Unmedicated

Phases of Medical Thinking - 1950's to 2000

Quakery and fads have surrounded medicine since the start of time. But mainline medicine has gone through phases as well, both good and bad. Following the discovery of penicillin during WW2, post war medicine boomed, especially in pharmacology, which was just as well, because there was an unspoken epidemic of syphilis with so many ex-servicemen returning with the infection. Here in Australia I have read that it is estimated that 10% of babies born in the 5 years post war, suffered from syphilic effects. Thank goodness for penicillin, but apart from the medical treatment required, the fear of stigma affected couples' mental health significantly.

The rapid growth of medical and pharmacology industries in the 50's, lead to a new period of 'enlightenment' in the 60's, when there was a sense that modern medicine could cure anything - "there is a pill for that". In popular culture, 'happy pills' and 'mind expanding' drugs became common. In mental health, similar optimism flourished with new anti-depressants, anti-psychotics and ECT treatments.

By the 1970's, the negative effects of the excesses of the 60's became apparent. Addiction to 'happy pills' was rife. A lot of the new wonder drugs were found to have all sorts of side effects. Less publicized, was a growing recognition that many common medications were in fact addictive - after prolonged treatment, the efficacy of the drug declined so increased dosage was required, and an upward spiral ensued. If the dose was not increased, the original symptoms returned, sometimes worse. In mental health, 'downers' went too far, so 'uppers' were needed to recover, but then the patient had to be calmed down again. There was a big swing to psychotherapy, with or without medicinal assistance. In the broader medical scene, diagnostic techniques had improved so much that what were once thought of as a single condition, were now found to have multiple variants and multiple concurrent conditions were now being identified.

In the 1980's, as a flow-on from the 1970's trends, there was a big movement to classify intransigent conditions as 'psychosomatic'. It was almost a reversal of the 60's thinking that all medical conditions were physiological and could be cured with a pill. But something else was happening that was not generally acknowledged for about 10 years - as patients were taken off medications because their condition was now deemed to be psychosomatic, they started to have extreme symptoms that were seen as supporting the psychosomatic mental illness diagnosis.

Only in the 90's were these symptoms finally recognized as 'withdrawal' symptoms. It wasn't just that the symptoms of the original unmedicated condition returned, but different neurological symptoms altogether appeared, such as hallucinations, palpitations, phobias, neuroses and psychotic episodes.

A Personal Case

In her pre-teens, my wife had a common childhood accident and acquired a traumatic brain injury with consequential epilepsy. Over 30 years, her neurologists were unable to attain satisfactory control with the available anti-convulsant drugs and resorted to benzodiazapine tranquilizers. One of the confusing issues was that outwardly her seizures appeared to be grand-mal (in the parlance of the day) but she always remained conscious which did not correlate with grand-mal seizures.

In the early 1990's after yet another referral to another neurologist, supposedly the best professor in the country, he decided to use new equipment for combined EEG & video 24 hours monitoring. From his analysis of the results, he declared that she didn't have epilepsy at all, but that it was all psychosomatic and proceeded to take her off all her medication (slowly? over 7 days) and referred her to the psychiatric ward. A range of anti-psychotic drugs were tried with no improvement and various side effects. Occasional seizures resumed but more worrying were the panic attacks, anxiety and apparent detachment from reality. With no definitive treatment, she was referred on to an out-patient clinic.

At the out-patient appointment, she had a very strong major seizure, but the psychologist just watched on with no reaction or concern over what was happening. Being of absolutely no use at all, we were effectively sent home to fend for ourselves.

Apart from recurrent seizures, the worst lasting for 12 hours straight, more worrying were the development of 'mental' symptoms, anxiety, panic attacks, phobias, hallucinations (imagine seeing and feeling spiders crawling up your body), palpitations and inappropriate language outbursts (rather like touretts). Over the next 12 months she had 3 major status episodes and was taken to hospital, being non-compos for up to 5 days at a time. The first time, the ER department were sure she had taken an overdose of something, but despite my reassurances that she hadn't, pumped her stomach with charcoal. The problem was that "God" has spoken and declared it non-epileptic. The second time, she was sent to a (psychiatric) rehabilitation hospital for observation, but basically not knowing what to do. It was at this time that we noticed major gaps in her memory developing - brain cells were dying.

We started to look into a 'movement disorder' clinic as an alternative diagnosis to the epilepsy, but it was more focused on parkinsons, touretts, etc. Then there were some suggestions that these new symptoms might be related to withdrawal from the benzodiazapine tranquilizers and we found a support group for such sufferers. We learned so much from this group and their publications, especially that it is a common condition that the mainline medical community still didn't really appreciate. Their support group meetings with relaxation and meditation therapy got us started on the long road to recovery. In their experience, coming off benzodiazapine tranquilizers should be VERY slowly, reducing by half over a period of 1 week for every year the patient has been on them. My wife had been taking them for over 20 years, so reduce by half every 20 weeks. The doctor's stopping the full dose over 7 days was totally inappropriate.

On the 3rd status occasion, the psychiatric registrar was on duty in the ER at the time, and observing her seizures, immediately said "no way" was it psychosomatic (brave man) and sent her back to the neurology hospital. An EEG was immediately fitted and lo and behold, traditional epileptic brain activity was observed, so her original medications were resumed.

At the followup out-patient appointment, the professor wisely brought an assistant, which was just as well because I felt like punching the daylights out of him. Of course there was no apology which could imply liability. We should have sued for malpractice, but I couldn't put my wife through any more, beside which her memory had been so severely affected she wouldn't be able to testify.

Despite the seizures returning to pre 'treatment' levels, it took another 12 month to recover from those horrible withdrawal symptoms.

We were chatting with a paramedic one day and related the above story. He said, "You were XY'd were you?", using the professor's initials. "You were not the only one".

The Swing Back

In 1993, the renowned Australian Dr Beatrice Faust, BA, MA, PhD, LLC, AO, published her book "Benzo Junkie", an incredibly well researched book (with no less than 45 pages of Notes, Glossary and Indices). With her reputation as author, women's rights activist, president of the Victorian Abortion Law Repeal Association, co-founder of the Women's Electoral Lobby and co-founder of the Victorian Union of Civil Liberties, the medical establishment took notice. So the devastating effects of withdrawal from drugs of addictive medications, especially the commonly prescribed benzodiazapines ('Mother's little helper'), were finally acknowledged by mainstream medicine.

Postscript

In the early 2000's with a better professor of neurology, much better computerized monitoring equipment with 10 times the sensitivity of that used in 1991, now not only confirmed the epilepsy diagnosis, but identified at least 2 loci where seizure activity originated in the brain. So with 2 different types of epilepsy, it is no wonder that all the neurologists all those years ago were confused by conflicting symptoms. It also ruled out surgery as an option. Further a PET scan of the brain, clearly shows the area of the original injury, almost 2cm in diameter, where there is decreased blood flow, 40 years after the event.

Further knowledge of the side effects of some common anti-epileptic medications has also come to light. High doses of carbamazepine (Tegretol) can have toxic effects, especially affecting vision. Sodium Valproate (Epilim) can affect bone marrow function leading to anemia and it is also an appetite stimulant and  contributes heavily toward obesity. Further, Sodium Valproate and to a lesser degree, primidone (Mysoline), have been found to be associated with birth defects and so are not recommended during pregnancy.

Conclusion

'Mental Health' conditions are often complex multi-faceted. There can be inherited aspects, learned/acquired during childhood, acquired (mental and physical) in adulthood, physiological conditions and pharmacological effects.

If you are in treatment or about to embark on this process:-

• Most importantly, get an advocate to support you through it all.

• Research, research, research!
  

• Research your symptoms and try and get a handle on the medical terminology used.

• Research available doctors and therapists. The best ones put their CVs on-line. Ask for referrals from other patients or a medical/nursing friend. Look for someone that will take a wider holistic view. Narrow field specialists will only see conditions that they specialize in. Be ready to ask for a second (or third) opinion.

• Research suggested medications, especially side effects.

• Research rehabilitation options.

• Question everything, openly.

• Be ready for a long haul. There will be a lot of little steps, sometimes you will wonder why/how some small thing can help the outcome.

• Find and build a support network.
  

• Be kind to yourself. Celebrate the little steps of progress.

  
  
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