Seroquel crimes hit the NY Times! Finally!

Here’s the link in the NY Times, about a drug trial for Seroquel that was certainly corrupt:

http://www.nytimes.com/2015/04/19/business/seroquel-xr-drug-trial-frayed-promise.html

This is yet another victory for supporters of the family of Dan Markingson.

Please take note also of the following post by Nancy Rubenstein Del Giudice, which has gone viral:

http://www.madinamerica.com/2012/06/after-seroquel/

There are so many comments it would take hours to read them all! I commented, too.

Readers of my blog have certainly heard my own Seroquel story enough times. I have learned so much more over the past few years about coverups with drug trials and about “off-label” uses of psych meds.

I can tell you the following:

I was put on Seroquel first by Dr. Michael Detke at McLean. I wasn’t fond of Detke, who was responsible for raising my antidepressant to insanely high levels, meanwhile throwing his hands in the air, completely clueless as to why my insomnia was worsening. I knew from the start that Detke was one of the worst psychiatrists I’d ever had, but I felt powerless to change this.

I’ll never forget how happy I was when, during an appointment, Detke told me he was dropping his patient load because during his final year of residency he was going into research. I can tell you I was having an awfully hard time staying awake during those times. I sat there with a blank face (as best as I could muster) then told him politely, “I’m sorry to see you go.” I walked out of there, and as soon as I was out of the building, I cheered. Out loud.

My next shrink turned out to be Dr. David Brendel. This was 1999, well before money and power got the best of him. He was known to be sweet and kind, and many remarked on his “boyish look.” He wasn’t a day over 30, most likely much younger, but looks can be deceiving. Joe was also relieved that Detke was gone.

I’ll never forget that first appointment with Brendel. I told him, by memory, my meds list. I used to amaze doctors because I could remember all the doses, and my entire history with a drug. I kept records myself besides. Doctors appreciated this because often, prior provider records were scanty, inaccurate, or out of date. (Nurses and therapists, too, appreciated it when they were stumped on how to spell the name of a drug. I always knew.)

Brendel wrote down the doses I told him. I’ll never forget the look on his face. Part horror, part incredulity, part shock. I saw him mouth something. Like whatever he was thinking he was certainly going to keep to himself. However, the look on his face, and his tone of voice was rather revealing: “That Detke is incompetent! What the fuck?”

I was off Effexor as quickly as we could do it. He told me that by all  means, the drug should be tapered more slowly, however, he felt it was imperative that I get some sleep! I ended up with no particular withdrawal effects. I was so happy when sleep returned! I didn’t need therapy for insomnia! I needed to get off the drug that was causing it!

Meanwhile, Brendel raised my Seroquel to further improve sleep. I think I was taking 100 then, no more than 200 I’d say. Any sleep-inducing effect from the raised Seroquel most likely was the placebo effect, since Seroquel is known to be far more sedating at 25 than at much higher doses, but I don’t know at what dose increase the sedation begins to level off or even lower.

I was so happy to be sleeping at last! I was doing well, but I broke my leg November 1st. I learned that I had rather severe osteoporosis that had increased the likelihood of fractures. I knew damn well that I had missed periods from Risperdal, but not wanting to admit that I’d willingly taken that drug, I told people the osteoporosis was from my eating disorder.

Do you see why I did this? I felt stupid. I felt ashamed. I didn’t want to admit that a drug had caused so much harm. Weren’t doctors always right? So I thought. Nor did I want to admit that although my doctors were certainly aware that I had missed many periods from 1992 (or 1993) through 1995, I blamed myself for not speaking up loudly enough and not fully understanding the consequences. Anything but admit a doctor could make an error! No, I saw them as gods.  I sort of couldn’t speak up anyway, since 1995, when the missed periods became alarming, was when they started the ECT.

I didn’t actually see Brendel that many times, since I was laid up with my broken leg for a couple of months. After that, I had three hospitalizations between mid-2000 and the end of the year. At the end of June of that year, Brendel moved on and I was transferred to another doctor.

The first was probably in June or July, 2000, at Mass General’s Blake 11. I was only there for five days and held in their “inner unit” (I don’t know the real word they used). I thought it was great because I had my own room with a terrific view. They allowed me to have my laptop and I kinda liked the privacy. I spent my entire time there writing and was never required to go to “group.” From what I recall, and in reflection, I think they realized that I didn’t need the hospital, that maybe someone had pressed the panic button unnecessarily. I don’t think they made any med changes.

The next hospitalization was at Norwood. That place wasn’t very good at all. It was run by the same company as St. E’s, Caritas, it was called. As soon as I got there I asked to be transferred to Mass General. The doctor said he’d look into a transfer, but whenever I asked, he said they still didn’t have a bed. I decided to stay put.

I ended up staying about eight weeks or so. They talked me into ECT. I continued it outpatient at McLean, done again by Dr. Michael Henry. The summer was drawing to a close. What happened was that I ended up so confused and disoriented from the shock that I stopped it. However, the next semester was starting and I felt that I was still so foggy-headed that I should take the semester off. Naturally, the shock wore off, since inevitably, any positive effect from it tends to be short-lived. By late fall I was hospitalized again at Newton-Wellesley.

I’m guessing that my Seroquel dose upon entering was 200 or so. For whatever reason, the doctor I had, a lady doctor whose name escapes me now, decided I was too thin. I think this woman was on a power trip because it was almost as if she were seeking out ED patients to do tortures on. She had been a former director of an ED clinic somewhere.

I had never been force-weighed before. It was so humiliating. They did it Monday, Wednesday, and Friday. It was done in a johnny.  They forced me onto a meal plan and eyeballed me while I ate. I wondered what they were trying to prove while doing this.

I usually pee after eating. I have diabetes insipidus, remember? So I pee frequently and in large quantities (in a toilet, FYI). So I thought nothing one day of going to the bathroom, as I always did, after eating.

When Joe came to visit that night, they wouldn’t let us visit off-unit as we usually did. The charge nurse, Phil, had a rather odd look on his face. Like I’d committed some terrible crime. Joe kept asking what the holdup was, why couldn’t I get the usual pass? I recall there was no explanation at the time but I was told that the nurse would speak to me about it later.

I’m trying to recall the nurse’s name, but I’m at a loss. Gloria? No. It was somewhat ethnic-sounding, Italian or Hispanic, but I wasn’t sure. It will come to me. She was petite and dark, rather pretty, with a strategically-placed dark mole on her face. Why do patients always notice moles on staff? I’ll never know.

She told me the following, “I noticed you went to the bathroom right after eating.” I agreed, I had. What was she getting at? I hadn’t gone in there to hang myself. What was the deal?

She accused me of vomiting up my meal. I told her this wasn’t true. She accused me of lying. After that, they kept my bathroom door locked. My poor roommate had no clue why. The doctor went along with it. Once, I had to go pee badly, and begged to be allowed to do so. That doctor instructed the staff, “Watch her like a hawk! She’s VERY sneaky!”

That as so humiliating, since I had never vomited, and was telling the truth. I hated what they were doing to me. It was now the year 2000, and I’d had ED now for 20 years. So they actually thought a brief course of forced ED “care” would cure me? Apparently so. I recall one day this doctor announced to me, “We’re raising your Seroquel.” I went along with it. Why should I doubt a doctor? They knew best, didn’t they? I took the pills when they gave them to me. My dose was raised to 600.

I used to see them all coming out of their meetings. They’d finish up their conversations right there in the hallway. I happen to recall this doctor rubbing her hands together and saying, “She’ll never know.” I had a feeling she was talking about me, because she was speaking to the other members of my “team.” I believe this included the medical student. I remember watching them, wondering what the heck this all  meant.

I knew, by staff’s reaction when I stepped on the scale not long after, that they were pleased that I was gaining weight. I didn’t say a word. I wanted to be polite. I wondered, though, why it was that my weight shot up ten pounds so quickly. I was immediately pronounced “cured” and let out of there.

I only took one class the next semester, Spring 2001, but did well. I always did well for whatever reason. I had an excellent instructor who pushed us hard.  I published Breakdown Lane, Traveled, on her encouragement. This was a compilation of my own writings. The book was released in 2002.  Meanwhile, I had a new psychiatrist and new therapist.

I wondered why I kept gaining weight. By the end of 2002, I’d gained 20 pounds, with no real explanation. I felt sluggish, too, and was having trouble writing. I never admitted it to anyone. I didn’t even tell Joe. I wondered if I was losing it. I was scared that maybe I was somehow weakening or losing my intellectual ability. My grades stayed good, so no one really knew how frustrated I was. By graduation, I weighed 130 or 140. My self esteem was in the pits. It was right after that that Joe died. It was hard to eat, but still, I kept gaining. By the beginning of grad school in January 2004, I was decidedly chubby, for want of a better word. It got harder and harder to exercise. I can’t say I flourished during my first two semesters. I got by. I was so frustrated, worrying that I’d never again be the writer I once was.

I was hospitalized in the middle of second term, that fall, October I believe. This was when my dosage was raised to 900 daily. it was supposed to be 800, but the doctor arbitrarily changed it to 900, stating that it would be “fewer pills to take.” My grad school allowed me to take an extension on the semester. I had the option of coming to the winter residency. I did so, 50 pounds heavier than I had been six months earlier. I was at my highest weight, around 200 pounds (I’m 5 foot 1 inch tall).

I felt like a complete failure. I was miserable. During that residency I thought more about my weight than I did about writing. Twice, I was bullied by other students over my weight. These were not writing students, but students from another program.

“What are you eating? You shouldn’t be eating that!”
“All fat people are pigs!”
“Yeah, pigs that can’t control themselves!”
“That combination will make you fat! Why don’t you listen?”
“She takes antipsychotic drugs! Anyone that stupid deserves to be fat!”

Yes, these were fully grown adults, several of them, bullying another fully grown adult.

I was so ashamed. I wanted to cry, but didn’t dare. It took me years before I admitted this to anyone. People told me that I should officially inform the school that this had occurred, but I have yet to do so after all these years.

I rarely left my apartment. I hid in shame, trying to cover myself. Once, I made the mistake of going to get my mail when others were hanging around the mailbox. One loud lady said, “What happened to Julie? She got fat!” She said this so loudly. I was so embarrassed that I bolted out of there.

Why was I fat? Why? I went online and found out. It was the Seroquel!

During Dr. Pearson’s maternity leave, my knee gave out from the strain. I couldn’t even stand up. I will never forget what I went through. I borrowed  a wheelchair. The sides of the wheelchair popped apart because I was too fat for it. I spent three months totally alone, a shut in, unable to walk at all.

When Pearson came back from maternity leave, looking all toned from multiple sessions at the gym, I hobbled in there using a walker. I’ll never forget her words, “Julie, I didn’t know you use a walker now.” What? Did she expect me to stay on the drug until I couldn’t even get out of bed?

I told Dr. Pearson that this was it. I HAD to get off Seroquel. She insisted I’d become “unstable.” But since I was at an unhealthy weight, didn’t it make sense? I was so unhappy.

She tapered me off, putting me on Thorazine instead. I’d say I didn’t have any problems getting off Seroquel. I was so overjoyed when I finally started to see the scale go down. M knee healed.  I was so happy. I noticed I could write again! I returned to grad school in the beginning of 2007.  I kept losing weight. I think of it as “revenge anorexia.” By graduation in mid=2009, I weighed 95 pounds.

That’s my Seroquel story, a rather long version. I was shocked that in 2013, Dr. Pearson insisted I’d been “so happy” on Seroquel. I was shocked to hear this. I realized that she had long ago stopped listening, and that our relationship had eroded. I didn’t want to see her anymore. My last session, after 12 years, was July 10, 2013. I felt free. Free of her, but not free from all the other ordeals I had to face.

Posted on April 18, 2015, in Uncategorized and tagged , , , , , . Bookmark the permalink. 10 Comments.

  1. downcastmysoul

    Seroquel at a very low dose made me lazy stupid sleepy and I was gaining weight. You were blessed to escape the side effects of withdrawal. I’ve read a Web page where a woman nearly died going off Seroquel. The only good thing about it was it guaranteed sleep and was sort on an antihistimine at that dose. 900 mg?! gee wow! At 75 mg I was sleeping 14 hours a day and had to cut back. I have been on 6 total anti-psychotics and each one was its own special nightmare. I rue the day my mother took me to my first psychiatrist. I was being bullied and ostracized at school and of course it was my fault! No one stood up for me and I got thrown to the sharks.

    Like

    • Thanks so much for your commentary. This seems to be the pattern. I saw so many people who had been put in the hospital due to spousal abuse. But it was not the batterers who were incarcerated. It was the ones who had been harmed. If anyone needed behavior mod, it was the perps, that is, the abusive spouses and abusive “staff.” Of course, there are a few that are rather kind. What happened was that many, to enable themselves to be compassionate at all, had to break rules to do so, risking losing their jobs. The rest for sure need some education!

      I have never counted the number of antipsychotics I have been on. Back around 1985, this doctor tried about 7 on me. Let’s see…Thorazine, Trilafon, Haldol, a green one that began with L (it’ll come back to me), Tyndal, and most likely a few more. I was given Mellaril as well, more on that in a minute!

      I know it sucks when you get bullied and instead of doing the right thing, people you thought were friends don’t stand up for you, and even chime in with the mob. I guess some people need a scapegoat. I’m so sorry that happened to you.

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      • downcastmysoul

        Typical to revictimze the weak. Should have known but I was too young.

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      • downcastmysoul

        Stelazine, Haldol, Trilifon, Risperdal (the worst), Geodon (almost as bad), and last but not least, Seroquel. I refused Zyprexa since I knew a woman who gained 100 lb on it. I also knew a woman who gained 100 lb on Depakote. They were not thin to begin with and ended up 300+.

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      • Hola! I was never on Geodon. Yeah, I was also on Stelazine. If I recall correctly, it’s blue, or was. I don’t remember it doing much except giving me side effects, or, rather, effects. I kept wondering why the doctor thought I needed all those, but who was I to question? Doctor knows best, right? Except I had this weird feeling the doc was an alcoholic and perhaps at times not quite sober in the office. I’ll never know. The office was large, and, oddly enough, he sat way over on one end, and I on the other. I often wondered if that was so the patients wouldn’t smell booze on him. It was only a wild hunch. pure speculation, but I knew that screwy stuff was happening. Then, I found out that the whole time I’d been seeing him as private patient he wasn’t even licensed. He got caught but it was all swept under the rug.

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      • downcastmysoul

        He probably was having sex with patients as well. Geodon was a treat…let me tell you! Made me want to self injure which I haven’t done since.

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      • I don’t know if he was or not. I knew one of his other private patients. We used to laugh over him, but neither of us had had that experience, unless there was stuff she wasn’t telling me. I self-injured twice in my life. The first time for only a few weeks because I had a really mean therapist who made antisemitic remarks the entire session. The second time, I was a McLean slave, after getting way too many shock treatments. I was a basket case for a good year and a half after that, and they tried to cover it all up. I ended up tossing the basket out and telling McLean to go screw.

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      • downcastmysoul

        Thank God! ECT sounds barbaric and so 19th century! If a therapist or psych used antisemitic remarks against me in treatment I would give them a piece of my mind. I once put an incompetent therapist in tears when I was 15. I knew a person who had ECT and she lost short term memory. Her sh*t started over a bad divorce from a local disk jockey.

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  2. I was on seroquel for about 4-5 months and gained 40 pounds. my lungs sometimes felt funny like they might not let me breath. not a good time for me either.

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    • This certainly sounds like the usual weight gain from these drugs. Ten pounds a month, especially if it continues for a long period, is unsafe and most people’s bodies suffer terribly. Weight gain that rapid can cause rise in estrogen. I hear that this puts a person at high risk for certain cancers. It causes strain on every organ of the body. Your skeletal system suffers, your joints wear out, you have more pain. Most people experiencing unnatural weight gain become sedentary and depressed, their self-esteem drops, and they stop caring for themselves. I can’t see that as “healthy.” That’s no an opinion, it’s fact.

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