Friday, May 22, 2015

My Really Bad No Good Horrible Life

I want to tell you what happened to me in early 2013. To start with, go to this former post, which came my way today via Facebook's throwback machine. See how creative it was, see the lightness of attitude? See me, as a person who was not brain damaged by a prescription medicine. A bipolar woman who did not have 48-hour rapid cycling.
So here's the cause and effect, laid out for you:

twenty zombie years of lithium damages my kidneys --> (that's an arrow, meaning leads to) 1,000 mg of steroids at kidney transplant -->
I can't sleep after that -->
Psychiatrist Darryl Brush prescribes Seroquel for sleep, then more -->
I notice facial tics. It's tardive dyskinesia -->
[Brush tells me to discontinue the Seroquel. Now I can't sleep again, but he says he can't prescribe anything more, I take too many medications for anti-rejection, blood pressure, fibrillation, thyroid. He doesn't tell me to be careful, that the TD might affect my balance, or prescribe gait and balance therapy. Later the neurologist will do that. But I've already fallen by then.]
The TD affects my balance and I fall. A bad fall off a stepstool. -->
I hit my head hard, and get a concussion.  -->
[and get a compression fracture in my back. That's not nothing, but it's another story.]
And that's the end of it for me.

I had entered the years of being weird.  After a while I noticed that I felt great one day and horrible the next. I marked predictable good days on my calendars and scheduled everything only on those days. But on the good days I was high, so I didn't get things done; instead I did crazy things like buy a Loudmouth Leo the animated speaker. I wrote lots of first drafts and forgot about them. I tried to find something about 48-hour cycling on the internet, but can't - I don't know that in studies this is called 48-hour rapid cycling. I didn't see another psychiatrist - would you? Thank God there's Leo to make me smile.

On the bad days I sometimes get dressed. I do not let myself dwell on ways to kill myself. There is no clear middle space, the kind of time in which normal people do ordinary things like balance the checkbook and get the oil changed.

At last my husband tells his doctor about this, and she says, Oh no, that won't do. She has to get this fixed. She writes down the names of three psychiatrists. I glance at the list, I have less than no confidence in psychiatrists now, but I've met one of them, so I make an appointment with him. He is not on Medicare and costs $10 a minute. And guess what - he knows about this condition. He prescribes epitol (brand name Tegretol), maybe the only psych drug I haven't had a bad reaction to. And guess what? This 48-hour rapid cycling is a known condition. It can happen to bipolar women who have a closed brain injury.

After a slow dazed week it worked. It worked so well that every day was the same. I started to have a normal life.  But the story didn't have a happy ending there. It suddenly stopped working. He raised the dose, another dazed week, now it's working again. He explained the mechanism, how this happens with Tegretol, and is confident it will stabilize within the year. Christ, I hope so.

I am writing this because I want to leave footprints for other bipolars. And most of all I want to spread this message --

Don't take Seroquel unless it's really necessary. 

Not even when it's called quetiapine, the generic. It can ruin your life. It's a powerful drug that should only be taken with care when severe episodes are a problem, not as a sleep aid. It can and does cause tardive dyskinesia. And TD can harm you as it did me. Permanently.


  1. Thank you for (en)lightening my load.

  2. Seroquel killed my mentally ill sister's new husband when he took some of her pills with wine on their honeymoon. They argued was the reason.

    1. What a sad thing to happen - but I believe it. Thanks for writing.

  3. I do a buddhist blog too and I just wanted to reach out and say I wish you all the best :)!