Long Haulers and The Vagus Nerve

Bethany's Story of Entanglements

I’ve been fascinated by the Vagus Nerves in Long Covid ever since I started digging into the research by Mike VanElzakker who, when we spoke in May told me, “Long Covid is not a mystery, we have some strong leads.” A decade ago, he wrote a manuscript in the journal Medical Hypotheses that drew on the neuropathic pain literature to suggest that “pathogen-activated glial cells can bombard the sensory vagus nerve with proinflammatory cytokines and other neuroexcitatory substances, initiating an exaggerated and intractable sickness behavior signal.” In other words, the virus sticks to the vagus nerve and tricks it into thinking its sick, thereby causing sickness behavior. While this theory was proposed as a potential driver of chronic fatigue syndrome, more recently, Mike and his colleague Amy Proal have suggested it has been linked to Long Covid.

Bethany’s Sunflower, acrylic and nail polish on canvas board, July 2023 

Mike told me, “I think viruses, especially and possibly bacteria and other things, are interacting in a way that causes an ineffective immune response. In a way that depicts autoimmune disease. For me that’s probably what’s happening. And that’s what needs to be treated.”

Understanding why Vagus Nerve dysfunction is such an interesting theory for people living with Long Covid is important. The Vagus Nerve is the powerhouse of the autonomic nervous system—it’s the joining of nerve bundles that control involuntary bodily functions like digestion, heart rate, and immune function, making it the largest nerve in the body. In particular, the vagal nerves control sensory and motor functions, which are closely linked to symptoms frequently described by Long Haulers: digestion problems, heart rate and blood pressure, immune function, mood, muscle aches, itching, and problems with speech, smell, and tastes. These symptoms become heightened when the parasympathetic nervous response fails to control its major functions of “rest and digest.” In this way, it’s opposite of one’s sympathetic nervous response of “fight or flight.”

A recent preprint in the Lancet describes the pathophysiology of vagus nerve dysfunction in people living with Long Covid (compared to those who recovered from COVID-19, or who were never infected at all). They found that there were consistent structural and functional alterations in organs and body parts affected by the vagus nerve. (Their primary methods were to examine structure of muscles in the neck and chest as well as other functional tests related to balance, digestion, respiration, heart rate, and nerve response). They theorize that the vagus nerve dysfunction has a central pathogenic role in some people’s experience with Long Covid; however, this pathology does not map onto every person diagnosed with Long Covid.

Now understanding this science is really helpful in many ways. But I want to share a narrative the clearly illuminates what Vagus Nerve dysregulation feels like.

Unraveling: A Story of the Vagus Nerve

Bethany McCraw liked the night life. She worked mostly in the afternoon and rarely began before noon. For decades, she honed her skills, training elite hairdressers and traveling for fashion events. But everything changed when she turned 50. She was diagnosed with breast cancer and could no longer travel. She revamped an old condemned house she’d saved 20 years prior in an industrial zone to serve as a boutique salon. Her artsy, night-owl friends worked irregular hours and dropped by often for a cup of tea. Some of her creative artist friends skillfully built custom steel sculptures to decorate her unique salon.

Business boomed. She worked more than 12 hours days but her work was also her social life. It was not unusual for client to arrive at 7 pm, and to finish after 11. But no one minded. She enjoyed the company of her clients and reveled in the hospitality. To build strength after cancer recovery, she’d walk sometimes up to five miles a day with her old Italian Greyhound. She was determined, busy, and happy. Having the salon in her own house gave her the freedom for breaks and pacing, so crucial for cancer recovery, which her high-pressure career hadn’t afforded her before.

On March 13, 2020, a client sat in her chair. It was more than halfway through his haircut when he said to her, “Oh my god! I think I might have had it.” She looked at him intently, and listened: His mother lived in a hot spot of one of the first states with exploding covid cases and died suddenly of “pneumonia”. Then his uncle died of “pneumonia” a week later. Her client had only returned by plane after putting his family members to rest, and noticed several ill people at their funerals. Although he’d felt very sick for several days, he started feeling better and decided to keep his appointment with Bethany before lockdown took effect, saying, “I need to get my haircut before I go into quarantine!”

Bethany’s symptoms started three days later. The first four months were brutal. Fever hit her like a truck. Bethany had spasms that presented like seizures. She was coughing up blood. Sometimes when she went to lay down, her body would be jerking so much, she felt possessed. She would roll over in bed, flopping like a fish, unable to control her arms and legs. “And all I could do was just try to breathe through it. I had terrible fever, terrible dreams, and frightening hallucinations.”

She called the ER repeatedly at first but they told her every time: “I can tell by your voice you’re still breathing, so stay home. Don’t bother coming in unless you can’t breathe.” For weeks, she collapsed every time she stood up. She lost 30 pounds in the first 20 days of symptoms. Her hair matted and frizzed. She had rashes all over her body. Her fingers and toes turned blue. Her gums bled. Her teeth broke from grinding.

Ten days after the symptoms started, she finally saw a doctor. They had received their very first COVID-19 tests that morning and she was the first person to be tested in their clinic. The man who tested her was holding her hand because she was pleading: “am I really going to die?” He was in a full hazmat suit and looked at her between the layers. But the results came a few days later: Negative for covid. “Impossible”, she thought. “I know I had it. What else could it be? I’ve never been so sick in all my life.” Thus began the arduous journey of an undiagnosed, unrecognized, untreated “long-hauler”, months before the term was even coined.

When she first got sick, Bethany’s friends would call her but she could not communicate. She said in her head she would string together a number of cogent thoughts but they could not exit her mouth. This led her to have some estrangement from her friends, and she was already estranged from most of her family. All except her dad. But on the very day she was first being covid-tested, her father suffered a bad stroke. Over the phone, only a week prior, he’d told her: one of his dining companions at the home had died suddenly of “pneumonia”. He died several weeks later. Bethany believes it had to be covid-related. He was in the home due to some complications from a surgery but was otherwise a very healthy elder. His sudden stroke came from “out of the blue”.

Bethany’s “Autumn Leaf”, September 2023, Conté crayon and sharpie on watercolor paper

Between grief and illness, she holed away alone. In part because she was afraid that she’d get others sick. No one could say, in that first year, if a person was contagious or not while symptomatic. And the symptoms never, ever stopped. She felt she couldn’t take the chance of passing it on. Her house soon fell into disarray. She couldn’t keep up.

Due to dysautonomia, Bethany kept collapsing, so she bought a walker-seated mobility aid to keep her from falling. She never reopened the salon. Focusing on managing her symptoms consumed her every moment. She was too dizzy to stand for more than five minutes. She collapsed on the stairs, unable to move for hours. She had constant heart palpitations which worsened exponentially whenever she stood up or tried to move around. She became bedridden, unable to rise. Her skin yellowed and her hair fell out in clumps.

Only one city dentist clinic was open during the lockdown phase. Several teeth had broken during the fevers/seizures of the acute infection. But the mere exertion of driving to the dentist was enough to spike more fevers, and one panicky dentist loudly refused service, yelling at her to GET OUT, despite her having a doctor’s note of explanation and another negative covid test result prior to the appointment. She was testing every few weeks at this point. No one could say why she was always symptomatic, but never tested positive. People in the dentistry waiting room shot her murderous looks over their masks as she slunk away in pain. Her teeth were eventually treated and fixed, but it took six appointments, over a three-month span, to do so.

Bethany’s “Salishan Sunset” Acrylic on canvas board, June 2023 (based on a place she used to visit with her dad)

Bethany was so exhausted. It all hurt so much. Her symptoms continued daily, incessantly: Fever, rashes, migraines, temporary loss of vision or hearing, tinnitus, nausea, and what looked like DVT, swelling in arm or leg. But the D-dimer and ultrasound tests showed “normal” too. No one was looking for micro clots then. We didn’t know much about SARS-CoV-2 yet.

Relentlessly seeking answers, she began learning about the Vagus Nerve and began a practice around “Polyvagal theory” which aims to heal trauma-induced disruption of the central nervous system. Bethany started to “gain more functionality, slowly but surely”. She explained, “I’m also on certain medications that improve my function. But I can’t take them all the time. I’m so sensitive also to the side effects, they can also tip the scales and make it worse, if I’m not extremely diligent about my pacing and rest schedule.”

Bethany was completely isolated. She had no one to care for her: to pick up groceries, or help organize and take her meds, prepare food, or get her to the doctor. She explained, “At that point I had no one. I was scared to get my friends sick, I had no family, I had no medical support, and my doctor told me it was all psychological. I didn’t understand it. None of us did.”

Bethany’s “Night Jellyfish”acrylic on canvas board, June 2023

Bethany also was unable to progress with her disability claims. She was exhausted and had such severe migraines and brain fog, she couldn’t organize her case. “The disability access laws,” she said, “suggested I should have gone in sooner.” But she had so much difficulty sitting upright, let alone stand!

She found a new doctor who believed her. He agreed with her presentations, diagnosing her with Long Covid based on her symptoms, and things finally began to change with her treatment regimens. She found him through a Facebook Long Covid support group, based on a member’s recommendation. In many ways, the virtual community had become the most reliable one in her life, the only ones who believed her and understood what she faced. She deeply valued the friends she met there. The new doctor ordered a whole slew of diagnostic testing that had been withheld before. Blood tests showed her iron levels and platelet counts were messed up: her blood was sick. Her inflammation markers were high. She underwent two colonoscopies and an endoscopy. It was discovered she now had sleep apnea, worsening asthma, and was prone to opportunistic secondary infections from fungus or yeast. Her immune function could not handle them all. She was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS, a form of dysautonomia). She trialed different prescriptions, seeking relief from the never-ending malaise.

They also started testing her cognition and memory. Bethany was petrified on the one day she’d recalled sitting at her desk, but then suddenly discovered she was in the kitchen, like waking up from a dream. She had no recollection how she got there. This was the most severe, however. Luckily these lapses were few. But the fact they were there at all, terrified her. “It felt like it wasn’t me”, she said, “It was like someone else had taken over my whole existence. I didn’t know my own body or mind anymore”. Her night-owl schedule flipped into a mornings-only routine. Most days she now couldn’t stay awake past 3 or 4 pm. Some days she slept more than 22 hours in a stretch.

Some doctors she saw would just “shrug” and suggest she change her diet and lose weight. It absolutely infuriated her because her symptoms just got worse. She developed serious new allergies. Her cats were her constant companions but she became allergic to them too. She also developed food intolerances that she’d never had before.

What’s fascinating about speaking with Bethany is the way she talks about her conditions, weaving together her constant studying of biology, symptoms, emotion, and experience. I spoke to her again this week and wanted to share some of her narrative here because it’s a provocative way of understanding vagus nerve dysregulation.

Bethany’s “Rainbow Blossoms”, July 2023 

When we spoke this week, she’d been experiencing severe gastrointestinal distress again for several months. She said, “It's beginning to be difficult to get even just liquids in, and it's really hard to say exactly what's going on. The doctors can't pinpoint it. I think the general consensus seems to be that the dysautonomia, with its hair-trigger, impaired sympathetic response, is engaging the purge reaction: the vomiting and voiding kind of thing.” She was constantly experiencing vomiting and diarrhea so she shifted her diet to include very minimal foods, like celery, peanut butter, and herbal tea, and fasting roughly every other day, seeking to calm the agitation.

She explained, “The sympathetic response in the vagus nerve is responsible for the fight/flight response, which is fear or anger. We tend to think of those things as opposite. Like one, you're scared, the other one, you're kind of angry and bold, right? But it's actually somewhat similar to spectrum disorders in that, it's actually the same thing, along a continuum. The sympathetic response, when it's fear, it engages your lower body, readying you to run. You void bowels or bladder, so you can run faster. There's physiological changes which happen in your gut and your pelvis. The sympathetic response, when it’s anger, it engages your upper body, readying you to fight, and strike out with your arms. Blood rushes to your head. Your jaw clenches. You feel hot and dizzy. It’s hard to think. It’s hard to breathe or swallow.”

Bethany’s “The Horror of Party Beach” aka Hot Dog Mouth Monster,

sharpie on watercolor paper, June 2023 

“The Vagus nerve rules the digestive system, it rules everything! It rules the heart, the lungs, the brain, the head, speech, and emotions. It sits behind our throat. The Vague Nerve is responsible for facial expressions. It's responsible for emotional states. And it's responsible for these survival autonomic responses such as the sympathetic response of “fight or flight,” and the dorsal (or parasympathetic response) of “rest and digest”. And then the ultimate parasympathetic response, which is “freeze”. This is also an autonomic survival function. For example, say a fox has a rabbit caught in its jaws. The rabbit is terrified: an extreme sympathetic response. But the rabbit is also trapped, and death is closing in. So paradoxically, an extreme sympathetic response elicits an extreme parasympathetic response, and the rabbit stops wriggling/fighting, and goes completely limp. This “freeze” response floods the rabbit’s body and brain with feel-good chemicals, numbing painkiller endorphins, and soothes the limbic processes, so that the animal does not feel the pain of death, and doesn't feel fear at the pain of death. In that state, there's literally nothing you can do. And it is a survival response.”

She continued, “Because not every predator likes to eat dead meat. So if the rabbit goes limp, seemingly dead, and just stops resisting, there's some chance the fox might drop it. If it does, then naturally, the rabbit will next get up, and then shiver violently. Shake, shake, shake, shake, shake, shake. The tremors are the engagement of sympathetic response again, and it instantly and automatically changes the physiology again, allowing the rabbit to hop away and survive the encounter. This is why we shake and/or freeze from terror. It’s our nervous systems seeking regulation, for survival needs.”

This all related to Covid in meaningful ways. “Covid impaired my nervous system so much,” she explained, “and my autonomic function, the sympathetic response, the anger response, is making my throat super tight, and it's very difficult to swallow. So everything I eat wants to vomit back up. And if I manage to get things down, the sympathetic response, the fear in my legs goes, Oh, my God! We gotta lighten the load. So that's diarrhea, to get everything out. So I have lost another 30 pounds since the last time I saw you and most of it has only been within the last month.”

I asked her: What are you doing to survive? Bethany continued, “I'm literally starving. I’m not eating much at all. My system can’t handle it. But I’m learning to try weird things like this, anything to calm the vagus nerve: I have this heavy necklace chain I've had since I was a punk rocker in 1980, and I realized recently that weight on the back of my neck, draped directly over the vagus nerve, has a soothing effect. Kind of similar to a hug or a pat on the back. The sensory calm helps me. So now I wear my old chain daily again. I'm trying all of these different methods of soothing this vagus nerve response.”

Bethany wearing her chain

Bethany described how her dysautonomia affects her body: her vagus nerve can’t regulate the fluid volume in her body, so she has trouble when standing. Her vagus nerve has to employ sympathetic response to keep oxygenated blood coming back up to head, heart, and lungs, as a survival function. The blood pools in her extremities; in this way her limbs are a deep purple color but her hands and feet are white as a sheet, and cold. “That's evidence of blood pooling. It's poor circulation. That's another symptom. It's what's going on in my throat sometimes, too, that makes it very difficult to speak. I choke on my words. I mean, when you are in a fight, flight or freeze response, speaking isn't really important. That's why people say so many things in the heat of anger that they regret, because their brain shuts off. And it's just emotion and expression. You say things you regret because you're not thinking about what you're gonna say.

“Right now I am literally starving. Insurance will not pay for protein shakes, and I can't afford them on my own. And I’m breaking more teeth, grinding at night. The bruxism from dysautonomia has never been addressed properly. One of my broken teeth became infected and abscessed in spring. I could not get insurance to pay for a root canal. I had to fight them for 9 weeks over it before they just pulled it out. [There was] an appeal on every decision, because it’s bruxism is causing this. It's not tooth decay. It’s untreated dysautonomia. I’m likely to lose more teeth, as I literally crush them into my own jaw, from the tremors/chattering of runaway sympathetic response. Now I have missing teeth, it’s even worse. It’s further destabilized my neck, jaw, and face, and is heightening the dysautonomia. I need a mouth guard, but they refuse to cover that too.

“So, it's difficult to communicate in these survival modes. If you're really angry, all you can do is scream or curse. If you're really fearful, all you can do is scream in terror. And these responses do have a vagal purpose. Screaming, it works to change the Vagus Nerve state. It causes chemical changes in the brain, it causes chemical changes in the face, and those stress chemicals are washed out of the brain and central nervous system by our tears. That's the reason we cry. Vocalization of any sort elicits changes in vagal tone too.

Bethany’s “Space Ghoul” (mutant from the film “This Planet Earth”, acrylic

paint and iridescent pigment on canvas board, July 2023 

“We cry because the Vagus Nerve sends signals to a stressed, fearful/angry brain to flood with tears, washing away those stress chemicals. That's what the purpose of tears are. This is why, you always feel better after you cry, right? Similarly: throwing up feels horrible too. But once you're done, there's a calm, and you feel much better. It’s an autonomic sympathetic or parasympathetic response, to restore you to a more ventral vagal state. The purpose of our nervous system is to keep us alive. It's not to make us comfortable.

“It's also not to prevent us really from getting sick. And this is why an overactive nervous system actually leads to autoimmune disorders and immunocompromised states. Their vagus nerve system cannot react properly to pathogens and stress. It gets stuck and can’t regulate. For people with autoimmune disorders, their vagus nerve is over activated. It attacks too much, including the tissue of your own body in time, and this gets back to my story, because this is what this is. My organs are affected: pancreatitis, gallbladder pain. One of the things that my doctors think is happening with me. Why I can’t eat, and why I can’t digest. I’m sorry, I'm losing my train of thought. It's so hard to focus anymore.

“The gut-mind connection is so powerful. Our brain is kind of the power station of the body. The vagus nerve is the electrical conduits that gets all that brain power to the rest of the body. But it's also a communication system. It's both power and kind of like phone lines. Our guts communicate with the brain via our vagus system, giving it information such as, I'm hungry!, or I'm not digesting!, and this sends signals to the mouth, communicating things like oh, you should be chewing now! It’s difficult to address, because the parasympathetic response of rest and digest is also disrupted, which means that I can't rest. That's also where the insomnia of long covid can come from. I can barely digest food any more. It’s been progressively getting worse and worse since the tooth was extracted in April.

“The 6 weeks I had to be on antibiotics to keep the abcess going septic while I waited for the root canal appeal process, did not help at all. It destroyed my gut biome, heightening the parasympathetic dysregulation even more. I had to try to advocate though. I knew removing the tooth would end up destabilizing my jaw without addressing the ongoing bruxism. What I need is a mouth guard to wear at night. I can kind of control the chattering, when I’m awake. I can control enough to speak. I try massage and other techniques to soothe the constant chattering/tremors of my jaw.

“A lawyer assigned through to me the city DHS through Legal Aid of Oregon is attempting to advocate for me now, so that I can get a bridge and get this dental shit fixed. But it all goes together. The communication from my jaw is, Oh, my God! You're in pain. And pain alone raises sympathetic response, too. When sympathetic responses engages, you cannot rest and digest. Your teeth chatter in fear response. On and on it goes. Vicious circle.

“They're at opposite ends, sympathetic and dorsal. Adrenaline and cortisol gives you energy for fight or flight. Anger and fear are both energizing. Parasympathetic is rest and digest. It’s sedating. It's why you feel sleepy after a big meal. It's why you nap after Thanksgiving dinner. Everybody has to take a nap because it's an autonomic function. The Vagus nerve says, Oh, if I've got a lot of food. I have to put all of my efforts towards it. Shut down all other systems so we can deal with it. But if your parasympathetic response is impaired, plus the biome disruption of antibiotics killing off all your good bacteria, it's like a perfect storm. There’s barely any digestion and precious little rest.

“It’s affecting me so much. I just saw my gastroenterologist this week. He told me that allergies basically begin in the gut, too. Between all of these things, between the gut biome, the vagus nerve disruption, and my inability to rest or eat, all of these things are overlapping so I now have what seems like hundreds of new allergies/intolerances, and this is another reason why I'm not digesting. Food is tough right now. I can't eat eggs, chicken, beef, seafood, soy, wheat, gluten, corn, rice, nuts, legumes, sugars, or any fiber! A histamine diet also means you must eat fresh ingredients. Leftovers are higher in histamine so it makes these allergies flare more. Canning food also raises histamine levels.

“All these new allergies/intolerances seem to have also created something in me called MCAS: Mast Cell Activation Syndrome.” I found this diagnosis significant to emphasize because many people with the most severe Long Covid stories have reported some mast cell activation, bringing forth new allergies and difficult exposures in their environments. In many ways, Bethany’s environment is toxic for her health: her cats are her constant companions but now flare her allergies, and she doesn’t have enough energy to clean her house of the fur, dust, and cobwebs.

She continued, “So the MCAS flare triggers sympathetic response, which heightens the MCAS, which triggers the autoimmune disorders. It's just this vicious circle, back and forth, back and forth. With everything is feeding into each other. My entire system is absolutely inflamed. In terms of autoimmunity, the MCAS is also contributing to the gastrointestinal distress because my own system is attacking my organs and soft tissues: pancreas, gallbladder, and small intestine are all affected. It’s extremely painful. It feels like I’m dying every time I eat something. All of it is invisible to others.”

“Gary”aka “Horror of Spider Island”, sharpie, colored pencil, and rhinestones on watercolor paper, June 2023 

The good news is that Bethany has an in-home clinician scheduled soon to visit her in her home. In many ways, the most important medical intervention for her would be a clean living space where someone can help prepare her good, fresh nutritious food that she can digest which would help her rest. Healing takes place during rest. A working vagus system promotes healing. An impaired one cannot, at least not adequately. But qualified caregivers are so scarce, she still hasn’t found anyone to hire for her specific needs.

In closing, I was reading Edward Shorter’s (1992) From Paralysis to Fatigue this week and was struck by the interchangeability of the terms irritation and inflammation that was so common a century ago. While he describes how it was inherently problematic: when irritation was pathologized, its nebulousness opened the door for “a series of invasive, meddlesome, and unnecessary interventions that presupposed the presence of disease where none actually existed” (p22). The interchangeability of what is diagnosed and what is perceived—what is real and what is imagined—were so complicated in medical history that the revisionists have a difficult time interpreting what was biological or psychological, felt or perceived, real or unreal. It has made me think how feminist reckoning, as Elizabeth Wilson argues in her book Psychosomatic, has dismissed the biological underpinnings of these unexplained symptoms, despite the interactive processes of mind, body, social relations, and environment that make Bethany’s body so “absolutely inflamed.”

In these ways it’s crucial to take seriously what underlying biology does in the expression of what medicine deems “unexplained”. This is why path-breaking research, such as the work by Mike VanElzakker and Amy Proal has argued so clearly that viruses sit in the body (such as on the nerves and in the gut) and that they evolve with humans, often intertwined with several other pathogenic ecosystems throughout the body—not only in the gut but also on the hands, organs, face, feet, and so on.

I wanted to end with a message from Bethany. She emailed me in follow up to our conversation with several things, including this message about healing and recovery from shifts in emotional or vagal states. She wrote something that may help people in the midst of vagal nerve chaos:

And finally: on a personal note: shifting vagal states can be done with MANY types of exercises/activities. Laughter, tears, music, meditation, eating, chewing, humming, singing, dancing, sex, yoga, etc.  It gives scientific basis to what we’ve all known for centuries: Music and laughter HEALS US.

To this end, my CNS counselor encouraged me to incorporate music into my meditation practices. But I found that listening to music I already know and love actually provokes grief...because I associate it with the life I can’t live anymore. I LOVE music. I used to go to opera, symphony, punk, EDM, jazz, pop, country, and all SORTS of musical performances, and dancing was my greatest joy! But none of that is possible now. So I got a beat-making phone app and now make my own EDM for my own brain healing: Repetition helps forge neural pathways. Stereo separation engages both brain hemispheres and improves communication between the brain and the body along the vagus nerve, improving vestibular balance/dizziness, through headphones. Bass registers have been shown to calm PTSD/CPTSD response.

If you dislike EDM my music will drive you nuts. Luckily, the same effects can be found with ANY type of music you love. But this is what works for me:  soundcloud.com/bleuefish/tracks  

I don’t think of them as songs. They are polyvagal ASMR/frisson meditations meant to elicit response all the way up and down the spinal column. Since making these and listening to them it has helped improve my speech, balance, cognition, and functionality, despite all the horrors of the cascading issues I’m dealing with between dysautonomia/POTS/PTSD/MCAS. It takes roughly 15 mins for the effects to really shift vagal tone so they are all longer than a real song. The practice has helped me immensely.

Whew.

Thank you, see you next week.

Cheers, Bethany