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Any other migraineurs share what I call "Silver Bullet Fatigue" at trying new treatments? I've been at this for six decades with no magic solution for my own mi

Any other migraineurs share what I call "Silver Bullet Fatigue" at trying new treatments? I've been at this for six decades with no magic solution for my own migraine problems, and I've lost count of all the neurological investigations, meds, scans, treatments, and helpful or sometimes utterly silly suggestions that have come up short over the years. Some have come close but had undesireable side effects, others made me very ill in their own right. At this point I just don't have much desire to go through the treatment wringer again. Am I alone in this sort of fatigue?

munificent 2y ago
Last spring, I broke my ankle severely (trimalleolar fracture with dislocation). I had a very long string of complications following that: fracture blisters, nerve block rebound pain, opioid withdrawal, atrophy, infections, nerve pain, bone fragments, etc. It seems that right when things seem to start going well, a new complication arises. I know it's not rational, but it's really hard to not fall into a mindset of "Why even try to fix this one, another one's going to happen anyway?" And once I start letting myself believe that, I just feel even worse. Even before this happened, I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression. This whole experience has reinforced it. https://en.wikipedia.org/wiki/Learned_helplessness https://en.wikipedia.org/wiki/Learned_helplessness
- cf100clunk 2y ago
  > I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression I like to think of that quality as being a person with a willing desire to be a player on the team trying to solve the health problem, in that I am generally a sunshine-y person and try to see the best in things. To me, that's the key to avoiding despair in facing my chronic, acute migraines. Having said that, it is fatiguing to face batteries of tests once again. If the science is very compelling, I'll consider it.
geye1234 2y ago
CGRP blockers (specifically Nurtec) were practically a silver bullet for me, but unfortunately not for everyone.
MR_Bulldops 2y ago
Hey. I am not a migraine guy but a paroxysmal, full-body, painful hives type of guy. Like some migraine people, my symptoms eventually stopped happening after trying all sorts of things for years, and I can't say precisely what the "cure" really was. Or if I am not just in a 7-year-long remission. Anyway, I experienced this fatigue you speak of. I am not sure this will help you since your fatigue appears to come from blood tests/medical treatments, but hopefully it helps somebody. What helped was when the suggestion was something I could do that was healthier/cheaper/more beneficial than what I was currently doing, I would frame it as, "This might not fix my debilitating problem, but it will improve my life in some way. So, worst case scenario, I'm in the green." Examples (I am not suggesting these as migraine silver bullets, but I am trying to clarify what I mean): - Someone in this thread mentioned cutting out xanthan gum and other thickening agents has helped. Will that cure you? Probably not. Is it a healthy lifestyle change? Probably. Why not try? - I cut out processed food, which helped me realize that I was eating 1-3 frozen Trader Joe's meals per day. - I got an air quality monitor that made me realize the brain fog I felt at night was due to worsening air quality in my home. - I switched to unscented soap and laundry detergent, which was cheaper. (Artificial laundry scent now smells sickly and synthetic to me, which may be a downside.) - I set up reminders for change-by dates for furnace/car filters, vacuuming, dusting etc. I don't know if any of this is why I don't experience symptoms anymore, but I don't regret any of it, and have long-term positive effects regardless. Lastly, after several creams & allergy pills, I stopped getting my hopes up that anything would fix me. Expectation management is essential for avoiding fatigue. Hope this helps you or somebody else. I am sorry you have suffered for so long.
instagib 2y ago
No. I read a migraine book which boiled down to once you figure it out, your migraines change. Meds stop working, life changes, stress, etc. I routinely get month long migraines over the years. I’ve had all the scans, Mayo Clinic visits, eyes checked, and follow-ups. They say it’s helpful to log things or journal but I don’t feel like it much with a migraine and blurred/double vision.
genewitch 2y ago
I'm like this with back pain. I just reminisced the other day about when I was a teen I could straddle on a brick wall and pull with my arms to twist my torso around my hips and just pop the f out of my lower back and hips, then I could stretch and move normally again. This worked for like 2 months. I've tried tiger balm, tens, chiro, heat, cold, exercise, every medicine. I have theracane, davinci back tool, and a long suffering wife who will stand on my back to put enough pressure on the muscles to help. Tumeric, CBD. 7-hydroxymatiglynine nullifies the pain but I puke 60% of the time I take it, about 4 hours later. Mostly I just lay very still and whimper.
binary132 2y ago
For what it’s worth, I got a sleep study and a CPAP machine due to borderline hypertension, coincidentally also stopped taking my migraine prevention medication, and I haven’t had a single migraine since, a year and a few months later. Maybe like half of one, one time. Blood pressure is also back to normal. In my case CGRP agonists made me feel absolutely horrible and actually gave me long-lasting gut trouble that I am still struggling with.

munificent 2y ago

Last spring, I broke my ankle severely (trimalleolar fracture with dislocation). I had a very long string of complications following that: fracture blisters, nerve block rebound pain, opioid withdrawal, atrophy, infections, nerve pain, bone fragments, etc. It seems that right when things seem to start going well, a new complication arises. I know it's not rational, but it's really hard to not fall into a mindset of "Why even try to fix this one, another one's going to happen anyway?" And once I start letting myself believe that, I just feel even worse. Even before this happened, I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression. This whole experience has reinforced it. https://en.wikipedia.org/wiki/Learned_helplessness https://en.wikipedia.org/wiki/Learned_helplessness

cf100clunk 2y ago
> I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression I like to think of that quality as being a person with a willing desire to be a player on the team trying to solve the health problem, in that I am generally a sunshine-y person and try to see the best in things. To me, that's the key to avoiding despair in facing my chronic, acute migraines. Having said that, it is fatiguing to face batteries of tests once again. If the science is very compelling, I'll consider it.

geye1234 2y ago

CGRP blockers (specifically Nurtec) were practically a silver bullet for me, but unfortunately not for everyone.

MR_Bulldops 2y ago

Hey. I am not a migraine guy but a paroxysmal, full-body, painful hives type of guy. Like some migraine people, my symptoms eventually stopped happening after trying all sorts of things for years, and I can't say precisely what the "cure" really was. Or if I am not just in a 7-year-long remission. Anyway, I experienced this fatigue you speak of. I am not sure this will help you since your fatigue appears to come from blood tests/medical treatments, but hopefully it helps somebody. What helped was when the suggestion was something I could do that was healthier/cheaper/more beneficial than what I was currently doing, I would frame it as, "This might not fix my debilitating problem, but it will improve my life in some way. So, worst case scenario, I'm in the green." Examples (I am not suggesting these as migraine silver bullets, but I am trying to clarify what I mean): - Someone in this thread mentioned cutting out xanthan gum and other thickening agents has helped. Will that cure you? Probably not. Is it a healthy lifestyle change? Probably. Why not try? - I cut out processed food, which helped me realize that I was eating 1-3 frozen Trader Joe's meals per day. - I got an air quality monitor that made me realize the brain fog I felt at night was due to worsening air quality in my home. - I switched to unscented soap and laundry detergent, which was cheaper. (Artificial laundry scent now smells sickly and synthetic to me, which may be a downside.) - I set up reminders for change-by dates for furnace/car filters, vacuuming, dusting etc. I don't know if any of this is why I don't experience symptoms anymore, but I don't regret any of it, and have long-term positive effects regardless. Lastly, after several creams & allergy pills, I stopped getting my hopes up that anything would fix me. Expectation management is essential for avoiding fatigue. Hope this helps you or somebody else. I am sorry you have suffered for so long.

instagib 2y ago

No. I read a migraine book which boiled down to once you figure it out, your migraines change. Meds stop working, life changes, stress, etc. I routinely get month long migraines over the years. I’ve had all the scans, Mayo Clinic visits, eyes checked, and follow-ups. They say it’s helpful to log things or journal but I don’t feel like it much with a migraine and blurred/double vision.

genewitch 2y ago

I'm like this with back pain. I just reminisced the other day about when I was a teen I could straddle on a brick wall and pull with my arms to twist my torso around my hips and just pop the f out of my lower back and hips, then I could stretch and move normally again. This worked for like 2 months. I've tried tiger balm, tens, chiro, heat, cold, exercise, every medicine. I have theracane, davinci back tool, and a long suffering wife who will stand on my back to put enough pressure on the muscles to help. Tumeric, CBD. 7-hydroxymatiglynine nullifies the pain but I puke 60% of the time I take it, about 4 hours later. Mostly I just lay very still and whimper.

binary132 2y ago

For what it’s worth, I got a sleep study and a CPAP machine due to borderline hypertension, coincidentally also stopped taking my migraine prevention medication, and I haven’t had a single migraine since, a year and a few months later. Maybe like half of one, one time. Blood pressure is also back to normal. In my case CGRP agonists made me feel absolutely horrible and actually gave me long-lasting gut trouble that I am still struggling with.