Jazz in Pieces Medication Madness

We have been very lucky here at Beyond Meds this week with two wonderful and totally different recovery stories. First was Steven Morgan’s the other day. Today is Jazz’s from Jazz in Pieces. Her blog is worth going back and reading the archives though she has not been writing recently, her insights remain there to be had.

In this story I want to point on the classic pattern that happens to so many of us and happened to Jazz too. We have some sort of crisis. We are medicated and told we need drugs for the rest of our lives. The drugs makes us worse, increase our instability and rather than recognizing this fact the doctors become all the more convinced of the diagnosis they’ve given us. This generally leads to more drugging.

This is exactly what happened to Jazz. It is only a strange twist of fate and a deep sense of intuition that saved Jazz from continuing down this corridor. It is my hope and Jazz’s too that some of you will recognize yourselves and wonder if the drugs might be making you worse too?

My Recovery Story
by Jazz

In retrospect, I find it interesting, tragic, and infuriating that a gp and a psychiatrist were able to take an otherwise healthy woman suffering from situation-induced anxiety with a history of two brief periods of depression probably caused by as-yet undiagnosed hypothyroidism, and parlay that into a bipolar diagnosis and a life-sentence of medication-or-else.

I’d always had ups and downs.  As a child, I’d been very anxious and very creative.  As a writer I’d experienced intense writing highs when I could write for hours at a time and get by with very little sleep, and I’d also experienced intense creative lows where my mind seemed to be mired in muck and I couldn’t eke out a single sentence for weeks on end.  It never occurred to me to medicalize of pathologize that behavior…it was just part of me and who I was and how I operated.

In the fall of 2003, I went to my general practitioner to get something to help me sleep.  I’d taken Ambien before, when I had my creative periods and just couldn’t get the wheels to stop turning long enough to fall asleep, and figured that was probably what I needed.  At the time, we had a very difficult, anxious family situation going on—my best friend, who was in the process of getting a divorce, had moved in with us, and had promptly met and began an affair with my then-married brother-in-law, putting me smack in the middle between her and his bewildered wife.  When I lay down to sleep, I couldn’t stop thinking about what was going on and how to fix it.  When I went to see my general practitioner for help, my regular doctor wasn’t there, and I had to see one of his partners.  I was running on maybe three hours of sleep a night for the past week, and felt like I had way too much energy for having had that little amount of sleep.

The doctor asked me if I’d ever been depressed.  I recalled two six-week periods, on in 1999 and one in 2001 when I had felt really down, unmotivated, and exhausted.  Each of these periods of “depression” resolved on their own without medication.  Sure, I’d felt horrible, but I was a young mother stuck at home with two small children and no car (let alone no time to write), which hadn’t exactly been part of my career-oriented game plan.  The doctor decided that I might be bipolar and asked me how I felt about seeing a psychiatrist.  I was a bit surprised, but figured she probably knew what she was talking about and said I would make an appointment.  She told me it would probably be a number of weeks or possibly months before I could get in to see anyone and that she would prescribe something for me to take to “bring me down” until I could get an appointment.

She gave me Zyprexa.

She also drew blood for a thyroid test, saying it was possible that my thyroid levels were high.

I managed to get an appointment with a psychiatrist six weeks out.  In the meantime, I thought it wouldn’t hurt to do some research on bipolar disorder.  What I learned did not make me very happy.  I read the DSM laundry list of symptoms of bipolar disorder, and realized that I had had all of those symptoms at one time or another.  I began going through my journals and noting times when I had been down and times when I had been unusually creative or energetic.  No pattern emerged, but there were an awful lot of ups and downs.

A week after my initial appointment with the gp, the thyroid results came back, and I learned that my thyroid levels were low and that I would need to start taking Synthroid.  This was no surprise, really, as my mother had been diagnosed with the same thing years ago.  But I have to wonder now just how long that had been going on, and whether it might have played a part in those two periods of “depression” I’d experienced a few years earlier.

The Zyprexa took a week or so to kick in, but it did seem to help.  By the time I went to see the psychiatrist, I was sleeping better and my anxiety levels had come down somewhat (former best friend had moved in with brother-in-law, so I wasn’t having to deal with that situation on a daily basis), though they were still a lot higher than normal.  When I finally went to see the psychiatrist, I believed I had educated myself about bipolar disorder, and was fully prepared for him to diagnose me and medicate me.  After a 45 minute interview, this man whom I had never met before and knew nothing about me other than my answers to his standardized questions, diagnosed me with bipolar II and told me that I would need to start medication immediately and that I would need to take it forever.

He did not once ask about anything that might be going on in my life.

To his credit, he wasn’t too thrilled that the gp had prescribed Zyprexa.  “We don’t like Zyprexa,” he told me, “but I’m sure she was just trying to help.”  He prescribed Depakote for the mood swings and trazodone (an older antidepressant with the helpful side effect of making one extremely sleepy) to help me sleep.

In my research, I had read that many writers and artists who had been diagnosed with bipolar disorder refused to take medication because it stopped them from being able to create.  I told him I was a writer, and I was concerned about my ability to write while on medications.  He gave me a condescending look and said, “Depakote won’t kill your creativity.”  I took my prescriptions and dutifully made an appointment to see him again in four weeks.

At my next appointment, I told him I was still feeling a lot of anxiety, although I was sleeping better.  He prescribed Lexapro, an antidepressant, because he said it would help with the anxiety and that he was concerned that untreated anxiety might lead to depression.

I swallowed all the propaganda, hook, line, and sinker.  I became a student of my moods.  When I felt good, I was “hypomanic” and needed to call him and ask him to increase my Depakote.  When I felt lousy, I was obviously becoming “depressed” and needed to have more Lexapro.  There was no room for normal, human emotions in my illness, for any emotion I felt might be the herald of disaster.  My doctor told me on every appointment that the medications were “saving my life” and that if I ever stopped them I would ruin my life.

My Depakote dose went up and up and so did my weight.  Within six months I had put on sixty pounds, and within a year I was suffering from terrible pain in my feet from plantar fasciitis, which the foot doctor whose advice I sought told me had been brought on by gaining so much weight so quickly.  He prescribed orthotics and stretching exercises, but also told me that it was likely that I would not find a whole lot of relief until I lost some of the weight.  I tried the orthotics, I tried the stretching, I tried to lose weight, and finally I submitted to painful cortisone shots, which brought some relief, but alas, only for a few weeks, and then the pain would return.

Pain became my constant companion.  It was so bad that many evenings I was in tears.  I couldn’t be on my feet for more than ten minutes without excruciating pain.  Housework had to be done in fits and starts.  Grocery shopping became a nightmare, and I had to strategically plan shopping trips that would keep me in just one area of the store for the minimum amount of time.  I missed out on taking the children places like the zoo, the science museum, and the amusement park because I just couldn’t be on my feet for that long.

Soon after starting the Lexapro, my moods began to cycle rapidly.  During my first year on Lexapro, I experienced three depressive episodes and two hypomanic episodes.  My doctor took this as validation that being on medications was the right course, because obviously my illness was worsening, and it was a good thing we’d caught it before things really went off the rails.

It never occurred to me that the medications might be the cause of the mood swings.

As the doses of medication increased, my mind started to shut down.  Where once I had possessed a rapier wit, now it was all I could do to get the right word out without stuttering.  My hands shook and I couldn’t do the fine needlework I’d always taken pride in.  And worst of all, my verbal abilities disappeared.  I couldn’t write.  I couldn’t remember things.  I couldn’t even find the right words half the time.  I also lost all interest in sex, and I found myself unable to care about anything.  Life just drifted by, and nothing ever seemed to touch me.  In fact, the only time I really felt anything was when my moods cycled up or down.

But I had to keep taking the medications, right?  Because if I stopped, I’d “ruin my life”, and I was damned lucky that we had caught this problem before things got really out of hand.  A doctor had told me so, and he was Educated and Informed, so he had to know what he was talking about, right?  After all, he was a professional psychiatrist—an expert on mood disorders–and  a professor at a respected university, to boot.  I could trust him…right?  And after all, my mood swings had become much more frequent and much more severe in recent months.  All proof to me that I was doing the right thing.

As time went on I became more and more drugged and disillusioned.  I couldn’t write anymore so my dreams of writing and publishing novels for a living went down the toilet.  By the fall of 2004, over-medicated and overweight, the future no longer seemed bright and full of colour and energy.  It looked cold and numb, the colour of ash.  And I had pretty much resigned myself to the idea that this is my life now.  I have bipolar disorder and I’m lucky to have a life at all.

I tried complaining to my psychiatrist about some of this, but although he listened, I do not think he ever really heard me.  And he had an answer for everything:

“I’m concerned about the amount of weight I’m putting on,” I told him at one appointment.  “When do the risks of carrying around this extra weight outweigh the benefits of taking the medications?”

“You are taking the best medications we have available,” he told me, and his manner made me feel like an ungrateful child asking for a second helping of dessert.

“What about going off the medications for a while and seeing what happens?” I persisted, aware that weight loss wasn’t going to happen on Depakote—I’d already been trying, and was having no luck.

He gave me a severe look and said, “You are an intelligent woman.  Your episodes have been more frequent during the last year, and you know that if you stop taking your medications, you will ruin your life.”

Eventually, in the winter of 2005, after months of me pestering him at every visit, he finally agreed to let me try Lamictal.  I was very excited at the prospect, because I had read that Lamictal was not as sedating as Depakote—I might actually be able to think and write while on this drug—and it was weight neutral, so I might be able to lose weight as well.  I was instructed to  cut my Depakote down over a few weeks from 2500 mg to 1000 mg, and then start the Lamictal, then taper the rest of the Depakote after I was up to 100 mg of Lamictal a day.  Within three months, if all went well, I would be off the Depakote entirely.

Unfortunately for me, I developed the dreaded Rash, and was told to stop the Lamictal immediately.  Cold turkey.  I was on 100 mg at the time, and stopped as instructed.  A week later I came down with the worst “flu” I’d ever had and was in bed for six weeks with the worst fatigue I had ever felt.  I was so exhausted I could barely get off the couch to stagger to the bathroom.  I didn’t have the energy to make dinner or do laundry, or anything I normally did.  My husband had to take over pretty much all the household chores as all I was capable of doing was lying on the couch sleeping 18-20 hours a day.  At that time I’d never heard of Lamictal withdrawal, and my doctor had not mentioned anything about the risks or symptoms associated with stopping it so abruptly, and so I assumed I’d had a rotten bout of flu.  I know better now.

So the Lamictal experiment had failed, but I was down to only 1000 mg of Depakote, and was beginning to be able to think a bit more clearly.  My memory was better and I didn’t feel like I was groping for the right words all the time.  The shakes had mostly gone away, although I still couldn’t do really fine needlework.  And I was starting to care about things again.  I felt so much better on the lower dose that I told my doctor I wanted to stay there for a while.  He agreed.

The turning point came that spring when my husband suffered a severe heart attack.  In a cold, numb daze, I dealt with it.  I called the ambulance, I called the neighbor to take care of the kids, I drove (with my terrible sense of direction and fear of getting lost) into the big city to a hospital I’d never been to before, and I held it together.  I didn’t cry.  I didn’t feel much of anything, actually.

Fortunately, my husband survived.  He had a catheterization procedure done, which he came through with flying colours, and was out of the hospital within three days.  But I still couldn’t feel anything.  I couldn’t even cry, and I knew that wasn’t normal.

At that point, I decided that I’d had enough of being drugged numb.  I was completely unable to respond to normal human emotion, and I began to fear that I was not able to  respond to my children appropriately.  When I told my doctor that I was concerned about the fact that this traumatic, life-changing event had occurred and that I had been unable to react to it, his response was, “Well, the medication protected you.”

Yeah.  Thanks ever so, doc.

That was my last visit to him.  Without having a clue what I was doing, I tapered my medications down over the next month, and by the summer I was off of Depakote and Lexapro.  I was still taking trazodone to help me sleep, because I still believed I had bipolar disorder, and that I needed to do everything in my power to stay stable.  I embarked upon a program of healthy living—excellent nutrition, supplements, regular bedtimes with trazodone to make sure I got my sleep.  I even gave up caffeine.  I’d been a regular Diet Coke drinker for years, but I knew that caffeine could mess up my sleep, and I’d had it hammered into my brain for the last year and a half that proper sleep could be the difference between stability and a manic episode.  When I was on the medications, caffeine was often the only thing that allowed me to see through the drug fog long enough to get the kids off to school in the mornings, but with the dulling effects of medication gone, I found that I didn’t need caffeine any more.  For exercise, I started a simple yoga routine because that was about the only thing I could think of that didn’t involve impact that would hurt my feet.  I found that I enjoyed yoga a lot, and this naturally led me to an interest in meditation, which I added on to the end of my yoga program.

The first week completely off meds was rough.  My emotions were all over the map.  But I refused to pathologize them.  I told myself that I’d had everything deadened for the last year and a half, and that I had to become accustomed to feeling things again.  I told myself that I had a year and a half of chemically suppressed emotion that I needed to deal with, so I let myself cry, I let myself feel whatever it was I needed to feel, and embraced the fact that I could feel at all.  After that week, things eased up and I began to feel more like my old self.

I began to lose weight slowly, and the yoga had an unexpected benefit—even before I had lost much weight, the pain in my feet began to ease up (although it did not disappear entirely until I had lost thirty of the sixty pounds I’d put on).  Soon I was able to go back to my usual activities, and even take short walks.

I was still taking trazodone, and I still believed that I had become that most dangerous of creatures, an Unmedicated Bipolar.  Months went by and I was still unable to write.  I was afraid that something, either the bipolar disorder or the medications, had damaged my mind, destroyed my creativity.  I tried everything to bring it back, but nothing seemed to work.  The ability to write seemed to be intact, but it didn’t move me that way it once had, there was none of the sparkle I recalled, and I lacked the drive to do the one thing that I had once believed to be my life’s purpose.

A couple of years passed.  I was still taking trazodone, and I lived in constant fear that I was going to have an “episode” and not be able to control myself.  Eventually, the fear got to me and I decided that, knowing how long it takes to see a psychiatrist, it might not be a bad idea to have one on board, “just in case.”  I found one not too far from my house, and went to see him.  Even though I had been stable off medications for nearly three years, he wanted to put me back on medication.  I told him I would consider it, but I also told him point blank that I refused to take anything that would make me gain weight or make me stupid.  He named three medications—Abilify, Lamictal, and Trileptal.  I told him about my past Lamictal problems (the rash, at least, not the withdrawal symptoms, as I still believed it had just been a nasty bout of flu), and he suggested that if we increased the dose much more slowly and without Depakote present that things might go better.  He told me to research the medications he had suggested and we would discuss them next time.

However.  In my research I came across Philip Dawdy’s Furious Seasons, and Gianna’s blog here, and after doing much reading and thinking, I decided that this new psychiatrist had a hell of a lot of nerve suggesting that I ought to be on medication when I’d been completely stable on just trazodone for nearly three years.  And in fact, I decided that I didn’t want to be on trazodone anymore either, because from what I’d been reading, it just might be responsible for my lack of enthusiasm for writing.

My trazodone taper was a lot smarter than the others.  It took me about four months to go from 200 mg a day to nothing.  I had headaches for a few days every time I lowered the dose, and I had a couple of weeks somewhere in the middle where I’d have scary flashes of suicidal thoughts.  But I persisted, because during this time, I was reading recovery stories and looking into alternative mental health solutions, and realizing that drugs might well have been part of the problem rather than the solution.

In my reading, I also came across some information about the artificial sweetener Aspartame being implicated in mood disorders. When I thought back over my own history, I realized that my mood swings had started in college, soon after I’d turned to diet soda as a study aid.  I’d never liked coffee or tea, and didn’t want the calories in regular soda, so Diet Coke became my drug of choice.  More importantly, those mood swings had stopped when I’d stopped drinking Diet Coke.

As I write this, I’ve been off mood stabilizers for over three and a half years, and off of trazodone for about six months.  My enthusiasm for writing seems to be returning, and I feel better and more stable than I have in years.  The mood swings that followed me through college and beyond are gone, and I’ve felt neither depression nor hypomania since stopping mood stabilizers and aspartame.  I am incredibly grateful to Gianna and others who have shared their recovery stories here, because if I hadn’t found this site, I might well have listened to that second psychiatrist last year, and allowed him to frighten me back onto the medication merry-go-round.

I no longer live in fear that I am going to lose control or that the Bipolar Monster is going to rear its ugly head and ruin my life.  I no longer believe that I have untreated bipolar disorder.  I accept the fact that I had symptoms of bipolar disorder, but as more and more time passes with no recurrence of these symptoms, I become more and more convinced that these symptoms were caused by a toxic reaction to Aspartame, and have nothing to do with bipolar disorder.

For a while, I was pretty angry.  Angry that drugs like Aspartame could be put into the food supply because they were supposed to be “safe”.  Angry that I could be diagnosed with a major mental illness so quickly and easily by someone who had never met me.  Angry that the diagnostic criteria for this life sentence left no room for life-circumstances and that the doctors I saw never asked about anything beyond those narrow criteria.  Angry that my doctors saw medications as the only treatment options available and refused to consider alternatives.  And mostly angry at myself, that I bought into the whole thing in the first place, that I listened to doctors without questioning.  That I bought into mainstream media perceptions.  That I was a sheep.  Baa…

But you can’t stay angry forever, and my yoga practice has helped me to accept what happened and to make peace with it.  I had to go there to get here, and I like where I am now.  That which does not kill us can make us stronger…and perhaps wiser, if we are open to learning from it.

Today, I’ve lost about forty-five of the sixty pounds Depakote packed onto me, and my feet no longer hurt—I can now do some of the higher impact activities I used to enjoy.  I’m starting to write again, and rather than feeling angry, I’m starting to feel like I had a pretty lucky escape.

Hopefully reading my story might help someone else start to think and to question…and maybe give them the inspiration to stage their own lucky escape.

For Jazz’s happy story of complete recovery see here. She’s symptom free and several years out now. 

For more recovery stories see here and here.