An Open Letter to DoctorsVitality Magazine April 1, 2012
How a Simple Diagnosis of Insomnia Took Me Down the Dark Road of Drug Addiction
You call yourselves doctors. You once took an oath to do no harm.
Originally, there were no pharmaceuticals in our house – not even an aspirin, but I became a drug addict when I was prescribed a benzodiazepine for insomnia.
My insomnia started after I received a cluster of immunizations which I didn’t want, but took because I was told it would be irresponsible of me not to. I was around 40, recently married, and had a dozen young godchildren. One of the shots was rubella: the other two were combinations. They were all given at one time.
Immediately after the vaccination, I became crippled with profound muscle weakness and severe ‘atypical’ inflammatory arthritis, some of my fingers became gnarled and I was in a wheelchair for a while. Over many years I was able to reverse most of the physical damage, but the insomnia persisted. Needless to say to say, I did not have children and henceforth in medical reporting I was referred to as ‘middle aged, short-haired, bespectacled, casually dressed, and childless.’
Even though I had to change careers, I remained fully engaged in life, busier than most. I took very small amounts of the benzodiazepine intermittently for several years. I took it only for sleep and it seemed to help a little, but I was also becoming ‘anxious.’ At that time I did not recognize ‘anxiety’ as a possible adverse effect/reaction to the benzodiazepine, nor did I know about interdose interval withdrawal.
When my mother died on Christmas Eve 2002, my sleep got worse and I was prescribed a higher dose of the benzodiazepine. My sleep deteriorated further and I became jittery, I tried to withdraw from the benzodiazepine. I was in trouble.
You call yourselves doctors, but you didn’t recognize that not only had I been having adverse reactions to the benzodiazepine, I also had benzodiazepine withdrawal syndrome. You decided I was depressed, and you gave me an antidepressant. When I became agitated and developed a tremor, you said I had agitated depression.
You call yourselves doctors, but you didn’t recognize that I was having an adverse reaction to antidepressants. You gave me more antidepressants. When the agitation became so severe that I lost my sleep entirely, you said I had major depression and gave me even more antidepressants. You also gave me sleeping pills.
Potent Drug Cocktail
You call yourselves doctors, but you didn’t recognize the adverse effects of benzodiazepines, plus antidepressants, plus sleeping pills. You said I had an adjustment disorder – but the only things I wasn’t adjusting to were your drugs.
I frequently collapsed, sometimes on the street, and was twice taken by ambulance to Emergency where I was not treated with dignity. Not one of you recognized that one of the prescribed drugs was reducing my blood pressure precipitously.
When I started twitching and shaking uncontrollably, you gave me more sleeping pills – to be taken three times a day. When I fell asleep during an appointment, you said I was ‘vegetatively depressed.’ When I was in constant motion, you said I was bipolar (manic depressive). You then settled on psychotic.
You gave me antipsychotics. I started howling like a dog. I marched in place. My body movements became chaotic. My face twitched and my tongue darted in and out of my mouth. You call yourselves doctors, but you didn’t recognize the adverse effects of benzodiazepines, plus antidepressants, plus sleeping pills, plus antipsychotics.
You call yourselves doctors, and you gave me 35 different psychiatric drugs in the space of eight months. You didn’t know what you were doing and you did it vigorously. You were treating the adverse effects of pharmacy and polypharmacy with more polypharmacy.
(When people ask me why I took all those drugs, I can answer only that I would have done anything, agreed to anything, ingested anything to stop the horrendous agitation – there are no words to describe the horror of that agitation. And at some point my brain became such a toxic mess that I was no longer capable of reason.)
You told me I had dementia. I was afraid I would kill myself, and I was afraid I wouldn’t kill myself. I wrote a living will and a Do Not Resuscitate directive. I gave away my belongings – especially those which had been most dear to me.
Next step – Electroconvulsive Therapy
You call yourselves doctors, and you said the benzodiazepines, antidepressants, sleeping pills and antipsychotics which you had prescribed weren’t working. You said I had a dissociative disorder. You cold-turkeyed me off many of the drugs, you ‘formed’ me, and you ordered electroconvulsive therapy (ECT). You wrote I was an “excellent candidate for ECT.” I refused ‘treatment’, but you coerced my husband into signing by telling him ECT was the last and only option.
You held me for 10 weeks and treated me to 25 general anesthetics and 25 bilateral grand mal seizures. I don’t remember much except the assembly line of gurneys on ‘shock’ days. I shook from terror as I looked up at your cold matter-of-fact faces. I wondered if there would be anything left of my brain when you were finished with me. I thought I was going to die. I remember the stench of the rubber mask over my face, the IV going in and then, as the anesthetic hit, the plunge into merciful oblivion.
And later – the blood in my mouth and the violent headaches. I didn’t know where I was. I didn’t know why I was there. I asked these questions of my husband after each ECT ‘treatment.’ My husband came to see me every day for two-and-a-half months and brought me a home-cooked meal each time. He came twice on ECT days.
I did stop howling and my legs were no longer marching. I was now merely babbling, and shuffling my feet non-stop. My face quivered. You said I had benefited from ECT.
You call yourselves doctors, but you didn’t consider I might have stopped howling and marching, and was now merely babbling, and shuffling my feet because you had withdrawn many of the benzodiazepines, antidepressants, and antipsychotics you had prescribed. You kept me on sleeping pills – three times a day, once at night. And you added new drugs.
You said I would require weekly maintenance ECT for the rest of my life. You said I would require medication for the rest of my life. You told my husband I would not be coming home when you were finished with me. You told my husband to look for a long-term care facility for me. You call yourselves doctors, and you said you had done everything you could for me. You said you had made me ‘well’ and you closed my file.
You sent me to a support group for people recently discharged from your institution. We former ‘inmates’ all had different diagnoses, but we all had something in common – our legs were constantly moving. You, my doctors, told me my legs were moving because I had agitated depression. A pharmacist – the chief pharmacist of your institution – came to speak to the group and said it was akathisia – a common adverse effect of medications!
You, my doctors, were puzzled by my uncontrollable body movements. You used the best of modern medicine. You sent me for a sleep study, an EEG, a CT scan, and an MRI. The cause of the agitation, however, was sitting right there in your own office, on your desk – your prescription pad – the worst of modern medicine!
For this, you doctors who took an oath to do no harm, medicated me to insanity and tortured me with ECT.
I walked out and never returned to the support group. I didn’t return for maintenance ECT either, even though you threatened that I would relapse. You commented on my lack of intelligence. It’s all in my medical records. I tapered myself off drugs without your approval and without your help. It was hell – absolute hell. And I lived with the fear that you would have me seized and returned to your institution for more ECT. I no longer felt like a human being.
During my ordeal, I was seen by dozens of doctors. It’s all in my medical records. Three of you questioned the diagnosis and then you did absolutely nothing about it.
You systematically destroyed my brain and nervous system with ECT. I have amnesia. Over 20 years of my life are missing. Most of the memory of my life with my husband is gone. I also have anterograde amnesia – the loss of the ability to create new memories.
Seven years post-ECT, I live with headaches, seizures, nightmares, an irregular heart rate, vitreous detachments, cognitive impairment, Parkinsonism-like tremors, Tourette’s-like symptoms when stressed, a paralyzed diaphragm which makes breathing difficult, severe hypoglycemia, and a painful cyst behind one knee from my attempts to control leg tremors by locking my knees.
I can’t remember things. At home I have covered one wall with corkboard so I can pin up the notes that remind me of what I am supposed to be doing and when. I used to have a fine mind, a photographic memory, and I multitasked with ease.
You, who call yourself doctors, also destroyed my husband’s life. When you discharged me from your institution, my husband collapsed from stress, grief, and guilt. He became despondent. He was emotionally spent. And then his heart failed. This was the husband who, in close to 60 years, had never missed a day of school or a day of work because of illness. He has now been hospitalized five times – three of those times in the resuscitation room.
When I wanted to talk to someone about the trauma I endured at your hands – the trauma my husband had helplessly watched, seven of you doctors refused to see me. You admitted no guilt. You took no responsibility. One of you who did see me, told me what I was saying was libelous. Another one wrote that I had a ‘paranoid disorder’ and that ‘it would be difficult to medicate’ me. It’s all in my medical records.
Most of my friends are gone. I was too much for them and they weren’t enough for me. Mental illness has a stigma. Psychiatric labels stick.
I take no drugs. I live in terror of those who forgot they once took an oath to do no harm. However, if I met any one of you, my doctors, on the street; I would not recognize you. You stole my memory.
To this day, my husband of 30 years says I was not depressed – I just couldn’t sleep. To this day, my closest friend of over 60 years says I was not depressed. To this day, my colleagues of over 30 years say I was not depressed.
I can present you, my doctors, with all the evidence in the world; but you are so entrenched in your beliefs – it will do no good. You did not need to find a needle in the haystack. There was an elephant in the haystack and you failed to see it and, to this day, you deny its existence.
I presented you with monographs of the 35 drugs I was given – most with similar adverse effects of agitation, insomnia, depression, suicide – adverse effects which you were obviously ignorant of. You arrogantly dismissed my efforts to inform you. Many of these drugs now have black box warnings.
With each new drug and with seeming triumph, you took credit for having ‘unmasked’ anxiety, depression, agitated depression, adjustment disorder, major depression, vegetative depression, bipolar disorder (manic depression), psychosis, dissociative disorder, and dementia. Finally, when I had tapered myself off drugs and was trying to get help for Post Traumatic Stress Disorder, you pronounced me ‘paranoid!’
You call yourselves doctors. You created an iatrogenic disease. You searched, you dug, you gouged for only negative things about me. Not one of you ever had a good word to say.
Not one of you has apologized. The only oath you ever took was to ‘admit no harm.’ You also appear to have taken another oath, the ‘oath of silence.’
Seven years post-ECT I have not been able to get help for Post Traumatic Stress Disorder, nor have I been able to get cognitive remediation.
One of you, one who actually tried to help with referrals (which have so far all come to a dead end) said I was a ‘survivor.’ No one should have to ‘survive’ going to a doctor. Another one of you said: ‘Sometimes there are problems (post ECT).’
You doctors are entitled to your opinions, but you are not entitled to your own truth. My truth stands up to scrutiny.
Here is my list of drugs from my medical and pharmacy records. Most of the drugs were prescribed by one psychiatrist: Several were flipped back and forth. I might have missed some.
Ativan, Rivotril, Xanax, Clonazepam, Valium, Celexa, Novo-pranolol, Amitriptyline, Propranolol, Imovane, Effexor, Lithium Carbonate, Moclobemide (Man-erix), Seroquel, Wellbutrin, Nortriptyline, Perphenazine, Gabapentin, Ritalin, Gabapentin, Fluvoxamine, Oxycontin, Methoprazine (Nozinan), Paxil, Remeron, Zyprexa, Risperdal, Parnate, Haldol, Aventyl, Cogentin, Loxapine, Chlorpromazine (Largactil).
A psychiatrist who was shown this list by a friend of mine asked: ‘Is she still alive?’ I had wanted to get into his practice, but the waiting list was very long.
American psychiatrist Peter Breggin, advocate for drug-free treatment and empathic therapy, author of Toxic Psychiatry, Medication Madness, Your Drug May be Your Problem, Brain-Disabling Treatments in Psychiatry writes: “most psychiatric drugs can cause withdrawal reactions, sometimes including life-threatening emotional and physical withdrawal problems. In short, it is not only dangerous to start taking psychiatric drugs; it can also be dangerous to stop them. Withdrawal from psychiatric drugs should be done carefully under experienced clinical supervision” Please visit www.breggin.com and www.empathictherapy.org for more information.
Canadian orthomolecular psychiatrist Abram Hoffer (1917-2009) treated/cured over 5,000 schizophrenics without drugs. He was appalled by the dominance of the pharmaceutical industry, the inhumane treatment of patients, and the degrading levels to which healthcare can sink. He felt that patients today would do well to avoid psychiatry like the plague. In an interview, recorded a few weeks before his death, he asked us all to keep his work going and signed off with: “All psychiatrists should be sent to Mars – they’d be better off and we’d be better off without them.” For more infmation, please visit www.orthomed.org
Irish psychiatrist Michael Corry (1948-2010) also campaigned for the rights of mental health service users, opposed bio-psychiatry and psycho-pharmacology, and campaigned for the abolition of ECT. Dr. Corry once said: “I’d like to drive a dagger through the heart of psychiatry, but I can’t find a heart.” Please visit www.wellbeingfoundation.com for more information.
I’ve taken the words which follow from the blog of American social activist Brigid Slipka. “Promising to do no harm, means that we acknowledge that it happens. Measure, but then act on the outcomes. Evaluate, but then improve what fails. Analyze, but then share the results, so that through accountability, we ensure an honest commitment to those we serve… Sharing failure means a commitment to clients above ourselves.”