Migraine is more than a headache – a rethink offers hope
239 comments
·February 18, 2025Foofoobar12345
Aurornis
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.
tkzed49
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.
quackscience
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.
vasco
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.
Foofoobar12345
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.
chenlian
I firmly oppose the use of LSD under any circumstances, as it often marks the beginning of self-destruction, no matter how justified the reasons may seem. In my experience, those who have used LSD inevitably see their lives spiral into chaos.
null
dmos62
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.
xvedejas
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
ulrikrasmussen
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.
3D30497420
I take a triptan for mine (naratriptan) and it has helped. Certainly not a cure though.
ddmf
I had a headache that seemed like a cluster headache and I took lsd every week for about 3 years, I'd get 5 days headache free out of 7 - was wonderful.
Then I met a gp who actually helped and mentioned indometacin and because that worked I was diagnosed with chronic parosysmal hemicrania.
PPIs didn't work, so I took ranitidine but eventually my stomach couldn't take the indometacin anymore and I had to stop it - the headaches returned.
Then I had an abcess in my jaw that almost killed me of sepsis and had to have two surgeries on my jaw and spent a month in the hospital on antibiotics. CPH didn't return.
Now I take a mild dose of propranolol daily and I rarely have headaches or migraines.
ErigmolCt
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
DiscourseFan
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.
smeeger
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.
snozolli
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
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.
amelius
> 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.
slibhb
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
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...
AnthonBerg
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: https://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.
mettamage
> 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
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.
shaky-carrousel
Stress is a common migraine trigger.
caitlinface
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
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.
cf100clunk
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
Alors, I've been reminded that I should have referred to her as a migraineuse (feminine).
dumbfounder
Moral of the story: if your doctor doesn’t make you feel better try another one.
geye1234
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
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
This is exactly the same as my experience. The first optical migraine was super scary.
yoaviram
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.
tharkun__
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!
stewarts
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.
ErigmolCt
Did you have any side effects from the medication, or was it pretty smooth sailing?
ne8il
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
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.
caitlinface
I'm on Emgality, and haven't noticed any side effects at all.
Honestly the worst part of it has been getting special approval from insurance; sometimes they don't cover much of it but right now the manufacturer provides a savings card that brings it down to $35/month.
FloorEgg
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
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.
jen729w
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
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.
bregma
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
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.
fahrnfahrnfahrn
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.
julian_t
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
Same story for me, had a minor ablation procedure which triggered a bunch of migraines that later settled down.
Analemma_
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.
beacon294
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
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.
dgacmu
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.)
melllvar
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 :)
takomako
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
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.
e40
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-
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
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.
cdrini
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
Just for what it's worth, the middle third of the article is about the proposed limbic system causes of migraine.
markx2
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?"
whutsurnaym
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.
isoprophlex
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
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
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
orthecreedence
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
Right ear because the pain was on the right side of my head.
LeoPanthera
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/...
willy_k
> 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
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.”
dumbfounder
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.
jmhammond
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
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
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.
ToDougie
truly fascinating comment..... will have to research this further!
canadiantim
fascinating, thanks for sharing
groos
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
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
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
I'm on a sartan and my migraine doctor thought it might help.
internet_points
Candesartan has been massively helpful and has very mild side effects compared to beta blockers like metoprolol.
hellotomyrars
Migraines are the absolute worst. On average I would get 6-8 a year. My triggers are primarily not eating frequently enough, bright lights and constant loud sounds. Knowing that, I mostly am able to avoid them and I can usually tell early enough when one is coming on to course correct. I never really explored any medication with my doctor because it was infrequent enough that I didn't really think of it. Then I had the worst migraine of my life. Typically I would vomit some as it starts to get really bad. Usually at that time I'm already laying on the bathroom floor because there are no lights of any kind in my bathroom that aren't tied to the switch. Also I rapidly alternate between being freezing cold and burning up so the cold floor is ideal (I also bring a blanket.) If it has hit this point I'm often in there for 4-6 hours before I can at least move to the bedroom.
The worst one, however, I spent 8 hours in the bathroom and for that entire 8 hours I never stopped vomiting. Well, I did, but only because there was nothing left inside of me. Dry heaving for that amount of time is not fun and it is even worse when combined with the terrible pain of the migraine. I never want to have that happen again. I genuinely don't know how people who get Migraines once a week or even more often can do it. If I got migraines like that every few days I would have blown my brains out a long time ago.
I try to avoid my triggers as best as possible but I was also prescribed sumatriptan as a last resort to take if I know it is going to hit. It has its own side effects that suck but it sucks a lot less than the migraine it prevents.
rakejake
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.
genewitch
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.
rakejake
But baking soda is basic while HCl would be acidic?
perrygeo
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.
cf100clunk
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?
MR_Bulldops
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.
munificent
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.
cf100clunk
> 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.
genewitch
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
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.
instagib
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.
geye1234
CGRP blockers (specifically Nurtec) were practically a silver bullet for me, but unfortunately not for everyone.
tbirdny
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
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.
iainctduncan
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
> "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:
graypegg
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.)
alabastervlog
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
Have you tried a sumatriptan as soon as the aura starts? Works for me. YMMV.
DontchaKnowit
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
bootloop
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
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...
anonzzzies
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
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.
elric
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!
panta
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.
dumbfounder
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.
whoiswes
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.
graeme
Have you tried vestibular rehab? Essentially a series of eye tracking + neck mobility exercises that support the visual and vestibular system.
dumbfounder
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.
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.