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. 

Dialling in on medical

Now that Chris and I have lived in Florida for a few months I’ve had a glimpse of the way the health system operates here, which, not surprisingly, caters to old folks, of which Florida has lots. Many of them are relatively affluent to truly rich, but not to be forgotten is that Medicare is available to those over 65.  Ergo, there are tons of medical facilities here.

Some old people like to talk about their medical problems, many to the point where other people’s eyes glaze over. (Not a good thing to do around the kids if you want to appear youthful.) In Florida, you can spend your whole day indulging in this pastime because of the demographics. When conversation veers this way I call it “dialling in on medical.” So, where am I going with this? Well, much as I dislike discussing my own health (but don’t mind discussing Chris’s, lol) I can see that navigating much of life here requires a certain attention to the medical.

My post today is what can happen when people move between systems. In Europe, I was on no prescription drugs (with the specialist’s blessings). Apparently, I didn’t have a big enough heart problem or else my atrial fibrillation (A-fib in US speak) was considered minor. I was advised that I could get by on a daily baby aspirin. “Now that we’ve plugged the hole in your heart you’re fine and no need to see a cardiologist was the gist of my send-off.

Today, barely three months into living in Florida, I find myself on two prescription drugs and I have a cardiologist. My A-fib (which I’ve had all my life and is as much a part of me as the freckles on my arms) set off alarm bells at the GP’s office when I went in for a check-up. “But I’m on baby aspirin to prevent strokes and heart attacks,” I protested, “and the Swiss cardiologist didn’t think my A-fib was a problem!” Baby aspirin, the doctor replied, isn’t effective enough.  This was news to me, and probably to all those people who are on baby aspirins for the same reason I am. He left the room and returned with three boxes of sample anticoagulants. “They’re very expensive,” he said, “so this’ll tide you over until you see the cardiologist,” which turned out to be the following week.

“You’ve got A-fib,” said the cardiologist after reviewing my records, “and your heart rate is too high right now.” After arguing back and forth a bit with her I wasn’t about to ignore her advice and bravely forge ahead on a baby aspirin, but I still can’t figure out why I can’t just ditch the expensive prescription anticoagulant (twice a day which means a refill twice as fast) in favor of the once a day baby aspirin and the virtue of being on one less prescription med. Well, maybe I can figure this out. Am I being too cynical?

Chris had his own encounter with the long arms of pharma. His new psychiatrist suggested to him at their first meeting back in October that he consider going on injectable Abilify. When I heard this I hit the roof. Injectable Abilify? What the hell did the doctor think he was doing by suggesting to a patient on the first visit, a person who appears “relatively normal” on very little liquid Abilify, that he up his dose and lock himself into perpetual patienthood? Chris told the doctor he would think about it. What have I been doing wrong all these years that Chris would even suggest to a doctor that he would “think about” being locked into something that he is pretty much off of? There are several reasons I can imagine why Chris said it, and only one reason I can think of why the doctor suggested it.

No escape from being on a prescription here is the conclusion one might draw.

Come to Jesus

I’ve been busy transitioning to Florida starting in early August. Apart from buying a new car, finding a family doctor, camping with a cooler in my own home because the fridge died, setting up new accounts everywhere, I’ve also had my first experience in the United States with buying prescription drugs (in this case Abilify) and trying to find an “open-minded” psychiatrist, meaning one who is willing to respect the current low dose of medication my son is on and to collaborate with Chris in an eventual tapering program.

I can’t say I was shocked at the price that the pharmacies here bill the insurance company because I knew that prescription drug prices in the United States are astronomically high compared to most other countries, but when you come face to face with it, that’s another story. Ouch. The first time Chris attempted to pick up his Abilify prescription, he realized that the doctor had ordered the tablet form of Abilify. $1800! I heard the pharmacy clerk whisper to her co-worker.

What? $1800 for presumably a 30 day supply that costs the equivalent of  $120.00 in Switzerland?

Once Chris clarified his need for liquid Abilify with the doctor, we went back to the pharmacy and I heard the pharmacist whisper “$500.” Well, that’s not so bad, I thought, although it seemed a bit strange that the liquid was cheaper than the tablet form.

Then I saw the bottle. The measly 30 ml supply of liquid Abilify cost $30. A 150 ml bottle costs the equivalent of $200 in Switzerland. Doing the math, 1 ml of liquid Abilify costs $16.66 in the US and $1.33 in Switzerland.

“Do you want us to put you on automatic monthly refill?” the clerk asked Chris.

“No, no, no!” I frantically signaled to him from where I was sitting, lest he cave, which he has a habit of doing. Obviously, the clerk isn’t clued into the fact that Chris doesn’t take it as it’s prescribed. That’s the same challenge he’s going to have to put to a psychiatrist. He doesn’t take it as prescribed, which is the beauty of liquid Abilify, the flexibility inherent in an easily titratrable form. We left CVS with the prescription filled and no money forked over.

The psychiatrist recommended by the family doctor isn’t taking on new patients, I found out. Now I was on my own, with no recommendation at all, so I started calling around. I was told that my best bet was at a behavioral health center. I found one near our home and phoned for an appointment. Had to leave a message on the answering machine. No one called back. I thought about just driving over and asking for an appointment, but that would be too simple, and was obviously the wrong approach to take in these matters. A human to human interaction when booking an appointment  is so passé. I was learning. I went to the company’s website, filled out a  message form involving no more than 220 characters, and hit “send”. Continue reading “Come to Jesus”

Shamanism and the Evolutionary Origins of Schizophrenia

Enjoy this 2013 presentation by Joseph Polimeni, MD on his theory about why schizophrenia (and bipolar disorder) persists over time.

In my next post, I interview Dr Polimeni about his book,
Shamans Among Us: Schizophrenia, Shamanism and the Evolutionary Origins of Religion.

As long as it takes and it takes a long time

After a two year psychiatrist interruptis, I have scheduled a family meeting in late June with Dr. Stern, Chris’s psychiatrist. I have been blissfully happy during this time NOT retraumatizing myself through regular meetings like we used to have.  I booked this meeting by mistake, actually, thinking that it was Dr. Stern who wanted one, and it turns out I misunderstood something Chris said. Be that as it may, Ian and I will be there, and so will Chris’s occupational therapist. And, Chris, of course.

Reality check. Chris has received way more therapy than a lot of people get, and, at age 28, he’s still not in a position to live independently. It has only been in the past year that he has developed a proactive interest in vocal performance. Recently he has taken on some occasional part time work helping an entrepreneur with an Internet start-up. He’s doing the work from home and he is conscientious about doing a good job.

What does it take to fully reconstruct a personality? A lot of time as I have learned. I don’t think everybody needs to see a psychiatrist as much as Chris does, but I’m not against it as long as Chris feels he is getting something out of it. This year, apparently, he feels he is. It has taken many years to get to this point.

Psychiatry should not be the only tool – it should be one of many. I shouldn’t have to sneak around behind Dr. Stern’s back getting additional help for Chris, and that’s what I’ve had to do on several occasions. Psychiatry should not stand in the way of meditation, yoga, martial arts, hypnosis, sound therapy – or any other practice, discipline or therapy that helps a person to integrate the body with the mind. But, if my experience is typical of the experience of others, we are told that these kinds of activities may “destabilize” the person and this is the reason our requests are denied. This is the psychiatrist insisting on control. In my experience what does destabilize a person is high expressed emotion. “Constructive” criticism coming at the wrong time is still criticism. Conveying a sense of worry about the situation can be interpreted as a lack of hope, etc. There can be many reasons a person relapses, and it takes a while to sort it all out without jumping to the wrong conclusions.

Time to practice what I preach

The teenage son of a colleague of mine has just been committed to a psychiatric hospital. He’s fourteen years old. He’s been receiving psychiatric help for years, but the situation was taking a new turn and becoming dangerous. His father feels all the psychiatry his son has had to date hasn’t prevented what is happening now.

Here’s an excellent opportunity for me to rush in and give my friend the benefit of all my experience, and yet, I don’t. At least, I don’t very much.

My advice wouldn’t be understood because it’s too soon for most people in crisis mode to absorb its simple and, at the same time, complicated message. Mental illness is so personal that it seems that nobody else can possibly have the answers for your own relative. And, of course that’s true to some extent. It seems all of us are fated to learn about how to get over mental illness the hard way.

It shouldn’t have to be this hard, but it is, because, unfortunately, most psychiatrists aren’t willing to embrace alternatives. Right now my friend’s son is in isolation, so early empathetic intervention à la Soteria or Open Dialogue isn’t being considered. Even if it’s not Soteria, doctors should get in there early and tell the parents it’s their job to be non-judgmental, low expressed emotion and unafraid. They should but they don’t. As long as the parents are scared stiff and worried, doctors can count on being in control.

In our own case, Chris’s psychiatrists have, at various times, rejected vitamins, second opinions, sound therapy, and ideas coming from us. Had Chris’s psychiatrist known about the Assemblage Point shift, well, I never even proposed it because I knew it would be rejected.  Most psychiatrists, even the ones I think have been helpful for Chris, don’t appreciate hearing about add-on therapies. I can understand that to a point. But it often looks more like they want to control the entire process, even if it means that recovery will never happen or be delayed.

So, what did I say to my colleague? Not much, but I tried to interject optimism and a positive attitude about his son’s future. I suggested that psychiatrists don’t have most of the answers and a healthy amount of skepticism is needed. I mentioned that the Internet is full of different views about mental health. It’s far too early to confide in him that one of the best therapies for Chris was for his parents to decide to change the family dynamics by changing ourselves, rather than our thinking that Chris was the problem in need of changing.

It’s too bad that psychiatry doesn’t share these insights with the family. If it did, recovery would be quicker than it actually is.

Medications and power

When Ian and I met with Dr. Stern earlier this month we urged her to take Chris off Serdolect and not to substitute another antipsychotic. For once, even Ian was on my side about the Serdolect after we realized that it can lead to sudden cardiac arrest. Somehow, Dr. X at the psychiatric hospital had “forgotten” to tell us about this particular side effect, probably because he had finally managed to get me to shut up about his adding a second medication on top of the Abilify. It was only after Chris went for an ECG that it dawned on me why he was having one in the first place. I didn’t bother researching Serdolect’s particular drawback because all antipsychotics have side effects (at least this one wasn’t clozapine) and I am sick and tired of continually being on the offensive with the doctors and being on the opposite side of Ian.

I feel that with the subsequent interventions that Chris has undertaken since leaving the hospital in May (Tomatis Therapy and Sound Therapy) he has a better grip on reality and will be in stronger position than before to get off these stupid medications once and for all. He also has to be in a stronger position to make his own case with Dr. Stern. I really hate having a psychiatrist involved in what I consider our “family business,” meaning Chris, Ian and I coming up with our own agreed strategy. If there were no prescription medications involved, we would only be needing Dr. Stern to act as a counselor. Prescription medications means a psychiatrist has to be involved. The psychiatrist then has gained enormous power over the decision making of the patient and family. I forgot to add that there is a second psychiatrist involved who I haven’t met – the whom who prescribes the medications. This is an arrangement that we agreed upon with Dr. Stern so that she can meet with Chris without medications being the main topic of discussion. Where there is a psychiatrist, there is medication, however, because Dr. Stern needs to confer with the second psychiatrist about them.

If I think too much about this and actively intervene, I’ll be headed for another round of sleepless nights. My new strategy is to trust Dr. Stern to do the right thing with Chris’s fully informed consent. Dr. Stern has been remarkably open to listening to us in the past and has professed a desire to see Chris off the medications “at some point.” The point where that “some point” is located is of course up to debate.

Some sing low and some sing higher

I continue to mull over the events of the last few days. Chris and I both underwent sound therapy last Thursday, but my experience wasn’t nearly so dramatic. I could tell from the new way the sound was mixed, that I was being coaxed towards a deep meditative state. I almost got there, I could see how close I was to leaving my earthly baggage behind, but I got scared and refused to go any further. Maybe next time. Probably next time. I see the logic of release.

Recalling Dr. Stern’s clear alarm about Chris’s out-of-body experience and lucid dreaming, I have to smile. While I fumbled around to try to convince her that this was an all round good experience, I brought up the fact that Chris was also in the church choir, which so far nobody has questioned as being detrimental to his mental health. I told Dr. Stern that high church music whips people into a passion of ecstasy and abandonment to the Holy Spirit. This seems to me to be the opposite of grounding. “You know, Dr. Stern, I always say that the closer to the altar you get, the higher strung the people are. Who’s closest to the altar? The priest, the rabbi or the minister and the choir. In my experience, there is a higher proportion of “not regular folk” in this population compared to the population at large. I sometimes think it would be a good idea if Chris had more opportunities to split rocks and less time to spend hanging around the choir. ”

Dr. Stern looked rather stunned at my layman’s view of things. But think of it. In many ways it might be a good idea if Chris didn’t spend so much time hanging around the church, reading his Bible, and wearing choir robes. It mimics the psychotic behavior that we are trying to eliminate. Going to church may exacerbate mental illness!

I am not about to suggest to Chris that he drop choir, as it’s the first activity that he chose to resume after he got out of hospital. Playing the ball as it lies I assume that choir must be good for Chris, despite all of the reservations I have expressed. He is who he is, and he’s all about music. The church choir is a counter-intuitive activity to engage in, just as having an out-of-body experience is counter-intuitive to becoming grounded as most of us understand the concept – More African drums – less Mozart! Maybe, there is another way to look at it. Maybe we have been looking in all the wrong places, telling people to do certain things for good mental health, when we should have been telling them the opposite. I recently heard about a study on sugar’s effect on children, and guess what – the study concluded that sugar does not increase hyperactivity in children. I give up. How does anyone know what to do for good health when faced with contradictory evidence?

You go with your intuition and ignore all the noise.