Borderline Families

A longtime reader of my blog hasn’t been writing comments lately. She gently let me know this in a comment she made after reading yesterday’s post. This might be because  my tone has become (a little) preachy and determined (adamant) about the (over)use of psychiatric drugs in this country. More specifically, the over-medication of my daughter.

Do I sound inflexible?

I am not.

I do, in fact, believe that there is a place for drugs in the psychiatric treatment of people suffering with mental problems.

I have relied on drugs to help pull my daughter back from the edge too many times to count. I have written about a friend of mine whose life was hijacked by panic and anxiety. Without short-term use of psychiatric drug therapy, she might not have been able to function enough to climb out of the blackness she fell into. I read numerous blogs written by people who are finding a balance in their lives because of the right cocktail of drugs. I do not judge them. I cheer them on. I just wish there were alternatives available.

I would never deny that there is a place and time for psychiatric drugs.

But…

I do think that they are over-prescribed in the US and, as I indicated in my last blog post, Laziness Wins, I think General Practitioners should not be so quick to pull out their pads to soothe a sad or anxious person with a quick-fix pill who might better benefit from some one-on-one with a therapist.

My daughter was diagnosed with too many mental illnesses to count. Each mental illness had the same drug treatment protocol as the last. In the end (before she fled the final treatment center), it really didn’t matter what they labeled her with or which combination psych drugs she took. It all boiled down to the same thing. A label and a variety of psych drugs in various combinations. Interchangeable.  Her final diagnosis was a personality disorder – regularly not considered treatable with medication – yet, she was on heavy doses of many drugs.

My daughter was never given any alternatives to the drugs that she lined up for four times a day for four years in treatment centers and psych hospital throughout this country. The food was disgusting in these places, the only time my daughter smoked with a vengeance was while in treatment, exercise was always an added expense to an already very expensive treatment. During four years of treatment, my daughter took a one week course of yoga which centered on breathing and relaxation techniques. The cost was exorbitant and added to the $1000-a-day treatment of which she missed hours while at the yoga classes.

Alternatives to drug therapy . . .

My mother has had thirteen (13!) back, neck and shoulder surgeries. I have a bad back and shoulders but have refused to go that route. I see a chiropractor and exercise regularly. I add acupuncture when the pain flares up. Insurance doesn’t cover it but it works. The last back doctor I visited suggested that I take Neurontin. I knew about that drug because my daughter had taken it. For pain, anxiety-induced free-floating gut-wrenching pain. Gabapentin (Neurontin)  is in a class of medications called anticonvulsants. Gabapentin treats seizures by decreasing abnormal excitement in the brain. Gabapentin relieves the pain by changing the way the body senses pain.

I read the brochure that the spinal doctor gave me:

Gabapentin may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:

• drowsiness
• tiredness or weakness
• dizziness
• headache
• shaking of a part of your body that you cannot control
• double or blurred vision
• unsteadiness
• anxiety
• memory problems
• strange or unusual thoughts
• unwanted eye movements
• nausea
• vomiting
• heartburn
• diarrhea
• dry mouth
• constipation
• weight gain
• swelling of the hands, feet, ankles, or lower legs
• back or joint pain
• fever
• runny nose, sneezing, cough, sore throat, or flu-like symptoms
• ear pain
• red, itchy eyes (sometimes with swelling or discharge)

Some side effects may be serious. If you experience any of the following symptoms, call your doctor immediately:

• rash
• itching
• swelling of the face, throat, tongue, lips, or eyes
• hoarseness
• difficulty swallowing or breathing
• seizures

Gabapentin may cause other side effects. Call your doctor if you have any unusual problems while taking this medication.

This was just one of the meds that my daughter was on in January 2009. At the time she was on Neurontin, she was also being given: Haldol, Cogentin, Seroquel, Ambien, Hydroxyzine, Propanolol, Trazodone, Lithium, Trileptal and an Emsam Patch.

Can you imagine the side effects of all of those drugs combined? How did she survive?

So, yes. I do want a sea change to take place. I know that I need to take little, solid steps to draw awareness to the problems with vague diagnosis and the overmedicating of psych patients in this country.

I do not want to turn anyone away. I want to open up a dialogue to talk about finding alternative treatments to the drug therapies that prevail in this country.

Uncategorized exercise, over medicating, smoking, yoga

Although my therapist neglected to tell me the most important information I have ever learned – EVER, I do admire him.

He recently told me a story. A clinic opened near his office and he decided to try something new. He sent letters to the GP’s introducing himself as psychologist and sent along his impressive resume. He suggested that they set up a relationship wherein if a doctor has a patient who comes in looking for a depression med or thinking that he/she might benefit from one psych med or another, the GP refers the patient to my psychologist to interpret the actual need.

He is convinced that GP’s are the worst offenders of prescription writing before they know the full story. They are swayed by drug reps who visit the office and leave samples. There is too much information for them to really  know the full description of med interactions and side effects of all the generations of psych meds on the market. I have written about this before but it bears repeating. There are too many psych meds coursing through our country’s blood stream.

My friend with the son whom I have written about so often was given a prescription for an antipsychotic after her son had a twenty minute evaluation. He was thirteen. (Off-label use on children… Give it to him! It will adjust his mood!). She didn’t. But, how often is this happening? How many times a day are children receiving meds for ADD? The life-long trajectory of drug use is spelled out. Ritalin first, onto depression meds and, when more control is needed, the big guns – antipsychotics are added. It was never mentioned to my daughter that the depression meds might cause mania.  She found that out on her own.

Anyway, not one of the doctors in the new office called my psychologist. Life is hard sometimes. It is tough to have a kid and give up your job. It is discombobulating to move. It is sad to lose a parent. It is hard to fit in another appointment, this one with a psychologist. And then there is the stigma attached to a visit to a mental health professional.

Doug Bremner, the writer of the blog, Before You Take that Pill, has a post today about Daniel Carlat. From the post American Shrinkery Update:

Dan Carlat MD has just come out with a book on American psychiatry that has got a lot of people talking. In Unhinged: The Trouble With Psychiatry – A Doctor’s Revelations About a Profession in Crisis Dr. Carlat describes the practices of the typical psychiatrist. In order to generate the most income, most of the appointments are 15 minute “med checks,” and the treatments are based on psychopharmacology and the biological psychiatry model. Patients are fed the pharma marketing explanations of how psychotropic medications work, providing solace for all involved, although there really isn’t good evidence for the explanations. Meanwhile, psychiatrists have farmed out therapy to the other professions, and have adopted a herd em through mentality toward their patients.

So, is the general public getting treatment when it is actually needed? I don’t think so. I think the quick and easy pill has taken over. When my daughter first experienced signs of anxiety, she was given benzodiazepines. Even over my pleas that the psychiatrist take time to talk to my daughter about drinking and combining drugs. The “med checks” were too short to get into it.

A friend of mine is battling the side effects of Effexor after trying it because a friend though it would be “good for her”.  Her doctor wrote a prescription for it and sent it to the pharmacy. No appointment necessary.

If there is no such thing as chemical imbalance of the brain (the little thing my therapist neglected to tell me before I read Robert Whitaker’s book), what are all these drugs doing – other than creating life-long users of a corrupt system.

Is everyone is too lazy to change it?

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I am rethinking my approach to the mental healthcare industry and I have found myself bristling when I read some often used language for describing experiences that my daughter has.

“Symptoms” of her “illness”. Perfect example.

I reread some of my earlier posts and was upset by the labeling and the jargon that I, too, have relied on to recount my daughter’s life.

When she moved to New York City from The Austen Riggs Center In Stockbridge, MA,  a little over a year ago, she wanted to leave her past behind. She arrived in NY and, in fits and starts, created a new persona who was not mentally ill.

No one in her new group of friends knows her real backstory. She admitted to some people somethings. But, no one got the full report. Very few people know that she had been in treatment centers and hospitals for the previous four years. Even fewer knew the reason why. She told people she was an addict. A little half lie that seemed less threatening than saying she was mentally ill. (She is addicted to benzodiazepines.) When she gets scared, depending on the severity, she calls me.

If the pharmaceutical companies, hand in hand with the American Psychiatric Association, created the labels and “symtomology”  of the “diseases” of the brain, can I use them in good faith? Do they really do service to my daughter and help her build a life separate from the stigma of mental illness?

Steven Morgan, a survivor of the system, choses not to use the word “symptoms” and instead refers the experience – the thoughts, emotions and behaviors. “Really hyper” or “full of energy” instead of manic. “I am sad” or “vulnerable” as opposed to “I am depressed”.

“Mental illness” infers that there is a disease. For the past twenty-five years, the psychiatric establishment has told us a false story. It told us that schizophrenia, depression, and bipolar illness are know to be brain diseases, even though… it can’t direct us to any scientific studies that document this claim.

The “magic bullet” model of medicine that had led to the discovery of sulfa drugs and antibiotics was very simple in kind. First, identify the cause or nature of the disorder. Second, develop a treatment to counteract it. Antibiotics killed known bacterial invaders. Eli Lilly’s insulin therapy was a variation on the same theme. The company developed this treatment after researchers came to understand that diabetes was due to an insulin deficiency. In each instance, knowledge of the disease came first – that was the magic formula for progress.

In the short span of three years (1954-1957), psychiatry gained new medicines for quieting agitated and manic patients in asylums, for anxiety and for depression. But, none of these drugs had been developed after scientists had identified any disease process or brain abnormality that might have been causing these symptoms. They arrived out of the post-World War II search for magic bullets against infectious diseases, with researchers, during that process, stumbling on compounds that affected the central nervous system in novel ways. ~ from Robert Whitaker’s, Anatomy of an Epidemic

The language that we are using today to describe mental function grew out of this false premise that these drugs were magic bullets fixing disease. Maybe, rather than referring to my daughter’s illness, I could say  she is having a “bad experience” like she did in May when I went to visit her. Or “mental health issues” or “mental health problems”.

These experiences are hard to define.

The following excerpt is from my book Collateral Damage. When I wrote this I was heartbroken. I thought that I had a mentally ill daughter who would be cycling through psych med combinations for the rest of her life.  She was getting worse. I was sad and felt very alone in my despair.

Mental health diagnosis is not an exact science. So much depends on the patients’ ability to describe symptoms – repeatedly, over and over. Patients lose hope as the retelling gets muddled. Keeping track of the various combinations of drugs and the time spent waiting to see if there are lasting results gets tangled up with the memory of the time spent weaning off the drug to get ready for the next attempt. The excruciating days when the drug doesn’t work and L is rendered beyond listless get confused with trying to recall the ones that worked for a while but quickly lost their effect. “Was that the one where I could feel the blood moving in my veins?” or “Was that the one that made me feel like if I had something to say it needed to get through miles of red tape in my brain?”

Mental illness is not quantifiable like the stages of cancer. There are few significant measurable markers. L is very sick. She is hospitalized frequently. No medicines have worked to deter the unrelenting anxiety, debilitating depression or crippling body dysmorphia. There is no surgery that can remove it or treatment that will irradiate her disease. There has never been a definitive answer or explanation from a doctor. L might or might not get better and she might or might not get worse.

It is like she woke up one morning and swung her legs over the edge of the bed and “Oh, damn! No left leg.”  She learns to get around, handicapped, but she can do it. But, then, it is her right arm or a leg and an arm. She never knows when or what and, because some days she has it all and she feels great, it is devastating when it all falls apart – again.

My daughter still experiences “loss” but she is better. She has longer period of time between incidents where she is learning to live a life with meaning beyond a diagnosis. The diagnoses limited everything about her life. Who she was. What she could expect to do. How happy she could ultimately be.

Rather than having a “mentally ill” daughter, I now have a daughter.  She is a person. A human being.

I think we both changed. I let go of the medical model that dictated my hopes and smashed my dreams. My daughter found the magic formula for her success:

Doing gives the power to do.

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For many families, NAMI’s programs are the only available safe haven after a diagnosis of mental illness has been handed to a family member.

Our family’s first experience sent us into hiding. We did not look for compassion from our neighbors nor did we talk to any doctors other than psychologists and psychiatrists. The diagnosis alone, with all its symptoms and criteria for identification, was a described as a life sentence.

Our daughter had ADHD, bipolar, depression, PTSD, body dysmorphia, borderline personality disorder, etc.. It seemed every new hospital gave her a new diagnosis to add to the list. Somewhere along the way, the diagnoses took over her life. She was these illnesses. She manifested each symptom like a textbook case. Except, when it wasn’t and she didn’t respond to the drug treatment or switched between bipolar and borderline and back or to another set of symptoms. No one, least of all the doctors, could keep track of just exactly which illness best described my daughter.

Where was my daughter in all of this?

Her experiences matched the clinical categories of many of the illnesses attributed to her. We believed in the chemical imbalance theory that was the medical model that the doctors were following. The doctors created drug regimes to fix the imbalances for each diagnosis that was handed down.

My daughter was “sick” for years. And, nothing the doctors prescribed seemed to help. She got worse. She was traumatized in hospitals, stigmatized by her diagnosis and struggled everyday to find herself in the mess her life had become.

When I discovered, very recently, that the notion that a chemical imbalance in the brain was the cause of mental illness was false, an idea built on flimsy research and mostly promulgated by pharmaceutical industry, I had to rethink everything.

I laughed when I read the headline of the Science section of the New York Times on Tuesday July 13, 2010, Is Gravity Real? A Scientist Takes On Newton. Every hard fact was going out the window! This article nailed how I felt. Something that I had been taught to believe in – the chemical imbalance of the brain, the existence of gravity – was now questionable.

I am confronted with the legacy the last treatment center left for my daughter. We were told that she will never be able to live on her own. She will not be able to take care of herself; long-range plans needed to be arranged. Her mental illness was chronic and permanent.

Yet, when she fled the treatment center, she also ran away from the medications – most of them, anyway. And, she started to get better. During the times between episodes, she was beginning to chart a life for herself. She had friends. She lived in an apartment. She free-lanced as a model and an art director. She was getting the hang of not being sick.

She was not the illness anymore.

That is not to say that she has shook off the symptoms that got her the diagnoses in the first place, but I wonder if the manifestations of her experiences are really so easily categorized. I began to wonder if the whole medical model that we so dutifully followed was entirely dictated by the pharmaceutical industry and their manual, the DSM.

Are the pharmaceutical companies behind the writing of the diagnoses?

When shyness, shopping excessively or over-tanning become “illnesses” listed in the DSM (with bullet-point criteria listed to check symptoms against), does the industry win another group of unwitting victims? A future group of chronic users of drug treatments to “fix” the “chemical imbalance”.

75% of NAMI’s funding comes from pharmaceutical companies.

A family arrives at their first NAMI meeting and are told by the group’s spokesperson to be sure that the diagnosed person takes the drugs prescribed by their doctor. Along with the drugs, psychotherapy, support groups and education are key to the individual’s success at managing their illness. Of course, the path of least resistance is to pop a pill. Quick, convenient, and covered by insurance. Support groups and psychotherapy are time consuming.

NAMI is feeding the pharmaceutical industry. Money for alternative research finds its way to pharmaceutical companies to invest in the next generation of drugs. This continues to happen even though there are a growing number of people who are vocal about healing from mental illness through various other techniques not involving medication.

The pharmaceutical industry is writing the guidelines for treatment. The industry teaches psychiatrists how to treat patients who come to them with a certain set of problems. The drugs are prescribed, the patient is hooked and the chronicity begins. More and more drugs are added; the industry grows.

The system is feeding itself. The pharmaceutical industry has grown to a 40 billion dollar a year sham.

Uncategorized ADHD, bipolar, Body Dysmorphia, Borderline Personality Disorder, chronic and permanent mental illness, depression, NAMI, pharmaceutical Industry, PTSD

I remember when my daughter was first diagnosed with a major psychiatric disorder. It was like it all finally made sense. The criteria for the diagnosis lined up and we were given reasons for her extreme behavior. The onus had been lifted off of the whole family and placed on the Mental Illness that had invaded my daughter. Her brain was sick.

This was back when I bought the whole story that she had a “chemical imbalance” that had to be fixed. The remedy could be found, according to the too many doctors we took her to, in a convenient pill form.

Recently I read: “There is a form of circular reasoning that goes: if SSRIs are helpful in alleviating depression, and if they do change the chemical imbalance, then depression must be caused by that imbalance. Inferring causality from the success of a treatment is frequently a flawed endeavor: aspirin is effective for headaches, but no one would seriously claim that headaches are caused by a deficiency of aspirin.” Steve Morgan

My daughter was told that she would have to take psychiatric medications for the rest of her life. Science is equated with truth in Western society and the doctors admonishing my daughter to “stay on the drugs, no matter what” were the arbiters of scientific fact. We believed everything the psychiatrists told us.

For years I trusted the doctors even as my daughter didn’t respond to the drug regimes or various methods of treatment.

Everything changed when I learned about neuroplasticity of the brain. (And, of course, after I read Robert Whitaker’s Anatomy of an Epidemic, a book that completely shook my world.)

Neuroplasticity is the brain’s natural ability across a lifespan to form new connections and change its structure in response to experience. The brain changes! Steven Morgan, (Rethinking the Potential of the Brain in Major Psychiatric Disorders).

This means that it is highly likely that whatever is going on with my daughter’s brain, the psychiatric symptoms, can change, too.

For instance, trauma and chronic stress change your brain but the areas that are affected can be changed back or compensated for. More specifically, the amygdala involved in processing emotion and anxiety and shown to be affected by trauma can form new connections including to the prefrontal lobes which helps in controlling impulses and exercising restraint. Gray matter which has been shown to be less voluminous in people diagnosed with schizophrenia can thicken.  Serum BDNF (Brain-derived neurotrophin factor) which has been shown to be lower in people diagnosed with schizophrenia bipolar disorder and depression can be raised. The hippocampus which is shown to have shrunk for people diagnosed with depression and PTSD can grow back and even produce new cells for the rest of the brain to make use of. Certainly neurotransmission – the release of serotonin, dopamine, norepinephrine etc. to allow communication between brain cells – is variable and can be altered by natural means ranging from sunlight to thinking positively. Even psychotherapy can significantly change the brain.

One of the tenets of neuroplasticity is that in order for the brain to form new connections and change, it must be stimulated through activity. Whether this activity is external – such as playing a piano, or internal – such as imagining your fingers playing a piano sequence, an important factor in driving lasting brain changes is that you pay close attention to what you are doing. In fact, playing a piano and just thinking about playing a piano affect the brain in virtually the same way, as long as you are engaged. The importance of this point cannot be overstated: if thoughts and imagination physically change your brain, you can therefore use your mind – especially through focused attention – to positively rewire it.

Steven Morgan goes onto say that people who have recovered have also mentioned practical activities that helped – eating well, exercising and the healing power of intangible experiences : spirituality, hope, human connections, having meaning and purpose in life, optimism, and undying will and awareness. Little could I have guessed, my daughter’s undying will has been healing her all along this horrible trek through the mental healthcare industry.

Her experiences are integrated into her brain, so that whatever happens to her both externally and internally has the potential to significantly alter her brain. Your brain changes in response to the experiences you have. Even though psychiatric disorders show up on the biological level as differences in the brain’s functioning, your brain is not set in stone. In fact, you can change it, though it will take time and effort. The is much reason to be hopeful.

Recovery and hope go hand-in-hand, yet there is nothing more hopeless than believing your brain will forever malfunction without medication. There is also hardly a more misinformed declaration about the brain in light of recent science, and especially when considering the multitudes of people who have completely recovered.

I haven’t heard from my daughter. She might be en route back to the States. I am proud of her for doing this. Changing her brain, creating new experiences! I just hope that the experiences with the photographer don’t shadow her sense of  success.

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