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