You handled it with far more grace than I would. A few years ago, my husband and I drove 14 hours to see a cardiologist at a hospital where I thought I would be evaluated for a heart transplant. He saw me for 5 minutes then said I would hear back soon. I lost my shit and told him about how long we drove and that I thought it was going to be an evaluation not just an office visit. He just shrugged and left the exam room.
A month later, we went to Vanderbilt in Nashville and they did a full evaluation that ended with me getting listed and receiving a heart transplant.
My dad was a car salesman many years ago. One day a dentist came to look at new cars and endlessly haggled over the price. Eventually they settled on a price, mostly to get rid of him.
A month or so later, my dad broke a tooth and made an appointment with the same dentist in our one dentist town. Seated in the chair and ready for the treatment to begin, he asked the dentist how much the procedure would cost.
“Well, it depends,” replied the dentist.
“On what?” he asked the dentist.
“There are many factors that affect the price,” said the dentist.
“Here’s my bottom line,” said my dad, “I’ll give you $25.”
The dentist protested. “You can’t do that. I’m a professional.”
“You did it to me. Do you think I go to work everyday just for the love?”
I was on the edge of my seat through this, thinking there'd be a miracle at the end. But then it broke my heart for you 💔 😠 What a farce. Their practice sounds like nothing more than great marketing.
Doctors can suck, I'm sure I don't need to tell you that.
I had the same GP for 15 years who consistently recommended vitamins, magnesium, pain killers, etc...for 15 years. Then he retired and I had to find a new doc. On my FIRST intro visit she gave me samples of Sumatriptan and it worked. I still use it to this day. I know nothing has worked for you and I feel so bad. But my point I guess is that MAYBE you'll find your magic doc out there somewhere 🙏
Medical tourism-- brilliant. While funny, this must be so frustrating. And coconut in the migraine-friendly oat cakes? Jeez.
I don't think my son would have ever been diagnosed the cause of his migraines if it weren't for my sister who had Arnold Chiari Malformation. It's inherited. I was the one who suggested it to his doctor. Go me.
Keep searching. Science is constantly evolving. 🙏🏻
Gosh what lengths to go to get to root cause. When the belief is so strong that there is one, it will take you far. Literally 2,500 miles in this case.
I’ve only ever seen one neurologist state an “inability to regulate emotions” as one root cause alongside brain abnormality. Once I got that bit between my teeth I went hell for leather learning to regulate my emotions.
I’ve also worked with more detailed root cause from an emotional perspective with Louise hays work (you can heal your life). It took me a few years of keeping an open mind with those - my immediate reaction was to dismiss it.
I’m preparing a series of very short posts on recovery where I’m including a resource list of others who’ve shared their journey. I’m noticing several common denominators.
“All in my head” by Paula Kamen is a phenomenal resource, exceptional level of research in there alongside her story in memoir format. It did bring up a lot of anger in me though that this research and knowledge is out there and barely any neurologists or headache specialists the world over have received this level of education.
It’s a hideous journey to be on. Thank you for sharing your srory🙏
The disgusting thing is the number of times I've had to educate my doctors about possible treatments, standard protocols for prescribing meds ... Reminding them of contraindications....
We chronically ill folk are chronically under-cared for in a society that values easy fixes. I cannot count how many times I've been told my health is "complicated." It's always just before yet another referral.
Natalie, I'm so glad I came across your note, it took me to this essay, which I saved because the headline was so intriguing. As I read it, I noticed how the structure of the essay had me dying to know how this would conclude (bravo on that, 1000 style points!). I was also laughing out loud several times (the neuro exam and macarena! Dr. Justasgood) Instant sub, see you around Substack.
Also, I do have to ask, just being in the medical field, for my own curiosity, has anything helped your migraines even a little?
Istiaq, you sure know how to feed my ego!! Thank you for reading and for the kind words 🙏 Many things have temporarily numbed my migraines, but the only things that have helped them in a real sense are all dietary changes.
Gosh, this was painful and infuriating to read -- I can only imagine how much worse it is for you to experience. I'm so sorry that happened, but I FULLY understand your thought process of "perhaps the cure was one trip to New York away." Don't beat yourself up about that choice. Everything will bring you closer to answers. Sending you love!
Looking for answers is a minefield. Migraines are awful and I’m lucky that mine finally went with a beta blocker recommended by a friend who has fibromyalgia and had migraines and the BBs worked for her. Now I rarely get them and when I do if I go lie in the dark and take a strong paracetamol they usually go. But they were nothing like yours. Like you, I’ve been driven mad by doctors, especially when I developed an ibd a few years ago. I’m Swiss, and in Switzerland we tend to belief we have the best medical care in the world, or at least that’s what I hear over and over. For me it’s been a joke. I finally found relief in Spain by a total fluke because my husband ran into an old friend who asked how I was and he said I could barely leave the house, and she said to call a doctor in Barcelona . I had to wait a few months for an appointment, but he prescribed a drug we didn’t have in Switzerland, and it worked immediately. And he sent me to see an immunologist to work out why I have chronic pain all over my body, and I’m being tested for other autoimmune diseases. Funny story : a few months ago in Switzerland I saw a so called phenomenal professor who did a blood panel and when I came in to discuss the results, told me, dismissively, you know madam, you have microscopic collagenous colitis (which I knew, because it’s the name of my disease). It’s microscopic, so very very small. Ok, he wasn’t a gastroenterologist but a toxicologist, but still… I wanted to throttle him because he had no idea what he was talking about! And the blood panel cost my insurance company thousands, and then we wonder why our premiums go up immensely every single year. I have other similarly shocking stories, but this one really takes the cake. Although the guy who wanted to operate a gaping hole in my hip that didn’t exist is also a douche! Anyway. I hope you are not feeling too awful today, and I wish you a very merry Christmas with a migraine miracle. Cesca xx
Traveling to a whole different country for medical care is even more medical tourism than I did! I’m so glad it helped. But isn’t it crazy how so many medical decisions are guided by random encounters with friends? I have many stories like this. Thanks for reading and good luck with the best medical care in the world.
i have different chronic conditions than you do, but i really understand the incredible frustration. i wished i could have given you a hug that day. doctors can be so incredibly awful. and wth with them refusing to see someone who is on medicare even tho they are paying out of pocket????
Thanks for sharing. I suspect someone who hasn't dealt with debilitating symptoms can't understand why you traveled so far... I get it. My husband has taken me on far too many medical vacations.
Sorry the experience didn't bring answers. Sometimes this seeking medical answers feels like being at a carnival... pay your money and take your chances. I think too many of the games are rigged.
Natalie, your post is such a testament to resilience and the complexities of navigating chronic health issues. The way you blend humor with raw honesty is powerful, drawing me into your journey while offering so much to reflect on. The "neurological Macarena" had me both smiling and nodding at the absurdities of medical routines, while the oat cake moment felt like the perfect bittersweet capstone to the ordeal.
Reading this, I felt invited to explore deeper connections between mind and body, especially as migraines, like my own experience with somatoform whole-body pain, can sometimes stem from fascia contractions. These contractions, as I’ve learned, often arise from unprocessed past experiences or high-stress situations that leave their mark on the body.
Have you ever had the chance to explore potential links between psychological patterns, traumatic events, or past stresses and your migraines? I’ve found that this perspective can sometimes unlock new pathways for healing, even alongside conventional treatments.
Thank you for sharing your story so candidly—it inspires reflection and connection in profound ways. If you ever decide to explore this further, I’d love to hear your thoughts. Wishing you moments of ease and curiosity on this challenging yet courageous journey. 💛
You handled it with far more grace than I would. A few years ago, my husband and I drove 14 hours to see a cardiologist at a hospital where I thought I would be evaluated for a heart transplant. He saw me for 5 minutes then said I would hear back soon. I lost my shit and told him about how long we drove and that I thought it was going to be an evaluation not just an office visit. He just shrugged and left the exam room.
A month later, we went to Vanderbilt in Nashville and they did a full evaluation that ended with me getting listed and receiving a heart transplant.
Well, at least you expressed yourself! I am usually just too overwhelmed with the injustice of it all to say anything.
You paid for a service.
My dad was a car salesman many years ago. One day a dentist came to look at new cars and endlessly haggled over the price. Eventually they settled on a price, mostly to get rid of him.
A month or so later, my dad broke a tooth and made an appointment with the same dentist in our one dentist town. Seated in the chair and ready for the treatment to begin, he asked the dentist how much the procedure would cost.
“Well, it depends,” replied the dentist.
“On what?” he asked the dentist.
“There are many factors that affect the price,” said the dentist.
“Here’s my bottom line,” said my dad, “I’ll give you $25.”
The dentist protested. “You can’t do that. I’m a professional.”
“You did it to me. Do you think I go to work everyday just for the love?”
He got his tooth fixed for $25.
Now that’s great health advocacy. Bravo, dad! 👏
Great story!
😮😮
I was on the edge of my seat through this, thinking there'd be a miracle at the end. But then it broke my heart for you 💔 😠 What a farce. Their practice sounds like nothing more than great marketing.
Doctors can suck, I'm sure I don't need to tell you that.
I had the same GP for 15 years who consistently recommended vitamins, magnesium, pain killers, etc...for 15 years. Then he retired and I had to find a new doc. On my FIRST intro visit she gave me samples of Sumatriptan and it worked. I still use it to this day. I know nothing has worked for you and I feel so bad. But my point I guess is that MAYBE you'll find your magic doc out there somewhere 🙏
You can’t win if you don’t play! 😂
Yeah but I HATE that you have to play so much. It's amazing that you can keep your spirits up.
Well, it took me almost a year to find this funny. Your story likewise shows the absurdity of it all! Fifteen years with no basic migraine drugs!
Medical tourism-- brilliant. While funny, this must be so frustrating. And coconut in the migraine-friendly oat cakes? Jeez.
I don't think my son would have ever been diagnosed the cause of his migraines if it weren't for my sister who had Arnold Chiari Malformation. It's inherited. I was the one who suggested it to his doctor. Go me.
Keep searching. Science is constantly evolving. 🙏🏻
Gosh what lengths to go to get to root cause. When the belief is so strong that there is one, it will take you far. Literally 2,500 miles in this case.
I’ve only ever seen one neurologist state an “inability to regulate emotions” as one root cause alongside brain abnormality. Once I got that bit between my teeth I went hell for leather learning to regulate my emotions.
I’ve also worked with more detailed root cause from an emotional perspective with Louise hays work (you can heal your life). It took me a few years of keeping an open mind with those - my immediate reaction was to dismiss it.
I’m preparing a series of very short posts on recovery where I’m including a resource list of others who’ve shared their journey. I’m noticing several common denominators.
“All in my head” by Paula Kamen is a phenomenal resource, exceptional level of research in there alongside her story in memoir format. It did bring up a lot of anger in me though that this research and knowledge is out there and barely any neurologists or headache specialists the world over have received this level of education.
It’s a hideous journey to be on. Thank you for sharing your srory🙏
Sounds like every second opinion I've tried to get. I swear they just read the previous doctors' notes and say the same thing.
It makes me feel like we could be our own doctors!
The disgusting thing is the number of times I've had to educate my doctors about possible treatments, standard protocols for prescribing meds ... Reminding them of contraindications....
We chronically ill folk are chronically under-cared for in a society that values easy fixes. I cannot count how many times I've been told my health is "complicated." It's always just before yet another referral.
We study because our doctors don't want to.
Natalie, I'm so glad I came across your note, it took me to this essay, which I saved because the headline was so intriguing. As I read it, I noticed how the structure of the essay had me dying to know how this would conclude (bravo on that, 1000 style points!). I was also laughing out loud several times (the neuro exam and macarena! Dr. Justasgood) Instant sub, see you around Substack.
Also, I do have to ask, just being in the medical field, for my own curiosity, has anything helped your migraines even a little?
Istiaq, you sure know how to feed my ego!! Thank you for reading and for the kind words 🙏 Many things have temporarily numbed my migraines, but the only things that have helped them in a real sense are all dietary changes.
Gosh, this was painful and infuriating to read -- I can only imagine how much worse it is for you to experience. I'm so sorry that happened, but I FULLY understand your thought process of "perhaps the cure was one trip to New York away." Don't beat yourself up about that choice. Everything will bring you closer to answers. Sending you love!
Looking for answers is a minefield. Migraines are awful and I’m lucky that mine finally went with a beta blocker recommended by a friend who has fibromyalgia and had migraines and the BBs worked for her. Now I rarely get them and when I do if I go lie in the dark and take a strong paracetamol they usually go. But they were nothing like yours. Like you, I’ve been driven mad by doctors, especially when I developed an ibd a few years ago. I’m Swiss, and in Switzerland we tend to belief we have the best medical care in the world, or at least that’s what I hear over and over. For me it’s been a joke. I finally found relief in Spain by a total fluke because my husband ran into an old friend who asked how I was and he said I could barely leave the house, and she said to call a doctor in Barcelona . I had to wait a few months for an appointment, but he prescribed a drug we didn’t have in Switzerland, and it worked immediately. And he sent me to see an immunologist to work out why I have chronic pain all over my body, and I’m being tested for other autoimmune diseases. Funny story : a few months ago in Switzerland I saw a so called phenomenal professor who did a blood panel and when I came in to discuss the results, told me, dismissively, you know madam, you have microscopic collagenous colitis (which I knew, because it’s the name of my disease). It’s microscopic, so very very small. Ok, he wasn’t a gastroenterologist but a toxicologist, but still… I wanted to throttle him because he had no idea what he was talking about! And the blood panel cost my insurance company thousands, and then we wonder why our premiums go up immensely every single year. I have other similarly shocking stories, but this one really takes the cake. Although the guy who wanted to operate a gaping hole in my hip that didn’t exist is also a douche! Anyway. I hope you are not feeling too awful today, and I wish you a very merry Christmas with a migraine miracle. Cesca xx
Traveling to a whole different country for medical care is even more medical tourism than I did! I’m so glad it helped. But isn’t it crazy how so many medical decisions are guided by random encounters with friends? I have many stories like this. Thanks for reading and good luck with the best medical care in the world.
i have different chronic conditions than you do, but i really understand the incredible frustration. i wished i could have given you a hug that day. doctors can be so incredibly awful. and wth with them refusing to see someone who is on medicare even tho they are paying out of pocket????
Thank you for the hug 🤗 If they were claiming to be a run of the mill doc that would have been a litttllle better. I was hoodwinked by the marketing!
Ouch on many levels, Natalie! I really hate it when doctors don't invest time to prep for a consult...
I wish healthcare had a satisfaction guarantee—or your money back!
As a chronic migration sufferer, I completely understand this. No known cause, nothing helps, and I just have to deal with it.
*Migraine LOL
I am enjoying picturing chronic migration disorder! Hang in there, it’s quite a battle but it’s one worth fighting ☺️
I can't believe we can't edit our comments. 🤷♀️😂
Thanks for sharing. I suspect someone who hasn't dealt with debilitating symptoms can't understand why you traveled so far... I get it. My husband has taken me on far too many medical vacations.
Sorry the experience didn't bring answers. Sometimes this seeking medical answers feels like being at a carnival... pay your money and take your chances. I think too many of the games are rigged.
Exactly. You cant win if you don’t play, but the game is no fun and you’re going to lose.
Natalie, your post is such a testament to resilience and the complexities of navigating chronic health issues. The way you blend humor with raw honesty is powerful, drawing me into your journey while offering so much to reflect on. The "neurological Macarena" had me both smiling and nodding at the absurdities of medical routines, while the oat cake moment felt like the perfect bittersweet capstone to the ordeal.
Reading this, I felt invited to explore deeper connections between mind and body, especially as migraines, like my own experience with somatoform whole-body pain, can sometimes stem from fascia contractions. These contractions, as I’ve learned, often arise from unprocessed past experiences or high-stress situations that leave their mark on the body.
Have you ever had the chance to explore potential links between psychological patterns, traumatic events, or past stresses and your migraines? I’ve found that this perspective can sometimes unlock new pathways for healing, even alongside conventional treatments.
Thank you for sharing your story so candidly—it inspires reflection and connection in profound ways. If you ever decide to explore this further, I’d love to hear your thoughts. Wishing you moments of ease and curiosity on this challenging yet courageous journey. 💛