The miracles of our lives are scientists, philosophers, teachers, artists physicians, and others who work everyday to make the world better for others. Oh, to be one like your doctor.
This was deeply familiar to me. One of the hardest things about chronic pain is that you don’t “get used to it” in any noble or uplifting sense, you just become skilled at organising your life around it. That’s a different thing entirely. And when it vanishes, even for a few minutes, the feeling is extraordinary, because you suddenly remember that the world is not supposed to hurt all the time. Those moments feel less like comfort than revelation. Thank you for writing this. People talk a lot about pain as a symptom, but not enough about how it colonises time, attention, sleep, language, and hope. Gioia describes exactly that kind of overwhelming, hard-to-explain pain, and the relief he felt after successful surgery.
I knew within the first sentence we shared this pain. Trigeminal Neuralgia, I was diagnosed 2 years ago. Thankfully the medication is working, and I have not had to increase dosages. Great to hear that the surgery is working. **Adding: its true for me too that the pain changes every day. It moves around the face, and intensity varies. Waking up its' unique every single effing day!**
Oh my God,this is what my niece has got. Everything fits. I'm going to share your article with her mother for a start. We live in UK. I don't know if we have access to the sort of treatment you had. Can I though congratulate you on all the writings you have done on culture,entertainment and the businesses that involve both. And none of us knew about your pain. I'm horrified to read what this is but a little relieved to find an identification for my nieces pain. She is an adult so it's her choice to seek further treatment but just having an identification for what it is has got to help. Thank you so much.
Happy to read this. Pain really is one of those experiences that's difficult to describe to others, but you conveyed how excruciating it was very well.
I hope your stature leads more people to Sekula and away from plasma-enriched platelets.
I knew it was Trigeminal neuralgia from the first paragraph, because I am a dentist. I encountered it in many patients - there are different therapeutical approaches, besides decompressive surgery, and the results vary of course. I am glad you feel better after the procedure.
Exactly! I'm a veterinarian and I instantly knew what it was and it's not even a thing that animals commonly suffer! What kind of self-respecting dentist, after seeing there is no dental cause for the pain dismisses the very real pain of the patient and says "you're probably biting too hard?" Should be deregistered.
Thank you Ted for sharing your story…and importantly, for continuing to write through your suffering. It sounds like you went through hell and I’m so pleased your outlook is great! Pain is a beast. My husband has suffered from chronic pain for 25 years and over the last 3 or 4 it’s evolved into severe nerve pain when he lies down, making sleep impossible most nights. It’s horrible to watch! And there doesn’t seem to be many treatment options for his type of nerve pain. Stories like yours mean we will continue to search though! Thanks.
My mother suffered from intermittant trigeminal neuralgia. A natural stoic, she suffered greatly and quietly. As a retired physician, thanks to the should-be-in-prison Sacklers and DEA fear, American physicians undertreat pain - a massive medical failure. I would replace "do no harm" as the first law of medicine with " first, treat the pain". You must be gratefully joyous at your cure; i am.
From the first lines I suspected it was trigeminal neuralgia. I was also a suspect of this (no idea if it was really this or other thing), but I got lucky, the pain went away within a week or so with carbamazepine (which is indeed used to treat this).
Very happy for you to have escaped this debilitating pain!
To you and your physician, a heartfelt thank you for sharing this. In these times of division and decay, it's quite wonderful to hear a story of healing and achievement.
First thought when I started reading the second paragraph… OMG, I suffered through TN for a couple of years before 15 or so years ago. I wanted to die. I need to reread your story because all I could do is skim so far. Brought back too many literally painful memories. Awoke the fear of it coming back one day (not your fault - I get triggered every so often when something reminds me). Your story gives me hope but with other things burdening me right now I can’t deal with the thought right now. Best of luck and I hope this did the trick and you’ll never have to deal with it again.
So glad you found such great help, Ted! And that the surgery took.
Not to compare weird health tales, but I have an eye condition so rare that most ophthalmologists will never see a case in their lifetime. But have it I do, and it's why I can consistently spell "ophthalmologist".
It can be a nasty, insidious one, but my doctor teaches about this condition at conferences. If I ever need surgery, she's my absolute go-to. If I move, I'm still going to find a way to get my appointments through her office. Good doctors are invaluable.
Yes indeed. Just WHERE would a person find one right now ? My current "doctor?" ,when asking me what is wrong I described the issue. She got a very sad ,pained look on her face ,then hung her head sadly & Oh so Empathetically & basically moved on with out a mention of what I said ... nothing. That's what you get from pretty much everyone these days. I'm going to set up a video consult with my old doc who no loner works with Medicare. at least HE will have ideas.
My dad had a similar experience. A week after he retired, I was sitting across the kitchen table from him while he was eating some soup, and that's when the pain was first triggered. His progressed faster than yours I think. He didn't have long pauses in it. He also,fortunately, had a dentist who knew what it was. He had some sort of surgery similar to yours, and it cured him, but getting to that point was an ordeal. Some days it literally hurt to brush his teeth. I'm very glad you got the relief, but I'm kind of surprised it took people that long to diagnose it. I do hope this helps others because it is a terrible condition.
The miracles of our lives are scientists, philosophers, teachers, artists physicians, and others who work everyday to make the world better for others. Oh, to be one like your doctor.
What a warm way to put it and this piece really does make you feel grateful for the people who do that work.
This was deeply familiar to me. One of the hardest things about chronic pain is that you don’t “get used to it” in any noble or uplifting sense, you just become skilled at organising your life around it. That’s a different thing entirely. And when it vanishes, even for a few minutes, the feeling is extraordinary, because you suddenly remember that the world is not supposed to hurt all the time. Those moments feel less like comfort than revelation. Thank you for writing this. People talk a lot about pain as a symptom, but not enough about how it colonises time, attention, sleep, language, and hope. Gioia describes exactly that kind of overwhelming, hard-to-explain pain, and the relief he felt after successful surgery.
The line about pain colonising time and language is exactly right and I am so glad he wrote about this.
I knew within the first sentence we shared this pain. Trigeminal Neuralgia, I was diagnosed 2 years ago. Thankfully the medication is working, and I have not had to increase dosages. Great to hear that the surgery is working. **Adding: its true for me too that the pain changes every day. It moves around the face, and intensity varies. Waking up its' unique every single effing day!**
Really glad the medication is working and thank you for sharing that, it adds so much to this piece.
Oh my God,this is what my niece has got. Everything fits. I'm going to share your article with her mother for a start. We live in UK. I don't know if we have access to the sort of treatment you had. Can I though congratulate you on all the writings you have done on culture,entertainment and the businesses that involve both. And none of us knew about your pain. I'm horrified to read what this is but a little relieved to find an identification for my nieces pain. She is an adult so it's her choice to seek further treatment but just having an identification for what it is has got to help. Thank you so much.
Three cheers for Dr. Sekula, the Trigeminal Man!
Happy to read this. Pain really is one of those experiences that's difficult to describe to others, but you conveyed how excruciating it was very well.
I hope your stature leads more people to Sekula and away from plasma-enriched platelets.
Yes to Dr. Sekula and yes to writing this so honestly, it means a lot to those of us who have had unexplainable pain.
I knew it was Trigeminal neuralgia from the first paragraph, because I am a dentist. I encountered it in many patients - there are different therapeutical approaches, besides decompressive surgery, and the results vary of course. I am glad you feel better after the procedure.
Exactly! I'm a veterinarian and I instantly knew what it was and it's not even a thing that animals commonly suffer! What kind of self-respecting dentist, after seeing there is no dental cause for the pain dismisses the very real pain of the patient and says "you're probably biting too hard?" Should be deregistered.
I believe its known in horses
Thank you Ted for sharing your story…and importantly, for continuing to write through your suffering. It sounds like you went through hell and I’m so pleased your outlook is great! Pain is a beast. My husband has suffered from chronic pain for 25 years and over the last 3 or 4 it’s evolved into severe nerve pain when he lies down, making sleep impossible most nights. It’s horrible to watch! And there doesn’t seem to be many treatment options for his type of nerve pain. Stories like yours mean we will continue to search though! Thanks.
My mother suffered from intermittant trigeminal neuralgia. A natural stoic, she suffered greatly and quietly. As a retired physician, thanks to the should-be-in-prison Sacklers and DEA fear, American physicians undertreat pain - a massive medical failure. I would replace "do no harm" as the first law of medicine with " first, treat the pain". You must be gratefully joyous at your cure; i am.
Pain is actually a fascinating topic for conversation, and this story was riveting. I am happy for you that the surgery has been a success.
Riveting is the word and the detail he brings to describing it makes it feel so vivid.
From the first lines I suspected it was trigeminal neuralgia. I was also a suspect of this (no idea if it was really this or other thing), but I got lucky, the pain went away within a week or so with carbamazepine (which is indeed used to treat this).
Very happy for you to have escaped this debilitating pain!
Oh this sounds worse than the worst toothache, which is the most unbearable pain that I can imagine so I’m very happy that you managed to tackle it.
It is.
To you and your physician, a heartfelt thank you for sharing this. In these times of division and decay, it's quite wonderful to hear a story of healing and achievement.
First thought when I started reading the second paragraph… OMG, I suffered through TN for a couple of years before 15 or so years ago. I wanted to die. I need to reread your story because all I could do is skim so far. Brought back too many literally painful memories. Awoke the fear of it coming back one day (not your fault - I get triggered every so often when something reminds me). Your story gives me hope but with other things burdening me right now I can’t deal with the thought right now. Best of luck and I hope this did the trick and you’ll never have to deal with it again.
So glad you found such great help, Ted! And that the surgery took.
Not to compare weird health tales, but I have an eye condition so rare that most ophthalmologists will never see a case in their lifetime. But have it I do, and it's why I can consistently spell "ophthalmologist".
It can be a nasty, insidious one, but my doctor teaches about this condition at conferences. If I ever need surgery, she's my absolute go-to. If I move, I'm still going to find a way to get my appointments through her office. Good doctors are invaluable.
"Good doctors are invaluable"
Yes indeed. Just WHERE would a person find one right now ? My current "doctor?" ,when asking me what is wrong I described the issue. She got a very sad ,pained look on her face ,then hung her head sadly & Oh so Empathetically & basically moved on with out a mention of what I said ... nothing. That's what you get from pretty much everyone these days. I'm going to set up a video consult with my old doc who no loner works with Medicare. at least HE will have ideas.
What condition do you have? I too have a rare one (OCP) - took 4 years to get the right diagnosis!
I've got pigment dispersion; after these past few years I'm still learning about what it is. I hope you found a decent doc!
Congratulations! And thank you for sharing. What a remarkable story. And it wrote itself (sort of)!
My dad had a similar experience. A week after he retired, I was sitting across the kitchen table from him while he was eating some soup, and that's when the pain was first triggered. His progressed faster than yours I think. He didn't have long pauses in it. He also,fortunately, had a dentist who knew what it was. He had some sort of surgery similar to yours, and it cured him, but getting to that point was an ordeal. Some days it literally hurt to brush his teeth. I'm very glad you got the relief, but I'm kind of surprised it took people that long to diagnose it. I do hope this helps others because it is a terrible condition.