Endure
A Dialogue on Severe Pain
Two friends. Thirty years. Both living with trigeminal neuralgia — a cranial pain condition so severe it has earned the clinical nickname “suicide disease.” One also carries glossopharyngeal neuralgia concurrently, a combination rare enough to become a medical case study. This is part of their conversation, stretched across a week in early spring.
The following exchange took place over seven days. Responses were written hours or a day apart, in the spaces between living with the pain being discussed.
Friday
JB:
I’m following your [multiple sclerosis] posts but don’t feel qualified to comment. The pain of MS posts hit home. An interesting personal detail you and your MS constituency might appreciate: I’ve finally found out that it is a medical fact that prolonged chronic severe pain (like our trigeminal and gn shocks) use the same neural pathways as the fight/flight response so terrifying to anxiety and panic disorder.
I discovered this in my journaling, when I found myself experiencing full fledged anxiety attacks sans content: no plane crashing, no imminent catastrophizing — real or absurd, just physical symptoms. Then I noticed, every time I experienced a “jolt,” in one or both T&G nerves, the anxiety physical symptoms amps up or restarts with a vengeance. It came to me as a kind of personal moment of clarity that in this state I could “worry” about almost anything but nothing would do just fine.
So I’ve been meditating and breathing through the anxiety and quietly noting the absence of mental content. After much medical and psychiatric based research I learned that this is common to our kind of pain. It dawned on me that maybe I’m not as crazy as I once thought. It’s just the pain goosing the old lizard brain.
I wonder how many people get anxiety from this pain and feel they are also crazy? Do they know the worry and ruminating are unnecessary, that the fear they are feeling is chemical, that it won’t kill them? Do people know this? Physical pain triggers fear. People then “justify” the fear by inventing (usually unlikely) worries. Perhaps everyone knows this. I didn’t and I’ve been in this pain-anxiety cycle for decades. Maybe I am grasping at straws to find something positive from this situation.
Hope you are well. Lovely spring weather here!
Tuesday
KJ:
You’re not crazy. You’re learning. The neural pathways you notice are real and get more efficient the more they are used.
For me, I find they work in both directions. Physical pain can create fear and anger and fear and anger can create physical pain.
I have learned to respect and appreciate pain as a teacher. Hearing his footsteps coming down the hall can be terrifying and yet I have learned the torture is usually less severe if I listen and learn.
I now have a close relationship with pain. He’s often sitting quietly behind me. I described what he looks like to AI and got this back.
For me, if I look close the eyes can hold the look of a teacher more than a torturer. If I hold that perspective, it changes the experience.
It’s finally spring weather here. First time on the porch today.
When asked, my dog is the teacher I prefer.
BTW, you are well qualified to comment on my posts. We are brothers in pain. ⚡️⚡️
If you haven’t already, you might enjoy reading Vijay’s “Swaraj Spy” book. It’s a good story and I found his descriptions of torture legit. It somehow gave meaning to the experience. I listened to the audiobook.
Wednesday morning
JB:
I am blown away by the depth and breadth of your response. I need to gather my increasingly fragmented wits to respond. Thank you!
The cyclical nature of the pain/fear action/reaction is something with which I’m very familiar. The discovery, what you call learning, is that no content is necessary and the zillions of times I ruminated on (usually absurd and very unlikely catastrophic outcomes) isn’t even necessary.
Your AI renderings of your pain are disturbing but not surprising. I’ve not characterized or personified my pain in that manner. I must think about that. Does that help you to enlist it in your endurance and understanding? Is it like a dream guide? To integrate into your self? Like an aspect of the Jungian shadow? I’ve never considered that.
I do listen and learn, quiet meditation is the only path, but I relegate my pain and anxiety to a brain chemical function. Which is somehow easier for me to visualize and then decide (if I have enough quiet insight) that the anxiety/fear is, like the pain, “only physical” and my primitive brain’s response is unnecessary. So I try to meditate back out of it. And if the pain doesn’t stop, I have at least had success dialing back or ignoring the fear response. On the surface this could seem a bit egocentric, like I am in charge, and part of me doesn’t want to elevate the pain to a character. I’m not judging your perspective, I’m considering it.
That’s a hell of a kind thing to say, brothers in pain. I appreciate it. Because (as I’m sure you’re aware) nobody fucking gets this. Hardly anybody. You always inspire me. I’ve not read Vijay’s book; when I inquired it was only available in India.
I’m with you on spring. It’s the best time of year. The time between winter and spring in my old hometown was a nearly unendurable torment of “not yet!” Here, the time between winter and spring is about three days! Thank you, KJ. You always give me greater gifts of wisdom than I can properly appreciate only given time to think them over.
Thursday
JB:
I hope I didn’t offend you. I’m not rejecting your characterization or personification of pain. It’s just not a way of relating to the experience that I ever considered. Also being half Italian, my first inclination is not to enlist my pain character, but to put two shots in the back of his head, leave the gun, take the cannoli.
Thursday — later
KJ:
No offense taken at all, and I’d be complicit if there was.
For me, pain and healing are about balance. In that, my spirit animal muse is Philippe Petit, the guy who tight-roped between the WTC towers. Sometimes I feel like I am out on the rope, windy day, long way down. The ground hurts.
Suddenly my pain guy is on the rope too, and he’s jumping sadistically. Trying to make me fall.
He doesn’t always look like the guy in my pictures. Sometimes he looks like a politician or news anchor. Could also be a bully, doctor, or nemesis.
I start to lose my balance. I feel shocks of pain. If I run, I’ll fall. But if I relax, have fun, and try to move in harmony with him, if we dance, I can maintain balance. It might even be beautiful. The sun may appear.
The crazy part is this all happens in my head. It can’t really be seen on an MRI or X-ray. Maybe a heart monitor. Doctors may say it’s not there.
But you and I both know it’s real.
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While there’s little a doctor can see or do, the fact that it’s within me offers an opportunity. I find my imaginary friends on the wire are a reflection of an external signal. If I change my perspective or quietly move my UHF antenna, I may be able to pick up a better signal. My signal ghosts often disappear.
Sometimes if their signal is strong, if I am jacked into it like cable TV, it’s hard to tune into a better signal.
Unplugging the cable in nature helps. Certain music or mindful exercise is good. Meditation, cannabis and psychedelics can help.
As an AI nerd, I find health and pain can sometimes be like an AI prompt I can edit or rewrite. It’s a black box I can’t say I’ve mastered, but machine intelligence and human intelligence are often more alike than we are willing to accept. Maybe that’s the egotism you mentioned 😆
Currently my MS is improving in very unusual ways. It’s on the anecdotal fringe of medical reports. I feel it and it’s validated by tests. Docs see it too, though in a weird way I sense it’s threatening to them because it doesn’t fit their model and training.
That’s a challenge, because I need their help. As a sales guy, I know sometimes it helps if I offer them an opportunity to feel it was all their idea. 😀
There are also some biomarkers and pain signals that tell me I still have critical work to do. Someone is jumping on my tightrope (it’s probably me) and I see the steel wire is fraying some.
In response, I stepped back from some work and drama I felt might be contributing. We’ll see.
I am also trying to edit my prompt. With MS and TN pain, my body is destroying itself. There is no external injury, infection or sadist. It’s all me. I am literally my own worst enemy.
If you saw my ketamine therapy video, I used the scene from 2001[A Space Odyssey] where astronaut Dave is disconnecting the HAL9000 computer as a metaphor.
It feels very much like that for me sometimes. As if I edit the prompt and signal, I can reteach my immune system to stand down and not destroy my spinal cord and get my brain microglia and trigeminal nerve to chill.
My dog just watches and reminds me she doesn’t have these problems.
Of course, Dave the astronaut ends up dying and living in a zoo, so my story may get interesting 😆
Friday morning
KJ:
Your Jungian comment is insightful. At some level the Pain Guy I illustrated may be my Tyler Durden. I grew up with a ruleset my role was to calmly and quietly absorb the pain of others and make them look and feel good. At my expense. It was a survival skill I was good at. Over time, I became hyper attuned to the adult room energy in a way most kids aren’t. That skill served me very well later in my sales career. I was the cool-headed guy able to read and handle situations most walked away from empty-handed. But I felt a cost for the duty. The hyper awareness isn’t an easy skill to turn off.
I have come to recognize my pain flares reflect the stress around me. Sometimes in what I am doing; I am dealing with an angry person. Perhaps I am hearing I will be in a wheelchair for life. Sometimes it’s more abstract; people in general are stressed about a war or election somewhere. Everything is connected. We’re all in a big soup pot.
On the eve of my worst TN outbreak, the one that left me unable to speak for months, I was leading a class of 50 very smart, very stressed MBA students freaking out about the final exam. In parallel, my wife was away and proposing divorce. When the pain came and the meds my neurologist offered didn’t work, my best respite was solitude and silence. My neuro did offer a clue. He noted my MRI shows a nasty MS lesion where my trigeminal nerve root meets the brain stem. As he explained how surgery there would likely kill me, he noted the lesion had been on my MRIs for 10 years. As I only had intermittent pain in those years, he suggested something else was going on. As I thought about my immediate work and personal challenges, a light bulb went on.
While the anti-convulsant meds the doc gave me did nothing, I found the calm meditative space I found with acupuncture did. That slowly led me completely away from the meds and towards more meditation, cannabis and eventually targeted psychedelics. With the psychedelics, I visualized planes dropping flame retardant on my pain, and of my connection to others in the soup.
My Tyler Durden appeared later. Perhaps if I was the calm fireman putting out other people’s pain, he is my shadow forcing me to listen to my own pain. Persistently teaching me where my triggers are, where the landmines are buried. In that, I feel less fear and anger and more of a grudging gratitude for his presence. I see less cruelty and more lesson. Regardless, it’s how I have learned to step away from my pain sources rather than trying to mask them. It’s why living alone with a dog works for me right now. The concurrent, demonstrable improvements to my pain, medical biomarkers and mobility tell a powerful story.
Thank you for sharing your observations for the MS community I reach. If you’re open to it, I’d like to clean up and anonymize our convo thread and share it in some form. We offer perspectives on a real experience most don’t understand but a few people desperately need to. Maybe it will help.
Friday — later
JB:
I should be and am thanking you. I need to absorb all that you’ve written. I tend to view things through a Jungian lens (I mean, why the hell not, I read all those books!) but my applications of trying to manage the pain anxiety and anger are behavioral approaches.
I can relate to what you’ve shared about your childhood. I was never a child. I was labeled “smart” by my parents (a fallacy and a setup) and was designated as their respective confidante before I was out of elementary school. Was and remain an emotional sponge though better able to deal with it. I knew all kinds of things I shouldn’t have understood! I deal with a fair amount of childhood PTSD which expands my empathy but demands or creates constant caution. So, there’s plenty of psychic baggage that can fire up the anxiety machine.
Discovering that I suffer, can suffer, pure anxiety without that tiresome content was in some ways a welcome discovery. You understand? Of course you can use (yes, please edit) anything I share. I’m a kind of carnival backlot Nightmare Alley attraction with simultaneous GN and TN. There are 11 cases in JAMA and I’m one of them.
I don’t know if I can express to you how much it means to me to be able to share this with you and learn from what you share with me. It’s not exactly loneliness that I experience. It’s “aloneness.” I see and hear about these ancient impossible galaxies discovered by the JWST and I think, “That’s where I live.” I want to reread what you’ve written and maybe comment more. But if anything I’ve shared can help anyone, go for it. I still have my sense of humor. I recently changed primary care doctors, and my MD asked me what I take for pain.
I told her I take a drug called “Endure.”
Appendix: About These Conditions
The following background is provided for readers who want clinical context. It is not required to understand the conversation above.
About Cranial Neuralgias
Neuralgia pain is often cited as the most severe pain a human can experience. It can be uniquely agonizing because it stems from a “short circuit” of the nerve itself, causing the brain to interpret even minor stimuli as high-voltage “lightning bolt” electric shocks. This paroxysmal intensity frequently bypasses the body’s normal pain-filtering systems, leading to a state of profound physical and anticipatory distress.
Management of cranial neuralgias remains profoundly challenging because the ‘short-circuit’ nature of the pain is often resistant to standard analgesics, including opioids. Furthermore, when the underlying neurovascular compression is located in high-risk zones near the brainstem or involves complex nerve structures, surgical intervention may be deemed medically hazardous or technically infeasible. As a result, cranial neuralgias have a reputation as a “suicide disease.”
Prevalence
Cranial neuralgias are relatively rare. Of the 12 cranial nerves, neuralgias occur in five; the Trigeminal, Occipital, and Glossopharyngeal Neuralgia are most common. Neuralgia of the Geniculate and Superior Laryngeal nerves are much rarer.
Trigeminal neuralgia (TN) is most common, affecting roughly 0.03% to 0.3% of the general population over a lifetime. The risk is roughly 20 times higher among people with Multiple Sclerosis (MS). Studies show a prevalence of 2% to 9.5% in MS patients.
The 9th cranial nerve, the glossopharyngeal, provides sensation to the back of the throat, the tonsils, the middle ear, and the back third of the tongue. Glossopharyngeal Neuralgia (GPN) is much rarer than TN, with an annual incidence of only 0.2 to 0.8 per 100,000 people.
Co-occurrence of TN and GPN is a “rarity within a rarity.” In a major study at the Mayo Clinic covering 55 years, only 25 patients were identified who experienced both TN and GPN concurrently.
Diagnosis and Treatment Challenges
In general, these conditions are not well understood or well served by medical and counseling communities. As an “invisible” condition, patients are often accused of being hysterical or drug-seeking — an irony, since neuralgias are not effectively addressed by the opioid drugs patients are suspected of seeking. In acute emergency settings, patients with cranial neuralgias often face significant diagnostic bias, frequently being mistreated with ineffective opioids or dismissed due to demographic and mental health stigmas.
For a patient in an active neuralgic crisis, intravenous sodium-channel blockers like phenytoin (Dilantin) are clinically recognized as a more effective and appropriate rescue therapy. Some neuralgia patients carry special instructions for ER doctors or paramedics.
About the Authors
“KJ” has dealt with MS and an inoperable MS-related trigeminal neuralgia pain for 20 years. While typically intermittent, at one point the neuralgia prevented him from speaking or eating solid food for four months before relenting. He still gets brief shocks periodically, mostly in response to unmanaged stress. He spent five years in a wheelchair due to progressive MS and has been out for five years.
“JB” deals with trigeminal neuralgia (face) and glossopharyngeal neuralgia (throat) concurrently, a rare combination that became a case study in a major medical journal. It has persisted for more than 30 years.
KJ and JB have both found meditation, cannabis, and psychedelic therapy to be useful tools in managing their conditions.
