Stop insisting that people with schizophrenia take their medication (or else!)

Best selling author Pete Earley reposted a recent New Yorker article written by a woman who lost her brother to homeless and then to suicide. It’s a familiar (and very sad) story that echoes the heartache that families encounter trying to figure out how to help our relatives and coming up short most of the time. I followed Pete over to his Facebook page and left the following comment:

Rossa Forbes What if, rather than kicking his son out of the house because he wouldn’t take his medication (and therefore precipating his long spiral into homeless and death) the father in this article had taken a different tack by siding with his son? Yes, Taking His Side by researching what the medications do, how efficacious they are, and finding out why people don’t like to take these drugs. Then, he could have said, “I understand the way you feel, and let’s try some alternatives first, of your choosing. I don’t like these medications, either, but at the very least, if, in the end, you agree to take a single medication, I will make sure that it is at the lowest dose possible. I will become your ally, not your adversary.” The author has got it right when she complains about the fact that educating ourselves doesn’t necessarily result in better outcomes: “In our family, we did all of this, and more—we took classes, consulted experts, conferred with lawyers, and met with people with schizophrenia who had rebuilt their lives. But applying what we learned was rarely simple. Though our efforts often helped us enormously, they did not, in the end, do much for Tom. I wonder, still, what could have saved him.” Had her brother an ally in a close relative who was willing to work with him (as difficult as these things are), much of the misery he was in could have been avoided. I say this as a mother of a young man with a diagnosis of schizophrenia, whom we kept at home probably far too long for his own good, and it was a strain, to say the least, but at least we knew where he was and we could work at building better communication skills and becoming allies. Rossa Forbes, author, The Scenic Route: A Way through Madness

Neurofeedback continues

We met with the neurofeedback specialist at the end of April to see how Chris’s brain mapping results looked now after he had undergone twenty neurofeedback sessions. As I expected, the results were good. His delta and theta absolute power readings in the Z scored FFT Summary Information sheet were now uniformly green instead of blighted by the occasional red mass. This looked like a good thing, and the specialist assured us that indeed it was. My son had improved in all functional areas and particularly in the critical pre-frontal cortex.

If you can understand the technical stuff that I just wrote, you are well ahead of me. I take it on faith from the impressive brain science jargon that neurofeedback can beneficially modify brain wave patterns. Does neurofeedback achieve the results it promises? I’ve no idea.

I do know that the neurofeedback specialist and I agreed that Chris was speaking more conversationally and on track than when he started the sessions. What I don’t know is if that is the results of neurofeedback or Chris feeling more relaxed with the man, or whether it was due to the many other things that are going on in his life right now, such as living on his own for the first time and having to get himself up in the morning and go to his vocational program.

Chris felt that much of the neurofeedback mimicked what he was doing in Focused Listening and what he understands about Rife frequencies. I can’t address that from a neurofeedback perspective but I’ll take his word for it. I do know from my own experience with Focused Listening how beneficial it has been for me. The key to logic and relaxation seems to be listening to high frequency sounds. In Rife frequencies, 528 herz is sometimes called the Cure-all frequency. Focused Listening emphasizes Mozart violin concertos (whch are in the 528 herz range). Neurofeedback frequencies are tailored to the individual’s actual brain wave patterns, which can be seen on the computer screen. I have no idea what the actual frequencies, in Chris’s case, are.

So, what was the outcome of the meeting with the neurofeedback specialist? Chris signed up for ten more sessions. He’ll be done by the end of July.

Information, not ablation

Ablation: A relatively new procedure that scars or destroys tissue in the heart with the aim of getting the heart to beat normally.

The doctor I consulted last week specializes in ablations. My cardiologist referred me to him because the heart medication wasn’t working to control my atrial fibrillation.

I wasn’t there that day because I wanted an ablation. I wanted more information about how I could fix my atrial fibrillation (A-fib) naturally, but I knew that I wouldn’t get that information from him. I had gotten that information myself and was hoping that taking cell ready liquid magnesium and other mineral supplements, listening to high frequency music, and correcting my breathing patterns over the past couple of months had put my heart in sinus rhythm.

The TV on the wall in the waiting room broadcast eerie warnings about all the possible things that can go wrong with your heart, no doubt a deliberate strategy to scare the bejeezus out of us sheeples so that ablation looks like the only solution.

After my name was called and I shuffled into the consultation room, the nurse sat me down and asked a few questions about my medication history. I told her the side effects to my heart medication were intolerable and I wanted off! She agreed that the drug should be dropped. I noticed a cardboard sign on the counter opposite us illustrating what dead arteries look like. I excused myself, got up off my chair and walked over to turn the picture to the wall. “Gee, said the nurse, “I had thought about removing it because we don’t deal with artery disease here.” (I couldn’t help noticing that the only pamphlet in the room was a glossy brochure on why you need an ablation. Continue to ramp up the fear, why don’t you?)

Next, the ECG. To my immense relief, I was in normal heart rhythm. I haven’t had a normal rhythm detected in a doctor’s office since one was last heard in December. I may still have A-fib, it’s just that it now it appears that I no longer have persistent A-fib. I’ll take that.

Now, if I was expecting this new doctor to talk to me about natural means of eliminating my A-fib I would be incredibly naive and misinformed about what a heart rhythm specialist in Florida actually does and how much he earns doing it. The top heart rhythm specialists (electrophysiologists) can make more than $600,000 a year, way more than even what cardiologists earn here. I’m guessing the doctor I was about to see earns well over a gazillion dollars per year because there are lots of us old folk in Florida who have arrythmias. We’re easy pickin’s.

Getting a second opinion from an MD in Florida strikes me as a waste of time. I had done my some of my ablation homework by searching for second opinions from YouTube cardiologists about what atrial fibrillation is and why ablation should be avoided. (Don’t let your doctor tell you otherwise: YouTube is a great source for medical second opinions.) What I learned from YouTube about ablation is this:

The operation is successful in about 30-60% of cases. Many people have to keep having them done and of course, it is a surgical procedure that carries its own risks. You should only consider ablation if you feel that your quality of life is impaired, for example, maybe you’re an athlete who doesn’t like getting winded or maybe you’re a sedentary type but having trouble doing even small amounts of physical activity. It’s not for people like me who are able to live with it. Better yet, rather than just living with it or going for the surgical option, why not first investigate the miracle of liquid magnesium? As ablation is a relatively new procedure, not much is known about what can happen to your heart down the road because of the procedure. You still need to take an anticoagulant even if your ablation is successful. Just because you have no more heart arrhythmia does not mean that your risk of stroke has diminished. Strokes are fellow travellers with A-fib but A-fib does not cause strokes, as my favorite YouTube cardiologist explained. You need an anticoagulant to mitigate against strokes, not an ablation.

I also learned from YouTube that A-fib can be minimized and even eliminated using natural means. The benefits of cell ready liquid magnesium are touted,** the desirability of losing weight if you are overweight, fixing any sleep apnea, cutting back on coffee and alcohol, destressing your life, etc. And, most critically, you don’t need an ablation if A-fib doesn’t bother you.

The doctor I was about to see makes his living by telling you that A-fib is a problem, and he can do something about it. Here we should all pause for a moment: Remember the enthusiasm for lobotomies back in the 1940s and 1950s where connections were severed in the prefrontal cortex of the brain in an effort to control mental illness? How well did that experiment turn out?

There was a quick knock on the door and the high earning specialist entered the room. We shook hands, exchange some pleasantries, and got down to business. I had about fifteen minutes to find a drugless way forward.

Right away he said that I could drop the heart drug I’m currently on. (Strange that even though the ECG reading was normal for the first time in months the doctor didn’t claim that the heart drug was now suddenly working. If there was another explanation for why I was in sinus rhythm, he wasn’t curious to know.) I briefly started talking about the magnesium effect, but he wasn’t listening. He had whipped out a pen and notepad and began drawing an electrical storm of misfiring atria while enthusiastically writing down and circling the names of the drug possibilities I could take to control the A-fib. No talk of ablation but also no talk of natural means. He was fixated on the drugs of which there were about seven. He mentioned a “pill in a pocket”, something I could take as needed when my A-fib kicked up. “Okay, I’ll take that one,” I said, not that I was planning on using it. He promised to phone my prescription in to the pharmacy. End of appointment.

On my way out the door he asked if he could give me more information on ablation, evidently hoping that I might reconsider. I said I’d be willing to consider having the procedure done if I felt that my quality of life was becoming impeded. “What are the chances that the procedure would actually be successful in my case?” I asked playfully. (I knew the answer.) Funny, but I don’t remember his answer. I think he laughed, but I’m not sure.

If you’ve read all the way through to this point, you may be wondering what on earth this has to do with my usual theme of schizophrenia. My point is this: How would someone half my age with a diagnosed mental health problem be able to do the amount of homework that is needed to be an effective self-advocate, let alone make himself understood in a fifteen minute med check?

Fifteen minute med checks are a danger ground.

*The usual disclaimer: I am not a doctor and what I am writing should not be construed as medical advice. I specialize in opinions only. Do your homework. Form your own opinions.*

**See Dr. Carolyn Dean, MD, ND

Schizophrenia and gluten

BEYOND THE GUT: THE RELATIONSHIP BETWEEN GLUTEN, PSYCHOSIS, AND SCHIZOPHRENIA

May 16, 2018 Gluten, Psychosis, Schizophrenia

JAMES GREENBLATT, MD & DESIREE DELANE, MS

INTRODUCTION

The National Institutes for Mental Health provide a succinct definition for schizophrenia as periods of psychosis characterized by disturbances in thought and perception and disconnections from reality; however, diagnosis is much less straightforward. Schizophrenia represents a wide illness spectrum with symptomatic features and severity ranging from odd behavior to paranoia. With a prevalence rate over the past century holding steady at 1% worldwide and immovably poor patient outcomes, schizophrenia delivers profound relational and societal burdens, proving to be a complex clinical challenge and an unyielding epidemiological obstacle.

GLUTEN AS A TRIGGER FOR PSYCHOSIS

Although the role of food hypersensitivities in disease pathologies is highly controversial in the medical community, many recognize a parallel rise with dietary evolution in modern history. Major shifts from ancestral diets largely absent of wheat or dairy to one with these as foundational components generate reasonable arguments on their implications for human health. Industrialized food systems that streamline the way foods are grown, processed, and stored are often charged with altering their very nature down to its most infinitesimal molecules. Yet, despite their diminutive size, micronutrients from food are essential to the complex processes and interactions that represent optimal health.

Intolerance to gluten represents one of the most prominent food hypersensitivities arising in recent history, delivering profound impacts to both physical and mental health. As the most severe reaction to gluten, Celiac Disease (CD) affects a growing population of men and women READ MORE

My guest post at Virgil Stucker and Associates

Mothers, Fathers, and Others

May 15, 2019

Guest post: Rossa Forbes

I’ve been doing all right when it comes to being a supportive mom of an adult son with a schizophrenia diagnosis. I am his life coach, his cheerleader, and his 24/7 shrink. Outside of the home, I try to put a positive face on schizophrenia because I

believe it needs an image make-over and also because I do see a lot of positives in a condition when the world all around me often doesn’t.

I regularly remind myself that in order for someone to gain this label they’ve got to be a pretty thoughtful and generous person to begin with, okay, maybe a tad too thoughtful and a tad too generous to survive in sales, probably too religiously obsessed to even qualify as a preacher, too philosophical and/or poetic to ever work at being a philosopher or a poet, and too generous with their possessions to ever accumulate much in the way of worldly goods. What a wonderful human being my son with all of these traits is.

There’s another aging side of me that increasingly lacked the energy to keep up this degree of cheerful commitment to my son. He’d been living at home READ MORE

Too much going on now to write about properly

Since Ian retired at the end of March and arrived home in Florida a couple of weeks ago after eight months away, I’ve had my hands full adjusting to our new retired normal. Thankfully, Chris is out of the house and living on his own so there is one less personality to deal with on a daily basis. (Insert emoji smiley face.) The last few weeks have been days filled with administrative tasks involved in “hubby’s” transition from work to retirement. He’s making “helpful” suggestions to add to my growing to-do list. Grrr. He wants everything done now!

Tomorrow afternoon we’ll get the results of Chris’s second brain mapping at the neurofeedback center. We’ll find out what has changed after his undergoing twenty neurofeedback sessions.

Did I tell you that Chris has also been sleeping under a weighted blanket for the past few weeks? He loves it! I got the idea from an article that Ian sent me about a woman who mistakenly purchased a weighted blanket on Amazon, and slept through the night for the first time in a long time. These blankets have been used in the autism community for years. Amongst other things the blankets stimulate the release of serotonin to alleviate the effects of many anxiety related conditions. He does seem less anxious. Is this the effect of the neurofeedback? Or is it because he’s more and more on his own and no longer being nagged at by me? Or is it that he’s back on 1 ml of Abilify?

I may have fixed my A-fib using natural methods. I won’t say anything more about this until after my appointment with the electrophysiologist later this month. I seem to have gotten my heart rate under control, but will need ECG results to know if the heart rate variability has improved. Too soon to cry victory.

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.