If you havn’t read chapters I & II yet, find them here to catch up:
trauma, hysteria, & psychogenic illness cont.:
Okay so as previously mentioned, I tend to develop very rare side effects to psychotropic medications. Many give me neurological symptoms. The dementia-like effect the Seroquel gave me is one example of this. But the first one I had was a dystonic reaction. And the first time it happened was I was 20.
One afternoon, half of my mouth started to droop, like it was being pulled down towards my chin. I wondered if I was having a stroke.
Half an hour later, my neck on that same side had seized up, my shoulder pulled up to my ear, one side of my lip still pulled toward my chin.
My mom was feeling fairly concerned and walked me to a neighbor who works as a physical therapist, to see if she could get my neck to release its hold. That neighbor called a friend of her’s who was a doctor to see if he had any guesses as to what might be happening. Another half-hour later, my throat started to twist, and my tongue was curling back to touch my uvula, causing me to choke and gag at the same time. Some muscle in my throat was continuing to twist into a tighter position and it's was becoming difficult to breathe.
Everyone was googling what to do and the neighbor was giving her doctor friend a play by play of the situation, and once the choking started he said to call 911. My mom dialed immediately and an ambulance arrived in minutes. She told the paramedics about the anti-psychotic I started just a week prior, as it was the only thing she could think of that could be somehow the culprit. They gave me an IV as I sat on the kitchen floor, and pumped benedryl into it the second they loaded me into the ambulence. Within 30 seconds all the muscles released. The paramedic told me it was a dystonic reaction, and that in his 30 years as an EMT he had only seen this one other time. It’s a rare but well known adverse reaction to anti-psychotics. I got off that anti-psychotic but thereafter sometimes had similar involuntary movements to many others.
So during my year of Seroquel, I occasionally had these sorts of twisting muscle spasm events, even though was on a medicine called Cogentin that treats the adverse effect of dystonia. Maybe once every few months I would have a little attack of them, and I never really knew why they happened since I was taking the med that prevents them religiously, and Benadryl didn’t seem to help much in these cases, but didn’t worry much about them.
About seven months after I got off of Seroquel, about a week after I got out of the Santa Fe PTSD center with Franklin, I had an attack of these twisting spasms and found it very odd, since I was no longer on any antipsychotics. There is a condition called Tardive Dyskinesia (TD) that a person can develop due to use of antipsychotics but, unlike dystonic reactions, once you have it it's a lifelong illness with no cure (it is incredibly rare, but I have met people with it and its fucked up that it can even happen because someone is taking medications that often are their only option for survival or sanity.) It is a condition involving bizarre, involuntary movements, most often in the face. From my understanding of the condition, the involuntary movements I was displaying were not the kind seen in TD, but why would I still be having movements like this having been off antipsychotics for 7 months?
I took a video of the involuntary movements my body was doing and sent it to my psychiatrist’s office, asking if they thought it could be TD or some other similar condition. They replied by saying it did not look like TD and also it did not look like dystonia. They told me dystonia is a prolonged cramping position of a muscle (like happened the time the paramedics gave me the benadryl IV), not the writhing, twisting, continual movements I was now displaying. They said it must be Conversion Disorder (e.i. hysteria) because there is no such thing as a condition that looks like the video I had sent. (Ok, let's remember these are still the same psychiatrists you have had since the beginning who never have taken you seriously.)
You are stunned by this information. It's all completely involuntary. Your toes are splaying in positions you literally cannot do on purpose.
Alright so I need to explain another thing about psychosomatic disorders. There are basically two fields of thought as to how they occur. And depending on what field the doctor who diagnoses you sits in, you get different diagnoses.
On one side, we have what is called Conversion Disorder. Conversion disorder comes from a psychoanalytic perspective. It basically says that due to past situations where a certain bodily function was prevented from being used, or forced to display, despite efforts to exercise or prevent that function, a person's brain loses track of what is voluntary and what is involuntary. This, they say, can be a metaphorical inability or genuine physical inability.
So for example, one presentation of conversion disorder involves muteness. So from the psychoanalytic camp this is explained by saying a person was prevented from saying what they so desperately wanted to express, perhaps by societal or family pressure, so often at a young age, that now as an adult they do not realize they have the ability to speak at all. They again want to speak, yet cannot.
For another example we can use paralysis. If at some point a person was trying to escape a dangerous scenario, and were physically restrained and therefore unable to move under their own will, later in life they might find themselves unable to move again, their subconscious still convinced they are physically held down.
The other camp looks at psychosomatic disorders from a neuropsychological perspective. And that leads us back to Polyvagal Theory. Basically, to my best and limited understanding, the mind and the nervous system are complexly intertwined, and various damages to the psyche can cause physical malfunctions within the nervous system. So it is not that a person is unconsciously preventing themselves from i.e. speaking or moving. It is that perhaps, that part of their nervous system is in a state of intense dissociation, literally inaccessible to them.
I personally prefer the neuropsychological camp. But my psychiatrists were saying this was an example of Conversion Disorder. And that was hard for me to fathom. At what point in my life had I been forced to display these demonic-possessed-looking movements? I had had dystonia before, but this didn’t look like dystonia. So it couldn’t be some subconscious recreation of that adverse reaction. How could it be conversion disorder if there was no original event from which the subconscious misunderstanding arose?
I’ll include one example of the movements I was having in order to illustrate how ridiculous is sounded to me that I was repeating subconsciously something my body was forced to do in the past:
I felt incredible shame. The movement attacks are such a disturbing thing to watch. What kind of a person subconsciously puts on a sham demonic possession? It felt like it meant I must have some deep seated horrible need for attention. But then I thought to myself, what an embarrassing way to get attention. It is so unflattering! The fainting at least possessed a graceful drama of sorts lol. This was just disturbing.
But I had had so many psychosomatic issues already, and I was fully aware that I am a complete head case. So I assumed they were right. I mean if my body is doing something that doesn’t even medically exist, it has to be all in my head.
But then months went by, and all my other trauma related symptoms started to get better. As I said earlier, after I started taking shrooms, nearly everything resolved. I was rarely having flashbacks, no fainting, no paralysis. But these episodes of crazy, freaky, twisting movements were getting more and more frequent and more and more intense. I also was starting to get really weak some days, to the point where I couldn’t even walk or lift my head. My pupils would be randomly dilated for days or weeks at a time, no drugs involved. I was getting really sick at random, dizzy and puking. I was also having episodes of confusion, during which nothing made any sense. It’s hard to explain but I just couldn’t make out the meaning of anything anyone said to me, couldn’t comprehend even a dinner menu, couldn’t figure out how to complete the simplest tasks.
Then one night I was laying in bed nearly asleep, when I felt this shockwave rush through my body from neck to feet, both my eardrums seemed to simultaneously burst—making a loud POP!-whistle sound—, and immediately both of my hands and feet fell completely to sleep; like the way it feels when you've cut off circulation to a limb for an hour before noticing. But I was laying flat so obviously wasn’t preventing blood flow with my body position and my limbs fell asleep in less than a second. For a wild moment I thought both my ear drums had spontaneously ruptured, but after snapping my fingers next to each ear I discovered I hadn’t gone deaf.
Regardless it was really freaky. I had never felt anything like it. I thought maybe I was having a stroke, heart attack, a brain aneurysm, something crazy. I woke Franklin up and was trying to decide if I should go to the hospital. It doesn’t sound all that wild, but it was just one of those things where you can tell to your core something is super wrong.
A couple months later it happened again, and then it started happening fairly frequently. But since I didn’t die the first time it happened, I was less nervous about it being an immediate medical emergency.
Then I started waking up not breathing. At first I would stop breathing at the same time as the shockwaves and numb limbs. But a couple days later I was just stopping breathing without the shock wave. Like as I began to get right to the brink of sleep, in that space where your thoughts are derailing into subconscious randomness, I would feel my breaths just stop. We walked five miles though the streets of D.C. from our parked van to the ER one night because we were getting freaked out. Worried something in my body was going into failure.
Like maybe, just perhapssss, the three separate times I swallowed 45 benadryl (or one of several other overdoses?) had caught up with my liver or kidneys? They did blood work and a chest x-ray and said I was fine as far as they could tell but that I might have developed sleep apnea and should see an immunologist.
So then I started researching neuroimmune disorders. Ok so here I will put a massive disclaimer that I do not know very much at all about this subject. I feel fairly confident in my ability to speak on psychological shit—even though I’m sure I’m oversimplifying much of it—, but the neurological side I am only just beginning to research and it is all very over my head. Whenever I research anything I only look at sources that I could use for a research paper in college. I.E. google scholar, not webMD or similar. But, of course, I still have the most rudimentary understanding of all of it.
The important point is that I discovered the particular kind of movements I was having actually do exist. Yes: they are not a dystonic reaction. But there are a whole host of other movement disorders that each feature very specific kinds of movements, all related to specific parts of the brain or spinal cord that are experiencing damage. I began to watch videos of people who have these various movements disorders and they looked exactly like mine. So then I realized that the majority of what I thought were dystonic reactions from medications, were not at all the well known dystonia.
Possibly only that very first episode when my mom called 911 was an actual dystonic reaction. The rest would fit broadly into the category of dyskinesias (which are not supposedly side effects of antipsychotics at all—excluding TD). So I realized, whatever is wrong with me neurologically, has possibly been slowly developing for several years.
All my symptoms could be from neurological sources. So then I thought back to the tremor I developed three years ago. Not that big of a deal, and I take a med that minimizes it to a good degree, but it is a bit odd in the scheme of everything that was happening at this point. And then there's my unexplained pain disorder. I haven't talked much about that in any post yet, but basically in late 2018 I started just hurting really bad. It was a pain kind of like growing pains but much more severe. A hot, ceaseless ache in my bones. And my skin burns. Like even my shirt touching my skin hurts. The pain can get wildly severe. In a big flare up, my skin burns to the degree that it feels like someone is holding a hot pan they just pulled off the stove to my bare skin, but the burn is felt everywhere on my body. From the skin on my face, even inside my nasal cavities, to my arms, to my torso, legs, toes. The pain has made me physically ill many times—puking and losing vision from the severity of the pain in my bones and skin.
This sort of pain is an example of what would seem like nerve pain. I got put on Lyrica (a medicine for nerve pain) and was given the diagnosis of Fibromyalgia by one doc and Idiopathic Pain Disorder by another (another two throw away diagnoses meaning they don’t know why you are in pain.) The Lyrica helps somewhat. And a couple years ago I discovered kratom and ever since I have taken a good amount of it everyday; so the pain rarely gets to the point where I am puking anymore. Between Lyrica and kratom, it's manageable these days. But it's odd, nerve (and therefore nervous system) related, and unexplained.
For several months I had Franklin take videos of various movements when attacks of them hit so that eventually I could show them to a doctor. But we had been on the road so it was hard to actually get an appointment since we never knew where we would be at any point in time.
I saw a neurologist in New York first. From the things I had been reading, it seemed to me that the type of stuff I was experiencing, the way certain symptoms would flare up for a couple weeks and then seem to get better again, the types of movements I was displaying, and the other symptoms I had, led me to demyelinating disorders. Things like Multiple Sclerosis.
The neurologist ordered an MRI to look for lesions on my brain or spine. It came back perfectly normal. Then we got to Austin for Christmas and were there long enough to see another neurologist. At this point the attacks were getting really bad. They were getting in my throat and preventing breathing. I would have convulsion type episodes of intense shaking, seizing, and twisting. Something in my throat would twist so that I couldn’t breathe while at the same time my diaphragm was spasming and forcing air out of my lungs, creating these god-awful grunting noises.
It's like exhaling and then holding your breath for up to 45 seconds. And then doing that over and over again, every 30 seconds, for several hours. It was getting scary. I saw the neurologist in Austin and he watched the videos of my movements and seemed to take me seriously. He said I needed a continuation of care to monitor the progression and that the tests required to rule out the many possible sources would be a very long and continuous process. We said we had been considering moving to Atlanta so he referred me to Emory Brain Health center, and gave me a script for Klonopin.
Turns out the Klonopin works incredibly well. It stops the dyskinesia-like, breathing-preventing, movement attacks entirely. It seems to also help this other kind of movement that some doctors have been calling a “possible choreiform athetosis”. Those movements still look weird but are not painful or dangerous.
Klonopin is an anti-epileptic and is effective for some movement disorders. But also, it's an anxiety medication. So it doesn’t offer a lot of clarity as to why it works/which issue its addressing. Psychosomatic or physiological?
The Austin doctor said in his notes “it is possible this is a genuine neurological phenomenon but I am inclined to believe it is psychosomatic in origin.”
I went to the ER a month or so after that appointment (after the klonopin script had run out) when I was having severe attacks that were preventing breathing. On this day something new happened; during an attack I sort of fell into some kind of state. It was like I suddenly was asleep and having a dream, but I didn't collapse or pass out. And then I came back and for a few moments didn’t know who Franklin was and it took a full minute to remember where we were (I didn’t recognize the room at his parents where we had been staying for three months). We worried I was having a sort of genuine (as in epileptic) seizure. We called the nurse at the Austin doctor’s office and she said go to the ER immediately.
I hoped maybe at the ER they could do some emergency tests or something. Help us speed up the process of figuring out what was wrong. At the ER I got an IV of benadryl and ativan, and was sent home with a diagnosis of MALINGERING.
After the convulsions where I would go into those dream states, I became very out of sorts for a couple days—so goddamn emotional. Crying and crying. And so this diagnosis of malingering, received on a day when I was particularly emotional, crushed me. I was so shocked.
They didn’t ask me a single question, or perform any tests whatsoever. But I was wearing a tanktop—my mental state gets very disorganized during the attacks; confused and just out of it—so I didn’t remember to hide my arms and the scars (for anyone who hasn’t met me they are very obvious and large scars all the way from shoulder to my hands). We just rushed to the ER. So either because of the scars, or how I express myself, or because the attacks are so unusual looking, the pattern of doctors not taking me seriously persisted.
They wouldn’t even look at me. Before I even got the paper with that devastating diagnosis I could see it in the way the nurses were refusing to look my way as I was seizing. I could see the “she wants attention, don’t give it to her” reaction. And it made me hopeless. I was so desperate for someone to just give me the benefit of the doubt and do some tests to find out if I have a degenerative disease or not! If there is something wrong with my brain or spine, it could be of massive consequence to start any possible treatments as early as possible. Franklin and I were both scared. Genuinely scared. I cried for hours after we left the hospital.
I am now regularly prescribed Klonopin that I take every day to prevent the attacks, and it works beautifully. Stops all the crazy movements entirely so long as I take it every day. So now that the really scary shit is under control I feel a lot less stressed about getting this figured out, which is good since I’m on a waitlist and can’t get into the Emory Brain Center until January 2024. And it's also possible I’m in a non-flare up period because almost all my other symptoms have stopped. For three months I woke up not breathing every night, sometimes at least 30 times a night. In the last two months, it's only happened a handful of times. My limbs haven't been going numb. My pupils are a normal size. My weakness is much less debilitating. My breathing isn’t weak. I don’t have issues walking. Things are better for now.
I am writing this entire thing to sort through what the fuck is wrong with me. Is it all psychological? Or do I have some co-morbid neurological issue? I think of the visual distortions I experience. The ones that are very similar to what you might see while tripping on psychedelics. (This is something I've never found a clear explanation for.) And how at the first appointment with a psychiatrist I ever had, he said that those descriptions were “more consistent with a structural abnormality” in the brain. And then my loopy moods. States of confusion. Is that hysteria? Effects of trauma? Dissociation? Or some neurologically engendered state?
I am convinced my “seizures things/movement disorders” are not “conversion disorder”, since conversion disorder requires a previous experience where your body was forced to experience the thing it later repeats. (Interesting fact, 20% of people with epilepsy—a very clear disorder in which a brain is flooded with electricity which can be seen on an EEG— also have “psychosomatic seizures”. Episodes identical in appearance and feeling to an epileptic seizure, but which show no electrical surge on an EEG. So from the perspective of conversion disorder, that makes sense right? The body thinks it's having a seizure when it is technically not, because many times it has experienced the true electrical surges.)
So I can’t buy into conversion disorder as a source, but what if my spasms/movement disorders/convulsions are psychogenic seizures? Weird problems with my vagus nerve. Short-circuiting of the nervous system, due to psychological issues and trauma. Does Klonopin help because it reduces my anxiety? Or because it's an anti-epileptic and common treatment for movement disorders?
I am stuck still trying to understand myself. Is there something psychically wrong with my brain? Or is my nervous system totally shattered, disordered, and malfunctioning due to trauma?
The whole realm of psychogenic illness is very shame-filled. It's hard to be told that in some way it's all in your head. It feels like you are making it up. But again, the nervous system and brain are desperately linked and developed to the mold of our life experiences.
Psychogenic illnesses are as “real” and beyond control as physical ones. My nervous system is fucked up. That's the main conclusion I have come to. So I just am trying to do whatever I can to help it out.
I think I spent several months truly wanting a doctor to find something physical so that I would feel less guilty. If it's “in my head”, it feels like my fault. But that kind of thinking is doing a massive disservice to myself and everyone else with psychogenic illnesses (which is a huge population—for example 20-40% of people who go to be tested for epilepsy are given the diagnosis of psychogenic seizures.)
I am fairly convinced that the fainting, and the paralysis, at least, are psychogenic, due to their direct link to flashbacks and their discontinuance once the flashbacks began to dissipate.
But regardless, its all a mind fuck. I neurotically read papers explaining how trauma can lead to true nervous system issues. I feel this need to see the studies and research that back up my experiences in order to prove to myself that “they are an actual thing”—this desperate need to defend myself, to myself. No one else in my life seems skeptical of their validity. It's just me who struggles to reconcile the shame of having psychosomatic symptoms.
I think in large part that’s due to the way I have been treated by medical professionals. Because, unfortunately, there is still a large population of professionals who view psychogenic illnesses as purposeful acts.
More and more however, that assumption is shifting. The new term for psychogenic seizures is PNES (psychogenic non-epileptic seizures). Doctors are beginning to further understand the deep link between the mind and body, and treat their patients with respect. Beginning to trust their patients descriptions of what's happening to them
Recently Gretchen, Franklin’s mom, sent us a New York Times article about a woman who became catatonic after suffering a traumatic event. She was diagnosed with schizophrenia and remained in that catatonic state—completely unable to function, communicate, remember, or move of her own free will—for twenty years. Then a doctor decided to run some blood tests. And they discovered she had lupus, an autoimmune disorder. They began treating her for the lupus and within 6 months she started to wake up from her catatonic state. She could remember her family, speak, and eventually was discharged from the state hospital she spent two decades at.
This, in the medical field’s current understanding of the way we humans work, doesn’t make a lot of sense. Lupus doesn’t typically cause catatonia or schizophrenia. And it shouldn’t have anything to do with this woman's mental disorder, which was very clearly attributable to a traumatic event. She also showed no outward signs of Lupus whatsoever. Yet it happened, and is setting off a wave of new research into so much we do not understand. There is a clear link between trauma and autoimmune disorders, and the exact nature of this link is still being deciphered. To me, it's becoming clear that the mind and body are one unit, that you cannot fully treat or even understand one without listening to and addressing the other.
I have no clue what's wrong with me. I am not sure if there is something wrong with the physical brain and nervous system, or if it's all psychological. But I am starting to come to the conclusion that it, in a way, isn’t quite relevant. Or maybe more accurately, I am starting to feel that the causes of symptoms are obscure, nebulous, entangled and everything about us humans is a constant feedback loop between the mind, body, and environment. The things the body experiences change, mold, and grow the mind. The way the mind speaks to the body controls it. Our nervous system, emotions, and brain are one unit. The experiences of the psyche, especially during childhood, literally shape the brain and nervous system. The mind and the body are insanely intertwined.
The spasming/seizure-like episodes could be psychological. But stress also triggers flares within autoimmune disorders, and autoimmune disorders have an immense correlation to trauma. The body is fighting against itself because it can tell there is some sort of threat to health, but the source is found within its own body. So if psychological trauma can be the source of physiological sickness, the line between psychogenic illness and physical illness blurs even further in my mind.
I think maybe the distress of severe, cumulative trauma is just too much for my brain to bear, understand, express. And so my nervous system just short circuits, overwhelmed by mental turbulence. I think of my psyche as just a bit broken, cracked, disorganized. And my body displays that with disturbing clarity.
This whole post is insane and tangential and I hope it makes sense. It's just a story of what I’ve learned over the past 6 or 7 years, and how I learned it. I know many people deal with at least aspects of the things I have described here, so I hope it's either relatable or helpful or interesting. Regardless, it's been satisfying to put words to my own understanding of myself. To get it all out on paper and slow its constant, questioning presence in my mind. If you made it through this whole three-part mess of a post, thank you for reading. <3
"They wouldn’t even look at me. Before I even got the paper with that devastating diagnosis I could see it in the way the nurses were refusing to look my way as I was seizing. I could see the “she wants attention, don’t give it to her” reaction. And it made me hopeless. I was so desperate for someone to just give me the benefit of the doubt and do some tests to find out if I have a degenerative disease or not!" Reading this made me so angry for you!!