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Migraine is more than a headache – a rethink offers hope

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Re: Migraine is more than a headache – a rethink offers hope

#101

Post by cf100clunk »

munificent wrote: post #78
cf100clunk wrote: post #43

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…

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 "…

> 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.

Re: Migraine is more than a headache – a rethink offers hope

#102

Post by cf100clunk »

usefulcat wrote: post #85
caitlinface wrote: post #70

I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I…

My mom had migraine headaches pretty much all her life. For many years she had been seeing the same doctor for her headaches. Then she got old enough that she was on Medicaid, and she had to stop seeing that doctor because he didn’t accept Medicaid. So she found a different doctor. Different doctor prescribed a different treatment and lo and behold, her headaches pretty much went away after that.

My paternal grandmother was a migraineur, but back in the 1930s she was treated as a "hysterical" woman and given opiates. Her battles could not be overcome and she lived a short life. Thankfully the treatments have evolved.

Re: Migraine is more than a headache – a rethink offers hope

#104

Post by dgacmu »

FloorEgg wrote: post #49

I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes. It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering p…

I'm glad you shared this - I also have light triggered migraines and I didn't realize there were so many others who also did. :) huh! I take ibuprofen and two shots of espresso and lock myself in a dark room and do deep breathing/relaxation -- the latter seems to have been surprisingly helpful for me in the last few years, and makes me wonder if my anxiety response to having the initial aura was actually contributing to worsening the migraine.

My favorite episode was when I went to my doctor, said "yeah, it's good, I haven't had a migraine for like 6 months", and as part of the physical he shined a pen light in my eyes ... and I went home and developed a migraine. sigh.

(Fortunately, some time in my 20s, I stopped getting the headache part for the most part and now just have aura -- which renders me partly unable to see, alas -- and feeling pretty off for a while.)

Re: Migraine is more than a headache – a rethink offers hope

#105

Post by notfed »

ChrisMarshallNY wrote: post #96

I get one about once a decade. My mother got them frequently. Real migraines absolutely suck. A lot of folks describe regular headaches as “migraines,” but they are a pale imitation of the real thing. In my case, they usually start in the morning, but don’t get really excruciating until early evening. I usually figure out it’s a migraine, about lunchtime. Around 9-10PM or so, I puke, then the headache starts leveling…

On the contrary, I'd argue that migraines are probably much more common than diagnosed, rather than the other way around. Migraines, much like seizures, vary in both symptoms and severity.

Re: Migraine is more than a headache – a rethink offers hope

#106

Post by MR_Bulldops »

cf100clunk wrote: post #43

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…

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.

Re: Migraine is more than a headache – a rethink offers hope

#107

Post by DontchaKnowit »

pan69 wrote: post #31
iainctduncan wrote: post #25

I have been a migraineur for decades. Mine are classic aura, with the whole "looking through broken glass" thing for a half hour or so when they happen. This year one of my partner's doctors mentioned positive results from supplementing with Vitamin B-2 and Coenzyme Q10, and it has dramatcially lowered their frequency. Mine are especially bad when the air pressure is seesawing which it does a lot here in the spring a…

> "looking through broken glass" I think we have similar symptoms, but I have no headache, just the "broken glass" that passes over my vision. Usually takes about 15 mins to half an hour or so to pass. This is the best visual representation that I have found of it ove the years: https://imgur.com/gallery/kY0I0Ht

Got this exact thing once last year a few months after recovering from a very bizarre and severe viral infection that ended with about 2 weeks of bells balsy.

It was bizarre. No headache at all. And unlike other posters here, I could still read easily.

I think I had Parvo, no idea for sure tho

Re: Migraine is more than a headache – a rethink offers hope

#108

Post by xvedejas »

Foofoobar12345 wrote: post #99

I used to get frequent migraine attacks - there were times when I would be down 3 days in a week, just unable to be productive. A lot of it was induced by stress. I then tried something novel - I took some LSD. I had an intense psychedelic trip, dug deep into my psyche, realized I was a giant ball of anxiety. The anxiety's root cause was ultimately a fear of mortality (around the same time, my dad was going through a…

Even sub-psychedelic doses of tryptamines is known to have an effect on certain migraines and cluster headaches: https://en.m.wikipedia.org/wiki/Triptan

Re: Migraine is more than a headache – a rethink offers hope

#110

Post by crazygringo »

orthecreedence wrote: post #74
crazygringo wrote: post #66

Earlier quoted context omitted.

What personal observation makes you think everybody has a migraine all the time?

The pounding pain that corresponds with heartbeat. It makes me think there are nerves that register this all the time but there's some part of the nervous system that filters that signal out.

I would suspect it is increased blood flow.

That's why you get a headache from caffeine withdrawal at least, because the blood flow to your brain increases and you then feel the pounding.

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