Some Early Thoughts on Anatomy of an Epidemic

Robert Whitaker's latest book "Anatomy of an Epidemic" came out last month. I had been listening to it on tape (Audible) since I have problems reading print at the moment. Yesterday, the blessed package came from Amazon. His new book, and the reissue of "Mad in America". 

I made myself a sandwich, poured a glass of ice tea from the fridge, and sat down, to read it again. And from the minute I started, I realized one thing. The publisher made a huge mistake. The book should come with Kleenex. 

Like the spoken edition- which is  the same book - it's the type of non fiction book that will make you cry. Weep, copiously. And after your tear ducts are dry, I felt like I was watching one of my all time favorite movies- "Network", living the "Mad as hell" scene. I would have indeed gone to the window and shouted, but my downstairs neighbor is 88 and deaf, and ... what good is shouting "I'm mad as hell" if no one can hear you? 

I'm too numb right now, and it's 5 am in the morning to sit down and write a review worthy of the New York Times Book Review. Let's just say this. 

In the book he interviews many, many people, especially in the last page. I am fortunate thanks to Facebook, to have emailed  some of them and they inspire me.  

And I think about the ones in the book as true cases, especially the children, who were also hurt and maimed. Including the one I love the most- ME. In the fact that we were not killed outright but, as a friend said in a phone call, - "our brains were raped".

I don't know who is pro-Big Pharma or against it, and frankly it isn't salient here. What I want everyone who sees this is to arm themselves with knowledge, every time they get a script from the doctor. The doctor can be your GP, Gynecologist, Dentist, or Shrink. You get a script, ask what this is. What are the side effects. Please ask. Go home and look up the drug on the Internet. Knowledge is important. Don't be a sheeple. This can save your life. 

 I was brought up by a father who worked for Big Pharma, and believed in Whitaker's "Magic Bullets". You take the script from the doctor, and take it. No questions asked. Doctors are just a fraction below G-d. If you don't question , you really are taking Blue and Red Pills. Within ten miles from where I grew up, and about 3 miles from where I am now, is a town called "Milltown". My mother always beamed with pride as she reminded her girls in the back seat of the car this town we were driving through was named after a wonderful drug from the 50s. (Whitaker describes the town and the drug in detail in the book as well). 

I had only one doctor who, upon giving me a script for Lamictal back in 2001, told me about the rash. If I get any kind of rash, call him immediately. If I cannot reach him, go to the emergency room. No other doctor, from childhood on, ever did this. 

The first drug I ever had a problem with was Prozac, which I started in 87, about 12 months after I was diagnosed. Prozac was was the wonder drug of that age- on the cover of Newsweek and The New York Magazine at the same time.  The side effects were awful.  I couldn't sleep, I had nightmares. Then the fevers, ringing in my ears, and the sensation my skin was moulting and I couldn't stop scratching. My whole personality changed, I went from being a mild Casper Milquetoast type person to someone looking for a girl fight. Then I was told to quit the drug cold turkey, and fortunately, for me, I was put on both Zoloft, and later, Paxil, and fortunately, no side effects. Not like the Prozac. 

It wasn't until I was reading this book I saw i was not alone with side effects from Prozac that I experienced. And when I told the doctor how I was feeling on it, he told me to keep staying on it, and ride it out. Two psychiatrists later, I was finally moved off Prozac to something else. 

And now I sit, 2 years ago almost dying from Haldol, where every muscle in my body fell asleep and I had to re-learn how to do everything. Walk, talk,eat, even go to the bathroom. Yet in the book, over and over again- Haldol- muscle fatigue. I was as bad a case from this as possible, the worst would have been dying. I survived. I wouldn't wish this on my worst enemy. To this day I am haunted by something a nurse told me when my muscles started to wake, that my screams from the pain were exactly like the ones from burn victims. 

Three years ago, one P-doc put me on Remeron. After about two weeks on that I got so suicidal I checked myself into the hospital, because I reckoned, I would rather be shot up with Thorazine and be alive and get off this drug then stay home and I know I would suicide. While I was detoxing off Remeron, the same pdoc wanted to put me into Trenton Psychiatric Hospital due to the side effects I was experiencing with the meds. I fired him, and left the hospital against doctors orders. Alive. If I was put in Trenton Psych, I fear I would still be there, like a scene from "Cuckoo's nest" 

And being on lithium, since 87- with small respites on Depakote and Lamictal- well, I just wrote about loosing my hair. I am constantly sick to my stomach, and can only eat bland food. Anything spicy- no. Nexium has become a magic pill for me to be able to eat anything.  But the worst- is knowing that sometime between now and September I have to go for another bone marrow biopsy, and it's just a matter of time before I have leukemia unless by some miracle my white blood count should stop duplicating and go DOWN. Which it hasn't since 2003, it's been going up in some kind of Mathusian equation I haven't been able to crack.

I said this book belongs on every one's bookshelf. It does.This book deserves to be on the Times Top Ten list. But no matter your stance- pro pharma, anti pharma know this.  But please, question the doctor for everything. Don't be blind trust, there are good ones and bad ones out there- but you are the most important person in the world, and you must know every option out there, and question. Likewise, there are good drugs out there- Penicillin, for example has saved lives. But question. Question everything. Question authority like you haven't done since you are 18-19.  The life you save will be your own, your husbands, child's or parents. You owe them and yourself the chance to live long and prosper. 

ETA: After I posted this, Pharma Gossip put this book review on it's site as the book of the month. It's an article also worth reading. 

A Tireless Campaigner And A Very Good Book

The British may be known for "inventing" the first novel, and like the first novel, this reads smoothly, part epistolary, part fiction. But it's not fiction. This is a true story, which I sorely wish was fiction.

The book I am referring to, is The Evidence Is Clear", written by Bob Fiddaman. Right now it's available as an ebook, for download here, but will be coming out in print later this year. Seroxat, (or Paxil, or Paroxetine) is manufactured worldwide by GlaxoSmithKline and is a SSRI drug used mostly for psychiatric purposes.

It was prescribed to Bob for depression, as he tells his tale of three years on this drug:

I was prescribed Seroxat by my GP due to 'depression' - it was work-related and kind of spiralled when my former employers put me on to a 'Long Term Absence Register' because I had developed an illness, Osteoarthritis of the hips, [1] that didn't allow me to perform the job I was employed for. The 'Long Term Absence Register' was basically set up to leave employees without pay and without being able to claim for benefits. It had a strain on family life and Seroxat was deemed to 'fix' that problem.

Seroxat took away the pain of not being able to provide for my family, in fact I didn't really care much about anything. I became devoid of any human emotion other than sadness. It was an unexplainable sadness though, you know, bouts of crying when I really didn't know what I was crying about. (p.10)

Bob's life spirals out of control when he starts missing a dose on holiday, and then describes side effects he encountered from taking the drug, unable to tolerate loud noises, night thrashes/terrors, night sweats, blurred vision, apathy and confusion. Then a suicide attempt. His marriage crumbles, and he has "brain zaps". After 18 months of tapering, he goes "cold turkey" off the drug and it takes about three months before he feels "normal" again after a period of hell withdrawing.

What then starts is a labyrinthian journey, as Bob goes through the bureaucracy of red tape and politics that exist in the UK, as he writes to doctors, politicians, the BBC, and employees of GSK trying to learn more about Seroxat and it's purpose. Again, it almost seems like fiction, but it's true. During this process, Bob launched his website. "Seroxat Sufferers, Stand Up And Be Counted"and has developed a loyal readership of people who have been hurt and maimed on Seroxat, as well as other psychiatric drugs.

What makes this book believable is even though someone like me who had no problems on Paxil on it, or off it, I still could relate to because of the problems I had with Cymbalta for example, or Haldol. The symptoms he went through were so similar to what I experienced on Cymbalta and Haldol and the dead ends I encountered trying to learn more about these drugs. But unlike me, Fiddy kept on truckin, as they use to say- not afraid of the red tape he was encountering and fearlessly became an advocate by default as he puts up piece after piece on his website.

150 years ago Charles Dickens told the world about workhouses and poverty in London and laws were enacted to changed it. 110 years ago Jack London was sickened by the poverty he saw first hand in London's Whitechapel district. 100 years ago Upton Sinclair wrote "The Jungle' to describe the horrors going on in the US meat packing industry, and 80 years later, this movement went into the fast food restaurants exposing them. Now in this new century, maybe it's time to take the lid of Big Pharma, to tell them, while they do do good manufacturing drugs like penicillin, and other drugs to bring down fever and colds, we really, really have to look how psychiatric drugs are made and marketed, and if they really do any good, compared to, say a placebo.

Bob's book is a tough read on a serious subject. But rewarding. Its only drawback is it's an ebook, you cannot hold it, or download it to a Kindle. But like any book worth reading, it makes you think. It makes you mad as hell, too. And it makes you want to go out and do something, even if it's writing a letter to your local Congressman, on MP. And for that, it really does belong on the bookshelf, once the paperback comes out. But, if you were like me and cannot wait, get the ebook in the meantime.

Here is a video Bob did to preview the book.

I have no mouth, and I must scream.

I feel like the picture of Hello Kitty, in my last post. Have you ever noticed that Miss Kitty has no mouth?

I found this gem tucked in some articles about the APA conference currently being held in San Francisco. It's a good thing I wasn't there covering it, like some people I know- because if I saw it, I might want to throw myself off the Golden Gate in frustration. And I am so afraid of heights I doubt I could ever go near it.


Thisis what the article said,

Interview with: Jeff Guo, Ph.D., University of Cincinnati
WASHINGTON, May 9 -- One-fifth of patients with schizophrenia receive prescriptions for drugs that can cause dangerous interactions when taken in combination, a researcher said here.

Significant adverse effects were rare, but between 18% and 22% of Ohio Medicaid patients under treatment for schizophrenia were given prescriptions for an antipsychotic and one or more other drugs with well-known interaction potential by the same physician or pharmacy, reported Jeff Guo, Ph.D., of the University of Cincinnati.

What's more, 11% to 12% of patients received prescriptions for such dangerous drug combinations from the same provider on the same day, Dr. Guo told attendees at the American Psychiatric Association meeting. Action Points
Explain to interested patients that the study found about 20% of schizophrenic patients got prescriptions for drugs that can interact with other drugs they're taking.

Note that this study was published as an abstract and presented as a poster at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.

"That shouldn't happen," he said, because the interactions analyzed in the study have been described extensively in the medical literature.

The article goes on, explaining what drugs could cause serious interactions.

Aripiprazole (Abilify) with ketoconazole (Nizoral)
Clozapine (Clozaril) with ritonavir (Norvir)
Clozapine with fluvoxamine (Luvox)
Haloperidol (Haldol) with lithium
Risperidone (Risperdol) with fluoxetine (Prozac)


IT SAYS HALDOL AND LITHIUM CAN BE POTENTIALLY RISKY.


Big speak for it can kill you.


It almost killed me. The doc should have known. If I can find it on the internet why cannot she?


I ALMOST DIED FROM THIS. YOU BET I AM PISSED.

My doctor, who I believed in, should have known better. One month in a rehab hospital, learning to walk again, loosing control of every muscle in my body but my heart, not being able to go to the bathroom without a catheter= not being able to make a bowel movement for over 2 weeks..... Not being able to sleep, lie down or move.....

Why couldn't the doc take 5 minutes to check the interaction? My GP and Gynologocist and Dentist do. I know there are good shrinks out there. I just never met one in my lifetime.

Midnight Musings- Flu and Eli Lilly

I went to sleep about 7 PM feeling miserable, woke up at 10:30, and shaking. Yep, temperature is back up to 102 and my winter flu is back with a vengeance.

I went on the couch, turned on the TV and the first thing I saw was this..."Real World Brooklyn". So.... My mom's generation the big question was- Does A Tree Grow In Brooklyn? Is mine going to be- Did Real World really have to go to Brooklyn? I don't know, but maybe this is a sign the Dodgers will come back to Brooklyn? I don't know. I am still mourning the loss of Coney Island. I am like Ferlingetti- I have a Coney Island of the Mind.

Meanwhile I would like to point out that Eli Lilly is on the verge of settling Zyprexa claims for a whopping 1.4 billion. This is being reported by Seattle journalist Philip Dawdy on his website Furious Seasons. For those not familiar with Dawdy, his site played a significant award role in the Zyprexa scandal, and documents on this can be found here.

I believe Philip and I both belong to the same Journalist society- I am writing them tomorrow to tell them about his tireless reporting on this issue.

Now that Zyprexa might have closure, I want to go after Haldol..... this drug is personal vendetta for me.

That's all I got for now. I want to go back to sleep and get rid of this cold. And wish I had my mom's chicken soup.

Haldol Nightmare

I wrote this over the weekend for Gianna Kali, in her new forum for those having a problem with their meds.

It's still a work in progress, but this is my nightmare on Haldol. I have not altered anything or changed anything, and I hope it might give someone courage who are going through the same thing with this nightmare drug for me.

it's hard for me to write about since my Haldol experience happened in April 08 and took to July to recover. It's still raw.

Basically what transpired was one night I woke up to use the toilet, fell down on the floor and couldn't get up. Spent the night on the floor trying to get up on my feet, to get to the bathroom and couldn't move my arms or my legs. My parents found me a few hours later, By this time I I couldn't even move my muscles to urinate, but I could feel my bladder was full and it hurt like heck. I wanted to cry and couldn't shut my eyes. I wanted to talk and all I could do is grunt because I couldn't move my mouth.

My parents took me to the emergency room where i spent a week in the hospital - being on IV's for nourishment, and a catheter for the other thing. Had CAT scans, MRI"s x-rays, you name it they took it. I still couldn't move. My folks had both a Rabbi and Priest come in to give me last rites after I flatlined. After a week, they sent me to the Rehab facility where I had to learn to walk again and try to get control of every muscle in my body. Was there for 3 weeks. I couldn't even lie down, they brought me in on a wheel chair initially and it took 4 days for my muscles to relax to let me lie down. I had to sleep sitting up. It was a nightmare, I was in such pain and the people who had POA wouldn't let me take something like Perkoset for the pain or Oxy, because they felt all I needed was Tylenol, despite the fact the first hospital was adding that to my IV. I understand my screams could be heard all the way down the hall.

I found out back in November from a very respected Psychiatrist here- that when he did his internship at the same hospital where "Girl Interrupted" was done, he saw several cases like this from Haldol- you loose control of every muscle in your body.

I am fine now.But this is the drug from hell, it should have been pushed off the market years ago when the 1st case like this happened. No excuse.

I wouldn't wish this on my worst enemy.
=Susan

For more on Gianna's Beyond Meds Social Network, please go here.

What Happened To Me-Going Through Hell

Hi all. It's been a while, yes, I know. Here is the Cliff Notes version of what happened to me.

I went in the hospital on Easter Sunday with Pneumonia,and 105 degree temperature. spent 10 days there. Went home to my parents house because I was too weak to climb the stairs to get into my apartment.


About a week and a half after I had been at their home, I woke up one night in the middle of the night like I usually do to empty my bladder. Only I couldn't rise from the bed, it felt like all my muscles had turned to jelly. I finally managed to get out of bed and promptly fell down. I was on the floor for about 3 hours. When my father woke up about 6 am he heard me shout and he and my mom tried to get me up. They had to practically carry me back to the bed. Of course I wet the carpet.

My mother called the p-doc and she said to go straight to the emergency room. I was examined, x rayed and sent up stairs to the hospital. I stayed there for four days, and got almost every test available, CAT scans (no, not a feline thing), MRI's, X rays. So much blood work I felt like my hands were sponges. I couldn't move the muscles in my mouth to eat, so I was hooked up to an IV. I couldn't move the muscles around my bladder, so I had a catherter. I spent four days in the hospital, and then they sent me to a rehabilitation hospital. I was moved in a wheelchair, in a special ambulance, because I could not walk, and could not move. I still had the catheter attached to me.

I spent 3 weeks in the Rehabilitation hospital. I had to learn how to walk again, how to move my arms again. I couldn't do anything for myself when I got there, I couldn't dress myself, put my hair up in a scunchie, hold a toothbrush, write my name (when I was admitted), and the worst (oh the ignomy) couldn't wash my self or go to the bathroom by myself. In fact, I went 10 days without making a bowel movement because the muscles down there refused to move. I cannot begin to describe that pain. I also threw out my back at the same time, as well.

I cannot tell you how much it makes you appreciate the small stuff. Taking your first steps in a walker. Being able to walk without falling down. Being able to stetch your arms so you can finally dress yourself. The delight in finding out you lost 43 lbs and none of your clothes fit anymore. The first time I was able to stand for a minute and take a quick shower, even with a walker was a big deal. And going to the bathroom by myself, oh that was heaven. Of course, need I forget, use my eyes (I was unable to see for a couple of weeks it was like I was legally blind), and speak. I could just reply in monosylabic words.

I left the hospital and spent 3 weeks at my mother's house where I was getting physical therapy every day and occupational therapy where I learned how to write again, (Use a pen) and move my hands to do simple things like brush my teeth.

When I was finally able to walk up the 17 stairs to get to my apartment, it was bliss. I hadn't seen Holly, my cat, in over 3 months It was sheer heaven to sleep in my bed, and after a couple of days I was able to sleep on my side! (I"ve always been a side sleeper).

I didn't have the dexterity to type for another 2 weeks, even though I was getting physical therapy for two and a half hours, five days a week. I also had problems with my eyes. It wasn't until last week where I was finally able to start reading. (A bookworm without reading is a terrible thing). I still do not have the upper body strength to take a bath- I cannot rise out of the tub. I still have problems washing my hair and taking showers, I can only stand for about one minute, without falling. Hence, my long hair was cut six inches, despite tears.

Well, I am back on line now and this whole experience has humbled me. It's brought me closer to my family and extended family (one uncle left and various cousins), who admire me for going through this. It's made me appreciate my friends more as well. Of course there is a lot more to tell, and I hope to do so later in this blog, but I said this would be the Cliff Notes version.

And what brought all this on? A reaction to an anti psych drug, Haldol, that I was taking because my new p-doc was trying to find something to work along with my Lithium. I am currently on Lithium and Cymbalta and everything is fine now. I'm in the best shape of my life since my twenties, and happier then I have ever been since then as well.

The things we do to stay well and deal with this illness.