate about. My journal-writing had sputtered to a stop, my concert-going had declined, and my interest in friends & conversation had absolutely disappeared. After some though, I was able to pinpoint Paxil as the cause. I recalled my previous withdrawal attempt, noting that while on 2.5 mg, my passion for music had ripened again until I was forced to go back up to 10 mg. I couldn't take it any more -- I would go to the local diner with good friends and stare into space as they talked about things that had used to be fascinating to me. Where was my life going? I physically couldn't will myself into conversation; it was as if there was nothing to say. The drug had turned me into a complacent being; the drug had removed all sense of motivation from me, in every sense of the word.

College graduation came and went without any sense of completion, as did many "big" life events while on Paxil. After I moved to Delaware to attend graduate school, I realized that I could not go on in higher education with a chemically-altered brain, a lack of motivation, and the general cognitive problems that I had developed while on Paxil. I found the website paxilprogress.org, educated myself about the proper manner in which to withdraw, and set off on my tapering adventure.

Over a period of six months, I was able to reduce my dosage from 10 mg to 2.5 mg per day. After each 25% dosage cut, I needed to wait a full month to "stabilize", or wait for the withdrawal symptoms to pass. I painstakingly cut the small 10mg into 7.5 mg doses (by cutting the pill into quarters and taking three of the four quaters). Then, in an attempt to maintain my 25% tapering level, I spent hours conceiving of a viable way to seperate the 10 mg pills into a dose of 5.6 milligrams. After an exhaustive effort, I split each pill into two, and lined up crumb-sized shards in descending order -- it was the best approximation that I could make! From there, I reduced to 5 mg after it became too annoying to chip .6 mg pieces; most of my .6 pieces ended up as Paxil powder anyway, which is a significant amount of money down the tube (considering that each bottle is over $60 dollars, and my prescription plan will not cover it, AND I am a relatively poor graduate student!). From 5 mg, I decreased to 3.75 mg (constructed by using a nail file to shave a small amount off of a 5 mg pill), then to 2.5 mg (by chopping a 10 mg pill into quarters using a pill cutter). I am currently on 2.5 mg, and my next dosage cut is going to be an absolute riot -- imagine trying to split a grain of sand into two pieces without it pulverizing between your fingers!

Many people have suggested that I acquire the liquid form of Paxil -- however, I cannot afford it. At $200 a bottle from my local CVS pharmacy -- that's HALF of my meager, bi-weekly university paycheck -- it's simply too expensive. The cost blows my mind -- I find it unlikely that the actual chemical formula in liquid form is worth so much money. I suspect that GlaxoSmithKline knows that many patients use the liquid to wean themselves off of Paxil, and charges them accordingly because of they know it will result in the loss of a "faithful" customer.

So here I am, in December of 2006, in the final stages of my tapering process. As of two weeks from now, I will have been taking Paxil for two years. I have spent six months of that time dedicating myself to withdrawing from the drug -- that's 1/4th of my entire duration on Paxil. I suppose I am fortunate that I'm not one of the unlucky 10-year folks who need to spend an agonizing two and a half years (or more!) withdrawing from a drug that promised the world.

There's no way I can deny that Paxil delivered that it purported to -- it immediately stopped my panic attacks and reduced my anxiety level, thereby assisting me in getting my "life" back and giving me enough composure to seek out alternative treatments. However, there exist several problems in the current model of SSRI administration. First and foremost is the issue of informed consent. While it may be true that the drug information is listed on a brochure that many receive while picking up their first presciption, it seems unlikely that anyone with a panic or anxiety problem would be comfortable enough to even so much as glance at the brochure for fear of finding yet another odd side effect to "worry themselves sick" over. Often, many don't even have the opportunity to look at a patient leaflet -- when I was prescribed Paxil, my doctor gave me a one-month sample of the drug that was provided to him by a GSK sales representative. The only information on the 7-day CR packet dealt with how to remove the pills from their individually foil-sealed slots. Had I been presented with alternative treatment options or some type of warning about what withdrawal would be like, I would have been able to weigh my options in a more intelligent fashion.

The second problem is the issue of doctor-patient trust. We have trusted our general family physicians for years of beneficial treatments for strep throat, bronchitis, and other common ailments. So, for what reason would a patient even begin to question the recommendations of an authority figure who has proven to help them in the past?

Third, and most importantly, the whole design of the SSRI program is constructed with no end in mind. For some time, I was ready and accepting of the fact that I would probably need to take an SSRI for the rest of my life -- not because I needed it to control my panic and anxiety problems, but simply because withdrawal proved too difficult a task. Addiction, in the pharmaceutical industry's definition of the word, means that one engages in drug-seeking behavior; this definition makes it easy for them to deny that SSRI drugs are addictive. I consider myself addictive, and I certainly never did and never plan on burglarizing a pharmacy to get my "fix" of Paxil. Thus, I propose a new definition for drug addiction: the inability to stop taking a drug. No drug-seeking behavior is necessary. The bottom line is tihs: GlaxoSmithKline and other manufacturers of SSRI drugs need to step forth and take the humane step of either creating pills in lower doses or reducing the cost of liquid SSRI's in order to assist those who want to stop the drug. The pharmaceutical industry, it seems, has failed the average American. The system is currently arranged such that, literally, one can "check out any time they'd like, but...can never leave".

I have two more months until I am finally finished tapering, if all goes as planned. I feel as though I am one of the lucky ones, having experienced only the zaps, nausea, disequilizbrium, migraines, tension headaches, cognitive fog and loss of short-term memory, flu-like symptoms, fevers, trembling, panic, anxiety, and depression during my withdrawal.

And others, unfortunately, have it even worse.

-Summer B.

to get a feeling for what this experience has been like for her, she made the following short short short film that i just have to insist that you see.

and lastly, here is paxil progress.

summer - thank you for letting me share this here, for finding me and taking the time to write! i'm sending you all of my healy vibes and hopes that the next two months pass by without a hitch, and that you are successful in your journey and life. let me know how you're doing, wouldya?


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