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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

#91

I read a book a while ago. Unfortunately, I don't remember the name (maybe AI can find it), but the premise was based on a metaphor: there are multiple hot air balloons that, together, affect the chance/severity of a migraine. Something like food, sleep, stress, hydration, and one more. One of these "balloons" filling up may be enough to trigger a migraine, while all of them partially filling up can also trigger a mi…

I don’t think this is the same book but it is similar in its thinking: https://www.amazon.com/gp/aw/d/0761125663?psc=1&ref=ppx_pop_...

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

#92
post #52

I started having migraines at 8 years of age, several a week. This persisted all through my life till 42 years later, I had a blood pressure emergency where I ended up in ER with 190/100 blood pressure. Thankfully, it never repeated and was never diagnosed but as a consequence I was put on Olmesartan, a blood pressure medication that relaxes the blood vessels. Eventually, the dose was reduced to the lowest, 5mg, once…

I'm on a sartan and my migraine doctor thought it might help.

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

#93
If you've suffered, seek a current expert (e.g., a neurologist migraine specialist who has recently completed training).

The newer CGRP inhibitors have been highly effective, but that also has made some specialists grow stale in their assessment skills.

Pain is emotionally debilitating, but sorting out complex chronic migraines takes persistence, patience, and an excellent diagnostician. It can take a few long-term trials of treatment and environmental/behavior changes. Be a good patient: bring accurate contemporaneous journals and openness to new suggestions, and stick with an agreed regime pending re-evaluation. Above all, don't just try to power through or mask the pain.

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

#94
post #87

I have been diagnosed with vestibular migraines. No pain, just dizziness and brain fog and vision issues (feels like my eyes don’t point in the same direction). I also have a doctor that says I have symptoms of mold exposure (lots of correlative testing and also house testing and remediation). I have also been diagnosed with temporal lobe epilepsy by my neurologist, but my mold doctor says that is consistent with mol…

Have you tried vestibular rehab? Essentially a series of eye tracking + neck mobility exercises that support the visual and vestibular system.

Yes. A lot of it. It was maybe 10% effective at best.

The way one ENT described it, I have 40% degradation on one side. If it’s constant, your brain adjusts and you are essentially ok. If something happens to vary that then your brain can’t adjust. My theory is that you add inflammation or migraines or epilepsy or all of it and the brain can’t compensate.

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

#95
I can get migraines, but they’re “silent migraines” which means there’s little or no pain aspect. Thankfully it was pretty straightforward to root out the trigger - caffeine. I still love coffee, but I’m decaf only now. I drink Equator Coffee’s natural process decafs.

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

#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 off, until I fall asleep. The next day, it’s as if nothing happened.

I did “short-circuit” one, the last time one started, using advice that I remembered from my mother. I sat in a recliner, in a dark room, with a towel wrapped around the top of my head and eyes (probably looked ridiculous). It’s important not to engage my eyes at all. After a couple of hours, the headache stopped.

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

#97
my wife would get a migraine every single day around 1pm. she scheduled her college around them. she did a bunch of genetic tests, and (this is not science to me, i dont know the process at all) she ended up trying a methylated vitamin b complex, 8333% usda dose, and they dried right up forever. i feel for anyone dealing with them. i got my first one 7 years ago and learned i am sensitive to soybeans. i can pop some raw soybeans into my mouth and have a visual aura and migraine within 30 minutes, it's fascinating.

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

#98
post #8

> Migraine can even drive full-blown visual hallucinations similar to the ‘reflections of the living light’ painted by Hildegard von Bingen, a twelfth-century abbess who was thought to have experienced a condition that is now called migraine with aura. I don't think the aura effects are usually considered hallucinations? I get mild migraines sometimes, with hardly noticeable headache, but with aura. In a way, it's pr…

I also have migraine with aura. There are visual effects but also when I am looking into the mirror I can't see half of my face and give this is a wrong perception of reality you might consider it a hallucination?

the first time i had this, everyone's nose was missing. for ten seconds it was funny and then i hid in a bathroom stall at work, and texted my wife goodbye. i was positive i was about to die. its really stressful to have bodies.

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

#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 terminal illness, we spent many years in and out of ICUs, so a lot of that had soaked into me). I had to come to terms with my own mortality, which happened when I just "melted" away and lost sense of self momentarily, and once I did, I felt so much lighter as I came out of the trip.

My migraines stopped right then and there; I kid you not. I didn't get a single headache for the next 4-5 years, and in general, I was also a lot more balanced and at peace, even though I went through some highly stressful times. It was miraculous.

Of course, life has a way of creeping up on me, and I do get migraines occasionally, but when I do, I know how to stop them - I just need to slow down, meditate (not feel-good meditations all these meditation apps promote, but actually meditate and feel your muscles relaxing). That single LSD trip taught me how to relax myself physiologically.

Not saying this is going to work for everyone, just sharing my personal experience. Please keep in mind that playing with psychedelics is like playing with fire. Exercise caution.

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

#100
I spent most of my life thinking "migraine" was just a really bad headache. Until I started getting migraines. The best way to describe it is a band of white hot pain, almost a stabbing sensation. It started behind the eyes and would spread everywhere. Not confined to my head, a full-on nervous system meltdown: extreme light sensitivity, blurred vision, trouble with balance and coordination, nausea, numbness, and residual effects that lasted over a day. With a migraine, there is no "take an advil and power through" - you sit in a dark room and pray.
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