I thought I was going to write about 2019, but this came out...
I did well under the regime embarked upon in 1998 as set out in earler notes in this blog, resurrected from back then, with some rough patches, for a number of years. I carried the burden of too much time largely bedridden in the 1990s and damage to my spine from an accident in 1986 which has made pain management difficult in these later years, though not earlier. My regime fell away in part because I was unable to convince new doctors in new location of what I was wanting to do, improving mitochondrial performance. Some of the elements thought too complicated to understand, or indeed I had to explain to one or two what mitochondria did. This was hard to suffer for some medical authority figures. It became difficult to get T3 and pregnenolone.
The pain caught up and enveloped, with chronic daily headaches, some mini-stroke symptoms and evidence on MRI, poor proprioception, dizziness, increased fibromyalgia and myofascial pain symptoms. Sleep difficulties, long treated with drugs, including Stilnox, but later identified as sleep apnea. Reflux, irritable bowel and bladder, Menieré's Disease, mild osteopenia and osteoarthritis. These are all things, boxes of disorder, named diseases, for which the doctor rule book offers this and that. "No, you aren't having panic attacks, you are one of a small number of people we have seen who have sensitive brains. We can't help you. It's all very well that your career has been based on seeing issues before others do, but your system is now reacting to everything."
Thirty years ago when CFS and FMS were unheard of I was given Ativan and Rohypnol and then another benzodiazepine of notoriety, Xanax, to wean off the Ativan. This is a recipe for absence from the planet with a sense of being sozzled by the finest red wine. Outside responsibility, beyond coherence. Necessary to abandon or go further into delirium.
Then I was given a circus of antidepressants that caused stomach bleed and extreme headache and did little else other than, in the case of Prozac, making me feel like a very old car on rocket fuel. No diagnosable depressive illness, though my unexplained, unnamed, unresolved sick state was naturally depressing.
I had been told by a government medical officer that I must see a psychiatrist. The first, a refined orientalist, told me after several meetings that he could not see me any more as each time he developed more of my symptoms. The second invited us to his Japanese style house in the woods for lunch and took me aside to give me a bag of green leaf with the comment that it might be "more useful than that stuff I'm giving you in the office." It was a B-grade experience akin the his Rohypnol and Ativan. He got the green leaf, I believe, by trading scripts for Rohys. The third had two diagnoses only, medication-responsive depression and medication-resistant depression. He had written a paper on medication-resistant depression which had been described as brilliant. I was to drop the tricyclic I was taking and start next Monday on a monoamine oxidase inhibitor (MAOI). I did. The family went to work and school, I took my tablet, by midday rolling on the floor in screaming pain. I did that for three days. My wife reported to the shrink for my incoherent self and he said he would admit me to his hospital ward. But that weekend he left for Disneyland. We never met again. I went cold turkey.
I have since then been offered the antidepressants commonly (tricyclics, SSRIs and the newer SNRI Cymbalta) prescribed for fibromyalgia. The smallest doses of any of these cause crippling headache; I've retried in hope but repeatedly failed. Gabapentin came out of patent and became available, it did something for headache and fibromyalgia though now the literature said it did not. As soon as it was out of patent, the manufacturer released Lyrica, which has gone on to be a global best seller, remains in patent, and has many addicted to it. It seemed to be generating more symptoms akin to those it was meant to fix, and was addictive. This week, entering a medical building to visit my dentist, I shared a lift with a medical specialist of the variety who come to this regional town from Sydney with shopping basket of patient files. "You're dressed for winter" he noted on this warm early summer morning. "Pain management" I said. "Much better than Lyrica." "Indeed yes" he said as I slipped away out the door. Gabapentin and Lyrica seem to be molecules sufficiently different from the neurotransmitter GABA to be patentable and rich-making, but seeking to emulate much of what GABA does. GABA perhaps the definition of 'laid back', the opposite of excitatory serotonin, the wunderkind of depression treatment for decades now. Gabapentin and Lyrica limited in value, and with significant side effects. It is in the nature of modern medicine that these drugs may be prescribed because they are 'evidence based'. By virtue of a complex process of clinical trials and regulatory approvals. But no one is going to make such investment in how to dose with GABA: no patent, no profit at all... But of course a tiny tiny virtue. Because there is a drug approved for fibromyalgia, Lyrica the first such, we can say that fibromyalgia exists!
---
There is much more that could be told. I am fortunate in having a head with experience in research. I am fortunate in having the internet for research. I am fortunate in having a public service pension that has kept my family out of the gutter at times, albeit by enduring the sneering and scoffing performances of some forensic examiners of my condition. And then there was the glamorous GP who had on her wall her BMW advanced driving certificate and her membership of the New York Academy of Science (I had received the latter certificate too, as prize for magazine subscription) who sneered at me saying "There's nothing wrong with you, you just don't like your job." I was at the time head of a team of 50 experts advising the Australian parliament on all things. From which I had crashed very visibly, as early from my post as ambassador to China. To lose wondrous posts for imagination and drive, to fall from 40,000 feet in quiet grief. And have such said. The Emerge international scientific symposium on ME/CFS in March 2019 was broadcast online. I was not well enough to attend. A paper to confirm that there are problems of mitochondrial performance, as I had argued for two decades and as in papers earlier in this blog. And another scientist who said "Doctors know that they should do no harm. They also should know that they should not humiliate." We are not yet at such a point. Doctors still tend to believe that only what they know can be right.
My youngest child, now 36, once gave me the crippling advice "dad, dad, just be the better person". How difficult that advice is when you really want to yell a bit.
I did well under the regime embarked upon in 1998 as set out in earler notes in this blog, resurrected from back then, with some rough patches, for a number of years. I carried the burden of too much time largely bedridden in the 1990s and damage to my spine from an accident in 1986 which has made pain management difficult in these later years, though not earlier. My regime fell away in part because I was unable to convince new doctors in new location of what I was wanting to do, improving mitochondrial performance. Some of the elements thought too complicated to understand, or indeed I had to explain to one or two what mitochondria did. This was hard to suffer for some medical authority figures. It became difficult to get T3 and pregnenolone.
The pain caught up and enveloped, with chronic daily headaches, some mini-stroke symptoms and evidence on MRI, poor proprioception, dizziness, increased fibromyalgia and myofascial pain symptoms. Sleep difficulties, long treated with drugs, including Stilnox, but later identified as sleep apnea. Reflux, irritable bowel and bladder, Menieré's Disease, mild osteopenia and osteoarthritis. These are all things, boxes of disorder, named diseases, for which the doctor rule book offers this and that. "No, you aren't having panic attacks, you are one of a small number of people we have seen who have sensitive brains. We can't help you. It's all very well that your career has been based on seeing issues before others do, but your system is now reacting to everything."
Thirty years ago when CFS and FMS were unheard of I was given Ativan and Rohypnol and then another benzodiazepine of notoriety, Xanax, to wean off the Ativan. This is a recipe for absence from the planet with a sense of being sozzled by the finest red wine. Outside responsibility, beyond coherence. Necessary to abandon or go further into delirium.
Then I was given a circus of antidepressants that caused stomach bleed and extreme headache and did little else other than, in the case of Prozac, making me feel like a very old car on rocket fuel. No diagnosable depressive illness, though my unexplained, unnamed, unresolved sick state was naturally depressing.
I had been told by a government medical officer that I must see a psychiatrist. The first, a refined orientalist, told me after several meetings that he could not see me any more as each time he developed more of my symptoms. The second invited us to his Japanese style house in the woods for lunch and took me aside to give me a bag of green leaf with the comment that it might be "more useful than that stuff I'm giving you in the office." It was a B-grade experience akin the his Rohypnol and Ativan. He got the green leaf, I believe, by trading scripts for Rohys. The third had two diagnoses only, medication-responsive depression and medication-resistant depression. He had written a paper on medication-resistant depression which had been described as brilliant. I was to drop the tricyclic I was taking and start next Monday on a monoamine oxidase inhibitor (MAOI). I did. The family went to work and school, I took my tablet, by midday rolling on the floor in screaming pain. I did that for three days. My wife reported to the shrink for my incoherent self and he said he would admit me to his hospital ward. But that weekend he left for Disneyland. We never met again. I went cold turkey.
I have since then been offered the antidepressants commonly (tricyclics, SSRIs and the newer SNRI Cymbalta) prescribed for fibromyalgia. The smallest doses of any of these cause crippling headache; I've retried in hope but repeatedly failed. Gabapentin came out of patent and became available, it did something for headache and fibromyalgia though now the literature said it did not. As soon as it was out of patent, the manufacturer released Lyrica, which has gone on to be a global best seller, remains in patent, and has many addicted to it. It seemed to be generating more symptoms akin to those it was meant to fix, and was addictive. This week, entering a medical building to visit my dentist, I shared a lift with a medical specialist of the variety who come to this regional town from Sydney with shopping basket of patient files. "You're dressed for winter" he noted on this warm early summer morning. "Pain management" I said. "Much better than Lyrica." "Indeed yes" he said as I slipped away out the door. Gabapentin and Lyrica seem to be molecules sufficiently different from the neurotransmitter GABA to be patentable and rich-making, but seeking to emulate much of what GABA does. GABA perhaps the definition of 'laid back', the opposite of excitatory serotonin, the wunderkind of depression treatment for decades now. Gabapentin and Lyrica limited in value, and with significant side effects. It is in the nature of modern medicine that these drugs may be prescribed because they are 'evidence based'. By virtue of a complex process of clinical trials and regulatory approvals. But no one is going to make such investment in how to dose with GABA: no patent, no profit at all... But of course a tiny tiny virtue. Because there is a drug approved for fibromyalgia, Lyrica the first such, we can say that fibromyalgia exists!
---
There is much more that could be told. I am fortunate in having a head with experience in research. I am fortunate in having the internet for research. I am fortunate in having a public service pension that has kept my family out of the gutter at times, albeit by enduring the sneering and scoffing performances of some forensic examiners of my condition. And then there was the glamorous GP who had on her wall her BMW advanced driving certificate and her membership of the New York Academy of Science (I had received the latter certificate too, as prize for magazine subscription) who sneered at me saying "There's nothing wrong with you, you just don't like your job." I was at the time head of a team of 50 experts advising the Australian parliament on all things. From which I had crashed very visibly, as early from my post as ambassador to China. To lose wondrous posts for imagination and drive, to fall from 40,000 feet in quiet grief. And have such said. The Emerge international scientific symposium on ME/CFS in March 2019 was broadcast online. I was not well enough to attend. A paper to confirm that there are problems of mitochondrial performance, as I had argued for two decades and as in papers earlier in this blog. And another scientist who said "Doctors know that they should do no harm. They also should know that they should not humiliate." We are not yet at such a point. Doctors still tend to believe that only what they know can be right.
My youngest child, now 36, once gave me the crippling advice "dad, dad, just be the better person". How difficult that advice is when you really want to yell a bit.
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