America’s medicated adults

I am a cynic when it comes to children’s charities. I have stopped even thinking of donating to a charity that uses children to pull at the purse strings of the donor. Just the other day at a famous coffee shop, right by the cash, was a box that said something to the effect, “children – donate”. Sure, there was some worthy cause connected to it, but not a lot of information about what you were donating to and why. It was felt that simply putting “child” on the label was enough to part you from your spare change.

So, when it comes to the overmedication of the children, permit me to be just a tiny bit cynical. Not for the reasons you are thinking. It is horribly wrong to stuff children full of unproven psychiatric drugs for dubious diagnoses. But, are we overlooking that is is just as wrong to stuff adults full of these same unproven drugs for dubious diagnoses? Why is a 17 year old a child and an 18 year old an adult when it comes to bad medication and lack of access to more effective non-drug interventions? Let’s not let the wholesale assault on adults go unlamented. If it’s wrong for children, it’s wrong for adults.

I will continue to ignore charities “for the kids”, because I know that child poverty is adult poverty – just a fancy way of diverting your attention from the totality of the problem.

Cold turkey

Just back from a meeting with three psychiatrists. In the room were me, Chris, Ian, Chris’s psychotherapist, Chris’s medication doctor and her boss. I was looking forward to the meeting as a chance to move forward, to congratulate ourselves somewhat on things to date, until Chris let it out this morning before I left for work that he actually had stopped taking his medication a few days ago. A few days ago? How many days ago? This he wouldn’t say. Just dropped them cold turkey.

I saw this meeting going down the tube fast. “Chris,” I snarled, “get down to the pharmacy when it opens eight minutes from now and get that prescription filled.” Of course, he didn’t know where the prescription was, but luckily the pharmacist is okay with filling it first and bringing the prescription later.

What was Chris thinking? He is so close to shedding at least one of the drugs and possibly one psychiatrist if the meeting went well, why would he risk it all by showing up with a chance of looking and acting peculiar? As it turned out, Chris and Dr. Stern were there when I arrived at the clinic. I don’t know if she suspected anything. Chris looked kind of red around the gills but that was all.

The meeting was fine. At some point Chris offered up that he had not taken his medication, he claimed it was only for four days, but I have my doubts as I seem to be spending more time recently having these quiet “talks” with him. I got to say my piece about the meds. I decided in advance that I wasn’t going to debate the merits of Serdolect versus any other drug, I was simply going to “appeal” to their more noble selves by saying that Chris was spending too much time being a patient, and therefore not moving forward as much as he could and should. Having to schedule an ECG because of the Serdolect keeps him a patient, but so does seeing so many psychiatrists, no offense, of course! I told them that I personally don’t believe that two drugs are better than one, and that the reason Chris is on two is simply because the institution believes in two.

The chief psychiatrist picked up on Chris’s “forgetting” his meds and asked him if this was his way of saying he wanted off them. We chased that around a bit, and the upshot is that the chief said that cutting it down to one drug is in the realm of possibility. Dr. Stern had rather cleverly introduced the idea that Chris, in addition to gaining weight, was often tired. That may seal the fate of the Serdolect.

There is one thing that the chief psychiatrist said that rankled. He referred to Chris’s “disease”. However, here’s the good part. He said that Chris “had” a disease, using the past tense. This was sounding more like disease as metaphor to me. Ian picked up on this and his parting words to the psychiatrist was that he was glad to see that he used the past tense, because at least as far as Ian was concerned, Chris’s real problems were in the past.

The fall-out from Dr. Nancy C. Andreasen’s bombshell

From an interview with well-known neuroscientist and psychiatrist Dr. Nancy Andreasen which appeared in Sept. 2008 in the New York Times:

Q. AND WHAT HAVE YOU FOUND?

A. I haven’t published this yet. But I have spoken about it in public lectures. The big finding is that people with schizophrenia are losing brain tissue at a more rapid rate than healthy people of comparable age. Some are losing as much as 1 percent per year. That’s an awful lot over an 18-year period. And then we’re trying to figure out why. Another thing we’ve discovered is that the more drugs you’ve been given, the more brain tissue you lose.

Q. WHAT EACTLY DO THESE DRUGS DO?

A. They block basal ganglia activity. The prefrontal cortex doesn’t get the input it needs and is being shut down by drugs. That reduces the psychotic symptoms. It also causes the prefrontal cortex to slowly atrophy.

Q. WHAT ARE THE POLICY IMPLICATIONS OF THIS FINDING?

A. Implication 1: that these drugs have to be used at the lowest possible dose, which often doesn’t happen now. There’s huge economic pressure to medicate patients very rapidly and to get them out of the hospital right away. Implication 2: we need to find other drugs that work on other systems and parts of the brain. Implication 3: whatever medications we use need to be combined with more nonmedication-oriented treatments, like cognitive or social therapies.

Where do we go from here? Dr. Andreasen, by her own admission, sat on her findings for two years. Findings, might I add, the substance of which consumers have been complaining about for years. Our opinion, of course, is considered “anecdote” by people smarter than we are, such as Dr. Andreasen. I can quibble about her findings, because there is also something called the “plastic brain” which is a concept that wasn’t in much vogue a decade ago. The plastic brain, unlike the brain set in concrete, is adaptive and will find solutions and neuronal pathways around problems.

If Dr. Andreasen’s research will stick for the next decade or so until it is overthrown by yet another biochemical explanation for mental illness, then the service she has provided is that she has armed you with “scientific information” from a well-know U.S. researcher that you can take to your doctor and demand either no drugs and better alternative treatments to help you through this, or else medications only for the period of crisis and in low doses.

The Bonkers Institute for Nearly Genuine Resarch provides a look at the drug-addled schizophrenic brain. Before you feel like ending it all when you see this image, keep in mind that the brain is plastic and that science is unreliable.

Downsizing

In the interests of distancing Chris and his parents from becoming permanent patients of the mental health industry, I am in discussions with Dr. Stern to reduce not only the medications but also the number of psychiatrists that Chris sees. Dr. Stern seems open to drop one of the two medications, and would also be willing to oversee the process herself, rather than have Chris continue with Dr. XXX for the med monitoring. This two doctor arrangement was suggested by the staff psychiatrist when Chris left the hospital last May so that Dr. Stern would be free to concentrate on the head shrinking.

All this sounds reasonable, to me at least. It remains to be seen whether Ian will buy it. Ian has fresh memories of Chris’s downward spiral when he was off the meds briefly and is in no mood to jeopardize his own ability to wake up every day and go to work.

The slippery slope

When I was pregnant for the first time, Ian and I attended childbirth education classes. The woman who led the class was natural childbirth proponent and warned us that if you opt for the epidural to relieve the pain, well, one thing leads to another and chances are you end up having an episiotomy and who knows what other horrible thing may befall you. She was perfectly right, of course, but then I was the one who got tired out after a ten month pregnancy followed by twenty-four hours of labor. So, I had the epidural, and of course an episiotomy.

I think I got off rather lucky and was determined the next time to ask for the epidural as soon as I checked in to the hospital. Maybe I could have done it unmedicated, but I never gave it a chance. The third time, I barely had time to climb onto the delivery table when Taylor arrived. No time for an epidural.

Many medical interventions take us by surprise and there is no dress rehearsal. Getting a psychiatric diagnosis is one of those unplanned interventions.

If your relative ends up in the emergency room of the hospital, or taken to a doctor’s office for the first time, what you will be told is that he or she needs to be on medications. If you go that route, here is what they won’t tell you, but this is what it looks like. One thing does lead to another.

1. Your relative will become fat.
2. Being fat makes it difficult to exercise.
3. Dieting doesn’t help.
4. Food and clothing bills will skyrocket.
5. Your relative won’t be able to engage in even occasional social drinking while on medications.
6. Some drugs require laboratory tests on a regular basis to make sure they are not killing the person.
7. Don’t expect to go on the drugs and be back at school or work anytime soon.
8. The drugs don’t work well enough to make you symptom free.
9. Once you are on medications, doctors are very reluctant to take you off them.
10. You, the parent, are no longer in charge. You are now in bed with unrelated people who want to exercise their opinion about the best way forward for your relative. Some may call it interference.
11. You and your spouse may disagree about the medications.

Choosing not to go on medications is not that simple. Finding someone to walk you through your psychosis unmedicated is easier said than done. (See my previous post on finding a therapist.) The family is poorly trained for this role. If you live in a large city, there are organizations that can help and there is greater access to psychiatrists, but very few will do the R.D. Laing thing for you. I recently corresponded with a Soteria type place in the country where I live, to find out if they would take my son should he have another psychotic episode. Yes, as long as he speaks the local language, they said. Well, he doesn’t, so we can cross this option off our list.

Many people assume that if you aren’t on medications, it’s just a matter of time before you become well if you take your vitamins, eat properly and that behavior that is observed on medications will not be there when off them. Not true. You still have the problems that were there in the first place, and they often look physical, not just mental. Chances are your relative will not be able to exercise even when no longer taking drugs. He or she may lose so much weight through not being focused on food that an emergency intervention will be needed. He or she may not be able to do much of anything for several years, even if not on medication.

Taking a holistic approach doesn’t have to mean a no drug at any cost approach. If you sign up anyway for the medications, it is holistically prudent to keep in mind that medication should be temporary, low dose, and singular. Two meds are not better than one. Medications are not a substitute for intensive psychotherapy. Trying to get this message across to the psychiatrist will occupy you for the foreseeable future.

The expressed emotion of meds

Did I say we were done discussing Chris? I wonder from time to time if it would be all-round easier if I were married to myself. Ian and I had another disagreement last night over the meds, leaving me (and him) rather sleep deprived this morning. This particular area of disagreement wouldn’t arise if medical authorities hadn’t overreacted in the beginning, when Chris had his big crisis. By overreacting I mean piling on medications, then switching them when, surprise, surprise, he didn’t get better, then insisting that medications are the only way to handle the problem. How many doctors has he seen since? Chris’s recovery to date, while remarkable in many respects and a cause for real cheer, has been protracted I feel because of the narrow way his crisis is defined by mainstream medicine. The meds are always there, like the elephant in the room, casting a shadow over our day-to-day lives.

Ian and I see meds differently, not only for Chris, but in how willing we are to take them ourselves. For myself, I look for alternative (homeopathic, etc.) means as a way to avoid becoming prescription dependent. I worry about being 80 (I should live so long) and on a debilitating cocktail of drugs that have been building up over the years. I certainly don’t want Chris being drug dependent at his tender age, and I see no reason why he should be. Sure, he’s on the lowest dose possible of two meds, but he’s still on meds and I don’t see any movement afoot by his doctors to get him off them.

Ian is all for not second guessing the doctors about how they handle the meds, and I, well, I’m all for second guessing them. Case in point: Chris’s med handling psychiatrist (as opposed to his psychotherapist) has told Chris that if he is concerned about his weight gain, then Abilify is more of a problem in this regard than Serdolect. She has no doubt consulted the product sheets and if they say it’s so, by golly it must be so. All the companies now are trying to win the Best in Show award by boasting that their products don’t contribute to weight gain. So how come consumers continue to gain weight?

The weight gain is expressed emotion big time. The side effect of gaining weight is an unwanted further intrusion into an already difficult situation. In truth, Chris hasn’t gained much weight this time around, but it has still added several inches to his waist. Chris is always checking himself, berating himself for eating too much, and eating up a storm in the kitchen because he can’t control his appetite. This is not his fault. I know where the problem lies. I tell Chris that it’s not his fault, and not to beat himself up over it. It is a temporary situation, I tell him. The unsaid part is “temporary while you are on meds.” That is my expressed emotion on a subject that I don’t even care to entertain.

In other areas of the world where expressed emotion is supposedly lower, which also tend to be areas where there is not as much access to neuroleptics, the fall-out in expressed emotion from meds is at least one expressed emotion that is avoided. Ian and I have retreated once again to our “we won’t discuss it” policy. The rapprochement in this area will percolate along for a few months. We’ll see what will happen.

The ties that bind

In search of a new doctor after Chris left the day program and while we continued to look for a psychotherapist, Ian and I approached our family doctor. We figured a general practitioner would be less inclined to make clinical judgments about Chris, would be more open to our desire to eliminate the medication, and would have less difficulty working with Chris’s holistic psychiatrist to get him off the medications.

We naively hoped that our family doctor wouldn’t be scared off by the diagnosis of schizophrenia. Our family doctor, without having seen Chris since he became ill, was clearly uncomfortable with taking him on in this new context. We explained that we were working closely with a holistic psychiatrist who was advising on the supplements and that we needed a local doctor to see Chris regularly to observe for himself that Chris wasn’t cracking up and to lower the prescription meds based on the psychiatrist’s recommendations. The united approach and a plan failed to convince our family doctor.

Locating a doctor shouldn’t be such a big deal (even Dr. Hoffer writes that a regular GP could handle this), but that’s the position in which people with a diagnosis of schizophrenia find themselves. Psychiatrists, not family doctors, write the prescriptions for the chemical straitjackets that bind the schizophrenic to the care of a psychiatrist. Most family doctors are reluctant to treat psychiatric patients because they have not received much training in mental illness.

One problem with getting off drugs is the drugs. The drugs are very powerful and lowering their dosage can have frightening and dangerous ramifications if not done properly. The only way to reduce the dosage is very slowly, with proper psychological, nutritional, and vitamin support. These days, information on how to get off psychiatric drugs can be found on the Internet, complete with virtual coaching. I consider clinical supervision essential for anyone planning to withdraw from drugs. Unfortunately, a lot of people are essentially clueless and/or reckless and will persist in dropping medication cold turkey, with predictable results. Psychiatric patients can be difficult customers.

The unreasonable, emotional parent

In June 2006, twenty-two months after starting, Chris’s time in the day program was up. He had squeezed an extra four months out of it due to his poor clinical presentation, but now it was definitely at an end. Dr. ‘L’ arranged for Chris to check in with the doctors for his medication monitoring while we looked for someone else.

At our second to last appointment with Dr. ‘L’, I left the meeting spitting nails I was so angry. It seemed to me during the meeting that Dr. ‘L’ was again trying to drive a wedge between Ian, Chris, and me, in order to gain the upper hand concerning our (Ian and me) wanting to eliminate the medication. Dr. ‘L’ knew that Ian was the more “reasonable” parent, meaning Ian was more inclined than I to urge caution about where we were headed. Chris, as usual, took a limited part in the conversation, so I felt I was left twisting out there on my own once again. “Fine,” I screamed at Chris, while simultaneously jumping up and down on our walk home, “do nothing, stay ill, I’ve had it! I will not sit down with Dr. ‘L’ one more time! You can count on that!”

After a few days, it dawned on me that if I didn’t attend the final meeting, Dr. ‘L’ perhaps had a good shot at convincing Ian of the foolhardiness of our position. Dr. ‘L’ could then raise the medication. There was no bloody way this was going to happen, so I attended the final meeting and took the high road. I even said somewhat tenderly, “I will almost miss you, Dr. ‘L’,” which was perfectly true as far as it went. He understood. It wasn’t his fault, I suppose, that he was stuck in a paradigm belief that psychosis could be effectively managed by medications.

Fleetingly improvised men

Despite the benefits that I had observed in Chris from the assemblage point shift, Chris continued to present a poor clinical image at his day program. In early June 2006 at our monthly meeting, I argued the never-ending medication point once again with Dr. ‘L’ in the presence of Ian and Chris. I was getting that “please, dear” look from Ian, but I persisted.

Suddenly, in the midst of our discussion, Dr. ‘L’ did exactly as I expected he would that day. He was determined to demonstrate to us why Chris’s medication needed to be raised. He focused his gaze on a point near the window where Chris’s gaze was wandering, and asked quietly and with evident dramatic flourish, “Chris, what do you see?”

“Uh, someone over there near the window.”

“Surprise, surprise,” I thought sarcastically. Chris was seeing people in the room who weren’t us. He was hallucinating. Instead of the term “hallucination” I like the term that Daniel Paul Schreber used to describe people populating the corners of his gaze. He called them “fleetingly improvised men.” To Schreber, these were “souls, temporarily given human shape by divine miracle”.

Dr. ‘L’ had caught Chris in the act, and waved this around as proof positive that he needed to have his medication increased. I knew Dr ‘L’ would pull this trick and I was prepared, sort of. Chris had warned us before our meeting that Dr. ‘L’ wanted to raise the medication. I would have preferred to ignore Chris’s wandering eye, but it was rather obvious. So, instead, I said, “Yes, Dr. ‘L’, but in the bi-weekly meetings with the other families involved in the program, it has been said that we shouldn’t pay undue attention to voices. Therefore we haven’t. Of course he hears voices and sees things. Isn’t that what schizophrenia is all about? It’s not for academic interest that we talk about voices in the bi-weekly meetings in the first place. The drugs haven’t prevented the voices, have they, so what good are they in Chris’s case?” What I would have loved to add, but did not, was that two years in Dr ‘L’s day program hadn’t fixed the voices either.

Alas, as I also predicted, we allowed Dr. ‘L’ to raise one of his two medications from 200 mg to 300 mg. Chris, after all, was acting more skittish than we had usually seen him in Dr. ‘L’s presence. It was hard to deny it, but the medications wouldn’t fix it. We were stuck in this clinical program for better or worse and it was now a question of humoring Dr. ‘L’ until we could execute a graceful exit strategy from the program and the stupid medications.

___________________________
Daniel Paul Schreber, “Memoirs of My Nervous Illness,” New York Review Books Classics (January 31, 2000)

Existential concerns

Chris will soon be released from the hospital after three months. I am concerned that we will be right back to the situation that prompted his hospitalization in the first place. He knows that he needs to get out, he is bored out of his mind, and yet he is not looking like he can blend in with quote unquote “normal people”. He arrived home for the week-end on Saturday morning, attended to his e-mails and fixed a few computer problems. He talked to me very thoughtfully on Saturday evening. Sunday was a different story. We invited him to join us for a lecture and lunch. We went for a walk on the grounds of the lecture hall before lunch. He was in existential despair. He didn’t want to spend his day with “old people”. I can’t fault him there. He said he didn’t know what was real anymore – was I real? Was this scenery real? Was the day going to end and the sun go down? He claimed he didn’t know. I asked him if he wanted to resume his Alexander Technique lessons when he came home. “No, I have learned everything I need to know”, he answered.

The hospital fussed with his medication, introducing a second antipsychotic over my objections. I maintain that despite the elaborate, weird behavior that got Chris committed, his problem cannot be fixed with medication. It is looking likely that I am correct. The doctor is not satisfied with the addition of the second antipsychotic, noting that Chris seemed overall better just after they introduced it in a low dose. So, now they are tapering it back but not discontinuing it. Discontinuing it would be admitting they were wrong. Nobody, not my husband, not the hospital psychiatrist, not Chris’s regular psychiatrist nor anybody having seen Chris in his pre-committal state, understands my objection to the medication. It is they who just “don’t get it”. Chris has problems that persist whether he is on medication or not.

What I think has taken the edge off the situation while Chris has been hospitalized is not the medication but the fact that Chris got away from us, from living in claustrophobically close quarters every day and being treated like the two year old he was becoming. The doctors acknowledge this reality, but medicate anyway. When I object to the fact that this latest med was the fifth antipsychotic Chris has been on, and shouldn’t we conclude that antipsychotics don’t work for Chris, the clear message I receive in return in that it is foolhardy not to use antipsychotics as one treatment modality. My husband is almost threatening to divorce me if I undermine in any way Chris’s staying on medication. He reminds me of the lead-up to the hospitalization. Yes, I am painfully aware of all that but I also know that Chris has exhibited extremely weird behaviour while on medication, beginning with his first antipsychotic. His mind is more powerful than any drug or vitamin. Until he resolves his existential problems, we will continue to weather the storm.