Holistic Recovery from Schizophrenia

The Challenge of Going off Psychiatric Drugs

Laura Delano sent a message around a couple of weeks ago that found its way into in my inbox. She is featured in a New Yorker Magazine article, The Challenge of Going off Psychiatric Drugs. Well worth a read.

A little more than a year ago, Laura and a small team launched a non-profit organization called Inner Compass Initiative (ICI) with a mission to help people make more informed choices about the mental health system—and specifically, choices about taking and coming off psychiatric drugs.

She writes: “I know firsthand how physically and emotionally debilitating the process of medication withdrawal can be, having come off 5 drugs in 5 months (way too fast!) in 2010. The conversations I’ve had over the years with thousands of people around the world have shown me that I’m not alone. Though it’s common knowledge that prolonged use of psychiatric medication can have serious adverse effects, there have been (to date) no formal scientific studies on safe tapering protocols. Few physicians and psychiatrists and no specialized detox facilities have experience with harm reduction-oriented methods of psychiatric medication withdrawal. If a person wishes to reduce their dose or stop taking a psychiatric drug, there is nowhere to turn for support or guidance in the mental health system.

Find out more about the Inner Compass Initiative and consider making a donation. ICI website states emphatically that “We are not a “mental health” organization. We are a social-change organization.”

The rush to intervene/DO SOMETHING!

My post this week is a random gathering of my observations on the “NAMI Basics” course I’m enrolled in and how my experience with US style medicine as a rush to medicate/operate is confirming what I’ve observed from abroad before moving here.

The NAMI Basics course is a bit of a surprise in that it questions the use of medication more than I would have thought. What is troubling is the emphasis on early intervention in the teen years, which sounds like a good idea, but really means bringing in a swat team of doctors, psychologists, etc. and elevating what could be a one-off situation into something more sinister and chronic. This is one version of the hammer approach to problem solving that I discuss in more detail in this post.

My more pressing concern these past few months has been my own health, not Chris’s. Without getting too specific about the details, I moved to Florida from Europe, proud of the fact that at my age I was on no prescription drugs and taking only baby aspirin to prevent blood clots. I’ve had atrial fibrillation on and off for many years, but I’ve lived with it and never consulted a doctor about it. It hasn’t impeded my life so far. Exercise doesn’t leave me breathless. I’m not saying that A-fib never requires some form of attention, but the devil’s in the details.

In November, I went for my first physical here in Florida and it was like setting off a five alarm fire judging from the response to the taking of my pulse. (This was the first time that my A-fib had been “caught” in real time.) The panicked look on the medical assistant’s face was the first tip-off that A-fib was not okay. (I had always heard that it might be scary, but not life threatening.) The doctor arrived. He pooh poohed the baby aspirin, gave me free samples for an expensive anti-coagulant and set me up for an appointment with a cardiologist. “But,” I protested, “I’ve always had A-fib to some extent or another. I’ve lived with it.”

Fast forward to today. The two heart drugs tried so far have not stopped my A-fib, and I’m no longer feeling quite as perky as before because of the side effects. Furthermore, the medical reaction to my condition had added stress. The cardiologist is sending me to an electrophysiologist and there is talk of surgical intervention (ablation). To gain some reassurance that my concerns about unnecessary intervention are well founded, I’m listening to a Youtube doctor from the UK who takes a much more laid back, non-surgical, non-drug view of atrial fibrillation. I am trying a variety of ways to normalize the heartbeat (heart rate is down already) and plan to discuss my preferred approach with the specialist. I’ll shut up and not question the need for the prescribed anti-coagulant if the specialist will backpedal on the need for the surgery.

I now find myself in the position that people under psychiatric care are in: being encouraged to accept stronger intervention that perhaps can be best managed by holistic means outside of a doctor’s office.

Magnesium, anyone?

Independence Day

I dropped Chris off at his new apartment a few days ago where he’d stay for a couple of nights as he eases his way into full time independent living. He’d spent his first night there the week before. It didn’t all go as smoothly as I had hoped. Chris was in a foul mood, alternately blaming me for pushing him out the door at the last minute without adequate time to collect his thoughts or his belongings while giving all the impression of being eager to put as much distance between me and him as possible.

Dumping him at the apartment Saturday morning along with groceries for the week-end and then beating a hasty retreat after a shouting match about finding his door keys and his phone so that he could communicate with the outside world was not the way I had envisioned this auspicious day. In my mind I imagined warmly embracing him, both of us perhaps shedding a tear, and agreeing this day was long overdue.

I returned to the apartment a few hours later bearing the previous night’s dinner he could warm up. I saw that the groceries were still in their bags, the bed was unmade, and he had not managed to find his phone. We got into my car and drive back to my house (no longer his house) and ransacked the place looking for the phone which was nowhere to be found. I drove him back to his place and left him there to survive another night and day on his own. I’ll be there for Sunday night dinner, I promised. Pour a bottle of root beer over the pork and then plug in the crockpot for eight hours. That’s all you have to do.

Sunday night dinner was delicious and when I arrived, the place was spotless. Social services will eventually supply him with a house mate, but for the time being he is on his own.

He’ll make it work.

The 15 minute med check

After Chris’s psychiatric appointment was cancelled due to the doctor’s no show (see previous post) I marched up to the receptionist and demanded a new appointment –not two months from now, or even a month from now, but NOW!

Chris got an appointment for the following week. I accompanied him to the appointment as the doctor had encouraged him the first and only time he saw him to bring along his mother the next time. I came armed with the results of the neurofeedback brain mapping, hoping to get the doctor to request the insurance company to cover twenty sessions of neurofeedback.

Dr Jesus de N. was an avuncular man in his late fifties with (unsurprisingly) a Spanish accent. His friendly demeanor couldn’t warm up his office however, which had all the charm of an interrogation room. Three wooden chairs facing the desk, no artwork or personal momentos on display. I got the distinct vibe that the doctor didn’t occupy the space for very long and it was probably a shared arrangement. I waited while the doctor asked Chris to update him. Chris wandered all over the map, none of his utterings were connected to any point that I could discern. Now I know how logical Chris can be most of the time, but the doctor wouldn’t have a clue that the rambling person in front of him was fully capable of clarity. My interjecting to try to bring reason and linearity to the update and request a letter to the insurance company just made me look, well, illogical and rambling (schizophrenic). Like mother, like son, the doctor may have been thinking.

The doctor brought up the subject of meds and asked Chris where he was with his Abilify. In classic Chris fashion my son intuited that the doctor must want him to go back on the drug. It was hard to tell what Chris was saying but he seemed to be simultaneously telling the doctor that he was no longer on Abilify while teetering on the point of telling the doctor that he would be willing to go back on it! (He hates to disappoint.) I immediately jumped in and laid that one to rest. “Chris is off Abilify, has been off it since September, and he and I agree he’s doing just fine. He has no intention of going back on it.” (Remember, this is the doctor who suggested to Chris at his first appointment that he consider taking Abilify in long term injectable form.)

“So, what’s the purpose of this visit? We only have fifteen minutes,” said the doctor, not unkindly. “If Chris isn’t on meds then there’s no point is my seeing him. Our clinic can provide talk therapy if he wants it.”

If finally dawned on me. This wasn’t a fifty-five minute appointment. It was a fifteen minute med check. Why hadn’t Chris told me this after his first appointment? I wondered. For months I had been under the impression that Chris had spent an hour with the guy.

Our fifteen minutes was up. On our way home, Chris and I high fived each other on the outcome.

Freedom! Freedom! Letting go of psychiatry US style

Today’s vignette is not about the way letting go of psychiatry is supposed to work. Let me explain. Normally when people write about how they ended their relationship with psychiatry, they talk about how they made a conscious decision to just stop going to their appointments, maybe because they felt they no longer needed them or perhaps because they didn’t feel they were serving any useful function.

Chris has seen Jesus de N. (his psychiatrist) ONCE since we moved to Florida in August. Today he attempted a third try only to be told that the doctor had a problem with his car and would be late. Chris was prepared to wait until the doctor got there, but was told that he’d have to make a new appointment because the doctor would not be arriving any time soon. (This was the second time in a row that the doctor has cancelled.)

So, the question is, does Chris actually have a psychiatrist? I think not. He has a psychiatrist on paper, someone whose office he can phone to get a referral, someone who can satisfy our insurance company to continue to cover him, but this person is not someone he actually sees. He is free to do what he wants, unencumbered by psychiatry. This is brilliant! I’m surprised that more people who want to escape psychiatry’s clutches aren’t praising the system here in the United States. (Dr. Stern, Chris’s psychiatrist in Switzerland used to phone him if he missed an appointment or was late. She rescheduled any missed appointments for the same week. Not the case here. Here, it’s like the psychiatrist doesn’t think he needs to see his patients.)

Hallelujah brothers and sisters. Free at last!

Startling news

On Friday, Chris and I met with the director of the brainwave center to go over the results of the testing. To cut to the chase there is clear evidence of a brain trauma. According to the report we received, “Frontal, temporal motor strip and parietal dysregulation are consistent with his symptoms. These areas participate in the executive, default, and salience networks, which have been implicated with schizophrenia. The frontal lobes are involved in executive functioning, abstract thinking, expressive language, sequential planning, mood control and social skills. The temporal lobes are involved in auditory information processing, short-term memory, receptive language on the left and face recognition on the right.”

Evidence of a brain trauma in the left frontal lobe was surprising news to the director as both Chris and I had assured him that he has no history of a trauma.

“Oh, I guess I forgot to mention that when I was about age 30 I used to bang my head on the wall on occasion, and also, I got hit by a car when I was 24 and landed on the side of my head though my arm cushioned the fall.”

I was both dumbfounded by the news and totally embarrassed that we had failed to report any of this in our previous interviews. I did know of the car accident, but this was the first time I learned that he had hit his head in the accident. (His father took him right away to a nearby clinic and he was pronounced okay.) As for deliberately banging his head on a wall, well, how stupid is that?

The point is there is clear evidence of a head trauma as shown by the spectral analysis and topographic mapping. Chris’s alpha, beta, and high beta powers looked very good to the director.

Recommended treatment: Direct neurofeedback x 20 sessions with left frontal and motor strip emphasis.

Does neurofeedback work?


Eric Coates wrote an interesting piece on neurofeedback on the Mad in America website, Neurofeedback is Not for Everyone: The Dangers of Neurology   His experience with it and the subsequent comments on the article taught me what to look for in  finding a qualified practitioner for Chris. Not everyone who practices neurofeedback has the right credentials, as I learned at the first center that I called where no one on the staff had the critical letters after their name. The director of that center said that he was pulling together the right staff, but it was going to take time. There is a skills gap in making neurofeedback more available to the general public.

The Coates article was the catalyst for me to dig a bit further. Why had I not realized sooner that neurofeedback could be useful for someone with a diagnosis of schizophrenia? I accept that “schizophrenia” is a term that covers a variety of symptoms, making it a rather meaningless term. What is really at stake with “schizophrenia”, what prevents the person from forming meaningful relationships, working full-time, furthering their education, paying income tax, are the negative symptoms that affect motivation, energy, and logic. Focused listening, which Chris has been doing for the past year, has been very helpful in addressing some of the negative symptoms. I believe that doing it daily has enabled Chris to successfully get off his medication and demonstrate increased logic. However, his motor tics have not abated. They are a huge impediment to his moving forward. Part of me thinks that he can control the tics, but chooses not to when he’s around me, his way of expressing dissatisfaction with the status quo. It’s the motor tics that brought us to neurofeedback. 

Neurofeedback is a type of biofeedback where sensors are placed on the scalp to pick up real-time displays of brain activity to teach self-regulation of brain function. It strikes me that outside of research facilities neurofeedback therapists are concentrating their initial efforts on the large demographic of parents of school children who want their kids to succeed in school through greater focus and concentration. Like Tomatis Centers they promise improved attentiveness and impulse control; a decrease in hyperactivity; improved academic, athletic, and artistic performance. “Reduced extraneous movement” is one area that caught my attention. There is ongoing research into the effectiveness of neurofeedback for disorders such as autism, anxiety, depression, chronic pain, etc.

The staff at the next center whose website I looked at had the right credentials and the director had been working in neurofeedback for the past thirty years. Chris prepared for the first appointment by answering a lengthy questionnaire focusing on why he was seeking neurofeedback and what else he had tried in the past to alleviate his symptoms. The two of us put our heads together to tally the many treatments he had tried and articulate why further treatment was being sought. To be clear, the therapies he has tried to date were not directed at the motor tics per se, they were part of ongoing attempt to improve his logic, get off his medications, act “normal”, advocate for himself, etc. He e-mailed the questionnaire to the center and received back an on-line cognitive assessment which took about 20 minutes to complete. 

We met with the director of the center that same day. The staff person at the Center encouraged me to accompany Chris as I would have further useful information to contribute. 

“So, tell me why are you here?” he asked. I sat on my hands and kept my mouth shut, knowing that Chris would reveal all. Chris said that he had motor tics. If there were any doubts that Chris has motor tics, he quickly dispelled them. Throughout the interview he was flopping around on the couch like a newly caught fish on the bottom of a boat. “Are these the tics you are talking about?” asked the director at one point as Chris winced and wiggled. Anxiety, motor tics, schizophrenia, OCD, Tourettes, emotional lability, whatever it is that Chris is suffering from, it was all there on display. Chris rambled quite a bit, there was no coherent time line of events and a vast chasm between how he interpreted what happened to him and how I saw it. He said that he was first hospitalized at 18, whereupon I interjected to say that it no, it was at 20. When the doctor asked him what he felt contributed to his psychotic break, Chris pinned it firmly on his alcohol intake during his first year at college, and alluded to having a drinking problem that he believes has continued unabated to today. The director then started talking about addictions and I had to raise my finger as a point of interjection to keep him from heading down the wrong path.
 
“Chris, from what I’ve seen, you have no alcohol problem, unless you consider having an occasional glass of wine or a single beer an alcohol problem. If anything, I’d say you have a guilt problem and somehow has convinced yourself that you’re a semi alcoholic. You may have had too much beer during your first year at university, but who hasn’t done that? 

This is where Chris got angry and started to throw his father and me under the bus, alluding to OUR supposed alcohol problem. But, he quickly forgot where he was going with that and calmed down a bit. Had I not intervened, the doctor would have assumed that Chris has a drinking problem, which he patently does not. 

We limped through the rest of the interview. There was no logic on display. The story coming out of his mouth was not the story coming out of mine. I was totally confused trying to keep up with where Chris was going. The two of us presented an emotionally wrought, confusing narrative. We were pathetic. I did learn one thing though. Chris told the director that he hasn’t been on medications since September, to which the director nodded approvingly. “We can get a much clearer picture of what’s going on with your brain,” he said.

“So when he was hospitalized the second time, what do you think was the reason?” the director asked me. I said that in retrospect I first believed that we were trying to push him back to college and he didn’t want to go, then I said that with the passing years and further reflection, I began to think that the supplements he was on were good but not good enough to keep him from relapse, then I said that from the vantage point of even more passing years, it’s anyone’s guess as to what was happening. The correct answer, I assume, the one the director would say, is that his brain waves are stuck in an abnormal feedback loop and he hadn’t learned how to control them.

Reconfiguring your brainwaves for optimal mental and emotional health sounds plausible to me, but is it just another therapy that makes intuitive sense but doesn’t really work well enough for most people in practice? On the other hand (and this is important, so listen up), why should Chris or I care about how it works for most people? it really only needs to work for HIM. I’ve heard people say that they overcame their afflictions (let’s assume it always related to a lack of focus) through niacin therapy, through psychotherapy, through Focused Listening (Tomatis therapy) through the power of love, through Bible reading. For example, years ago I increased my focus big time through niacin therapy, but when I recently tried Lions Mane and niacin hoping for even more, nothing happened. Perhaps the niacin therapy I did years ago set me up for life. Similarly, through listening to high frequency mostly Mozart violin concertos, I stopped a lifelong nail biting habit. That was a visible expression of any anxiety that my body and mind were dealing with, but I had no idea that Focused Listening would fix it.  

I always hope that the latest treatment tried will be the last treatment tried because it delivers on the promise. 

More to come on neurofeedback. Stay tuned.

You might also enjoying watching Dr. Daniel Amen on the most important lesson learned from 83,000 brain scans

Is neurofeedback the future of psychiatry?

It’s nice to be back to some semblance of a routine after the holidays. I had back-to-back houseguests, twelve in all if you include my husband and two younger sons who flew over from Europe. No time to even think about a blog post until now.

The guests have gone home and the glass ornaments has been put away till next year, so here’s an update of what’s been happening. Chris is seeing a psychologist for his motor tics in addition to the psychiatrist who seems to there as a placeholder only. So far, Chris has had only one appointment with him. Chris’s first and last appointment was in October. The next one is for the end of February. This is managed care, I guess. I’m not actually complaining, as the lack of attention can work in the client’s favor. The client should feel liberated enough to manage his own care. That’s my spin on it, anyway. Or, maybe his psychiatrist is busy studying neurofeedback. More about that later.

Military language seems to have made steady inroads into everyday American life over the past few years. My husband and I noted that our visits to our new family doctor are considered “encounters” according to the printed reports that we are given on leaving the clinic. “Do you think, though, if we called the office asking for an “encounter” they’d understand what we mean?” he asked rhetorically. We’ve been hearing a lot of late about government workers being “furloughed,” rather than being “sent home.” My reminder that an automatic bill payment  was going to be “drafted” from my account was mind bender. Had to read and reread it several times before realizing that my account was going to be debited. In banking terms “draft” to me means to prepare a cheque, not to take money out of the account.

Chris is enjoying his new recovery program, which is a privately funded vocational training center. The vocational part is helping people with Chris’s diagnosis gain skills needed for entry level jobs in the service industry. The staff doesn’t put a cap on their expectations as to what someone is capable of achieving with their life, but the idea is to start slow and gain confidence. Chris has been going most days and often comes home dead tired. Good. It’s about time. He seems to be getting by on very little to no medication. He’s got traction under his feet. . . .  

. . .  if it weren’t for the motor tics that continue to plague him. The next stop for us is NEUROFEEDBACK which promises great things – a cure for all kinds of issues that make concentration and focus difficult. It works on PSTD, OCD, Tourettes, bipolar, disorder, schizophrenia, depression, etc. Neurofeedback talks a good game. If we believe the promise, it is the future of psychiatry and will turn psychiatrists into neurologists. It will complement the work Chris has been doing with Focused Listening. We’ll see how far he can run with it. 

Glitches

There were several comments to my last blog post that wound up in my Feedback tab and I can’t figure out how to get them out of there. I’m being given two choices: Mark them as SPAM  or mark them as TRASH. For the life of me I can’t figure out how to mark them as VALID COMMENTS.  My apologies to those of you who took the time to comment and are wondering why they didn’t get posted.