[HN Gopher] Migraine is more than a headache - a rethink offers ...
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Migraine is more than a headache - a rethink offers hope
Author : rntn
Score : 243 points
Date : 2025-02-18 15:47 UTC (1 days ago)
(HTM) web link (www.nature.com)
(TXT) w3m dump (www.nature.com)
| markx2 wrote:
| I was around 13 when I had my first migraine. A solid block of
| pain on the right side of my head. That occasional migraine
| became more frequent over the years. I had a headache 24/7 in one
| specific place in my head.
|
| In my early 30's, after blood tests, food elimination, x-rays and
| finally an MRI I was told that I had Chronic Daily Migraines.
|
| Most days were 6-7/10 pain. Those days that were 10/10 I
| perfected the art of lying down and breathing in such a way that
| I barely moved. Noise / light were never an issue, the pain got
| worse when I moved.
|
| Then I got a daith piercing.
|
| I had read that a daith could help.
|
| I got the daith ~14 years ago and I have not had any sort of
| headache since. Both my daughters who had migraines got a daith
| and they too have no headaches.
|
| I get the sample size is not useful, but if you have migraines,
| go into your local proper piercing studio and ask for a daith -
| they will almost certainly reply "On which side of your head is
| the pain?"
| canadiantim wrote:
| fascinating, thanks for sharing
| ToDougie wrote:
| truly fascinating comment..... will have to research this
| further!
| isoprophlex wrote:
| If this is because of the piercing doig some vagus nerve
| stimulation, do you think a simple, small clip or something
| placed in the right position could help as well?
| markx2 wrote:
| That I do not know.
|
| It's worth trying but the positioning would be tricky.
|
| All I know is as I have posted - the daith piercing stopped
| the pain.
| isoprophlex wrote:
| Thanks anyway, I'm definitely looking into this.
|
| Suffering from the occasional migraine myself (3-4x year)
| it seems a bit too drastic for myself... but my wife has
| very frequent migraines, anything that could possibly help
| is worth investigating
| markx2 wrote:
| I got a new puppy - Dogue de Bordeaux - some months ago
| and she was/is on a raw food diet, so I had to get that
| delivered frozen.
|
| Couple of deliveries in and I got chatting to the guy
| bringing the food. He mentioned he had headaches
| constantly. I told him about the daith.
|
| Days later he messaged me - he'd got a daith after we
| talked and today, for the first time in 10+ years he woke
| in no pain, no need to take codeine.
|
| Just go to a proper piercing place, not some "Claire's"
| type place.
| spondylosaurus wrote:
| Try https://safepiercing.org/ !
| orthecreedence wrote:
| I've heard of this piercing so many times and always wrote it
| off as some mass hypnosis quick fix that would change nothing.
| Your comment made me reopen that box I closed years ago. I'm
| very curious now.
|
| Did you get the piercing on your left or right ear?
| markx2 wrote:
| Right ear because the pain was on the right side of my head.
| jmhammond wrote:
| I'm willing to try it! Are you able to wear earbuds with the
| daith piercing? Airpods Pro are one of my most-used pieces of
| tech both at work live-streaming classes and at home listening
| to books and music.
| markx2 wrote:
| Yes!
|
| I have worn various and my current are Airpods 2 Pro.
|
| The daith is discreet, does not get in the way of anything.
| seattle_spring wrote:
| What about wearing a winter hat? I was considering getting
| one for the exact reasons as you, but I live in a pretty
| cold area and not being able to wear a hat for 6 months
| during its healing process is unfortunately a dealbreaker.
| markx2 wrote:
| Unless the hat has a hard edge which sits right on top of
| the piercing you should be fine.
| whutsurnaym wrote:
| Throwing in my anecdata:
|
| I had migraines at least once every two weeks for most of my
| life. Nothing too out of the ordinary, just that 7/10 dull pain
| in the center of my head that shut me down for 5 or 6 hours.
|
| I'm very skeptical about supposed instant fixes like this. I
| didn't expect it to work, but I wanted to start getting ear
| piercings and I figured I'd give it a shot with something not
| too flashy. I went with my wife to her piercing appointment and
| convinced them to pierce my left daith while we were already
| there.
|
| That was at least seven years ago. I haven't had a migraine
| since. I keep assuming it's placebo and it'll wear off, but it
| hasn't.
| LeoPanthera wrote:
| Research says it's no more effective than a placebo, but hey,
| if it works, it works.
|
| https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/...
| dumbfounder wrote:
| I have tried vagus nerve stimulation and it worked for about
| a week and then became mostly ineffective. That is consistent
| with this study. So, maybe try vagus nerve stimulation first
| and see if that works long term.
| willy_k wrote:
| > Research says it's no more effective than a placebo, but
| hey, if it works, it works.
|
| The paper you cited doesn't say this, if anything it says the
| opposite. It found that it reliably works for some amount of
| time, but the mechanism is unclear.
|
| "In all case studies and the retrospective study, patients
| reported substantial reductions in pain immediately after
| daith piercing; however, headache symptoms recurred several
| weeks to months thereafter. From the perspective of the
| Chinese and Western auricular systems, no sufficient
| explanation for the described treatment effect of daith
| piercing was found."
| stuckonempty wrote:
| A piercing that takes months to heal and has its own
| potential side effects (infection for one) does not seem
| worth weeks of relief after which pain returns. The authors
| of this study therefore do not recommend this piercing for
| migraines despite the transitory benefits
|
| "current evidence does not support daith piercing for the
| treatment of migraine, tension-type headaches, or other
| headache disorders."
| willy_k wrote:
| That's very different from being equivalent to placebo.
| And according to anecdotes in this thread, it may be
| permanent in some cases.
| aszantu wrote:
| I seem to get migraines from plant fats and stimulants like
| caffeine.also caffeine withdrawal.Been drinking chaga coffee a
| few days and feel so much better in the evening
| greenavocado wrote:
| Magnesium L-Threonate changed my life. I no longer experience
| headaches daily.
| entangledqubit wrote:
| If this ever stops working for you, try one of the magnesium
| mixes like MagTech.
| cenazoic wrote:
| Yes! I'm a 50+ woman diagnosed as a teenager, and daily
| magnesium changed my life. I rarely get a migraine these days,
| and I'm glad to hear it's effective for others.
| wozer wrote:
| > 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 pretty cool. You can directly
| perceive the abnormal brain activity and how it develops in real
| time. (I get the classic zigzag lines wandering across the field
| of vision.)
| readyplayernull wrote:
| AI hype terminology? Should be a visual effect.
| graypegg wrote:
| Hallucination is a medical term.
| https://en.wikipedia.org/wiki/Hallucination
|
| The usage in relation to AI is a reference to the medical
| term, not the other way around.
| bootloop wrote:
| 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?
| constantlm wrote:
| When I have aura it's always morbidly fascinating to me how a
| part of my vision is not black, but it's just "missing"
| orthecreedence wrote:
| Same, the fortification aura is really kind of amazing,
| putting aside the debilitating pain that's quickly
| approaching. It's really weird to have a part of your
| vision just "not there" as opposed to being black. It's
| even stranger when looking at a face or some recognizable
| object, and half of it disappears into nothingness while
| the other half still exists. Fun to play with.
| digitalsushi wrote:
| 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.
| soupfordummies wrote:
| my mom used to get these and said it was like "seeing dots"
|
| anecdotally of course too, but is it more common for women?
| I've only ever known 3-4 people that got these kinds of
| migraines and they were all women.
| isoprophlex wrote:
| I sometimes but not always get an aura before a migraine.
|
| Which was pretty fun the first time i got an aura, as i was
| working in a chemistry lab. I described what was happening
| (loss of vision, flashes of light, rapidly oscillating black
| and white patterns) to this greybeard lab technician and
| within 5 minutes the entire lab was evacuated, out of fear of
| some weird chemical poisoning us all.
| bootloop wrote:
| Yes, its much more common for women, its rare for men.
| doubled112 wrote:
| I happen to be a man who gets migraines with aura, but I do
| think they're more common in women. They started when I was
| 14.
|
| I get visual issues like tunnel vision and sparklies, but I
| also get numbness in my face and extremities, confuse my
| words (right parts of speech, not what I intend to say), and
| often vomit.
|
| Needless to say, the first one scared the crap out of my
| mother and I.
|
| I may or may not have a headache when this happens.
|
| Neat, eh? I was talking to a guy who suffered from seizures
| in college, and apparently his "aura" is very similar, and
| I've always wondered if there was some connection since my
| father also suffers from epilepsy.
| tbirdny wrote:
| Migraines and epilepsy have a lot in common, including some
| symptoms and triggers. Drugs and things that lower seizure
| threshold also tend to cause migraines. Some epilepsy drugs
| also act as migraine prophylactics.
| bpye wrote:
| > I get visual issues like tunnel vision and sparklies, but
| I also get numbness in my face and extremities, confuse my
| words (right parts of speech, not what I intend to say),
| and often vomit.
|
| I've experienced migraines for years, but last year had my
| first instance that messed with speech. It certainly
| unsettled the friend I was with at the time.
| valbaca wrote:
| I'm male and I get visual auras with migraines (not often,
| only once or twice a year). It's like a small area of old TV
| static or (as I call them) "dead pixels" in my vision. It's
| usually centered right in the middle of my vision, so reading
| becomes impossible but I could do something else.
|
| It usually spreads a little bit before dissipating. They can
| happen with or before the actual migraine pain.
| rconti wrote:
| > "I used to think that disability travels with pain, and it's
| only when the pain gets severe that people are impaired. That's
| not only false, but we have treatments to do something about it,"
| says Richard Lipton, a neurologist at the Albert Einstein College
| of Medicine in New York City.
|
| Am I the only one unable to grok this statement?
| orthecreedence wrote:
| He's saying that he used to just view the pain of migraines as
| a disability, but now realizes that there are other components
| to migraines besides pain that cause disability (such as brain
| fog, emotional instability, blindness, etc)
| rconti wrote:
| Thank you, that makes more sense now; with that explanation I
| can re-read the original quotes.
| orthecreedence wrote:
| I think "travels with" is an odd phrasing that distracts
| from the meaning of the sentence. It took me a while to
| parse as well.
| rconti wrote:
| Right- even though I was able to figure that bit out on
| second or third reading, it threw me enough that the
| second clause didn't truly make sense. Also, the subjects
| of "That's not only false" and "to do something about it"
| are _different_. So my train of thought kept derailing.
|
| And this is for a native english speaker!
| tiltowait wrote:
| I think everyone who suffers migraines has their own
| "relationship" with them.
|
| Myself, I can tell when I am "pre-migraine" and know I have to
| sit down for a bit lest one develops. They most often come from
| eating junk food after exercise (I'm looking at you, Fritos). And
| warming my hands often helps speed the recovery, though I always
| end up with "tender brain" for 24-48h after.
|
| I'm intrigued by another poster having success with Magnesium
| L-Threonate and will be placing an order today. Even if I don't
| have a migraine, I have a headache 8 days out of 10.
| mh- wrote:
| _> They most often come from eating junk food after exercise
| (I'm looking at you, Fritos)._
|
| Dehydration causes a good portion of mine, at least of the ones
| that I can point to a proximate cause of. I wonder if that's
| what you're experiencing, with the salty food after sweating?
| tiahura wrote:
| My eyes were opened a few years ago when I was reading my mom's
| brain mri report. She had cancer and was undergoing radiation
| treatment. The MRI noted lesions and said they could be due to
| cancer/radiation OR MIGRAINES!
|
| Holy moly! Migraines can cause brain damage!
| bootloop wrote:
| Anything backing this up except that one report? I haven't
| heard of headaches or migraines causing permanent damage.
| tiahura wrote:
| Migraine Is Associated With Magnetic Resonance Imaging White
| Matter Abnormalities https://jamanetwork.com/journals/jamaneu
| rology/fullarticle/7...
|
| "Research suggests that the answer is yes. Migraines can
| cause lesions, which are areas of damage to the brain."
| https://www.webmd.com/migraines-headaches/migraine-brain-
| les...
| dboreham wrote:
| Some kind of local thermal overload?
| spondylosaurus wrote:
| Can confirm, I had a brain MRI in my early 20s and had a
| number of white matter lesions that were supposedly caused by
| migraines. No other cognitive or neurological issues. But I'm
| due for another scan soon and hoping they haven't worsened :P
| weddpros wrote:
| Search Migrainous Infarction. I had one when I was 32 (53
| now). It's very rare, but a migraine can cause a stroke (ie.
| permanent brain damage), because of impaired blood flow. It
| left me with a permanent scotoma ("black" hole in my fov,
| visible from both eyes and with both eyes open).
|
| I was scanning the comments to see if anyone needed that
| information.
|
| If the aura doesn't stop after an hour, better go to the
| hospital (aura means reduced blood flow). Also NEVER take
| triptans during an aura.
| marsovo wrote:
| Might be a question of cause and effect. My neurologist
| theorized my migraines were triggered by microemboli leaking
| through a PFO (leak between left and right side of the heart:
| normally the lungs filter this stuff out)
|
| PFO closed, migraines basically gone.
|
| PFO can lead to stroke too for the same reason, and that's
| when it's usually closed, after a stroke. Not all migraines
| are caused by PFO. I went on blood thinners first for a year
| as a test.
|
| Here's the long story version:
| https://news.ycombinator.com/item?id=40895116
| bootloop wrote:
| After checking on my migraine with aura by doing a MRI they found
| a large AVM in my brain which could kill me any time.
|
| So if you get the chance, take an brain MRI. You never know what
| they might find.
| orthecreedence wrote:
| I've thought for a long time now that everyone has a migraine all
| the time, but migraine sufferers temporarily lack the brain's
| ability to ignore the ever-present pain.
|
| In other words, the migraine isn't the addition of pain, but the
| absense of a pain relief mechanism. I have no sources to back
| this up, other than personal observation.
| peterfirefly wrote:
| That doesn't explain the auras.
|
| https://en.wikipedia.org/wiki/Aura_(symptom)
| bootloop wrote:
| 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.
| elric wrote:
| 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.
| groestl wrote:
| Well, I think the Auras is my brain failing to filter out
| visual noise, which then get's into a feedback loop and
| builds up. And that might be related to other filter
| functions failing. I think that, becaus4 once in a while, I'm
| able to suppress the Aura conciously, when it is still very
| small.
| nextos wrote:
| Some auras have a musculo-skeletal origin. For example,
| some neck issue irritates a nerve or alters the pressure in
| a blood vessel, which in turn affects the optic nerve.
|
| I have suffered them myself, and they always came in a
| sequence: arm pain, neck pain, headache and aura. Finally,
| I'd release tension in my neck and it'd be gone.
|
| My doctor confirmed injuries in cervical discs also seem to
| be causally linked to auras, but there might be other
| causes as well.
| crazygringo wrote:
| What personal observation makes you think everybody has a
| migraine all the time?
| orthecreedence wrote:
| 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.
| crazygringo wrote:
| 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.
| genewitch wrote:
| Also tinnitus is said to always be present but the brain
| can fail to filter it sometimes.
|
| Like right now for me wtf
| ianburrell wrote:
| If you have pounding pain from heartbeat, you should go see
| a doctor. That is not normal.
|
| One feature of migraines is not just a headache. Some
| people can feel it coming, called the aura. I feel weird
| during and after the headache. I frequently get the
| migraine weird feeling without the headache, so-called
| silent migraine. Migraines and normal headaches feel
| different.
| iainctduncan wrote:
| 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 and fall, but I
| would guess I'm down to something like 20% of the previous years
| numbers.
|
| Definitely worth trying.
| pan69 wrote:
| > "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
| bootloop wrote:
| Yes that's silent migraine with aura, you experience the
| visual effects but not the headache. It's rare but happens
| for some people.
|
| The representation is really good in my opinion! Gives me
| flashbacks.
| iainctduncan wrote:
| I suppose an even better one would be "looking through
| broken glass that keeps fucking moving around".
|
| The weirdest thing I discovered was that, back when I
| juggled professionally, I couldn't read at all during that
| aura but could still juggle, even hard things like 5+
| balls. Strangely it did not screw up peripheral vision.
|
| Worst time was when it came on before a music school
| performance. Not a hope in hell of keeping track of which
| line the little circles were on...
| alabastervlog wrote:
| 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 feeling like I _had to_ go
| to sleep immediately. Another, just a weird disconnected
| /disembodied feeling for a couple hours. The most recent, I
| got fairly bad aphasia for ten or fifteen minutes, which is
| the fist time anything like that's happened to me. Not just
| trouble thinking of words, though that too, but knowing the
| word I wanted to say and having something else come out
| instead, no matter how many times I tried.
|
| Migraines are weird.
| takomako wrote:
| Have you tried a sumatriptan as soon as the aura starts?
| Works for me. YMMV.
| alabastervlog wrote:
| 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...
| graypegg wrote:
| The one aspect this misses that's so hard to communicate is
| the lack of visual processing inside the sort of curled aura
| "area". When I was getting them often as a kid, I would
| basically become illiterate over the course of 15minutes,
| because anything in that shimmering area was not parseable. I
| could SEE the shape of a letter, but I couldn't read the
| word. That shimmering area grows and grows till it's covering
| all of your vision, but near the start you can still read out
| of one side.
|
| It was by far, the part of migraines I hated the most as a
| kid because it took intense pain that people assume you're
| overblowing, and prefaced it with 30-45 minutes of people
| thinking I was an idiot/doing some weird awkward joke. (Or
| having a stroke! The dread of not being able to speak
| correctly, not being able to read, a slow pain in my temple
| getting stronger and stronger, and now the teacher is calling
| 911 while the class starts screaming.)
| DontchaKnowit wrote:
| 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
| anonzzzies wrote:
| Ah yes, that visual is perfect. I showed something similar to
| a friend a long time ago and they said 'that's migraine? i
| have that every few weeks but not much else so never thought
| much of it; i thought migraines meant headaches'.
| abrookewood wrote:
| Just want to second this. I was getting migraines every 2 weeks
| (visual auras, thumping headache for 3-6 hours etc) mainly
| triggered by stress & lack of sleep as far as I could tell.
| Started taking Vitamin B and I haven't had a migraine since -
| for over a year).
|
| There is research to back this up as well: -
| https://pubmed.ncbi.nlm.nih.gov/33779525/ - Conclusion: Vitamin
| B2 400 mg/day significantly reduced the duration, frequency,
| and pain score of migraine attacks.
| panta wrote:
| There seems to be a link between migraines and Mithocondrial
| Disease. If frequency/intensity of migraines diminishes with
| Vitamin B and Q10, it may be worth investigating. Especially if
| you have muscular fatigue or exhaustion.
| elric wrote:
| 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!
| tbirdny wrote:
| First, I know different people have different triggers from me. I
| used to have migraines every few days to every few months from
| age 13 to 23. These would incapacitate me. I would get the aura
| and be almost blind for an hour, then throw up a couple times,
| and have a bad headache for 2-4 hours, then I could function
| again but still felt crummy for the next 24 hours. I noticed that
| pickles were a trigger, and I thought "pickles have a lot of
| sodium". So, out of desperation as something to try, I read the
| labels of everything I was eating and cut out everything that had
| more than a little sodium: frozen pizza, frozen dinners, deli
| meats, etc. At the time I was having migraines every few days,
| and then I didn't have another migraine for years. I was so glad
| they stopped. I now doubt it was the sodium. In cutting out
| sodium, I happen to cut out processed foods, which includes lots
| of suspicious ingredients. I suspect Tyramine was the main
| culprit. There's a diet called The Headache Diet that is focused
| on minimizing Tyramine. Guess what else pickles have a lot of?
| For last last 30 years, here are all the things that have caused
| my migraines: Lithium Carbonate (Orotate is OK), Pickled Herring
| (Tyramine), Soy Sauce (Tyramine), Hyaluronic Acid (synthetic,
| Mobilee is OK), Tianeptine, Sulbutiamine, and a strobe light.
| Every migraine I have had in the last 30 years can be explained
| by those - only 8-12 migraines total. I still precisely control
| my sodium and eat no processed foods.
| JKCalhoun wrote:
| I too had nausea, auras with migraines when I was a teen. I
| think I outgrew them. That or it was my girlfriend at the time
| (I was about 20) that gave would snap my neck -- like some kind
| of self-taught chiropractor.
| cf100clunk wrote:
| 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 wrote:
| 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
| cf100clunk wrote:
| > 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 wrote:
| CGRP blockers (specifically Nurtec) were practically a silver
| bullet for me, but unfortunately not for everyone.
| MR_Bulldops wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| takklz wrote:
| I get migraines when I drink too much water! Not even kidding.
| Full blown visual aura followed by intense pain for a day.
| FloorEgg wrote:
| 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 pattern faded the blistering
| pain would start and last for about 5 hours, with lingering light
| sensitivity until the next day.
|
| I later realized that something about a rapid change in
| brightness (from dark to bright) would trigger them for me.
|
| Another time was triggered by a high school shop teacher lighting
| a welding torch.
|
| The best way to relieve the pain I found was to turn out all the
| lights and dunk my head in cold water, which I discovered
| eventually in desperation for relief.
|
| I would only get them every few months, but when I did I would be
| pretty useless for most of the day. I stopped getting them in my
| early 20s. No idea why, but I am grateful. They sucked!
| tim333 wrote:
| 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.
| fahrnfahrnfahrn wrote:
| I've had fewer than a dozen episodes starting last year.
| Luckily, like you, I have scintillating scotoma without
| headache. I haven't noticed a trigger--they're just
| spontaneous. A couple of years before, I had a couple of
| episodes of binocular diplopia
| (https://www.yalemedicine.org/conditions/double-vision).
| Dunno if they're related.
| Analemma_ wrote:
| I've mentioned this before in previous HN threads about
| scintillating scotomas, but it's worth repeating: in my case,
| the issue was entirely due to excessive caffeine consumption.
| When I got them frequently I was sometimes consuming upwards
| of 450mg/day, when I cut intake way down they disappeared
| entirely, and when I occasionally fall off the wagon and have
| way too much that's when they come back.
| jen729w wrote:
| Exactly the same trigger here. I had one just the other day
| at the pub. Sitting outside, under shade, but to my left was
| a bright spot. It's weird how I can sense it arriving ...
| something about the quality of my vision subtly changes, and
| there it is.
|
| Fortunately for me it isn't accompanied by a headache. It's
| just really unsettling. At least now I've learned to
| recognise them and I just try to chill out while it does its
| thing.
|
| (FWIW, also a tremendous consumer of caffeine here. But this
| was at 17:00, a good 5 hours after my last cup.)
| tw04 wrote:
| For whatever it's worth, too much caffeine and dehydration
| does this to me. Chugging about 48 oz of water and throwing
| on a face mask for 30-60 minutes usually clears it up. If I
| do "nothing" it takes significantly longer to clear up.
| quackscience wrote:
| I get the same, and all of these tend to be a trigger for
| me too -- too much caffeine, dehydration, and rapid light
| intensity change (like looking outside and then back to
| my computer screen).
|
| In addition to chugging water and staying in the dark
| with a face mask, I've found that taking raw honey right
| as it's coming on makes it go away rapidly.
|
| My long term prevention is taking magnesium daily and LSD
| once or so a year. Once I started doing that the
| frequency went to almost zero, and whenever I don't do
| that they start up again.
| almuhalil wrote:
| In my case it's the combination of too much caffeine,
| dehydration, and intense exercise where my HR maxes out.
| 2/3 risk factors will typically not be enough to trigger
| one for me. HIIT workouts and soccer have done it in the
| past.
|
| The aura (with scintillating scotoma) starts coming on
| usually an hour or so after the exercise is done, and I
| know I've got about 15-20 minutes before the actual
| migraine hits. Got prescribed Sumatriptan and it maybe
| reduced the intensity by about 25%. I'll have to try the
| water chugging, maybe with rehydration salts to speed up
| absorption.
| bregma wrote:
| 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 somatic experiences (like sizzling on my tongue and
| lips) but now I just get mild abdominal discomfort. With a
| couple of notable exceptions it lasts about an hour.
|
| I have learned that while they're inconvenient, they're
| harmless and I just generally continue with whatever I was
| doing when they began. I have never been able to discern a
| trigger: they appear to come on completely randomly.
| elric wrote:
| 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.
| julian_t wrote:
| I used to get these two or three times a year, but then I had
| heart surgery last summer and had five in the first day after
| I came round from the anesthetic, and two or three every day
| for weeks after that. They've now settled down to one every
| few days. Annoying, but they go away fairly quickly and just
| leave me feeling a bit tired and headachy for a few hours.
| h_squared wrote:
| Same story for me, had a minor ablation procedure which
| triggered a bunch of migraines that later settled down.
| tclancy wrote:
| That feels pretty similar to my story. I always put it down to
| some kind of puberty changes.
| xattt wrote:
| Yes! At least some migraines are caused by whatever second-
| order effect there is from hormonal changes.
| e40 wrote:
| Yep, I realized mine were caused by looking out the window
| while I brushed my teeth in the morning. One day it was really
| bright outside and really dark inside and the migraine started
| almost immediately. More than a year and I keep the blinds
| drawn while I'm in the bathroom in the morning and not a single
| migraine!
| mh- wrote:
| This is interesting. I frequently had them triggered by
| riding BART in the late afternoons in the winter, sun beating
| in through the dirty windows. Going through the tube (dark)
| and emerging in Oakland (raised track, clear view of the sky
| on both sides) had a double-digit % chance of giving me a
| migraine if my eyes were open at one point.
|
| I can get them triggered by riding in a car in similar
| conditions, too, especially if the windows aren't squeaky
| clean. I frequently wonder why that is, something about the
| remaining spectrum of visible light when the windows are
| dirty?
| error_logic wrote:
| Reminds me of wearing non-prescription sunglasses despite
| having myopia. It feels like the blurring of the world is
| due to the glasses, even though they're actually only
| blocking some of the light rather than distorting it.
| dgacmu wrote:
| 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.)
| takomako wrote:
| Have you tried cold brew? It has about 10x the caffeine of an
| espresso shot. Espresso has the least amount of a caffeine of
| coffee drinks. Cold water and long exposure extracts more
| caffeine than hot water and short exposure. Source: I'm a
| coffee nerd.
| Talanes wrote:
| The difference isn't typically that vast. At usual dilution
| levels, drinking a 16oz cold brew would be slight caffeine
| gain on the double-shot. Heat does extract caffeine better
| that cold, which is why the shot is prepared in [?]25
| seconds and the cold brew concentrate takes 12-20 hours.
|
| Source:10 years experience as a working barista.
| melllvar wrote:
| There are OTC meds you can buy that are marketed as "migraine
| relief" that are just acetaminophen + caffeine; my wife takes
| that and it usually works to relieve the symptoms (if she can
| catch it early enough).
|
| Of course, then you take away the espresso - there's always a
| trade-off :)
| cdrini wrote:
| Same! My understanding of migraines is that it's something to
| do with blood pressure in your head. My hypothesis is that the
| visual disturbances are your blood vessels dilating and
| pressing against your retina. Then I think it can cause kind of
| a runaway feedback loop of some sort that causes the blood
| pressure to increase throughout your head, causing pain.
|
| Thinking about it now, I wonder if the light trigger could be
| the bright light causing minor damage to your retina,
| potentially triggering an inflammation/repair response. The
| fact that it happens when going from dark to light suddenly,
| also makes sense, since your pupil is at its most dilated when
| in the dark, meaning the most of your retina is
| exposed/vulnerable. That might also explain why it always
| starts in the periphery; because the edges of your retina are
| likely less often exposed to light and potentially more
| delicate -- but would be exposed if you see bright lights while
| your pupils are fully dilated.
|
| For me, I've found it's also closely related to irregular food
| or sleep. And I find eating something with sugar or drinking
| some water can reduce the likelihood of the visual disturbances
| becoming a full-on migraine. My hypothesis is that these things
| alter your blood chemistry/physics enough to interfere with the
| runaway feedback loop that results in increasing blood
| pressure. I imagine dunking your head in cold water likewise
| works because it breaks the runaway process.
|
| But this is all speculation.
| tptacek wrote:
| Just for what it's worth, the middle third of the article is
| about the proposed limbic system causes of migraine.
| beacon294 wrote:
| I also discovered the dive / ice water reflex sometimes helped
| my migraine. The reason I tested it is because caffeine
| supposedly releases some chemicals related to the same
| chemicals that are released when you vomit. Since my migraines
| always ceased after vomiting, I used these other methods to
| induce the same chemical response in the brain.
|
| I now keep Excedrin migraine on hand (has caffeine). However,
| my migraines completely ceased after I stopped using nasal
| steroid spray and started with an allergy nasal spray.
| wx196 wrote:
| I underwent allergy treatment that stopped working, so I
| decided to try steroid medication. After about four days, I
| began experiencing unusual migraines every day. I had
| migraines before, but they always came with a headache.
| However, with the steroids, I started getting just very
| strange optic auras. Everything began to sparkle out of
| nowhere, becoming more intense until I had to close my eyes.
| The symptoms stopped once I discontinued the steroid
| treatment.
| groos wrote:
| 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 a day, to which I
| added 240mg magnesium glycinate, which they sell in Costco. I
| have been mostly migraine free since for several years and ones I
| do get are mild compared to before.
|
| My cardiologist, who prescribed the blood pressure medication, is
| mystified saying that while beta blockers are a migraine
| prevention medication, olmesartan isn't a beta blocker and maybe
| it was just my (mild) hypertension which needed to be treated. I
| doubt that I had hypertension when I was 8 but I'm just thankful
| that decades of pain have come to an end.
| fireflash38 wrote:
| Hmm, I was prescribed Verapamil (calcium channel blocker, also
| a blood pressure medication), and they helped reduce the
| severity of my migraines with aura for a while. I eventually
| went off it, and haven't had near as many since. Early twenties
| was so awful for those migraines.
| nooron wrote:
| Did you find Verapamil had any mood altering or cognitive
| properties for you? I take it for migraines. I think it makes
| me a little more emotionally stable but a tiny bit slower
| cognitively, especially in the mornings. It's a good trade
| off, especially in light of how it basically stopped my
| migraines, but it's one I have perceived.
| nik9000 wrote:
| I'm on a sartan and my migraine doctor thought it might help.
| internet_points wrote:
| Candesartan has been massively helpful and has very mild side
| effects compared to beta blockers like metoprolol.
| sepositus wrote:
| 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 migraine.
|
| Sorry for the rough recall, but the point is that there may not
| be a silver bullet solution simply because it's not one thing
| contributing all of the time. I can trigger on all four of the
| ones I listed. I've had migraines for a week straight now because
| I recently developed tinnitus and am struggling to sleep.
| However, I had a migraine the week before because I inadvertently
| consumed red dye, which triggered massive inflammation in my
| body.
|
| So, for me, it's all about managing multiple things enough to not
| get above the threshold.
| dumbfounder wrote:
| 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_...
| bonesss wrote:
| A metaphor I heard once, second hand from a neurologist, was
| that of making a stress stew. You add in the elements slowly
| over time into the pot -- barometric pressure, painful
| perfumes, an odd sleeping position, some traffic, marital
| issues, whatever -- and then at some ill-defined point it
| crosses a threshold into being a proper stress stew (ie a
| migraine).
| jcAUS wrote:
| long-time listener, first-time caller on HN. I've had migraines
| since I was a teen. Full blackout vision, then debilitating
| headache for 48 hours. About 18months ago I cut out food
| containing thickening agents (Xantham gum aka 415, et al). Have
| only had a migraine since then when I've had food containing
| these (which seems to be an increasing number of foods). I don't
| suggest it's a cure all, but worth trying for others out there.
| I've sat in job interviews, my wedding, kids' events dreading
| having one occur.
| dumbfounder wrote:
| 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 mold exposure. I also
| have a vestibular degradation, one side of my balance center is
| damaged. I think all of it is related and linked by inflammation.
| I do think that mold is part of the story, but definitely not all
| of it. Anti seizure medication helps a lot. Ubrelvy (a gepants)
| also helps a lot. Getting the right kind of sleep and exercise
| and staying hydrated also all help. I am nearly 50 and this a new
| thing that has happened in the last 2-3 years. Was not fun to go
| through this on the tail end of running a startup. The brain fog
| was debilitating. I am now 80% better with meds (and a shit ton
| of supplements) but still on the journey to figure out how to get
| back to normal and off all the meds. I do think it is
| inflammation related but it could be one of a zillion things, or
| a combination of many.
| graeme wrote:
| Have you tried vestibular rehab? Essentially a series of eye
| tracking + neck mobility exercises that support the visual and
| vestibular system.
| dumbfounder wrote:
| 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.
| whoiswes wrote:
| Wife has been struggling with vestibular migraines for about 20
| years. It really came to a head about 5 years ago, and we spent
| the following three years seeing specialist after specialist
| and trying around a dozen different medications. During this
| time she had daily flare-ups and missed a lot of work and spent
| most days in bed or on the couch.
|
| What ended up working in the end? We finally got into Mayo, and
| they suggested an SSRI (at a fairly high dose). She also
| figured out that she has a few food triggers (yogurt and
| freshly baked bread are 2 bad ones). She also discovered she
| has double vision, and now wears prism glasses. We think the
| combination of double vision and whatever brain chemistry
| imbalance she had was "overloading" her vision and vestibular
| systems, and she would basically just shut down. Treating both
| of those seems to have (mostly) alleviated things for her.
|
| I completely understand what you've gone though and how
| frustrating it is, especially given the very vague criteria for
| diagnosing and treating vestibular migraine.
| caitlinface wrote:
| 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 finally
| decided to see a headache specialist. The doctor very quickly got
| me started one of these anti-CGRP medications.
|
| Almost immediately, I dropped to 0-1 attacks a month, and when
| they do happen they are both less painful and my other medicine
| knocks them out fast.
|
| Literally life changing.
| usefulcat wrote:
| 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.
| dumbfounder wrote:
| Moral of the story: if your doctor doesn't make you feel
| better try another one.
| cf100clunk wrote:
| 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.
| cf100clunk wrote:
| Alors, I've been reminded that I should have referred to
| her as a migraineuse (feminine).
| geye1234 wrote:
| Yep, I was exactly the same. It took me decades to get
| diagnosed, then several more years before I saw a neurologist.
| Now I'm on a CGRP blocker, I hardly get them at all.
|
| In addition, my anxiety/depression is almost gone and my ADHD
| is about 50% improved (I'm not able to tolerate anti-ADHD
| meds). I love Nurtec. Expensive, but worth every penny. If my
| insurance didn't cover it, I'd pay out of pocket without a
| second thought. It's that good.
| 01100011 wrote:
| I had them in my 20s on a weekly basis but since I could stave
| them off with massive water intake I thought they were
| something else. I didn't get optical symptoms, it was just a
| really bad headache, nausea and chills that felt like a bad
| hangover. It wasn't until my 40s when I started getting optical
| migraines (which are scary as hell since they mimic a stroke)
| that I went to a dr and he diagnosed me. Apparently it's common
| for migraine sufferers to transition to optical migraines when
| they're older.
| timc3 wrote:
| This is exactly the same as my experience. The first optical
| migraine was super scary.
| ErigmolCt wrote:
| Did you have any side effects from the medication, or was it
| pretty smooth sailing?
| ne8il wrote:
| 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 had to
| try lower-cost drugs like Verapamil (a calcium channel
| blocker) which had no effects at all, positive or negative,
| and Topiramate, which is the single worst medication I've
| ever used. Compared to all of those, the CGRP is a miracle
| and has been life-changing.
| megaman821 wrote:
| 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.
| yoaviram wrote:
| Same pattern for me. About a year ago migraines escalated to a
| few times a week. Debilitating. I started searching for a
| solution and discovered this book [1]. It basically recommends
| a low carb or even a keto diet. After three weeks migrants
| reduced to once every three to four months, and mostly because
| I'm cheating on the diet. Life changing.
| stewarts wrote:
| Low carb/keto also had dramatic effects on frequency of
| migraines/headaches for myself. CPAP however, has been even
| more life changing in that regard for myself. From headaches
| 4-7 days of the week to fewer than 1 per week.
|
| Some confounding variables on diet/weight loss/sleep quality.
| But I don't care, things are better and I'm happier for it.
| tharkun__ wrote:
| This is what helped me as well, plus probiotics to turn my
| gut flora around.
|
| I have a nagging feeling that "migraine" is actually not an
| actual single disease. It's rather a syndrome, i.e. a set of
| symptoms people have for various different reasons.
|
| Through keto and the probiotics experimenting, I've learned
| much more about how the whole gut thing "works" (very much
| not an exact science!) for myself and that doctors in general
| are clueless about it themselves. Or ignorant. Or don't want
| to deal with anything they can't just diagnose with a 5
| minute talk.
|
| My migraines are food related. Without the probiotics I could
| somewhat control when I might get one by not slipping and
| eating something tasty but bad for me (like lasagna two days
| in a row - tomatoes bad). Add to this the fact that food in
| many cases takes two days to go through your system, eating a
| food and getting symptoms is delayed. Evacuating the food
| from your system would also cure the acute migraine headaches
| and other symptoms. With the right probiotics I can now eat
| all the lasagna I want and throw in blue cheese and red wine
| as well!
| kazinator wrote:
| > _When May started researching migraine in the 1990s, the
| leading hypotheses were that migraine was either a psychological
| issue or a vascular headache disorder, with throbbing pain caused
| by dilation of blood vessels. The psychological associations came
| with stigma, May says. [...] A lot changed in the 1990s, when May
| and others began conducting brain scans of people with migraine._
|
| Sure, who the hell is this guy, and his discovery of the cortical
| spreading depression phenomenon:
|
| https://en.wikipedia.org/wiki/Aristides_Le%C3%A3o
| apprentice7 wrote:
| Hello, fellow migraine sufferers. I sincerely want you to read
| the fantastic essay "In Bed" by Joan Didion. It is a fantastic
| reflection on what it is like to have migraines and it makes me
| cry every time I read it because it makes me feel seen and
| understood.
|
| "For I had no brain tumor, no eyestrain, no high blood pressure,
| nothing wrong with me at all: I simply had migraine headaches,
| and migraine headaches were, as everyone who did not have them
| knew, imaginary."
|
| Read it; it's a google search away. You'll thank me.
| mccoyb wrote:
| Anti-CGRP medicines are life changing.
|
| The only medicine I've used that has all but completely
| eliminated my migraines during usage (Aimovig).
|
| Unfortunately, to get these -- you have to provide an arm and a
| leg to insurance, even when a neurologist is vouching for you.
|
| Nothing makes me consider violence more than meeting with a
| highly educated, vetted, practitioner of medicine -- having a
| conclusive conversation about a treatment plan, and then having
| my fucking insurance say "ope, sorry -- you have to prove you
| need this medicine by trying anti-depressants (which might
| incidentally help, but not designed for migraines), or this other
| thing which also may incidentally help (but not designed for
| migraines)"
|
| Get this -- I got a prescription for Aimovig, all positive
| results (for a year and a half) and my insurance is still getting
| in the way of fulfilling the script (each month). If I miss the
| dose, I get a massive rebound migraine -- and I've missed several
| doses because my insurance wants to send another letter to my
| neuro "hey are you claiming this is still worth it?"
|
| What does one do here? Lawyer up?
| w10-1 wrote:
| 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.
| teaearlgraycold wrote:
| 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.
| ChrisMarshallNY wrote:
| 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.
| notfed wrote:
| 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.
| ChrisMarshallNY wrote:
| Not my area of expertise, but anecdatally, everyone that I
| know, that has suffered from diagnosed migraines, has had
| really crippling symptoms. They seem to be fairly universally
| severe. I have had headaches all my life (including ones
| related to a brain tumor, back in the 1990s. The migraines
| don't seem to be related to that tumor, which was treated
| with surgery). In my personal experience, the comparison is
| night and day. There's a clear difference.
|
| Basically, a migraine is a "day-ending" event. In my case,
| I'm fortunate that I can still get stuff done in the morning,
| but after lunch, the day's pretty much a write-off.
|
| I'm really grateful that they are so rare (I've had three
| full-term, and one "aborted" one, in the last 30 years). My
| mother used to get one or two a month, and her day ended
| fairly early. When I was a teenager, I got them more
| frequently.
| digitalsushi wrote:
| 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.
| Foofoobar12345 wrote:
| 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.
| xvedejas wrote:
| 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
| 3D30497420 wrote:
| I take a triptan for mine (naratriptan) and it has helped.
| Certainly not a cure though.
| ulrikrasmussen wrote:
| Can this family of drugs even give a psychedelic experience
| at higher doses? They are acting on 5-HT1B and 5-HT1D, not
| the 5-HT2A receptors that psychedelics act on.
| Aurornis wrote:
| As a counter-antidote: I know several people now who have
| experimented with psychedelics with the goal of addressing
| mental health issues who ended up significantly worse.
|
| One of them got stuck with a nagging feeling that the world
| wasn't quite real that lasted for a very long time, which
| resulted in a lot of anxiety.
| Foofoobar12345 wrote:
| Yup - they can also give you migraines (or worse) if you
| introduce bugs into the "software", just as I was able to
| debug my problems away.
| tkzed49 wrote:
| 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 uncertain
| and terrifying. It left me with no mental capacity to do
| anything but uneasily exist.
|
| With treatment, it goes away gradually over months. I never
| want to go back there.
| vasco wrote:
| 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.
| encipriano wrote:
| We kinda know its like that dont we. Perhaps those who
| suffer such condition see throuh the abstractions our
| brain makes. Like seeing things in a rawer form that
| doesnt align well with more normative views of society.
| Galaxeblaffer wrote:
| > Like seeing things in a rawer form that doesnt align
| well with more normative views of society.
|
| Psycedelics in a nutshell
| iamacyborg wrote:
| There's certainly a lot of research and a lot of
| philosophical thought leaning in that direction.
| shkkmo wrote:
| Without the lies our brain tells our consciousness, we
| couldn't function. Even core stuff like the way that we
| see or our experience of choice, are dependent on our
| brain fooling us in some way.
|
| Luckily, we an pretty good at being hypocritical. This
| allows us to learn and think about this stuff while still
| believing the lies.
| lo_zamoyski wrote:
| This suffers from the homunculus fallacy.
| quackscience wrote:
| It definitely depends on the person and the state of mind
| they have when they go into it. I've had really
| overwhelming de-personalization episodes on LSD as well and
| they were extremely positive, life transforming
| experiences. I had studied and practiced Buddhism for years
| prior to having those experiences, though, which helped me
| integrate what was happening. It was like all of a sudden
| getting a direct experience of what was previously just
| words and philosophy -- "oh, _this_ is what he was talking
| about. "
|
| Had I gone into it totally blind with no way to frame it it
| probably would have been a nightmarish scenario though.
| There's a reason why Right View (samyak-drishti) is the
| first of the 8 Noble Truths [1] and the one really
| emphasized in the beginning of your Buddhist practice.
|
| [1] https://en.wikipedia.org/wiki/View_(Buddhism)
| dmos62 wrote:
| There's something to be said about psychedelics and
| introversion in general being a two-edged sword. There's also
| something to be said about how we get into trouble when we
| consider beliefs or abstract feelings as something outside
| our control.
| ErigmolCt wrote:
| Stress is definitely a huge migraine trigger for me too, and
| it's really interesting how that trip helped you get to the
| root of it. I haven't tried psychedelics, but I can relate to
| the idea that learning to truly relax (not just surface-level
| relaxation) can make a big difference
| shaky-carrousel wrote:
| Stress is a common migraine trigger.
| wonderwonder wrote:
| I had a similar experience but with simple Marijuana. I was
| getting migraines every week for months. Specifically my eye
| would catch light at some strange angle and it would almost
| burn itself onto my retina (massive light sensitivity). I was
| also highly stressed at the time.
|
| I was laying in bed with a migraine on a Saturday early
| afternoon. Smoked some pot (I am not a day smoker, generally
| pretty sober during the day) and then sat down. I just told
| myself that this was stupid, I live an incredible life, have a
| family that loves me and its all self induced and I was done
| with it. Forced myself to get out of bed and just started
| moving. Trudged my way through it that day and have not really
| had a migraine since. This was years ago.
|
| I have occasionally had that initial flash of light that tells
| me a migraine is coming (always while sitting down to work so I
| know its stress related). As soon as it hits, I close my eyes
| and just will it to go away. Has been pretty successful. A
| couple of times I have had to sit there for 10 minutes for the
| lens flare (for lack of a better word) to go away. This has
| happened maybe twice a year for the last ~4 years.
|
| Not saying its self induced / stress for everyone but this
| worked for me.
| slibhb wrote:
| This is where pseudoscience comes from. You dropped acid and
| think it helped you but you probably tried many different
| things before acid which "didn't work". In all likelihood the
| acid had nothing to do with it; it was just a coincidence that
| your symptoms improved.
|
| Also, it's common to have a lot of migraines for a period in
| your life and then stop having them. Or sometimes the reverse.
| I used to get very painful migraines about twice a year.
| Eventually that stopped. I still get migraines a couple times a
| year but they're quick "silent migraines" i.e. not painful,
| just annoying and disorienting.
| quackscience wrote:
| Possibly, but there are a lot of people that self-administer
| LSD for migraines who say it helps tremendously. I'm also one
| of those people. Between occasional LSD and daily magnesium
| supplementation, my migraines are very infrequent these days.
|
| https://www.science.org/content/article/lsd-alleviates-
| suici...
| mettamage wrote:
| > This is where pseudoscience comes from.
|
| I disagree, if it stopped it stopped. It could be from
| something else, but his LSD intake is the most likely
| candidate. It would become pseudoscience if he or she would
| claim that this will work for everyone.
|
| Also, don't forget that science can make a similar flaw. Just
| because a drug works on average, doesn't mean that it will
| work for you or that it won't have any negative side effects.
| Human variation can be quite big with certain things.
| dimal wrote:
| This is also how many scientific discoveries start. An n=1
| observation. Then more observations, then more validation.
| This is how we ended up getting ketamine for depression.
| AnthonBerg wrote:
| Are you aware of the ample research and scientific knowledge
| on the interplay between the 5-HT2A receptor and
| inflammation, vasomotor effects, and effects of 5-HT2A
| activation on migraine and cluster headaches?
|
| In... all likelihood you do not?
|
| This review paper is particularly interesting, especially
| because nobody is discussing this and nobody has read it: htt
| ps://www.frontiersin.org/journals/immunology/articles/10....
|
| The author is a serious person and this is a significant
| review paper of a solid and broad research foundation.
|
| There are also studies on 5-HT2A agonists ("psychedelics") on
| migraine and cluster headaches directly.
| DiscourseFan wrote:
| Psychedelic treatment of migraines has nothing to do with the
| trip, however. Be careful of confusing your feelings with your
| actual health, they are not always related.
| snozolli wrote:
| _Psychedelic treatment of migraines has nothing to do with
| the trip, however._
|
| What does this even mean, and where is your proof?
|
| _Be careful of confusing your feelings with your actual
| health, they are not always related_
|
| Why are you talking down to people, oh sage one?
| DiscourseFan wrote:
| https://en.m.wikipedia.org/wiki/Triptan From a comment
| above.
|
| And to respond to the latter, how many people are diagnosed
| every year with terminal cancer after a routine doctor's
| appointment? I didn't believe I needed an example.
| smeeger wrote:
| true. the one time i used lsd i had a horrifying bad trip,
| like a waking nightmare. the kind of bad trip that people die
| from. but my migraines completely stopped for five years
| afterwards.
| amelius wrote:
| > actually meditate and feel your muscles relaxing
|
| Could you provide a short description of how you approach this?
| E.g. how do you start and which muscles do you focus on, etc.
| perrygeo wrote:
| 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.
| theoryofx wrote:
| Just throwing it in here in case it helps someone: if you have
| migraines, get an eye exam to check if you need glasses (you
| might not realize it!) and that your prescription is still
| sufficient.
| rakejake wrote:
| I was diagnosed with migraine as a kid when I was 10. The doctor
| made me undergo a battery of tests including a contrast CT scan
| that consumed aj entire day, only to confirm at the end of the
| day that it was migraine. The migraines weren't even that
| debilitating but my mom was just being extra careful.
|
| After that, I still got headaches at a good frequency and tried
| all sorts of specialists from orthos to opthalmologists, all of
| who checked their areas of the body and said I was perfectly
| normal. The one doc I didn't see was a gastro and this was a
| mistake.
|
| Eventually I grew older and realised first that my headaches were
| always preceded by some sinus congestion and milk was a trigger
| of said congestion. So I switched to lactose free milk and that
| helped.
|
| Eventually I realised that I was a chronic acid reflux patient,
| that a lot of small symptoms I had had over the years (a feeling
| of something stuck in the throat, congestion etc) were basically
| just the gut throwing up acid, or more accurately LPR/silent
| reflux. The reflux was the actual trigger of my headache. So my
| usual medication of Paracetamol, or worse, ibuprofen was actually
| making it worse in the medium/long term.
|
| I switched my strategies to fixing the gut/acid reflux instead of
| treating the headache. The max I do nowadays is 325mg of
| paracetamol if I need to sleep and the pain doesn't let me.
| Ibuprofen is a nuclear option that I haven't resorted to in
| years.
|
| The gut issue is still not resolved, I suppose years of damage to
| the oesophagus takes time to heal, so I'm still prone to reflux
| but I make do with a bland diet, avoiding triggers like milk and
| resorting to PPIs for short bursts during an attack. Oh and I
| also do the bending while swallowing trick that was on HN
| sometime back, which has helped immensely.
|
| My headaches are mostly a thing of the past. Haven't had a
| debilitating one in years.
| ragtagtag wrote:
| > I also do the bending while swallowing trick that was on HN
| sometime back
|
| Could you share the link for this, if you can find it?
| beAbU wrote:
| Dont have the hn discussion link, but it was this paper that
| was posted.
|
| https://pmc.ncbi.nlm.nih.gov/articles/PMC9106553/
| genewitch wrote:
| Gerd and the like are sometimes caused by too little acid.
| Maybe your GP can discuss HCl pills to take if you feel a flare
| up coming?
|
| I only get bad reflux a few times a year and I use baking soda,
| so I never think to buy HCl at a pharmacy.
|
| Best of luck.
| Wojtkie wrote:
| Migraines being more than a headache has been the norm for at
| least 15-20 years. I remember hearing about how cluster headaches
| could be treated with psilocybin. I'm not able to access the rest
| of this article, but what's the new thing here? We already knew
| for years its not "just a headache"
| ricardonunez wrote:
| Commenting to save this for post for later. I suffer from
| migraines regularly. I will try some of the suggestions here.
| wsc981 wrote:
| I tend to get migraines occasionally. For me the trigger is
| stress. So if I can try to avoid stress, I wouldn't get migraines
| as quickly. Sadly, in modern life it's sometimes hard to avoid
| stress.
|
| Maybe 5 years ago, to treat my migraines, my girlfriend advices
| me to visit a massage therapist in Pattaya, as he's helped many
| people, Thai and foreigner, to get rid of migraines. I had a
| message session at his shop (including a lot of neck and head
| massages) and he gave me some herbal medicine to eat for 1 or 2
| months. Afterwards, didn't have migraines for a couple of years.
| But the migraines came back, I think about 2 years ago. I might
| visit the message therapist again in the future if we plan to
| visit Pattaya (we live in Chiang Mai province, so it's like 800
| km away).
|
| I know of a girl in our village who also had a lot of migraines.
| She visited some kind of Chinese medicine doctor in Chiang Mai.
| He made some small holes in the head, blood would go outside. Not
| sure how many sessions the girl got, but from my understanding
| her migraines are gone now.
|
| My migraines are usually as follows:
|
| - usually lasts for around a day
|
| - sometimes one side of the brain (temple area) is very painful
| (like a drill inside), sometimes both sides
|
| - arteries around the area in brain where is pain are visibly
| thick
|
| - pain in head & neck area, not so much in rest of body
|
| - sensitive to light
|
| Showering in hot water helps relieve the pain a bit, my guess is
| because it might improve blood flow. I tend to take hot showers a
| couple of times a day during migraine attacks.
|
| Other things that seem to relieve a bit are ginger tea (fresh
| ginger), tiger balm on pain area in head & head and neck
| messages.
| fi358 wrote:
| I have also noticed that for some reason hot showers and also
| shoulder and head massage help seem to help a lot, but only
| about as long as I am in the shower or have the massage. And
| also putting Vicks VapoRub on scalp seems to help a lot, but it
| is quite messy. However, a triptan medication I have started to
| use recently, seems to help even more.
| jongjong wrote:
| I get a migraine with aura about once every 6 months. It can last
| between a few minutes to several hours. When this happens, part
| of my field of vision disappears randomly and it becomes
| difficult to focus on anything or read. Then after the aura, I
| get a bad headache.
|
| Sometimes, if I start to feel sensitive to light (a sign that I'm
| about to have a migraine aura), I take a paracetamol and it
| prevents it completely. The trick for me is to catch it early and
| notice the signs. My migraines seem to correlate with my stress
| levels, too much thinking and/or insufficient sleep.
| beacon294 wrote:
| I had migraines which ceased when I switched from a steroid nasal
| spray to an allergy nasal spray. I guess the steroid spray was
| not good for my brain.
|
| Edit: I even reintroduced the spray 2 years later (out of allergy
| spray) and had another migraine. It was surprising, as I only
| used it for a few days.
| elliotto wrote:
| https://archive.md/Apbxw
| taeric wrote:
| I used to wonder if the headaches I have had were migraines. Then
| I had the kind where you go blind for a few minutes, followed by
| a migrain. Was the worst headache I've ever had, but I was so
| glad to have my vision back.
| anonzzzies wrote:
| I used to have very many (multiple a week) and was under
| specialist care for it in my 20s. Turned out to be stress though
| (doctors didn't buy this but couldn't find any other reason
| either, but once I stopped going to the office, I have had 0; I
| stopped going 25 years ago and had 0 for 25 years). I found what
| killed them almost immediately; 1 shot of vodka. When I saw the
| lines and the auras starting to come (usually tunnelvision and
| some vague jagged lines would announce an oncoming attack), I
| would immediately knock down 1 shot of vodka and it would go away
| while just causing a slight headache, but none of the rest of the
| very bad things I would otherwise have like double vision,
| splitting cluster headaches, auditory features, dizziness and
| tingling in my face, some of that lasting for days. I would all
| skip that with 1 shot. Just not having them is nicer though;
| whatever helped, I am very happy I discovered it relatively early
| on.
| lifeinthevoid wrote:
| I started having migraines in my late teens after drinking too
| much alcohol at parties, I used to think they were hangovers. It
| was only much later, after getting migraines in daily life, I
| found out after visiting a neurologist that those hangovers were
| migraines. Been having frequent migraines ever since, most of the
| time triggered by stress. Often I'd have attacks 3-4 times a
| week, fortunately the intensity is not crippling, more like a 6-7
| out of 10. And now the good part, I have been supplementing Omega
| 3 and Magnesium during the last couple of months and haven't had
| a severe attack since. It's worth trying out if you suffer
| frequent attacks like I did.
|
| edit: my experience with sumatriptan, is that it helps stave off
| an attack, but frequent use increased the frequency of my
| attacks, leading to almost daily attacks, so I stopped taking it.
| genewitch wrote:
| Just so people are aware there are several types of magnesium
| supplements and they all do different things. One of them is
| for relieving constipation and will not help with migraines,
| probably.
|
| For instance I've recently started trying magnesium glycinate
| as a sleep aid.
|
| Anyhow I don't know which is which so I look it up.
| lifeinthevoid wrote:
| It's glycinate too.
| ErigmolCt wrote:
| As someone who deals with migraines, this article really hits
| home. I'm glad there's progress being made, but it's also a bit
| disheartening to see how much we still don't know
| outime wrote:
| I tried to find this advice in the thread but couldn't, and I'm
| surprised since it's surprisingly common!
|
| Some sweeteners such as aspartame can trigger migraines (also
| some gut issues) depending on the quantity and person. While most
| of the people can take them just fine in principle, others suffer
| migraines a while after taking them. In my case, this was a
| relative who suffered a lot until finding out by pure chance that
| certain sweeteners where the reason, but you can find countless
| cases.
| genewitch wrote:
| When I was a child I couldn't drink diet soda and then go play
| outside during the summer, I'd get a wicked headache. I've
| never had a migraine, based on the descriptions I've heard.
| alkonaut wrote:
| 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.
| stackedinserter wrote:
| 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)
| art0rz wrote:
| Reading this as I'm just coming down from a migraine. I've been
| getting them since I was a young teen. I get migraines with aura.
| They used to last for hours. Sometimes I get them multiple times
| per week, then they disappear for months/years and suddenly will
| get them again. No significant life or dietary changes in
| between. I've never been able to pin down what causes them.
|
| These days they've become much more manageable. The aura and
| headache part takes 30-60 minutes as opposed to 5+ hours when I
| was a teen. I do experience brainfog, fatigue, dizzyness and
| nausea for 24+ hours afterwards, but at least I'm not stuck under
| the covers for hours.
| piperly wrote:
| I had a migraine for more than 15 years. After quitting caffeine
| completely as a self-experiment, it never came back. When the
| migraine came, I had it for at least 3 days without improving. So
| I had to take something with Triptan, like Dolortriptan.
| geye1234 wrote:
| The book "Heal Your Headache" by David Buchholz which, while a
| bit dated, has some good advice, recommends completely quitting
| caffeine. It talks a lot about diet, but it has the strongest
| words for caffeine. It considers it the worst of the food
| culprits.
|
| It also has some controversial/outdated info, like:
|
| - A migraine is a normal headache, but worse
|
| - Don't take triptans -- get off them if you're on them
|
| - Migraines are vascular.
|
| Not saying it's wrong, but it's definitely controversial. I
| have no idea about the author's views on CGRP blockers, since
| the book considerably predates them.
|
| I've never tried hard enough to quit caffeine. I'd like to give
| it a go. I typically feel better migraine-wise when I'm
| drinking 1 cup daily than when I'm drinking 2-3. But
| confounding variables etc etc etc.
| internet_points wrote:
| Some anecdata on prevention experiences:
|
| * metaprolol (pulse-slowing beta-blocker): fewer attacks per
| month, "dampened" attacks, bad side effects (fatigue, energy
| loss, dark moods)
|
| * magnesium supplements: no noticable effect (they say it might
| have an effect if you happen to get too little through your food)
|
| * vitamin B: no noticable effect
|
| * simvastatin (cholesterol lowering medicine): some fewer attacks
| per month, but attacks when they come seem full strength
|
| * candesartan (also a blood pressure medicine): much fewer
| attacks per month, "dampened" attacks, very few side effects,
| current "winner"
|
| (CGRP's are expensive, haven't tried.)
|
| For stopping attacks, triptanes work well.
| bfcapell wrote:
| Anecdotal, but: I know someone with relevant migraine problems
| did a log of everything she was eating or doing, searching for
| possible triggers. After a few weeks there were a couple of
| suspects: glutamate, chocolate, and also some legumes. Removing
| these worked and reduced greatly the amount and extent of the
| problem. Currently legumes is ok sometimes, but consuming one of
| the first two is almost a guaranteed episode.
| qweiop wrote:
| I don't love Huberman, but his episode on headaches/migraines was
| very informative. There was a lot of helpful tips for those
| suffering.
| adaptbrian wrote:
| To hell with the drugs that they throw at you for headaches. It's
| your diet, lifestyle and poor sleep that's drives this bus.
|
| I'll save you 10 years of my suffering and the awful side effects
| induced from the cocktail of drugs in this article and say I've
| reversed cluster headaches and can now tell when anything is not
| good for my body goes into it.
|
| I did an elimination diet, I skip breakfast usually, and did 1
| successful session of hyperbaric oxyegen treatment and it's
| completely changed my life.
|
| Ive been able to continue ketosis periodically and am adding
| foods back now 1 by 1 to see what induces pain and believe it or
| not your body will tell you.
|
| My latest revelation was legumes which tricks you, high in carb
| item that apparently is a different type of carb that doesn't
| digest in the bottom of your gut like other carbs. (1)
|
| This list of positive side effects can only seen as a miracle to
| me from being on the edge of survival (my clusters were headed
| towards a manic state)
|
| -I don't get down and cynical at all like I used to -my daily
| energy is a magnitude of about 5x stronger -confidence and
| positivity are the first reactions i have now so it's greatly
| uplifted everyone around me - there is a level of even keel
| rationality that I have now that I've never ever had - just alot
| more calmer overall and easier to get the busy mind not to
| overworry
|
| I've tried many drugs and techniques but everything felt like a
| bandaid on the problem and not actually addressing it
|
| Big and large psychedelic doses, triptans, cgrp, mood
| stabilizers, steroids. If they had it i tried it.
|
| It took about 1 month of major diet changes to start feeling
| better. A year in now and the two things that feel the worst for
| setting off mild nero inflamation are 1-not getting good sleep
| and 2-eating highly processed foods
|
| Your mileage may vary, everyone reacts to food differently.
|
| 1 -
| https://www.frontiersin.org/journals/nutrition/articles/10.3...
| outime wrote:
| As someone who has healed from some weird conditions by doing
| what you suggest (specially diet), I would be cautious about
| implying that everyone else is on the same path. Some people
| may have excellent diets and sleep schedules but still suffer
| from migraines or other debilitating conditions.
|
| While I agree that lifestyle factors are often overlooked,
| especially in the West where we tend to medicalize every
| symptom, sometimes the root cause of the issue remains unknown.
| Suggesting that it's always due to something like not following
| a proper diet can be harmful.
| takomako wrote:
| Exactly.
|
| I run or cycle daily and do small triathlons / half marathons
| in the summer. I'm mostly vegetarian. I weigh 155 lbs and I'm
| 5'11". I sleep fine.
|
| I get random severe migraines 2-3 times a year.
|
| I discovered sumatriptan. It stops the migraine almost
| instantly when i sense one coming on (my vision starts to
| "fuzz out").
|
| Before this I would lose a day recovering in a dark room
| lying down. I was scared whenever I backpacked or went on
| long trips that I would have a migraine at the wrong time.
| Sumatriptan freed me from this.
|
| I'm glad OP found a cure that works for them but everyone is
| different.
| ianburrell wrote:
| Another factor is that there are bunch of foods that are
| common migraine triggers. It is possible that he cut out his
| triggers with a limited diet.
|
| For me, triggers include alcohol, chocolate, processed meats,
| fermented and pickled food, and hops.
| amelius wrote:
| I had migraines with aura as a child from 12 to 16 years old. But
| then I got bruxism and the migraines went away. Traded one
| problem for another, I guess.
| jncfhnb wrote:
| I get migraines with aura prior to storms
|
| I'll be damned if they're not the result of some sort of swelling
| or inflammation of capillaries or the optic never or something. I
| can feel it in such clear detail.
| dghughes wrote:
| I recall about 10 or 15 years ago at work in the lunchroom it was
| me and maybe six younger people. Me age 40 them about age 20 six
| all said they have migraines I didn't, didn't know anyone who
| did. It seemed odd so many claimed to have migraines. I assumed
| they meant a bad headache not actual migraines but were using the
| term migraine to mean a bad headache.
| assimpleaspossi wrote:
| Just a note to say I noticed this, too.
|
| Kids these days.
| auc wrote:
| Our understanding of migraines seems to be increasing
| exponentially
| atlanta90210 wrote:
| Stop all forms of coffee for 3 months you will be amazed at how
| few you get after that. Tea is fine, just no coffee. Life changer
| for me.
| mentos wrote:
| Haven't had a migraine with visual auras since giving up alcohol
| fwiw. My friend's dad specializes in headache treatment he said
| majority is dehydration which would add up for my case but
| interesting to see a comment below where someone gets them from
| too much water so I guess having the correct water balance is
| key.
| savikko wrote:
| 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.
| ghelmer wrote:
| 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.
| qazwse_ wrote:
| 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.
| asveikau wrote:
| I think my biggest trigger is changing weather. I usually
| attribute this to changing light levels but I'm not sure.
|
| I spent about 30 years getting migraines before I realized that
| wearing sunglasses helps my light sensitivity. It seems like
| that'd be a fairly intuitive thing to have tried, but somehow I
| never did.
| corry wrote:
| I get migraines about 6 - 8 times a year, complete with visual
| aura and very occasionally speech aphasia. I tracked them in a
| spreadsheet for years so have a rough idea of triggers but it's
| proven fairly bad at predicting.
|
| I've tried many drugs to combat them, but there is one thing that
| helps me short-circuit it 99% of the time is a high amount of
| caffeine. It's not perfect -- I liken it to side-stepping a
| train; you get missed by the train itself but still get thrown
| off by the wind and noise, still fall hard on the ground, still
| get bruised but not hurt as badly -- but it works well enough, so
| as soon as I get the visual aura, I slam back a strong coffee and
| know that it'll work. Why? No idea, perhaps the pressure in the
| brain's blood vessels are affected?
|
| What I don't see as often discussed is the subtle changes in
| consciousness that accompany migraines.
|
| For me, in the pre phase (12 hours or less before the true
| onset), the first sign that I'm heading towards one is a sudden
| immediate bias towards pessimism with a kind of resignedness too
| (which is quite unlike my normal states of mind). That's often my
| first clue. It's like the storm clouds are gathering on the
| horizon and all light and colour is drained from my life.
|
| Then, the visual aura hits. Now I know what's happening with
| certainty and I hit my caffeine prophylactic. The caffeine
| stimulation combined with the first inklings of pain and
| knowledge that you're about to go "into the shit" gives you quite
| a fight/flight feeling. You're at a bit of a loss as to what to
| do, since you're amped up but there's nothing to do but wait it
| out.
|
| Then once the aura fades, you feel quite strange. I'll typically
| go lie down at this stage. If the caffeine worked (which is like
| 99% likely for me), I feel in a kind of haze but I'm not in deep
| pain - just uncomfortable and mentally quite scattered, though
| I'm no longer pessimistic about the future. In fact, it's like
| time collapses, and I'm forced to be in the moment. It makes me
| feel sick to try to think about the past or future - it all feels
| like a huge burden to try to internalize those states of time. I
| just try to focus on my body and how I'm feeling. It's almost
| like a meditative state. I can't sleep due to the caffeine but I
| try to rest and keep my mind clear.
|
| At some point I'll realize that I'm mostly through it, and can
| get up and move around and generally kind of resume my day. But
| it feels like a hangover of sorts. Everything is hazy. Thinking
| is difficult. Very sensitive to light and noise.
|
| Then, surprisingly, the next day I'll feel mentally GREAT like my
| mind was cleaned.
|
| Which brings me to the most interesting part of all this for me -
| the migraine has a lot of similarities to a psychedelic trip.
| There's a come-up that's distressing, a plateau where one is
| forced to be in-the-moment, a depletion afterwards, and the next
| day onwards a feeling that things are cleaner and better ordered
| than before, like your mind and spirit has been defragged.
|
| Perhaps both the migraine and the psychedelics are stressors or
| some kind of release valve on your brain.
|
| One wonders if there's increased brain plasticity post-migraine
| like with psychedelics.
| Agentus wrote:
| My migraines have been with me for ten years now and they have
| slowly evolved their symptoms and triggers. Started off more as
| typical migraines that happened every other day, though i had
| head issues everyday. it later evolved to neck pain, jaw pain,
| temple numbness, throbbing headaches, inability to think or
| process things. lots of cooccurring head symptoms include feeling
| of blood pulsing.
|
| visited countless medical people, most offered no real solutions
| or relief. only consistent insight, temperature baths for my head
| reduced at least tthe superficial symptoms but not the cognitive
| symptoms, the superficial symptoms seemed to be aggravated by
| sleep. the cognitive symptoms correlated to hard processing and
| thinking, straining the brain. but the detriment to my life made
| it hard balancing work and responsibilities. worse is the
| symptoms are debilitating at times and invisible, good luck
| getting sympathy or understanding from other people with that
| being the case. im homeless cause its better to not have
| repsonsibilities and control how much i strain my brain than deal
| with the headaches daily and worse.
|
| this whole ordeal makes you realize how limited the medical
| profession is.
| smeeger wrote:
| i have been getting bad migraines for as long as i can remember.
| bad enough to vomit when i was a kid. nothing ever helped except
| when i took a healthy dose of lsd in highschool and they stopped
| completely for five years or so. i had been getting them around
| once every two months before that. then they came back in college
| and slowly got worse until i was having basically one long
| migraine for up to a week at a time. then i started taking
| nurtech. it helped a lot but only worked half the time -- and
| when it did work i could still feel my body reeling from it but
| without pain. here is something curious: i noticed that nurtech
| would put me into an extremely good mood... almost to the point
| of being a different person. without any euphoria or
| intoxication. specifically, i noticed that i was much more open
| emotionally, much more personable and friendly. more open to
| letting people in. and thats when i really started to have a new
| perspective on just how much this disease had robbed from me. i
| cant even imagine how awesome it would have been to not be
| interrupted by these migraines, to not have to feel the throbbing
| pain, and maybe the whole trajectory of my life would have been
| different if i had been a little kinder and likable which, if im
| being honest, i was kind of known for not being. i dont really
| take nurtech anymore because i have found that hard physical
| work, sunlight, reducing total calories and cardiovascular
| exercise basically put them into remission. and im afraid of what
| nurtech might do to me long-term after seeing how profoundly it
| alters my personality. based on everything i know, i think its
| safe to say that migraines are a metabolic disorder. neurons
| become overexcited due to metabolic dysfunction which then causes
| a depolarization cascade that sweeps across other regions of the
| brain. thats why keto helps so much. i wonder if ozempic has a
| beneficial impact on migraine?
| diob wrote:
| I used to think everyone got migraines everyday, then I got
| diagnosed with sleep apnea. Hardly a thing for me anymore now
| that I use cpap, but I dealt with them constantly until my senior
| year in college.
|
| But it reminds me how we only really know our own reality, and
| it's easy to assume our experience as "normal".
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