We think that many of these syndromes can be cured by supportive medical treatments after obtaining birth histories, paediatric histories, occupational histories and adult medical histories from the friends and families of these patients. . If Paula had been properly worked up, the cause and the treatment for her mostly dysphoric amnesic attack would have been obvious.
We had an epiphany a few blogposts ago and now have a much better idea of why people can become “strange” overnight. It involves sudden acute loss of autobiographical memory, a form of retrograde memory, accompanied by sudden cognitive impairment in what looks superficially or behaviorally like major or bipolar depression.
We are not scientists or doctors or even writers. This investigation was thrust on us by what happened to Paula.
Paula, my friend and colleague and I have been trying to describe what happened to her, over 20 years ago [she is fine now].
Despite her clear description that she was able to give at the start of her illness when she was still able to tell the doctor, no one understood that she had suddenly lost her autobiographical memory;
Paula ” I woke up one night in a panic, with a sensation of anguish and distress which lasted over a year. I drove to work, said hi to my friends and colleagues and then was shocked to realize that I had no idea what else to say [unusual for me] and then I went to teach my class and realized to my horror, that I’d lost all memory of the content. I did not know what to do. The students got frustrated with me and started jeering, they weren’t kind. No one was kind. I had been a very popular and very entertaining teacher. It was a nightmare, and it lasted over a year before lifting.”
She found that she could add very little after that. She was too exhausted.
The doctor understood from this that she was depressed.
Without her memory, her behavior changed, she became reclusive, avoided people she knew, took sick leave to avoid teaching, was embarrassed and felt guilty about her inability to do her job. And she was trapped by her inability to understand or explain what had happened to her. Paula had a normal reaction to her loss of memory, distress, surprise [everytime she tried to do anything] guilt [lots of failing when people were depending on her] and embarrassment [she looked completely incompetent [because she suddenly was]. It was such a public affair. Everyone saw that she was “off”” somehow. People began to judge her, and/or avoid her, it was so unsettling to witness. [I remember that it was also inexplicably unsettling to be with her.]
And on top of all that, the continual internal unbearable sensation of fear, anguish, distress, stiffness [we think now this was a form of dyspnea] was felt by her as a separate physical condition which interfered with her sleep and distracted her from her memory loss.
People and doctors assumed that she had family problems, that she was depressed, that she was angry, that she was crazy [only friends thought this-not doctors- doctors thought she was depressed], lazy,… – anything but thinking that she was amnesic. She had lost much of her autobiographical memory and had cognitive impairment to boot….. From one day to the next. For over a year. She was not depressed , but she did despair a little.
We recently found research on memory, memory loss, loss of autobiographical memory and retrograde amnesia and finally, after 20 years, found the terms that had eluded us because Paula experienced this from the inside rather than someone noticing this about her.
Paula did not repeat herself. She couldn’t. She forgot her thoughts, after she thought them. Then she worried all day long, silently to herself because this was so strange. And from one day to the next she forgot a lot about herself, how she usually interacted, how to do her longtime job, how to read at University level. Both retrograde and anterograde memory was impaired, as well as cognition [she was now reading at only a grade 8 level and she had no clue what was happening to her.
Please look at and follow our blog where Paula and I have been trying to figure out what happened 20 years ago. Paula remembers how she was impaired then – when she could not remember – because she now can retain the memories of this impairment when she recovered. That is pretty cool!
Please follow us as we figure things out bit by bit with the help of researchers who study memory.
The latest of our blog posts will continue to examine the theme of retrograde amnesia in bipolar attacks and in major depression and metabolic encephalopathies, delirium and potentially reversible and preventible dementia.
We are just beginning to examine how Paula herself, and me – her friend and colleague, and her doctor, and her family, and her friends, and colleagues all saw her behaviour change overnight and yet never considered amnesia because apparently, no one considers amnesia unless it involves repeating out loud instead of fleeting forgotten thoughts and mental confusion.
The earlier parts of the blog describe how we discovered that Paula’s ventilatory system is damaged and her regular breathing at rest is depressed. This is a sign of ventilatory failure.
Yet doctors tend to measure only on lung function [hers is great] and not on the motor part of moving the air in and out of the lungs, the ventilatory pump system. A non-invasive way to check the function of the ventilatory pump is to count respiratory rate to see if it is normal or abnormal at rest- in health and/or in illness. [chronic hypercapnia may have no symptoms at all other than abnormal R.R.]. Doctors never formally count respirations for one minute at rest or check for active exhaling with help of abdominal muscles [a sign of respiratory distress]. So they miss ventilatory pump problems their patients may have predisposing them to ventilatory failure after they get an infection or virus.
We think that Paula’s broken breathing and her periods of amnesia with lethargy or excitement are connected and we discuss this also.
Our earlier posts talk mostly of her “broken Breathing” and effects on mental status, when her physiological compensation is overwhelmed by infection, inflammation, asthma, viruses, poor body condition [due to illness] etc… .
But the enigma of “mental” patients and some neurological patients may be made clearer by examining whether they are amnesic [retrograde and anterograde] as well as suddenly cognitively impaired, and know it but do not know it at the same time, because they forget and because they cannot recognize the syndrome and so cannot communicate what is wrong.
Metabolic encephalopathy is like that. [see the previous post ].
Paula and I are just beginning to examine this theme……For example, Paula now realizes that she has had minor episodes of retrograde memory loss with cognitive impairment , since the age of 19 and had no idea what they were. These episodes were very frightening even then.
It is odd how dependent we all are on having the correct language to understand and explain our internal experiences, especially if these experiences are indescribable. Plus no one can relate to what Paula experienced,, ….because these internal experiences are that abnormal and disturbing.
No one really imagines that you can lose your mind overnight and no one notices. And it is really really bad, when it happens. It could happen to anyone and unless treated medically, it will wreck what is left of your life !
Paula and I never thought to attribute the word amnesia, retrograde amnesia or loss of autobiographical memory to what Paula experienced. Neither did anyone else. Amnesia and sudden cognitive impairment is curiously very difficult to recognize. It is certainly also difficult to imagine such a syndrome.
It has been so helpful to find a name for what happened to Paula.
We know that if the doctors had asked about memory, if they had used pointed questions with cue words to help draw out information, following up on what Paula said initially, Paula would have been able to respond to those cue words, even though she had immense difficulty spontaneously naming her thoughts or experience on her own. She had lost a lot of language and a lot of abstract thought [cognitive impairment]. But she still had some fleeting flashes of insight.
It bears repeating, we think, … that many of these syndromes can, in our opinion, be cured by supportive medical treatments if the doctor obtains the patient’s birth history, paediatric history, occupational history and adult medical history. Family and friends can contribute this information.
In the case of Paula,[ and others we have talked to about their seriously incapacitating “mental” illnesses], the birth history, the paediatric history, the occupational history [including the occupational history of the parents, [if it affected the family home physical and chemical environment] and the adult medical history of the patient was very pertinent. .
In our opinion, If Paula had been properly worked up, the cause and the treatment for her dysphoric amnesic attack would have been obvious .
Since the doctor did not understand how to help Paula , we had to find another way to help her. We did this by tracking and monitoring what limited treatments and medications she did receive, to see which began restoring her memory; it took 10 years of careful work, of trying different medications, a lot of side effects -some dangerous, and a lot of luck, to restore her to her baseline high mental function. [we did not discuss any of this with the doctor, he was too biased and too clueless].
As you can imagine, psychotherapy was not helpful, when the issue at hand is retrograde amnesia and cognitive impairment, but what can I say.
We knew that psychotherapy would not help, especially when the doctor would not listen.
Here is one early example, Doctor; “Are you depressed?” Paula: “No, I am confused, I can’t remember how to do my job.” Doctor: not “hearing” her, – looking at her level of education; ” that must be loss of confidence -it is normal when you are depressed. You cannot be confused ” [followed by an endless 15 minute medical lecture on why she is not confused] . Paula; “I am not depressed”. Doctor, ” Depression is nothing to be embarrassed about, it happens to a lot of people.” Paula, …. [ feeling weak and out of breath ]….gives up arguing with the Doctor and says nothing.
And for ten years of psychotherapy, the doctor was none the wiser…despite Paula’s endless efforts to communicate.
And this is pretty common. You cannot see what you do not look for.
Theory of mind does not seem to allow for sudden acute, then chronic hidden autobiographical memory loss as a cause of strange new behaviour or distressed mood.
Please share these insights and findings with others.
Paula and I hope that these discussions will eventually result in better investigations and treatments for major depression and remitting/relapsing attacks of manic depressive insanity and other serious “mental” conditions.
Apparently retrograde amnesia occurs in cases of remitting/relapsing multiple sclerosis [M.S]. also. At least this is what current research suggests.