Migraine is more than a headache – a rethink offers hope • Hacker News Board

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

#201

Post by savikko » Wed, Feb 19, 2025, 3:43 PM UTC

Just an anecdote, but very close person of mine was diagnosed with migraine when she was 12 yo old so.

Last year, being 40+ years old, suffering from weekly/daily pain events, she found out that diagnose was wrong (one doctor just asked that have you ever thought that this probably isn't migraine) and correct diagnose was Horton / cluster headache.

Eating migraine meds (lots of different ones) for several years were helping, but probably only due placebo effect.

Now, the medicine for headache attacks is simple: breathing pure oxygen for 15 minutes.

After last attack (1.5 year ago, stopped almost immediately breathing oxygen) there has not been any headaches.

Usually, it would not been nice to get diagnose for cluster headache, but on this case it was kind of life saver.

Still, just an anecdote.

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

#202

Post by elric » Wed, Feb 19, 2025, 3:43 PM UTC

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…

I've tried not CoQ10 and high doses of B2, without any impact on my aura frequency or duration. Migraine auras are such a pesky thing which medical science clearly doesn't understand. The typical migraine drugs like triptans are useless for auras, since the drugs typically take longer to kick in that the duration of the aura.

Glad to hear the supplements are working. And you get to impress peope with the colour of your pee!

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

#203

Post by elric » Wed, Feb 19, 2025, 3:48 PM UTC

bootloop wrote: post #42

peterfirefly wrote: post #23

Earlier quoted context omitted.

That doesn't explain the auras. https://en.wikipedia.org/wiki/Aura_(symptom)

I got told that it could be indeed the case that my brain continuously has small seizures but only from time to time they break trough and cause the pain and auras which I would then experience. They wanted to measure the brainwaves to figure out if that was the case. That would also somehow fit what OP said, so I guess this is known in the medical world already. Or at least something in that direction.

Only that's not how auras seem to work. The current understanding is that they are caused by cortical spreading depression - a slow travelling wave which depolarizes the brain cells it passes through. These don't just happen randomly in healthy controls.

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

#204

Post by alabastervlog » Wed, Feb 19, 2025, 3:48 PM UTC

takomako wrote: post #175

alabastervlog wrote: post #56

Earlier quoted context omitted.

I used to get typical migraines, starting around junior year of high school. One every 6-18 months, usually, for years. Visual auras for twenty or thirty minutes, then a few hours of bad headache. Over the years the frequency has swung toward the longer end of that, and now the last three times I haven’t gotten the headache part at all, but other weird symptoms. One time, bad tunnel vision for a while and then feelin…

Have you tried a sumatriptan as soon as the aura starts? Works for me. YMMV.

I haven’t tried anything but excedrine migraine. If I still got a couple a year and they still gave me like 6 hours of killer headaches, I’d probably look into something like that, but the frequency’s been closer to every other year than twice a year and I don’t get much pain with them now, so I’ve not bothered.

Maybe I should, though, given the other comments in this thread about them causing brain lesions…

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

#205

Post by elric » Wed, Feb 19, 2025, 3:51 PM UTC

bregma wrote: post #168

tim333 wrote: post #59

Earlier quoted context omitted.

I sometimes get shimmering patterns which I think they call visual migraine or https://en.wikipedia.org/wiki/Scintillating_scotoma but thankfully mine don't go on to migraine proper. They often seem set of by a bright light outside the center of vision like I'm reading a book with sunlight coming in from 45 degrees.

I've been getting scintillating scotoma for over 50 years. They've changed character over the years from widespread fortifications to virtually no scintillation at all but always progress from a bright spot to a large blind spot to an expanding toroidal blind region with vision restored at the origin point until they pass out of my field of vision. They used to lead to headaches and sometimes speech deficits or other…

Exact same story here, including the occasional speech problem. Well, I've only been getting them for 30 years. It's always reassuring to hear this from people who have been getting them for longer than me. They used to freak me out when I was younger. Still worry me a bit when I get multiple in a single week.

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

#206

Post by ghelmer » Wed, Feb 19, 2025, 3:59 PM UTC

I have experienced migraines since my teens, usually starting with annoying visual artifacts, facial numbness, difficulty speaking, and progressing to intense pain. The worst of them would also cause auditory discomfort. In my 20s, I could reliably trigger a migraine by doing something intensely physical (like playing basketball with friends) and drinking lots of cold water or taking a cool shower. Since then, it's been harder to determine a cause other than stress. About 15 years ago, work was really stressful and I had numerous migraines in a four-month period. Once I even got a demerol IM shot, which seemed like much ado about nothing -- I was hoping for great relief, but it didn't seem to do much. Now in my 50s, I only get about one a year, and it's pretty mild.

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

#207

Post by stackedinserter » Wed, Feb 19, 2025, 4:01 PM UTC

alkonaut wrote: post #143

Lucky enough to get really quick relief from over the counter migraine meds (triptanes) at even tiny doses. Life changing when I realized I didn't have to do just obscene amounts of ibuprofen and coffee for pretty poor results, and even a half of these tiny pills worked.

Careful with them, they can trigger medically-induced migraines if overused. I did that mistake and it went to 3 days migraines every week (and 3x10mg + more every week)

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

#208

Post by qazwse_ » Wed, Feb 19, 2025, 4:25 PM UTC

I always feel a bit weird when reading migraine threads on the internet, because mine seem so much milder, but it's still debilitating. I remember first noticing the migraines in grade when I was 16, but it took me years before realizing they were migraines. I thought that most people had pain like I did, and just powered through with some Advil/Tylenol.

My migraines follow a very regular schedule. I wake up and just know that I will have a migraine. It's like a nagging thought. Worse after days of poor/little sleep, or days where the temperature changes dramatically, or if there is a big storm. At around 14:00 the pain grows in intensity, I feel nauseous and uncoordinated, very sensitive to light. Lying in a dark room and listening to a podcast/YouTube video is the best way to get through this period, I can get to the edge of sleep and it makes it easier. At around 20:00 the pain has usually mostly subsided, and by 22:00 I'm pain free but exhausted.

I tried a few prescription medications after talking with a doctor, but they didn't have much of an effect, so I just accepted that once every 1/2 weeks I would have to deal with it. Whenever I would read about migraines online, I would feel relieved, because mine seemed so much more mild. No aura, the pain is usually gone within a day, and if I needed to be out and about I could manage, even though it was painful.

About 5 years ago an ex-partner offered me a Bufferin (Aspirin mix), and right away it helped with the symptoms. Read into it and saw a study that suggested some people respond well to high-doses of aspirin and caffeine for migraine relief. It worked exceptionally well for me. 9/10 migraines knocked out immediately, with the rest being substantially reduced in length and intensity. I get maybe 1 migraine a year now that is truly bad.

Recently talked to a new doctor who prescribed me propanolol (he was afraid about the high dose of aspirin on my stomach), and it's been just as good.

I just feel fortunate to have easy access to migraine relief, and I hope that others are able to find something that works for them as well.

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

#209

Post by megaman821 » Wed, Feb 19, 2025, 4:39 PM UTC

ne8il wrote: post #190

ErigmolCt wrote: post #138

Earlier quoted context omitted.

Did you have any side effects from the medication, or was it pretty smooth sailing?

I've been on Qulipta (a CGRP drug) daily for about a year now. It started working pretty much immediately, and I cannot think of a single side-effect in use, other than that you will have a withdrawal period pretty much immediately if you miss a dose. Before that I've used Rizatriptan to treat rather than prevent (works well, but can cause brain fog, mood swings and GI issues). In order to get approval for the CGRP I…

There a some small side-effects with Quilipta. I was a bit low energy for a couple a weeks until my body got used to it. Also, it is a mild appetite suppressant. I seem to be able to miss doses of a day or two just fine though. Nurtec also works well for me as an accute migrate treatment.

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

#210

Post by lo_zamoyski » Wed, Feb 19, 2025, 4:40 PM UTC

vasco wrote: post #147

tkzed49 wrote: post #119

Earlier quoted context omitted.

Depersonalization and derealization are truly awful. Having experienced them for non-psychedelic reasons, it's almost indescribable. Sometimes people say "seeing events in third person". My experience was that my consciousness and actions were completely disconnected from my observations of reality. Like, I questioned whether I had any influence at all over my existence. Basic, predictable events were suddenly uncert…

One wonders if that's how it actually is and the rest is just the brain fooling us into having control by way of rationalizing the actions we were going to do anyway.

This suffers from the homunculus fallacy.