Sunday, October 25, 2015

What Am I Supposed to Do?

When you're so far below the floor, everything's a ceiling
-Death Cab for Cutie

"So far down in this hole, there's little daylight.
I feel the shards of the midday sun and then it's black as midnight."

















I am, indeed, in a hole - a new hole since I last wrote - and I don't know if I can get out. In fact, it's starting to occur to me that I may have just plunged myself into a hole where there is no healing path – or at least not one I can endure anyway. To heal, you have to understand what's wrong - where the pain is coming from. There are too many variables and too few knowledgeable experts for me to feel confident in taking any direction. 

HOW IT STARTED


Let me just quickly go back and try to delineate the process that's led me here.

One time in college, I smoked too much pot and I experienced the unnerving sensation of depersonalization so extreme, it triggered a potent panic attack. That one experience, I believe, carved out a neural pattern that made it easier for me to have future panic attacks.

Later, in my young adult life, I made the same mistake with marijuana and had another debilitating panic attack that led me to the ER. And about a year after that, yet another panic attack came on – this time without any chemical assistance. I was so frightened by this that I made a doctor's appointment the next day. This was in 1999, when the growth of prescriptions of SSRIs was exploding. The information I was reading on the internet at the time said they were effective in 70-80% of people who took them.













Paxil had recently come out and was touted as the first SSRI with an “anti-anxiety” component in addition to anti-depressive. The doctor I saw prescribed that and xanax, as needed. He stressed the habit forming aspect of xanax but said paxil was nonaddictive. When in a state of anxiousness, my decision making habits are made quickly, oftentimes without thought of long-term consequences. Which is exactly the model of psychiatry and the pharmaceutical companies they rely on – find medicines that provide relief to immediate crises.

For two weeks, I grew more obsessive and fearful of having another panic attack. I was told the paxil wouldn't start “working” for two weeks or more. In that time, I sank into the first depression I'd ever experienced. I attributed it to the nervous obsessing panic that wasn't really abating unless I took a xanax. It didn't occur to me then that the paxil was contributing to the problem – that it was “temporarily” destabilizing my brain in that two-week window.

But just like they said, around two weeks later, I started to feel normal again. The paxil “worked”. However, I would continue to have panicky, depressive episodes periodically lasting a few days and then rapidly dissolve. In no circumstance was there a clear, specific life circumstance that I could attribute to these dips.

They were frequent enough that I started to see a psychiatrist regularly. I'd been switched over to the controlled release paxil at some point. But in 2005, there was a shortage of the controlled release version and I had to take the standard paxil. In that time period, I sank into the deepest anxious depressions I've ever experienced. In my emergency state of mind, I called my psychiatrist in crisis mode and he prescribed 1.5mg of xanax daily to "augment" the paxil– I had only used it sparingly before that. As all times before, I “pulled out” of my depression about a week later.

Benzo Harm Awareness


As the years went on, I developed problems from daily use of xanax – extreme lethargy and intense inability to stay awake while driving long distances. I took frequent naps, I feel asleep watching movies a lot of the time. In 2011, I decided I didn't want to be on xanax anymore and I tapered off it quickly without any consultation with my doctor. Things weren't right with me as I went off. I had heavy legs and strange parathesia-type sensations in my head. It got more extreme and several doctor visits before I made the connection with the medication. I found the Ashton Manual online and presented that to my doctor saying I wanted to go back on benzos – this time Valium – and taper per her 10% a month protocol.

As soon as I got on the valium, my symptoms remitted. I was so relieved and felt my troubles were over as long as I stuck to this tapering method. But I was naive. Even cutting 10% a month gave me horrible withdrawals – depersonalization, increased generalized anxiety, irritability, etc, etc.

Eleven months later, I took my final dose, hoping I'd been through the worst. But the worst was still to come. Extreme insomnia, emotional lability, myclonic jerks at night and a host of other bizarre psycho-physical symptoms pervaded. I muscled through it at work, missing many days, until I couldn't continue and took a three month leave of absence. In that time I went through the windows and waves of withdrawal well documented by others who've gone through this.

I was not much better when I went back to work, but I made myself go. Staying at home had only been making my ballooning self-loathing worse and being distracted by work helped pass the time. Pretty close to a year after my last dose of xanax, my symptoms eased and my mood stabilized. I still couldn't feel happiness strongly and felt little need to socialize. I wasn't “healed”, but I was better.

PAXIL NOW TAKES ITS TURN


About two years after my last dose and having read about the potential long-term harms of antidepressants, I decided I was going to go off paxil, which I'd taken daily for 15 years. I'd heard some talk of serious withdrawal from SSRIs but the accounts seemed fewer and less severe than those withdrawing from benzodiazepines. Because I had now turned on the profession of psychiatry, I wanted to purge myself of this last medication.

So in October of 2014, I started cutting 5mg a week of my 25mg dose – a rate I now realize was far too fast. I should have learned my lesson. Deeply obsessive ruminating thinking took ahold of me followed by a growing depression. By January, I was a mess. In that time, my mom developed stage four breast cancer and I decided to go back on paxil. But there was no response. In fact, things were getting worse day by day.

For the first time in all of my experience with these problems, I had the urge to kill myself. I tried it with a belt around my neck a couple of times but I couldn't stand the choking feeling and stopped. On Super Bowl Sunday in February 2015, I was so depressed and unresponsive, that my wife took me to the ER where I was admitted to the in-patient psychiatric unit at our local hospital. I was a wreck – and I was visibly worse than everyone else I encountered. It was baffling – they were all dealing with extreme life circumstances that brought them to attempt suicide. My life, by comparison, was far better – I have a job I like, a wife I love, two kids and some great friends.


They were getting better – the group sessions were helping them, but I felt horrible no matter what I was doing. That said, I was released a week later and felt slightly better. I returned to work for a few days, but began to sink again. I then re-admitted myself to the psych unit. I seemed to have complete amnesia about the failings of psychiatry and the nature of my illness, that I was willing to try anything they suggested. After two more weeks there and no improvement, I pursued their suggestion of electroshock therapy (ECT). That took me to a hospital in Spokane (3 hours away) where I stayed for a month and received 11 treatments. Compounding the difficulty of my current situation, however,  was that they also prescribed 150 mg of zoloft as well. I had gone off Paxil in the hospital in Missoula.

The first two days after an ECT session, I would feel better but over the weekend, when there weren't any sessions, I got much, much worse. After a month in the hospital and 11 shock treatments, I was released and was no better.

I went back to work for a few days but then took myself back to the ER. The in-patient unit wouldn't take me and I was told my only option was state hospitalization. I decided to go home and try to tough it out, but my future felt extremely bleak.

THE FRYING PAN OR THE FIRE?


 In addition to the zoloft, I was given a prescription of ativan (prn). After all I had been through to get off of benzodiazepines, I did not want to take the ativan. But I was starting to develop a growing inner restlessness called akathisia. Feeling like it was either that or unendurable restlessness, I periodically took an ativan before work. I noticed that on those days, I would improve. I didn't want to take it daily so I fought through several days of severe unease hoping the periodic improvements weren't related to the ativan. But the akathisia was festering.  I could feel it up and down my spine – like my nervous system was in a vice and it didn't relent at any time of day until I went to bed.

So I made a Faustian bargain.



I started taking ativan three times a day. This was my last stand. If this didn't work, I would take my life. The level of suicidal ideation I had after release from the hospital was intense. I've never experienced it so dramatically. In fact, just thinking of suicide gave me relief. I would tell myself just to wait until the evening and then slip out and hang myself. But in less than two days of taking ativan regularly, I started feeling much, much better. Astoundingly better. At times, better than I felt before I went off benzos.

For about two weeks this went on and my goal was to go off the zoloft slowly while staying stable on the ativan. But the ativan fix didn't last. I slipped down again, where I'd wake up feeling both incredibly anxious and bleak. It would lessen as the day went on and I wasn't nearly as bad by the evenings. At times, I would have strongly over-emotional responses to negative thoughts or sudden changes. Thinking about anything in the future that I had to do – no matter how routine or insignificant – would give me an instant feeling of crushing despair. When I'd re-run the thoughts, the emotion wasn't as strong. It seemed to be related to whatever part of the brain is involved with immediate emotional reactivity.

But it wasn't monolithic – it came and went. I had times where I felt mostly normal. I started running two miles a day – exercising more than I ever have before. I was much better even at my worst then I was months before, but I was constantly worried I'd slip back to the point I'd been when I was hospitalized. I knew what I was going through was a reaction from the medication, but the psychiatrist I'm currently seeing unsurprisingly doesn't see it through that lens. I had to underplay the severity of what I was feeling for fear she'd prescribe something else.

She switched me over to klonopin in August (equivalent ativan dose). About a week into it, I again had a resurgence of improvement – the morning restlessness abated and the over-emotional responses vanished. For about three whole days. And it all returned again. Only this time, there have been far fewer breaks and the malaise is lasting longer throughout the day. I haven't missed a day of work due to this in six months, but each day is a fight to get to 5 pm. And it's getting harder.

 When I decided to get off of benzos, I had a dedicated healing path and goal. Faith in that goal and the testimonies of healing from others kept me going. Now I don't see a path -  I feel like I've gone 10 steps backwards and the right direction to turn now has vanished. This is where I'm at now. And why I'm scared and despairing and have the same question going over and over in my mind.

WHAT AM I SUPPOSED TO DO?

Thinking it may be due to tolerance to the benzos, I've tried increasing my klonopin dose, but it seems to have the perverse effect of making me more depressed while doing nothing to abate the internal restlessness – this feeling of being in a vice and the hyper-emotional (dis) response to any form of negative thought or thought of the future. I haven't made significant increases in the dose because I'm not sure it would help and I already hate taking the benzos as it is.

I don't know if this is withdrawal from the paxil I took for 15 years or a response of akathesia from the zoloft I'm taking. I'm scared that if I cut down on the zoloft, I'll get worse but I'm also afraid that the zoloft is causing the problems. After harrowing responses to changes in my medication, I'm scared to do anything. I simply can't stay home and endure another withdrawal process. I won't make it. But doing nothing is increasingly untenable.

What's making this worse, as anyone who has experienced severe withdrawal reactions to psych medications can attest, is there are no experts who believe this is a possible response from medication. The psychiatrist I'm currently seeing doesn't see it that way – she's told me that I control my thoughts and that I probably have to go to counseling to deal with these issues. The therapist that I see, and who I've seen for years and knows me far better than any psychiatrist ever could, absolutely believes that it's a complicated response to psychiatric medication. He really doesn't know what to do to help.

Nobody does.

What's even worse for me is that the absolute dearth of people who know what I'm going through and the seemingly small numbers of people who experience severe reactions like this make me doubt myself. Complaining of unobservable internal nervous system symptoms sounds so vague and, frankly, annoying to others. And as someone who has struggled with self-confidence issues, it's hard for me not to worry that this isn't from the drugs – that it's a personal failing of my own somehow.

INVALIDATION DOCUMENTED













A comment from psychiatrist Jeffrey Junig made once haunts me. He had been writing a blog on Psych Central where he was dismissing the likelihood of prolonged protracted withdrawalsymptoms from benzodiazepines. Several of us went on the comment site to rebut and share our experiences. To one person claiming problems of cognitive fog, etc, he wrote the following:

You must recognize by now, after your frustration with the medical system, that whatever is going on with your health has no ‘plausible’ explanation. I suspect, though, that someone trained in neuroscience and medicine will have a better likelihood of coming up with a plausible theory, than someone without that training.

Millions (literally) of people have started and stopped benzodiazepines who have no complaints of ‘problems following lists or written instructions, reduced ability to think creatively and abstractly, poor focus and concentration.’ Your theory is that there is something special about YOUR brain, causing you to have a different experience that other humans. Yes– there are enough people with symptoms like yours to fill a web forum or two—- but among the 200 million people in this country alone, there are large groups of people complaining of pretty much any symptom you can imagine. That’s human nature.
The idea that you, and perhaps another 0.1% of the population (that’s generous), have something different about your brain that made it respond in the way you describe, is not plausible to me.

On the other hand, conditioning is a universal phenomenon– in almost all animal life. Conditioning is why you find your way home at the end of the day. I am confident I could ride a bike today, even though I haven’t been on one in 25 years; that’s the power of conditioning.

The first issue in your case is distinguishing whether you truly HAVE ‘trouble following lists or written instructions, reduced ability to think creatively and abstractly, poor focus and concentration’– or if instead you only THINK you do. If you want to know the answer to that question, see a neuropsychologist and go through the battery of tests that determine those things. But if you do that, be prepared to accept the likely answer– that you are normal in all of those things.

If you DO have those problems, then you have to consider a mechanism— and a reason why you are uniquely effected. You also have to rule out other reasons…. for example, something must have been a problem for you, for you to start benzos in the first place. Either you had anxiety, or you had an addictive nature that caused you to take them. How do you know that one of those things– things that were present BEFORE the benzos– didn’t progress to your current problems?

This is often what I fear is wrong with me, that I've conditioned myself to have these reactions. My mom was on zoloft for several years and went off it with only a few days of brain zaps. Why is this so severe for me? I don't have the self-confidence to be calmed by the thought that I'm an outlier or that maybe way more people do but don't recognize the problem as from their medication. There are millions of people who are taking or have taken SSRIs and benzos who, as Junig mentions, seem to have nowhere near the trouble getting off the meds that I have had.

And on the other side, I read from those critical of psychiatry that these drugs cause irreversible changes in brain functioning. Trust me, when you have exaggerated anxiety to negative thoughts, reading that only heightens the feelings of helplessness. Maybe there isn't anything that can be done for me. I can't go on like this indefinitely, I know this. So I ask you again non-rhetorically:



WHAT AM I SUPPOSED TO DO?



Tuesday, November 18, 2014

The Case of the Mysterious Adoration of Peter Breggin


Banging into a Brick Wall

Apart from the actual symptoms, the most alienating aspect of benzodiazepine withdrawal was the invalidation by the medical community. I spent much of 2012 – the year I hit tolerance - visiting my doctor, knowing something was wrong and suspecting the medication, only to be encouraged to pursue other – more well known – avenues of treatment.

The key discovery at the time came when I stumbled on the Ashton Manual – the online guide to benzodiazepine tolerance, withdrawal, and discontinuation. Written by a neurologist with impeccable credentials, Dr. Heather Ashton spent years running a clinic for people trying to get off the drug. Her clinical description of symptoms associated with the medication, tolerance and withdrawal, mirrored my experience. It was the first time I felt like I wasn't descending into insanity.

But despite the nearly unimpeachable rigor of the manual and the ubiquity of benzodiazepine prescriptions worldwide (xanax is the number one most prescribed drug in the US), my physician had no knowledge of the manual or the syndrome and neither did most other established healthcare sources I pursued. Sure, there would be acknowledgment of tolerance and dependence, but no one seemed to validate that the severity of what I was reporting was real – or at least not without extenuating, contributing factors.

This was, and continues to be, one of the most troubling mysteries for me. And the greatest frustration.

Trying to find a Sheriff or a Mayor in the Wild West

When you get off the main road of established medical conditions and treatments like I had to do with benzodiazepine withdrawal, you find yourself in a dense forest of uncertainty. The online community of alternative medicine and support groups for benzodiazepine and psychiatric medication withdrawal in general is a living embodiment of the wild west. There are no rules. Because of the dearth of research into drug discontinuation - what you encounter for coping strategies is anecdotal and often times contradictory.

What I wanted more than anything were more voices of medical credibility to back up the Ashton Manual. Heather Ashton for all her brave work, did not create a movement or get heavily involved in advocacy. She also doesn't seem to have too many other colleagues in the field who have studied the long-term cognitive effects of benzodiazepines and the drawn-out symptoms some people encounter when they get off. So who do people turn to for legitimacy when trying to get awareness and acceptance of this phenomenon?

Fortunately, there is a burgeoning psychiatric reform movement with compelling voices, led by serious professionals like Robert Whitaker (an independent journalist who has uncovered an amazing amount of data that throws cold water on the efficacy of psychiatric medication), Peter Gotzsche (an internal medicine specialist and expert in clinical trials and the drug industry), and David Healy (a psychiatrist who runs an excellent prescription drug database and advocacy site RxISK). Those three alone have helped build a grassroots campaign questioning the validity of psycho-pharmacology. Many other mental health care specialists and former patients have joined them in advocacy for reform and awareness of the harms of psychoactive drugs.

The Self-Described "Conscience of Psychiatry"













And then there's Peter Breggin.

Breggin is a psychiatrist and a long-time critic of biological psychiatry and the medical management of mental health care. He has for decades railed against medicating people with mental health issues and criticized essentially all psychiatric drug use.

Frequently cited by psychiatric reformers, Breggin's adoration often approaches patron saint status – something he seems to relish as he refers to himself on his weekly podcast as “the conscience of psychiatry.” That he was an early critic of psycho-pharmacology definitely plays into this unquestioning respect. But part of me keeps believing that as the movement grows in credibility, it will start to shed the skin of some of the more deleterious elements involved in the effort.

But what motivated me to write about Breggin and how his specter haunts me is the simultaneous posting of Breggin's most recent youtube video by both the Council for Evidence-Based Psychiatry (Dr Gotzsche's advocacy organization) and Mad in America (Robert Whitaker's well-known grassroots web page).



On its face, the basic thrust of the video is one I wholeheartedly agree with and is an argument that needs to continue to be made to prescribers and those contemplating going on psychiatric medication. I don't particularly care for how simplistically Breggin describes the drugs (and the brain for that matter) or the implication that everyone who takes them experiences these harms while no one is helped. But largely, it's an argument I agree with.

UFO's, Brain Chips, and Progressives, Oh My!

But it only takes a quick look at Breggin's career path and associations for me to feel completely uncomfortable with those organizations putting his face on the front of their web pages and trumpeting him as a legitimate medical authority.

Just enter “Peter Breggin” into Google and count the crazy.

For one, you find numerous guest appearances on some of the weirdest, most paranoid programs around. One of the most glaring examples is his presence on the wacky AM radio program called Coast to Coast. On its web site, the program describes itself as “a media phenomenon, Coast to Coast AM deals with UFOs, strange occurrences, life after death, and other unexplained (and often inexplicable) phenomena.”

Breggin has not just made one or two appearances on the program, he has his own link on the page as a recurring guest. Program titles he's been a guest on include “Psychiatric Drugs/UFO Disclosure”; “Supernatural Realms & Psychic Work,” “Satanic Ritual Abuse,” and “Advanced Beings and Reincarnation.” His portion of the segments are grounded in his work and criticism of psychiatry, but the surrounding content is literally not of this earth.

The crazy takes a more pernicious turn when you discover Breggin was also recently a guest on the Alex Jones Show. A 9/11 truther, armed militia supporter, and friend of illuminati wackadoodle theorist David Icke, The Alex Jones Radio Show mines the most paranoid conspiratorial theories, actively encouraging its listeners to buy survival kits for the upcoming apocalypse.

In the June 27th appearance, Breggin and host David Knight spend a good 20 minutes in a froth over fears of the government inserting brain chips into the populace. The kernal of truth in the segment is a project by the Defense Advanced Research Projects Agency (DARPA) to record and stimulate brain activity in veterans with issues related to PTSD. It's not nearly as Orwellian it sounds either as it incorporates Deep Brain Stimulation technology which is already a common and popular form of therapy for treatment of neurological conditions like Parkinson's and dystonia (a movement disorder). But to hear Breggin and Knight opine about it, it's the next step before being assimilated by the Borg.



And if that isn't enough, Breggin is a frequent guest of the unhinged, hateful right wing radio personality Michael Savage's show. You may remember Savage from several years ago when he created an uproar claiming that autism was a fraud and that, in 99% of the cases an autistic child is a “brat who hasn't learned to cut the act.” The widespread revulsion of the comments resulted in Savage's nationally-syndicated program losing sponsors and getting picketed by parents groups. But it certainly isn't too objectionable to Breggin.

Savage's show is your typical right wing AM talk radio program, focused on the horrors the Democratic party, and progressives in general, inflict upon our god-fearing country. Breggin has been on the show most of the time to discuss the over-medication of society where he frequently plays into Savage's hand trying to depict the problem as stemming from heavy-handed big government forcing medication on hapless souls. But at least on one occasion, Breggin himself editorialized on the dangers progressives inflict on society by shirking away from “personal responsibility.”


I mean never mind that if it weren't for the gains of progressives, Breggin wouldn't have the ability to access government and corporate records that he uses when he's tasked with being an expert witness in litigation cases against pharmaceutical companies. He certainly wouldn't have the legal avenues open to him for his litigants to pursue wrongful death lawsuits, a lucrative money making avenue of his career. But beyond even that, his gross caricature of progressives as eschewing personal responsibility and likening them to children is so simple-minded and naïve that I can't imagine how he's ever been able to convince anyone of anything.

Mad in America Protects Breggin

Dr. Breggin has been at this a long time. That could be part of the attachment to him – he was making these arguments before Robert Whitaker, before Marcia Angell, and the Kirsch Study. Perhaps Whitaker, Gotsche and others feels a debt of gratitude to Breggin for paving the way and getting many things right about the dangers of psychiatric drugs decades earlier. But I still think it's worth debating.

I tried pointing out my reservations about Dr Breggin in the comments section of his youtube video in Mad In America. I cited the frequent guest appearances on Coast to Coast and his June interview on the Alex Jones Show.

I definitely expected some blowback from other commenters, but I did not expect the site to remove portions of what I wrote. Just 12 hours after writing my concerns about him, however, I got an email from the Mad In America website moderator informing me that two comments I made were being removed.

One of the objectionable remarks I made was “Breggin has a relationship with Scientology.” Technically, that's not accurate. Breggin HAD a relationship with Scientology when he worked for the Citizens Commission on Human Rights (CCHR) – an organization created by the Church of Scientology to combat psychiatry and psychiatric medication. He stopped working for the organization in the 70's and completely disavowed Scientology not long after. But CCHR still disseminates his work and criticisms (most likely against his preference) and so it's easy make the assumption of a connection.

But it's the other “objectionable” remark that drew rebuke that really floored me – the moderator removed a sentence that “implied he is a 'zealot.'” I simply was expressing my uneasiness with him as a major figure in the reform movement and the rigid combativeness he exudes when talking about the field of psychiatry. That was over the line, apparently as the moderator told me, I don't think it would be respectful or responsible for us to offer a platform for bloggers just to let them be dragged through the mud.”

And that's the mystery in a nutshell. Does Mad In America and the Council for Evidence-Based Psychiatry not know that the person they promote on their web site airs his views on shows so easily dismissed by rational people? Is accurately pointing that out "dragging him through the mud"? I am more of a “victim” of psychiatry than he ever will be (in fact, he's benefited a great deal from psychiatry when you look at his paid efforts of criticism), yet I'm the one being censored for voicing uneasiness with his vaunted status.

Summarizing the Case and Why It Matters to Me

Why is the psychiatric reform movement trumpet this guy so readily? How can such a movement engage in dialogue with the established mental health world, when one of its most-promoted figures so effortlessly associates himself with crazy and intolerance?

This seems maddeningly self-defeating for a movement that desperately needs understanding and awareness.

This is not an academic issue to me. I've been pounding my head against the wall for three years now trying to carve out a space of understanding with doctors, family members and friends. What would any of them say if they saw Peter Breggin's multiple guest appearances on Coast to Coast? How much success could anyone have saying, “just focus on what he says about psychiatric medication and ignore the fact that he goes on shows about UFO's, lizard people and paranoid conspiracy theories.”

But I feel like I'm the only one. And I don't understand it. Where are the people - those fighting for acceptance, awareness and more research into this field - vigorously objecting to the inclusion of Peter Breggin as a reliable and legitimate authority?

When I was at my worst and there was simply no where to turn for support and understanding, I doubted myself. If this isn't a real condition– I thought – then I'M the problem. I'm too weak for this world. There is no one here to back me up, to take the burden of responsibility off me, to say that this is not my fault.

I wanted research that proved what I was going through was not a personal failing, but a genuine medical phenomenon from taking benzodiazepines for six years as prescribed by a doctor. I wanted credible, sensible voices whose work I could share with the physicians and counselors I was going to for help. And so have scores of people before me, scores of people right now trying to work with their doctors for help, and scores of people who have yet reached tolerance.

There is so little out there in the mainstream medical world validating this experience that isolated me and many others. So much is unknown because the research is lacking. So much still needs to happen for this condition to be accepted and understood. It's not that the numbers of people suffering what I've gone through are dramatic, it's that the experience for those who do suffer from it is so traumatic and disabling that many resort to suicide. I know this for a fact because no fewer than three people I encountered on message boards and support forums took their lives while I was frequenting them.

So this is the place I'm coming from when I raise this case about Dr Breggin. I personally feel that his poster-boy status is harming those of us fighting for awareness and legitimacy and I genuinely want a dialogue on this so I can either understand why he's so prominently featured or plant seeds of concern about him and the questionable baggage he carries.


Saturday, November 02, 2013

Clearing My Name



During the middle of the worst of it, while I was on a three month emergency medical leave, I put words to a feeling I'd had for weeks.

About four and a half months after my last .5 milligram tablet of valium, I was facing a weekly battery of intensively probing questions about my childhood and the person responsible for conditioning me to suppress expressions of anger. It was intense psychodynamic therapy with the underlying premise that my current emotional lability, depression and anxiety stemmed from a childhood experience of shaming. That someone important in my life taught me to suppress any outward sign of anger, predicated on the famous adage that depression is anger turned inward.

“But how did that make you feel?”

“Can you express what your primary reaction to (whatever life event we were discussing) was?”

“No, that is a rationalization, I want to know how you REALLY felt?”

“Of course you felt sadness at your father's death, but what ELSE? “

“There's something more you felt, wasn't there? Can you access it? This is important.”

“I want you to notice your body language right now. Why can't you look me in the eye? Who taught you that you weren't good enough?”

During the last of the weekly debriefings with my wife after a particularly fruitless and intensive session, I finally found the strength to say how I REALLY felt: “It's like being accused of a crime I didn't commit.”

And that is the crux of what so many people experience when they seek professional help for the overwhelming subjective hell of a brain off its hinges from benzodiazepine withdrawal. Especially if you're more than a month from discontinuation and your taper was a judicious 10% cut a month as mine was. The therapist I saw humored me to the point of accepting that the withdrawal was making things worse. But his approach was firmly rooted in a belief that my problems were fundamentally psychological.

I was supposed to be doing neurofeedback with him. But during the intake he latched on to my emotional insecurity and started digging. Which led to regular talk therapy. It's difficult for me to confess how susceptible I was to treatment suggestions that I knew deep down weren't going to take this pain away. The few who experience traumatic, prolonged misery from discontinuation of benzodiazepines slowly learn to accept that the only salve is time.

But I doubted my own mind, my own own experience, because my already shaky self-esteem was magnified ten fold from withdrawal. I even convinced myself that some good could come out of it. For one, it would show loved ones that I was taking the problem seriously, I was getting treatment. Not just sitting on my hands while fear, paranoia and hysteria festered within. I even felt that it might help me find insights on the cause of the rapidly blossoming self-hatred I felt every day I sat at home not working.

So I went to the therapist for about a month and a half. Throughout, I felt like a naked child talking to an adult who knew things about me that I didn't. I even played a sick game of expressing anger about things that didn't anger me because I knew that's the only way I could make “progress.” The more we talked, the worse I felt, the more I blamed myself for my problems and the more powerless I felt to defend that self-attack. At one point, he accused me of backing away and distancing myself from my real emotions. That was it. No more of this.

As I said earlier, I KNEW what was (and is) wrong with me. Those who have gone through this know. They know because there can be no more profound, yet existentially horrifying, experience. And I say that with 100% certainty despite my relatively inexperienced life.

It's like in Lord of the Rings, when Gandalf the Grey is replaced by Gandalf the White. He tries to explain what has happened to him after falling down into the abyss past Khazed-dum with the ancient Balrog beast. He says, “Time is short. But if there were a year to spend, I would not tell you all.” So much had he been through since he had seen his companions last that he had forgotten his name. His time transformed him into a wholly different person inside yet, by all appearances, he was the same. To the others, only a few weeks had passed, to Gandalf “each day was as long as a life age of the Earth.”



And in a sense, that's how profound of an experience each day at its worst of benzodiazepine withdrawal is for me. On the days the fog of symptoms clear and the mysteriously fickle windows of clarity re-emerge, I am aware just how much I've silently felt and experienced. And sometimes when I see someone I haven't seen while in the throes of withdrawal, it's as if ages have passed since we last spoke, that I must have much to tell them. You just can't go through that and think your own psychology and the burden of the worst of your life experiences could cause your brain to act that way. Not without help.

So here it is more than nine months after my last dose of Valium and I have made incredible progress. As the fabric of my self slowly gets knitted back together, I feel a moral obligation to try to explain that this is a real phenomenon. That, despite the implausibility of such an experience being due to the withdrawal of a prescribed medication (always taken as prescribed and at a low dose); despite the fact that by all accounts, a very, very small number of people experience the mental degradation and existential annihilation of consciousness that I have going off this drug; despite the fact that there is not any clear and conclusive physical evidence that something has gone radically awry in the brain; despite the fact that almost any doctor or psychiatrist you encounter will deny profound symptoms like that could be attributed to a medication; despite everything that my therapist tried to pin as the cause of my problems; despite all of that – I know that my problem was the drug.

One day during a window of normality a while back, I wrote the following message to myself to read when going through a wave of neurological symptoms:

“It's not your fault. It is not your self-esteem issue. It's not your dad's death. It's not your upbringing or your past anxiety. It's the effect from the drug. Believe it. No one can feel like that on their own. It's impossible.”

It's now my turn to try to convince you the reader and hopefully others in the mental health community of the same. The depth of the problem is not in the numbers of people who suffer this (and there are many, many others who do) but the depth of the suffering and the dearth of resources and knowledgeable people out there to help.

So that's why I say this is “clearing my name.” I don't mean that literally – what I mean is that I'm trying to prove that this happened to me from a medication and not from a psychological failing of my own making. That despite the fact that I “have a past record”of mental health issues that include depression and anxiety, I am cleared of culpability for the past 19 months of suffering.

My far-reaching (and far-fetched) hope is that this case could be put before an actual jury of the general public for consideration so that this issue will not continue to create small, out of the way enclaves of benzo withdrawal sufferers forced to communicate with people they don't know for support. These support groups which I have spent time in are both much-needed affirmation of the experience and electric magnifiers of fear. So little consensus on the nature of the process exists that the void often gets filled with misinformation, half truths, and rubbish.

So I hope you find this interesting and I hope you can see the currently unseen – those poor souls trying to survive day to day with a broken mind not of their making. They need help, they need acceptance and they need the jury to rule in their favor.  

Sunday, October 27, 2013

The Overrated and Understudied Brain

I bought a 2004 Toyota Prius this week. I call it “future car” because it starts not by turning a key, but pressing the “on” button. Despite being nearly 10 years old, this impressively engineered vehicle doubles the gas mileage of most other new cars. Looking at how it's designed, it's almost impossible not to be impressed at the sophistication – a testament to the complexity of the human brain.

But what does it say about us that the very same brain that we all admire for creating a car like the Prius is also responsible for the catastrophic problem of global warming to begin with? And why is it harder for us to praise the simplicity of an act like walking to work than it is to marvel at the invention of something that, despite improvements, still spits out greenhouse gases? 

Because, look, if some mysterious higher power were to evaluate the status of our planet and find the element most likely to cause its demise, the human brain would be at the very top of the list. In fact, it would probably be the only thing on the list. And after everything that I have gone through over the past two years and counting, I feel pretty secure in saying that our brains are both fantastically sophisticated and horribly designed to live the way we do.

Consider that for hundreds of thousands of years, humans lived and evolved in small social groups of hunter gatherers. Over this time, our brain's ability to recognize and respond emotionally to familiar faces became increasingly sophisticated and helped us forge the necessary bonds for survival. To protect us from outside threats, that same sophistication led to equally strong reactions to unfamiliar faces.

And while that was great for us in small tribal groups, it had some horrible consequences in the last few hundred years when our population and range expanded - slavery, war,  genocide...sports. In fact, I would argue the amygdala and its primal power within our reactive minds is now far more destructive than helpful.

That's not nearly the only flaw in the human brain either. A friend of mine on Facebook posted the youtube clip below that provides a biological explanation for the universal human trait of marriage.



So that's how we safeguard the brain while it matures - marriage? Not exactly a fool-proof device. Throw in an alcoholic parent, an impoverished couple, or a sexually abusive relationship and the same system required for healthy brain development turns the mind to a dangerous weapon of self-destruction and/or a threat to others. It can also lead to an unacceptable amount of suffering.

All of this and my current experience suffering from benzodiazepine withdrawal shapes one of my primary views of mental health – that our brains aren't as elegant as we think they are. It also makes me more convinced in the biological underpinnings of mental health problems and leads me to the opinion that our current mainstream approach to treating them is, so far, wholly inadequate and primitive.

It also puts me in a strange place in the current debate over psychiatric medication. My sympathies now strongly lean toward the anti-psych medication arm of the discussion but I'm perversely put off by that same crowd's insistence that mental health disorders are not problems of biology. I understand what drives their passion – mental health experts and pharmaceutical companies performed a heinous human crime insisting on a simplistic theory of chemical imbalance to justify the need for medications like SSRIs and benzodiazepines.

But as many researchers have pointed out, that shouldn't mean we throw the baby out with the bathwater. All human behavior is biology and all human behavioral problems are also biological. When I say “biological” I don't mean just our genetic makeup or anything that is a set-in-stone trait. Any true definition of the word encompasses the fact that genes can't be separated from their environment. Much of our DNA are just complicated instructions our body has for how to react to life's events. And how we react to life's events, as much as we insist differently, is not ever entirely within our control.

This belief comes from my own direct experience. The way I have felt and reacted to events put in front of me over the past 19 months is so far afield from how I wanted to react and how I knew I should feel that I either conclude that I'm suddenly astonishingly inept at basic human functioning or that changes in the biology of my brain was so much more profound than the 42 years of life coping skills I developed prior to getting off xanax. I'm just going to go with the latter on that.


We have simultaneously overrated and understudied this bloated pink contraption running the show.


So what I need from readers of this blog as I start writing about my thoughts on benzodiazepine withdrawal, the brain, and the horrific gap between knowledge of withdrawal and the depth of suffering it creates is to accept the view of the brain as a potential loaded weapon. The disruption that causes the weapon to do harm can just as easily be a traumatic life event as a pharmaceutical drug because both effect brain chemistry.

 
Accepting this premise shouldn't make us de-facto proponents or opponents of medication. Rather, it should light a fire under our respective asses to put far more resources into understanding brain function and environmental influences than in creating drugs to treat the maladies we so poorly understand.

Because I'm pretty sure that knowledge is going to result in a collective gasp of horror at how crude our current pharmacological approach has been.