It was not what I expected. I did not recognize what happened to me. It was not at all like “depression” or “psychosis” is described in the textbooks. What I experienced inside of myself was not what I was what I appeared like from my behavior. . I looked “depressed” and “expressionless” and quiet and still from the outside but internally I was silently agitated with a chronic sensation of impending doom. This hard to describe sensation woke me up from sleep the day I fell ill. It was impossible to ignore in that it was overwhelming and I spent every moment that I was alone worrying about it.
I did not even know that I was cognitively dulled with personal memory loss until I was around other people, especially when those close to me interacted with me. Only then did I realize that I did not know how, but I tried anyway. Only then did I discover that I was maybe short of breath [I wasn’t sure] and that my face felt unnaturally stiff and I needed extra effort to form my words. This slowed me down and tired me out. I’d forget what I wanted to say in the few seconds between having a thought that I wished to communicate and carrying out the motor act of speaking. It was odd and it was disturbing. I knew that something was wrong with me but I did not know what AND I knew that no one would give me a complete physical exam to figure it out.
I still remember what it felt like to suddenly wake up with a partial amnesia and immense dread. My mind was empty of thoughts and associations.. The stream of internal schema’s that usually accompany different stimuli [from waking up and looking around or from the awareness that one must get ready for work or from feeling hungry or from seeing another person one knows] …were gone. I had no thoughts at all and I was not yet aware of the consequences of this. I didn’t feel empty I was perplexed; I was not myself; and I only felt dread, distress, fear and the sense of impending doom.
“Impending doom can be a tough-to-parse symptom. You feel as if something is very wrong—but what exactly is it? “” It feels different from anxiety, a different thing entirely and impossible to describe and very hard to endure “ In many cases, a sense of impending doom comes before rather serious medical events, like a heart attack, blood clot, seizure, or poisoning. A feeling of impending doom can often be a sign of an imminent medical event or crisis.” .Sept 24, 2019 Can a Feeling of Impending Doom Be a Symptom? – Healthline
In my case the cause of my feeling of dread and impending doom would have been obvious had medical protocol dictated the measurements of basic vital signs, especially baseline respiratory rate. My respiratory rate was very depressed at rest and my work of breathing was excessive. I was only partially aware of this, and my ability to think or communicate was very impaired and without measurement, my ventilatory failure was not visible. Apparently this is common in cases involving a period of acute neuromuscular weakness after physical illness, head injury, blood loss, etc..especially if exacerbating an already present defect/injury affecting the peripheral neuromuscular ventilatory system..
But this medical protocol of measuring important basic physiological physical signs does not yet exist in medicine or any of its subspecialties ie; cardiology, haematology, neurology, psychiatry or family medicine. And so cases of internal poisoning due to a toxic build up of metabolic carbon dioxide is most likely routinely missed and mistaken for psychological anxiety and depression.
The sense of impending doom was overwhelming and seemed to wipe out all other sensations. I had no sensation of hunger, no sensation of thirst and without these physical reminders of passing time, I had very little sense of time. I basically did not eat and if I tried [because I was at the family table], I ate very little. I just did not feel hunger. This was beyond simple loss of appetite.
I could still see and this provided me with cues that I could follow. If I saw my husband get out of bed, I did too. If he went to take a shower, I did the same. If he left for work I also left for work. I could not seem to do these things on my own but seemed to be able too used his behaviour as a cue to jumpstart mine. I did not seem to be able to act or move on my own because I could not remember my thoughts and intentions for long enough to translate them into action. It was so odd. So very odd. I guess one’s thoughts ARE part of the motor system after all.
My amnesia was partial. I remembered who I was and who my husband was and I knew where I worked and how to get there. I responded well to visual stimuli and other cues. But the associations and schema’s I usually carried in my head disappeared. Schema being “the pattern of thought or behavior that organizes categories of information and the relationships among them” I forgot entire segments of my previous behavior.. For example, when in this state, I started to do my job [I am a teacher] I then [and only then] did I find that I’d forgotten the facts, content and the schema of how I usually am as a teacher. I was dumbfounded; I had been doing the same job for 15 years. How could this be? *Schema(psychology) From Wikipedia, the free encyclopedia accessed January 25 2022
In the same vein, when people I knew came to talk with me, I “forgot” our shared schema..I forgot our shared history, our shared relationship, everything was a blank….I no longer knew how I usually conversed with them, I forgot the facts I needed in order to carry on a normal conversation and I had difficulty understanding what they were saying, as if it was too complicated for me. I did not recall how to be me yet I was physically there and I was embarrassed with this new impaired “me” and they were uncomfortable and did not know why I was suddenly “strange” in that I was definitely not my normal self. It was horrible and embarrassing and I tried to avoid any other social interaction because it was so uncomfortable and I was so weird.
I was aware of this lack of schema during the length of time my friends would talk to me and then when they left, I forgot that I was impaired in this way. . I was surprised every time I was confronted by my lack of memory. Every time was the first time…because I forgot 30 seconds after. This is why I could not discuss it with anyone. I forgot. If someone had jus asked me if I was amnesic I would have been able to respond, but not without a prompt, a cue, a reminder.
And so I was trapped, I was unable to remember anything long enough to be able to report it without help.. This is what it is like to lose one’s mind. I can recall all this now that I am recovered, even as I could not remember then. This suggests that the memories were formed but I could no longer access them until ??? What happened after my recover, to make those disappeared associations and memories of them disappearing return after a full year of that stuff being inaccessible? I think that there is a lot we still do not know about reversing memory loss.
The discussions I have had with Brigitte in preparing each blogpost on “mind and loss of mind”, over the past few decades have been invaluable in helping me to find the concepts and words to describe what I could not previously understand or convey. I just could not wrap my mind around what had happened to me, even after I recovered. Luckily [???]…. I had plenty of additional short attacks as I was recovering over the next ten years [after the initial attack] and was able to get a lot of insight into the depressive part of the bipolar syndrome after the lifting of each short attack..
Dr Kraepelin’s work also helped a lot. His descriptions and his reports of discussions with his patients, his detailed studies of the unmedicated natural progression of manic and depressive and mixed attacks were useful as a study of these attacks in their natural baseline state. All medications, for better or for ill, will change the trajectory of the illness and sometimes “trap” the patient in a zone where they are behaviourally manageable yet cannot regain their normal mood, cognitive abilities or personal memory.And that is a nightmare for these patients. And thus the patient will still require care and they will remain dependent on others and they will still be despairing of returning to normal and their doctors will be OK with that because they [the doctors] are not aware that this syndrome is a naturally remitting relapsing syndrome and so this suggests that a full recovery is possible.
Dr Kraepelin found that nearly all attacks of manic depressive insanity spontaneously lifted, [even when they lasted weeks, months or decades] and patients returned to their former lives more or less normal. Thus these neuropsychiatric symptoms and signs, although very serious and very incapacitating could suddenly lift and vanish without any treatment, but it could take a long time, during which one needed food, shelter and supervision-like a child. It was a disease that could ruin much of your life during your potentially best years.
We think that this being so, doctors should focus on returning these patients to their previous selves and should track the treatments to monitor their effectiveness in bringing back personal memory and should continue to look for better treatments to improve memory and cognition in bipolar illness. Treating memory should also clear up mood dysfunction [dysphoria and euphoria] and motor abnormalities because these are all related to one another somehow [like they are in delirium, acute or chronic] . This is the way to return the patient to their original independent and competent selves. Like we have done with me. [Thank Goodness!].
That this is not considered is why so many patients today are unhappy with their treatments; these patients know that they are still not themselves, the selves before they got sick, and that getting halfway better is not good enough, in fact it is terrible. Many of the sickest patients will no longer remember what it is to be normal , because the illness and the current treatments do not restore normal personal memory. And if the medicated person that they are is less competent than the person they used to be, patients will know it and they will resist treatment….[and we have’t even addressed the disturbing and sometimes painful side effects].
But doctors are not aware that doctors can aim to do better…..but doing better it will take a change in their point of view of this illness and it will take research that is correctly focused on the physical vital signs of the illness in its different stages [especially measuring baseline at rest respiratory rate for starters]and and this research will have to focus on restoring original levels of intelligence and of personal memory.
This is the approach that Paula and I took to restore my self, my memory, my mood, my normal appetite, my normal thermoregulation, my normal circulation, my normal motor activity and my normal motor speed. I describe these abnormal patterns in my earliest blogposts. I thought researchers and doctors and other patients would be interested. I was wrong. They weren’t. They do not understand that the point of any treatment is to restore baseline memory and cognition, normal mood will follow naturally.
Any treatment which started to restore my ability to remember my thoughts, any treatment that helped my ability to remember things that should have been simple- like my own address, even if it helped intermittently or just a bit for a little while, is the treatment I stayed with. I did not have many choices. I was not offered breathing support or help for possible infection or rehabilitative ventilatory care. My doctor had no understanding of how serious my situation was and would not have known what to do anyway and he only had so many psychiatric medications to offer me.
The treatment that I stuck with and that eventually saved me, although it was a gradual and difficult process, ended up being Paxil. Nothing else helped my memory. Every day, many times a day Paula or I would quiz me on my address. Paxil helped me to begin to retain my memory for my address. Even though I was tested many times a day, I did not relearn it with practice. . At first the Paxil [with a small amount of Ativan to calm me down for 6 weeks or so till the Paxil began to take effect] eventually helped rid me of that “sense of doom” sensation but only a little with my memory or cognition [I figure that they were both affected together and would both improve together]. The improvement of memory and cognition took ten years to become stable and reliable. Ten long years during which I could not return to work because I did not know if I would have an “on” day or a “off” day , improvement was intermittent at first.
Some of the assumptions I had came directly from Kraepelin’s work. I had read Kraepelin’s work, long before I got sick in my undergraduate psychology days and even though my memory was very impaired for that very long and unpleasant year , my reasoning ability was kind of still there, lurking below the surface and I was able to steer my fledgling, half instinctive impulses toward finding an effective treatment in the right direction for recovering my baseline self. . I do not really understand how but it seems that some of my problem solving original traits remained in sufficient amounts to help guide me and to kind of recall what I had learnt from Kraepelin. I “knew” that my memory and cognition could be completely recovered because of Kraepelin’s studies. I could not verbalize any of this, of course, it was partly under the surface stuff, I think. I just had a vague nonverbal sense ….which I think came from whatever neurons were still getting through to my conscious self, somehow.
I was almost fired from my job because I could not teach when I was so sick and for weeks I kept trying because I kept forgetting that I had lost the schema, the content of what I was teaching. When someone finally got me to a doctor, I had a vague sense that I should be on “sick leave” and that was one of the few things I managed to ask spontaneously before I forgot. I was put on leave and this is what saved my job.
One of the early side effects of the Paxil [in the second year of use] was a sudden unexpected abrupt onset of emotional lability quickly turning to euphoria in the space of a couple of hours. I am not sure, but I think that my respiratory rate became fast and chaotic [with apneas] during this episode. I am not sure. I only knew that mania would be even more serious a state than depressive insanity had been. and I insisted that my husband take me to emergency, I was high as a kite by then and I was prescribed lithium in large doses.
I learnt because of this experience that too much lithium can chemically produce the same state of depressive insanity in doses. In a week, I became almost zombie like, even worse than my original attack of depression. Ironically my mother saw me go through these transformations and suggested I lower the dose of lithium, which I did.
I lowered it until I was no longer impaired intellectually, depressed-zombie-like and yet I was still able to manage the side effect of frank mania. For years every day was a balancing act with the lithium, I was extremely sensitive to its effects and this was not helping me to remember my address daily. I often took doses of lithium that made me hypomanic and kept the real mania state at bay if being hypomanic meant my memory worked better. I stayed on 30 mg of Paxil instead of the 40 mg I had been on before my one and only manic attack. I must say that mania is extremely scary. One really looses their mind even more completely in serious mania. It is like involuntarily being on a recreational drug and having no control over it whatsoever. Mania can also cause memory loss [especially retrospective] but the patient does not know this and the patient becomes bombarded with fast moving thoughts that are pushed out their mouths as speech, almost involuntarily, along with the increased reflexes speeding up locomotor activity as well as speeding up responses to auditory and visual stimuli. I only experienced this for a half of day but I found it extremely unpleasant and frightening; the loss of control is astounding, even as one experiences drug like euphoria.
After 10 years of Paxil and lower and lower doses of lithium I finally became stable cognitively and stopped being hypomanic on the Paxil and no longer needed the lithium and have not been manic or hypomanic since. Finally I am confident that I can continually remember my address AND my schemas and that I can be more confident that my abilities won’t suddenly disappear.[but I still occasionally test myself when I awake to check that I know my address in order to breathe a sigh of relief when I do].
The Role of Paxil in my Recovery
Before my first attack of bipolar depression. I became physically weakened by several minor illnesses that I suffered for over a month. I was also going through a major hormonal change [menopause-hormones can affect the ventilatory neuromuscular system]. And I was working in an old heritage building that was over 100 years old with faulty ventilation systems in the middle of an area surrounded by a scientific industrial farm raising cows and corn using unknown amounts of fertilizer and other chemicals. So there were any number of respiratory challenges involved all at once.
Once I fell ill, I lost weight [which made my breathing a little easier-less of a load, if you will] and suffered muscle atrophy affecting my arms and thighs. Only I knew this because only I noticed, [when undressed]. No doctor examined me. No one else knew. Muscle weakness and accidental malnutrition and dehydration most likely exacerbated the effects of my depressed respiratory rate. We found that I have a ventilatory defect/injury causing my respiratory rate to be depressed and also likely unable to defend my respiratory acid base status very well, especially when rather lethargic, and trying to cope with and recover from a number of minor but significant illnesses AND hormonal changes AND exposure to higher levels of indoor carbon dioxide. [ I worked in a poorly ventilated and overcrowded 100 year old college and surrounded by foul smelling chemicals from the farm nearby and often driving in and through the corn fields probably full of fertilizer must have combined to overwhelm my system].
Given my mental confusion and my depressed respiratory rate and my impaired ability to recover from minor infections and viruses, I think that adding neuromuscular weakness to the mix must have been very detrimental to my ability to adequately keep moving air in and out of my body. It took a long time for me to recover….around 10 years to recover in a dependable stable way. with the help of 30 mg of Paxil.
I think that Paxil, a serotonin agonist, has stimulating actions on repair of the neuromuscular skeletal system.. And modern research studies on serotonin and SSRI’s and other serotonin agonists may be proving me to be correct. Using Paxil alone is however a very slow process with many dangerous side effects if used alone without other supportive medical, nutritional and rehabilitative measures. A lot of research needs to be done on the best treatment or combination of treatments to treat conditions which may eventually prove to be dose related hypercapnic encephalopathy from different levels of neuromuscular ventilatory failure.
Regarding the regenerative properties of SSRI’s , serotonin and other serotonin agonists;
“we concluded based on human and rodent studies that SSRIs affect electrical muscle activity, structural properties and energy metabolism in skeletal muscle tissue. However, these changes varied according to pre-existing metabolic and functional conditions in the rodents and humans”. Pharmacol Res . 2018 Oct;136:194-204. Selective serotonin reuptake inhibitors affect structure, function and metabolism of skeletal muscle: A systematic review Ana Elisa Toscano Muscular and mitochondrial effects of long-term fluoxetine treatment in mice, combined with physical endurance exercise on treadmill
“In this study, we provided basic protocols for assessing physiological strength. Skeletal muscle is made of different types of fibers that form the basis of muscle plasticity in response to various functional requirements. This study confirms that long-term treatment with fluoxetine combined with prolonged exercise improves physical performance and muscle strength. Adaptive changes are strongly influenced by various structural, metabolic, and functional characteristics of individual fiber types. We observed that the exercise- fluoxetine protocol improved mitochondrial function in skeletal muscle, increased muscle strength and induced anxiolytic-like effects“. Muscular and mitochondrial effects of long-term fluoxetine treatment in mice, combined with physical endurance exercise on treadmill Life Sci 2019 Sep 1;232:116508. François Coudore
The presence of serotonin receptors in T-tubules [of skeletal muscles] suggests a role for serotonin in excitation-contraction coupling and (or) an effect in skeletal muscle fiber repairing. Identification and Localization of a Skeletal Muscle Serotonin 5-HT2A Receptor Coupled to the Jak/STAT Pathway. J Girard, CELL BIOLOGY AND METABOLISM| VOLUME 272, ISSUE 23, P14825-14829, JUNE 1997
Serotonin and its agonists seem to have stimulative properties on the regeneration of a damaged liver as well [damaged livers related to respiratory acidosis or low pH of the brain if not the blood. Liver damage can also cause encephalopathy and so the use of Paxil may help out the liver as well as the skeletal muscles. see Hepatology 2014 Jul;60(1):257-66. doi: 10.1002/hep.26950. Evidence for serotonin as a relevant inducer of liver regeneration after liver resection in humans Gruenberger et al
Serotonin is also helpful to bone metabolism and bone marrow from where our blood cells come and so on and so on… 2017;1033:35-46. doi: 10.1007/978-3-319-66653-2_3. Regulation of Bone Metabolism by Serotonin Mawe et al
………there is lots of research on the regenerative stimulating properties of serotonin and its agonists so it makes sense that it helps in cases of the encephalopathy causing episodes manic depressive insanity. * Eur JofNeurosc. 2012 Aug;36(3):2347-59. doi: 10.1111/j.1460-9568.2012.08138.x.Epub 2012 May 27. Serotonin of mast cell origin contributes to hippocampal function.
And it is starting to look like Serotonin and SSRI’s can trigger repair of brain soft tissue in key parts of the brain responsible for many things, including personal memory and cognition, reversing injuries and restoring baseline mental function, slowly though, like it in my case, despite the setbacks and side effects.
And I continue to be well, albeit with a few short set backs now and then.