I was prescribed Sertraline (Zoloft) in 1998 when I had postnatal depression. I was told to take it for a year to 18 months. I went from deep depression/anxiety to euphoria in the space of about two weeks, I felt pretty damned fantastic, there was nothing I couldn’t handle. As time went on I continued to feel well but my emotions were dampened down, so I was functioning well, no depression, but no “joy” either. After a few months of feeling well I decided I didn’t want to be on Sertraline anymore, didn’t read the patient information leaflet or talk to a doctor, not that that would have helped anyway. I just stopped taking them. My head felt terrible, it began to feel water logged, if I turned my head there was a time lag between my eye balls catching up with the fact that my head had turned, so dizzy, gradually intense sadness would kick in, really really intense sadness and anxiety, oh the anxiety, pumping adrenaline and nerves shot to bits. I went back on the Sertraline.
The doctor told me to do the alternate day thing, alternate days for a fortnight,then every third day for a fortnight, then one tablet a week, I did this various times over the next few years to no avail. I tried a pill cutter and halving the tablet, it wouldn’t break down easily without crumbling so that was unsuccessful. Every time I tried something, I ended up in worse shape than the time before, it was all getting steadily worse. I tried meditation, healing, exercise, cognitive behavioural therapy, counselling, fish oil capsules, NOTHING touched it. I pressured my surgery to refer me to a psychiatrist for advice,but the psychiatrist had no clue and could only recommend switching to another drug. I did switch to Citalopram for a while, and Mirtzapine, I felt constant fatigue on Mirtzapine, and then back to Sertraline. Yet another psychiatrist recommended halving my dose of Sertraline and taking diazepam to mitigate the withdrawals, so replace one powerful drug with an even more powerful addictive drug.
This is my description of how withdrawal felt from my blog, I only recently found out that what was happening had a name,akathisia:

“5am and for about the 3rd night in a row I’ve barely slept, I can’t stop the adrenaline pumping round my body, my stomach is tightly knotted, I’ve barely been able to eat properly it makes me feel sick. I’m clammy, sweating and crying and P is trying to reassure me, but he has to go to work. I get up and drag myself through all the motions of the day and making sure boys get to school, I feel like the living dead, I make sure they get fed and make sure they and no one else is aware of what’s going on, I don’t hang around at the school gates. Oh I do kind of tell a few people I’m not really feeling right but I play it down.
The constant adrenaline is tormenting me on the inside and I can’t stop it.It’s been building up over a period of months and I’ve been fighting and fighting the feelings but it seems to have reached a peak of exquisite torture.It’s like being at the top of a roller coaster that never stops. Someone else mentioned birdsong, and it was a funny thing, the torture was worse in the mornings and over the summer months while it was slowly building, birdsong in the morning outside the window had become a kind of torture as well. I had to go to work part time and God only knows how I managed it. I had taken my last Sertraline tablet months ago, and come off it as per the doctors instructions, and now my depression/anxiety was back tenfold to punish me for daring to presume I could stop taking it. I must be wired up wrong, no one else feels like this do they? What is wrong with me? Maybe I really am insane, maybe I just can’t cope with life without my tablets, how come everyone else can cope with life, and I can’t? There must be something fundamentally wrong with me. By now the Orwell Bridge was beginning to look a bit attractive and I just wanted to escape the adrenaline surges torturing me, my nerves were in shreds”.
This was 2003,at the end of 2003 I gave in and went back on the sertraline.

In 2006 I attempted another withdrawal, but at the same time we found ourselves going through a stressful life event, I tried to tough it out but ended up back on the Sertraline again.
So here I was, several years later and no further forward, and not for wont of trying! Everytime I went in a book shop or library I would try and find anything I could about antidepressants and depression, but nothing really enlightened me. I rummaged around on the internet but couldn’t find the answers. Until one day, I was browsing around Waterstones, and “Coming off Antidepressants” by Joseph Glenmullen jumped out at me, (this book is now called "The Antidepressant Solution"). I read it avidly, and discovered TAPERING!!! But, all the examples in the book referred to liquid Seroxat or Prozac, I was really upset to find Sertraline was not available in liquid form. Armed with my new information about the simple concept of tapering, further digging led me to Dr Healy’s protocol of switching to the equivalent dose of liquid Prozac. These two pieces of information became my secret hope, I latched onto them. I decided to take a leap of faith and switch to liquid Prozac. At the beginning of 2007 I marked up my calendar with a schedule, I was going to go down from 5ml to 4.90ml the first week, 4.80ml the next week and so on, as my sons would say “epic fail”. By about mid February the nightmare was unfolding again and I had to give in and go back to the top of my Prozac dose, I was devastated.
Still I hadn’t given up hope, P was sympathetic but he couldn’t understand why I didn’t just give it up and accept I “needed” the drugs like a diabetic needs insulin. After lots more research, and P having interesting and enlightening conversations with a client who was a pharmacist about my problem, I started my taper again in May 2008, this time much much slower and here I am four years later down to 1ml liquid Prozac and still sucessfully tapering. It has needed a lot of self-discipline. I kept this blog/diary of my progress; I’ve been amazed to meet a few others who have been tapering longer than me. Nowadays my withdrawals are fairly benign, but I still feel a bit scarred from the experience,the akathisia has left me still feeling like my nerves are quite raw and very close to the surface but I can live with that now.
There is a huge assumption that these drugs are benign and harmless, they are not; they can cause extreme agitation and internal torture. They are dished out like smarties and people left to deal with the results. Starting them is like playing a game of Russian Roulette, you might be a lucky one who can take them and come off them with ease, or you might not. My understanding was that they were meant to be taken for only a year or so after you feel “well” but many many people are stuck on them for years or forever, I know many people who’ve given up hope of coming off SSRI’s and I hear many people say “oh I’ll be on these the rest of my life”. There is NO support or advice in place through doctors or psychiatrists on how to taper safely off the drugs.....if anyone does find any help in the UK, please let me know, although it’s a bit too late for me now as I’ve almost done it myself, but I know a lot of other people who might like to know!

Tuesday, 24 January 2012

Psychiatry's Grand Confession

Link to Original article -Mad in America - Psychiatry's Grand Confession

Psychiatry’s Grand Confession
The psychiatry profession has finally come clean and confessed on a national media outlet that there is no evidence to support the Serotonin Theory of Depression. Today, on NPR’s Morning Edition there is a segment about the chemical imbalance theory, and virtually all the psychiatrists who are interviewed acknowledge that the there was never any evidence in support of the idea that low serotonin causes depression. But then, amazingly, they go on to say that it is perfectly fine to tell patients that serotonin imbalance causes depression even though they know this isn’t the case.
Several years ago in PLoS Medicine we wrote a long piece about the serotonin theory and the disconnect between what research psychiatrists say in professional journals and textbooks and what the advertisements say. While the advertisements presented the theory as scientific fact, the scientific sources clearly did not. Given the enormous marketing programs that pushed this theory combined with the media’s lack of skepticism, we were sympathetic to the general public who could hardly be faulted for thinking that theory had some foundation in fact. Following the publication of our piece a reporter contacted us and suggested that we were attacking a well accepted theory. We pointed out to the reporter that we weren’t attacking a sacred cow but that instead we were pointing out the mainstream psychiatry didn’t even accept this theory. We urged the reporter to contact the FDA, NIMH, APA, etc and ask them about the science behind the advertisements. He did, and as expected, an expert from the FDA explained that the theory was really just a metaphor. The problem is that patients who heard their physician explain the serotonin theory thought they were hearing real science. They weren’t told it was a metaphor and hence thought it was a fact. When a doctor talks about high cholesterol, diabetes, or hypothyroidism, they are talking about scientific measurement, not a metaphor. How is a patient with high cholesterol and depression who listens to their doctor’s explanation of their conditions supposed to know when the doctor has moved from science to metaphor?
Several months ago Ronald Pies published an interesting article in Psychiatric Times entitled, “Psychiatry’s New Brain-Mind and the Legend of the Chemical Imbalance.” Pies, just like the experts on NPR, acknowledges that the Chemical Imbalance theory is not true. However, according to Pies, it was the pharmaceutical companies who espoused the theory, and not well-informed, practicing clinicians, because the psychiatry community has known all along that the theory is not true.
But if the Psychiatry Community knew all along that the theory was not true, then why did they not clarify this issue for the general public? Shouldn’t they have pointed out to the general public and patients that what the pharmaceutical companies were saying about psychological stress was not true? Why did the professional societies not publicly set the record straight?
There are many angry comments on the NPR website. These comments are interesting, because apparently many patients who were told that depression is caused by a chemical imbalance never understood that were hearing a metaphor and not science. Since the chemical imbalance theory is often presented as a rationale for taking SSRIs, such patients now understandably feel lied to by their clinicians.
Perhaps the most interesting part about the NPR piece is that the reporter seems to not understand that the idea of telling a falsehood to patients because you think it is good for them is a serious violation of informed consent. Shouldn’t the reporter have asked the obvious questions, such as:
1) Do you feel it is acceptable to present a scientific theory as fact even though you know it is false?
2) Is it okay for psychiatrists to tell patients stories about their conditions that psychiatrists know are false?
3) Is there not an ethical issue when a psychiatrist informs their patient that they have a serotonin imbalance, when the medical textbooks on the shelf clearly say this is a falsified theory?
In general, we are fans of NPR, but hopefully the next news outlet that covers this topic will be more investigative in their approach.

When it Comes to Depression Serotonin isn't the Whole Story

Yesterday, I was lucky to have three interesting articles shared with me, thanks Bobby Fiddaman and Carolyn Anderson. I think I've only got time to get one out this morning, the other two will have to wait til this evening. I like this article because it covers everything I've been banging on about for ages, particularly this : "Frazer says it's probably because it has had, and continues to have, important cultural uses. For one, he says, by initially framing the problem as a deficiency — something that needed to be returned to normal — patients felt more comfortable taking a drug.

"If there was this biological reason for them being depressed, some deficiency that the drug was correcting," Frazer says, then taking a drug was OK. "They had a chemical imbalance and the drug was correcting that imbalance." In fact, he says, the story enables many people to come out of the closet about being depressed, which he views as a good thing."
The chemical imbalance theory is absolutely rife, I see it and hear it everywhere, it's more socially acceptable than "I feel really rubbish/depressed/overwelmingly anxious".

When it comes to depression serotonin isn't the whole story

The antidepressant Prozac selectively targets the chemical serotonin.

When I was 17 years old, I got so depressed that what felt like an enormous black hole appeared in my chest. Everywhere I went, the black hole went, too.

So to address the black-hole issue, my parents took me to a psychiatrist at Johns Hopkins Hospital. She did an evaluation and then told me this story:

"The problem with you," she explained, "is that you have a chemical imbalance. It's biological, just like diabetes, but it's in your brain. This chemical in your brain called serotonin is too, too low. There's not enough of it, and that's what's causing the chemical imbalance. We need to give you medication to correct that."

Then she handed my mother a prescription for Prozac.

That was the late '80s, but this story of a chemical imbalance brought on by low serotonin has remained very popular.

"I don't know of any story that has supplanted it," says Alan Frazer, a researcher who studies how antidepressant medications work. He is also chairman of the pharmacology department at the University of Texas Health Science Center at San Antonio.

"It definitely continues to live — absolutely," agrees his colleague Pedro Delgado, the chair of the psychiatry department at UT. "If you go to your community doctor, you're likely to hear some version of that."

But for many scientists who research depression, this explanation is no longer satisfying.

"Chemical imbalance is sort of last-century thinking. It's much more complicated than that," says Dr. Joseph Coyle, a professor of neuroscience at Harvard Medical School. "It's really an outmoded way of thinking."

Coyle, who is also the editor of the journal Archives of General Psychiatry, says that though serotonin plays a role in depression, low serotonin is likely not the cause of depression. Scientific thinking has clearly shifted, he says.

Still, the story of serotonin remains. Why does it continue to have such a powerful grip on the popular imagination?

The Link

According to Frazer, to understand how the story of low serotonin came to dominate our understanding of what causes depression, you need to go back to the late '50s, to a psychiatric hospital in Switzerland.

That's where psychiatrist Roland Kuhn gave a newly developed drug to 10 patients who had been paralyzed by depression for years. Over the course of three weeks, he watched a near-miracle occur.

"There was this lightening of their mood," Frazer says. "They became more energized, more interested in things around them."

This was the birth of the very first antidepressants, called tricyclics. And with that birth came a question: How could these drugs possibly be working? Researchers had some ideas, but it really wasn't until the mid '60s, when the cause of Parkinson's disease was discovered, that a real narrative began to take shape.

It turned out that Parkinson's — a brain disorder — was caused by a deficiency of a chemical in the brain called dopamine. This discovery influenced the way scientists thought about depression.

"There is no doubt in my mind that the Parkinson's story had a strong impact on the way that people were thinking about depression," Frazer says. "It became easy to speculate that depression was due to a deficiency."

The question, of course, was what was deficient? Which chemical was too low? For decades researchers argued this question, but no one candidate took the lead. And then came Prozac.

Prozac's Pull

Almost as soon as it was introduced in 1987, the antidepressant Prozac, which selectively targets the chemical serotonin, became a blockbuster. "Prozac just blew everything else out of the water," Frazer says.

This had less to do with the efficacy of Prozac (it is not better at treating depression than tricyclics, the earlier generation of antidepressants) than with the fact that the drug had relatively few side effects.

"It was very free of side effects," says Pedro Delgado. "And so it began to be used very widely, and there was a lot of enthusiasm for it."

That understates the case. In a very short time, Prozac became wildly popular, and again, Prozac worked on just one chemical in the brain: serotonin.

And really, it is because of the popularity of Prozac that the low-serotonin story took hold, even though, Frazer argues, the scientific research has not borne that out.

"I don't think there's any convincing body of data that anybody has ever found that depression is associated to a significant extent with a loss of serotonin," he says.

Delgado also makes this argument. In the 1990s, he carried out a study that showed that if you take a normal person and deplete them of serotonin, they will not become depressed. He says he feels this demonstrates that low serotonin doesn't cause depression.

Coyle is less absolute in his dismissal of the evidence on serotonin. His take is that while low serotonin probably doesn't cause depression, some abnormality in the serotonin system clearly plays a role. But most researchers have moved on, he says, and are looking at more fundamental issues like identifying the genes that might put people at risk for developing depression.

"What's being looked at are processes that are much more fundamental than just serotonin levels," he says. "We need to move beyond serotonin, and I think the field is."

Serotonin Sticking Around

So why are so many people still talking about low serotonin causing depression?

Frazer says it's probably because it has had, and continues to have, important cultural uses. For one, he says, by initially framing the problem as a deficiency — something that needed to be returned to normal — patients felt more comfortable taking a drug.

"If there was this biological reason for them being depressed, some deficiency that the drug was correcting," Frazer says, then taking a drug was OK. "They had a chemical imbalance and the drug was correcting that imbalance." In fact, he says, the story enables many people to come out of the closet about being depressed, which he views as a good thing.

Still, there's no question that the story also has downsides. Describing the problem exclusively in biological terms has convinced many people to take antidepressants when other therapies — like talk therapy — can work just as well.

One critic I talked to said the serotonin story distracted researchers from looking for other causes of depression. But Delgado agrees with Frazer and says the story has some benefits. He points out that years of research have demonstrated that uncertainty itself can be harmful to people — which is why, he says, clear, simple explanations are so very important.

"When you feel that you understand it, a lot of the stress levels dramatically are reduced," he says. "So stress, hormones and a lot of biological factors change."

Unfortunately, the real story is complicated and, in a way, not all that reassuring. Researchers don't really know what causes depression. They're making progress, but they don't know. That's the real story.

It's not exactly a blockbuster.

When it comes to depression serotonin isn't the whole story

Sunday, 22 January 2012

The Numb Documentary has Arrived!

Back in August last year I posted about the Numb Documentary, well at long last the DVD is available for purchase here: Numb Documentary, I emailed Phil Lawrence and the DVD is compatible with UK machines. I bought one just now with some leftover birthday money and it works out as £16.58. Can't wait to actually view it, how brave of Phil Lawrence to make a documentary and let people "see" how it is to try and get yourself off Seroxat/Paxil or any of the other SSRI's.

Here's a trailer as a taster:

Tuesday, 10 January 2012

Should have seen it coming

I’ve had 3 nights of rubbish sleep and low level anxiety, I should have seen it coming, I had two reductions before Christmas after a long period of stability so this could be a withdrawal. I went a bit hyper on Friday; I got home from work and did a shed load of washing and ironing, and cooked a fish pie for the next day as well as tea for that evening, why didn’t I realise? It’s subtle that’s why. P says I always go a bit hyper before I have a crash, he observes the pattern, but he wasn’t around Friday evening to observe. In the thick of it, I find myself thinking I’m on the downward spiral, I’ll never sleep properly again, this is it, I’m cracking up, 2003 all over again. Oh, hang on! This has happened before! Get a grip, this too will pass.

Added into the mix we had to resume hostilities with the neighbours after turning a blind eye for months, an incident meant we could no longer ignore, and a carefully worded letter was called for, we checked out the facts before we wrote the letter and they don’t have a leg to stand on. While we were out said neighbour turned up on doorstep, fag in one hand, our letter in the other, and that tell tale eye twitch, our youngest answered the door and said we were out. He hasn’t been back but has upped the ante.

Prozac Reduction Timeline

I wrote the above last night, as a postscript this morning, I had a really bad night again last night, and when I did manage a couple of hours sleep I had that old recurring dream/nightmare and woke up in tears, I honestly feel the lowest I have felt in a long long time, just have to hang in there and wait for it to pass :(

Saturday, 7 January 2012

Postnatal Depression 1994 - The Back Story

So my friend said “about your blog”, I said yeesss, she said “I think you should write a bit more about your experience of depression and not just concentrate on the medications side, although I realise that’s what the blog’s about, I just think sometimes people are searching for other people’s experience of depression”. OK so I saw her point, and it had crossed my mind before that I should. I have touched on anxiety, insomnia and a bit about my second experience of postnatal depression, (which was different to the first experience and a lot “blacker”) when I started the drugs. It seems easier to write about the Lustral/Prozac issue for the world than to write a warts and all personal experience of depression. I’ve seen others do it, mostly anonymously, too late for that now I’m not anonymous anymore, that horse has well and truly bolted. I talked to Al about it and he was cool with it, trouble is am I? Well I could always delete it at anytime couldn’t I.
I was wheeled into the ward with Al in one of those Perspex cribs just after midnight, dazed and on cloud nine, I couldn’t sleep at all, I was too busy marvelling at my new baby sleeping peacefully, he was so still I had to prod him every so often to check he was actually alive.

I was in for four nights, mainly because P was self employed and couldn’t spare the time to bring us home until the weekend. I got the distinct feeling four nights was overstaying my welcome and I would have loved to have got out sooner.

The next day exhaustion soon crept in, as well as feeling extremely tearful, visitors started arriving, I was struggling to feed Al who had started to cry a lot, and I continued to struggle, as my milk hadn’t come in. I was struggling all the time to hold back the tears, I wanted to be able to let rip and cry floods of tears, but I had no idea why I felt like this, and it really would have felt like social suicide and new mum suicide to cave in. This wasn’t supposed to be how I was feeling. It wasn’t in the script. There was a massive massive gulf between how I imagined I would be feeling and the stark reality.

I was under a team of midwives who were separate from the hospital midwives. The hospital midwives were to leave the “team’s” patients to the team and not interfere; I didn’t know this until months afterwards and couldn’t work out why I was seemingly being ignored on the ward. The “team” were stretched, and the hospital midwives always seemed to ignore me and be chatting round a workstation, and because I had a straightforward textbook birth, I barely got a look in. I struggled on with trying to breastfeed an increasingly frustrated baby simultaneously holding back tears. One afternoon I was desperately hungry, Al was sleeping peacefully ( for once) so I went off to get something to eat, when I came back Al had been a bit sick, I was greeted by a hospital midwife who asked “would you always leave your baby lying in sick?”, I was mortified, NOW they noticed me! I struggled bitterly to hold back the tears threatening me.

On the way home from hospital on the Saturday, we stopped off at Tesco with Al in his baby bucket/carrier, we happened to bump into my in laws, my lovely father in law did this mock pretending to run off with Al to jokingly test my reaction, I grabbed him back and we laughed about it, but secretly I was feeling that actually I wouldn’t mind if he did run off with Al, I was feeling so terrified and overwhelmed.

When we got home P was working all hours and I continued to struggle with being a new Mum, and I don’t just mean the night feeds, nappies and general getting used to life with a newborn, I continued to struggle with my raw emotions, it was so much more than just the transient baby blues I’d read about. At the end of the fourth week, I had the final visit from a team midwife. I particularly remember that visit, I remember the midwife sloping guiltily out of the door, she knew I was distressed and holding back the tears, and I knew that she knew and wasn’t saying anything and was relieved to hand me over to the health visitor.

I remember feeling incredibly trapped by my baby.

I remember staring out of an upstairs window at people getting on with their lives, I felt like I was trapped in a kind of bubble, detached from the world carrying on around me, everyone seemed “happy”, I just felt.... detached.

I remember weeks and weeks of feeling incredibly sad, it is the only way I can describe it, the overwhelming tearfulness and raw emotions ever close to the surface lessened over time to be replaced with a persistent feeling of downright sadness, profound sadness, like grief.

I remember the health visitor one time doing the Edinburgh depression scale test on me and I lied.

I remember a doctor asking me if I felt depressed, more than once, and I lied.

I remember once a doctor gave me a weeks supply of sleeping pills for the insomnia but I wouldn’t take them. Insomnia was the most I would ever admit to.

I remember pretending to feel “normal”, never letting the mask slip.

Gradually over a long period of time I climbed my way out of it, and now it’s so long ago (Al is 18 in March) I can’t remember how long it took, but I think it was a year if not two.

This was 1994, not that long ago, but no mobile phones and no computer let alone internet and blogs to reach out to others.

So it’s obvious that I was a bottle it all up type for fear of the shame, embarrassment and public humiliation, not to mention not wanting to put additional pressure on P who was under enormous pressure himself to make ends meet. Which kind of leads nicely onto the point of the next post about Terry Lynch’s book.

My Prozac Reduction Timeline

Beyond Prozac - Terry Lynch

I stumbled across Terry Lynch, not literally, I mean on Facebook, and stumbled on the fact that he is a GP and had written this book. All I can say is I wish every surgery had a Terry Lynch in it.

This book is so easy to read for a layman (woman) like me, I’ve read some others that have been a bit heavy going, but this is eminently readable.I learned a lot about how psychiatry relies so heavily on medication to treat mental “illness”.

I learned that “anti psychotics” are in fact just major tranquillisers, and there isn’t any such thing really as an “anti psychotic” medication that targets a particular area of the brain. “Anti psychotic” just sounds more “scientific” and targeted.

I learned that there really have been no experiments carried out to actually prove that serotonin levels are actually reduced in people who are depressed, and when you think about it, no one actually offers to test your serotonin level to see if it is low, and then tests it again after taking antidepressants to see if your serotonin is raised.

I learned that psychiatry is very heavily reliant on the pharmaceutical industry and the “medicalisation” of “mental illness” to justify its existence, and that we need to stop medicalising human emotional distress. Quoted from the back of the book “loveless ness and loneliness cannot be explained by chemical changes in the brain and cured by the ingestion of drugs. Lovelessness and loneliness, like anxiety and depression and all the ways of expressing distress which are called mental disorder, are part of what it is to be human..”

I leaned a lot about different mental states like schizophrenia, bi polar, anorexia, bulimia, anxiety, depression and suicide in layman’s terms, and the situations in life that can precipitate them.

I learned just how important self esteem is, and this point can’t be emphasised enough, it’s all about self esteem, and being loved and valued.

I learned that we all need to be a lot more open, that is accepting, and understanding about human distress, and understand that emotional turmoil is a normal part of what is to be human. That we can’t keep medicating it and sweeping it under the rug.

Something in the very last chapter of the book really hit home, Terry’s description of a man who visited him "in the surgery in a huge amount of emotional distress, wailing and sobbing. As he left the surgery, exhausted and barely able to stand, he happened to bump into a male acquaintance of his in the waiting room, Terry overheard a brief interchange between the two. The other man asked him how he was; he replied, “I’m good thanks”. Whatever else he felt at this time of crisis in his life, he did not feel ‘good’, but in this world where emotional censorship rules and distress must be kept under wraps, he did not feel he could tell this person how he really felt. This brief exchange spoke volumes about the subtle censorships, which are rampant within society". Yup I could relate to that.

I did think Jeremy Clarkson could learn a thing or two from this book after his crass comments before Christmas.

Of course, what I’ve written here is a huge simplification of Terry’s book and probably doesn’t do it justice, best go and read it yourself ;) Link to the book itself on Amazon

Link to Terry Lynch's talk at Cork Recovery Conference - this man talks a lot of sense.

Prozac Reduction Timeline