I suffered from migraines for over a decade. They were infrequent at first but, at the peak, I was getting 1-2 a week and felt like I was just "surviving" in life. I saw countless doctors and specialty clinics, none of which offered long term relief other than drugs.
For me, Rizatriptan helped take the edge off pain but I always had more migraines than pills could safely relieve in any given month. In the end, most months I had to choose whether I would get relief in the moment or save the 1-2 remaining pills for the following week(s) before a refill.
I had every blood / allergy test available and none ever showed any issues. I thought there may be a correlation to gluten but there were times where gluten (bread) helped with the nausea side effects.
Ultimately, I gave up gluten, coffee and sugar all at once. Within weeks I felt better and suffered no migraines for over a year until I decided to test the waters with a flour tortilla. Within a few hours I was bed ridden with a migraine for 2-3 days.
I have worked sugar back in to my diet in moderation but gluten and coffee are still out. I have only had that one migraine in 3+ years.
Anyone suffering, the absolute best advice I ever got was to keep a food / pain log. Do it every day no matter what. It may take a week, months or a year but it will uncover something that will help reduce frequency. Also, listen to your body. I had numerous doctors tell me I didn't have any food allergies and to focus on other areas for relief. Every single one was wrong and I could have had a cure years previous.
I've heard coffee can relieve migraines, including from a friend that has migraines and doesn't like coffee, and other people with migraines and these people don't know each others.
I've not read on the topic, at this point I wouldn't rule out the placebo effect, and it seems in your case coffee wasn't helping you, but it would be interesting to know if coffee caused migraines in you without the gluten.
At one point, if I drunk a coffee just before a migraine started it would go away. Nothing scientific here but it happenned too many times (both had the coffee and didn't) to establish the result for me.
My migraines stopped when I went carnivore which meant no gluten and sugar as well (though I kept the coffee). I'm now in a more keto diet but still no gluten at all and I've only had a couple of light migraines in a year or so (used have them a monthly or more frequently).
It is interesting to know your case as it is a smaller dietary change than mine.
Since I dropped caffeine, my migraines also became much less frequent and when I have some caffeine, I am at risk for getting one. It seems closely related to sleep for me and caffeine (even in moderation) just greatly affects my quality of sleep.
Same for me. As a Brazilian, I’ve always drank coffee without much care, but eventually I started limiting it to mornings.
Then I noticed if I ever forget to drink coffee (or had decaf coffee instead) I’d have a headache in the afternoon.
My solution was to remove caffeine completely, now I only drink decaf coffee and this particular problem disappeared after a few days.
Now about auras, it’s hard to say if there was any effect as they’re more rare for me. This thread is the first time I’ve read people say they drank coffee after the symptoms show up and it can block the headache that comes later on.
When I read stories like his, I always wonder what we’re doing with our wheat that so many people become completely wheat-intolerant in just 15 years. It is clearly more than just fashion, clearly people can diagnose it themselves and it happened in the anglo-saxon world first.
I'm not really that convinced that it isn't mostly social.. There were more intolerant than diagnosed until the 90s and that has now just flipped with the social overcompensation.
It's really very easy to buy in to the dominant social narrative as an explanation for one of the many undiagnosable health incidents we experience in a lifetime, and the placebo effect confirms whatever is socially helpful.
Most of these social changes now originate or become big from the US first because it dominates international media.
Or do people in a rich society like ours just have more opportunity to notice problems like this vs if you live in a society where life is more hard? It's like it seems we have more people today identifying as gay vs 100 years ago. Is it really more gay people today or do we just have a more tolerant socity that enables more people to identify as gay?
I can agree that for me it was cutting my "wheat" (flour, gluten, etc) consumption that helped me have far less migraines over all. I don't really eat much processed sugar (however I used to when I was a kid). I have taken away caffeine and brought it back without much change in frequency. The hardest part for me was a manager one time thinking it was how much I wasn't spending on doctors to poke/prod/image my head to find the cause or take a new medicine that really angered me. Dealing with people who can't understand that I have no control over when they happen and go away is the worst.
I just started noticing this and I am in the exact same spot, no allergies, lots of migraines.
Thank you for posting this 'cause I though I was making things up by noticing things when all tests were negative.
edit:
though it seems to me that coffe(+iburprofen when things are bad) helps.
I started connecting it to food when I noticed I started getting pain on my lower back that slowly creeps up on the course of half a day or so and becomes a migraine. When it starts stopping and I massage my neck down to half my back I get tons of relief when I press on the right nerve/muscle/whatever.
I tried everything over the years - stopping smoking, removing amalgam fillings etc etc.
Reducing sugar has really helped me, although I take propranolol daily and have rizatriptan to hand if need be.
Used to get chronic paroxysmal hemicrania too - ended up having emergency surgery on an impacted wisdom tooth, ended up in ICU for 4 days but haven't had one of those headaches since.
Definitely always believed I have some trigeminal nerve deformity.
I have gotten migraines (a visual aura followed by a horrible headache) on and off for years. Some years I’d have a couple, some years I’d have none at all. I have always tried to trace it back to a common theme. For the longest time I thought that common theme was caffeine.. to the point that I quit caffeine for like a year. Unfortunately, I still ended up with a migraine! One day I realized something, maybe my migraines had nothing to do with caffeine but everything to do with electrolyte balance. I recalled the many days I’ve had migraines and besides caffeine, the other common theme was that I had drank a significant amount of water. Sparkling water especially, I can pretty much just guzzle all day because I never get bored or sick of it. Sense then, I’ve made sure that if I drink a lot of water I also throw in some LMNT or similar electrolyte powder in there. I’ve been able to enjoy coffee again without the migraine. YMMV!
It was similar for me. I'd get migraines a few times a year. I couldn't find any food correlation, but it seemed to often happen the day after doing strenuous activity, sweating a lot and drinking a lot of water. I started to suspect it was related to lack of electrolytes, so I began taking electrolyte solution after running or any other sweaty activity. In the few years since then, the migraines have been much less frequent, and about half as intense.
I will have to give this a shot for my personal migraines. I do a lot of physical exercise when not on the computer. I also drink plenty of water so I am hydrated before exercising (I can't stand to drink water while working out). I live in a country with a high salt consumption but maybe I am not getting enough electrolytes. I can't honestly say caffeine has any noticeable effect on my frequency though.
It's cool to see some progress on aural migraines.
In the past I tried zolmitriptans for it but they don't do much, same with milder pain killers.
My migraines started at 20, two decades ago. I remember the first one like it was yesterday. I was studying CS and was coding on a dark-mode CRT monitor with a big fat window reflection on the screen.
It always happen the same way, with the characteristic jiggles, some kind of colorful, moving patterns of light that start in the center of my vision, slowly expanding to my entire field of view, making me temporarily blind. Then 30 mns after the onset of that, gone. 30 more minutes and the headache + strong nausea start, and immense fatigue. At that point I'm out of commission for a good 12h. Meaning I better be close to my bed, in total darkness.
It really sucks. I used to have them every 3 months on the dot, like on a timer. As I'm getting older I'm having less and less of them, going about a year without one. And they are a lot milder now. I have a lot less of the jiggles, no nausea and the headache is not so bad. I'm still fatigued but usually recover the same day. I consider myself lucky.
It seems to run in my family.
I've tried finding a trigger for the migraines but I have no clue. I used to associate them with bright lights as there is usually a bright light present when they happen, but it needs some other element. Stress and fatigue appear to be factors, as are tanins contained in red wine and beer. But sometimes none of these elements were present.
I have a personal non-scientific theory that serotonin levels play a role. High levels like I think I had when I was younger tend to trigger migraines. As I'm getting older and grumpier, I probably have low serotonin and less migraines...
Same, with aura, but without bad headache symptoms beyond a 3/10 on the pain scale. I use to have them monthly, almost on the dot. Unrelated to them, I started taking Magnesium supplements and now rarely ever have aura migraines. Kinda crazy how well it worked for me. Also could never really figure out the “precipitating factors” but bright light was almost always the direct trigger.
Thanks for sharing. I have the same “bright lights” hypothesis. If I see something bright I close my eyes until it feels like it’s passed. Seems to work, but who knows until I get my next one.
I’m also realizing in my late-30s that I have at least some form of dyslexia - I used to think Ambien made me hallucinate letters dancing on the page, but it’s my eye muscles and happens most when I’m tired.
I wonder if there are multiple different causes. Because I have had migraines regularly since I was a little kid and sleep was the only cure. (Hours of crying until I'd pass out) But when I got to a teen I tried every pain killer I could find and finally I found that none of them helped unless I took it very early when the pain started. (Within maybe 30-40 min) And even then only ibuprofen worked. (And I have to take quite a bit) But even then the pain doesn't go away for some time. But at least it doesn't get any worse.
So I keep ibuprofen in every car, bag, and a few places around the house.
OTC medication is not typically strong enough to fully fend off a migraine (no, excedrin migraine doesn’t count). Go see a doctor, explain your symptoms etc and get prescribed something like rizatriptan.
Seconding Rizatriptan. It's a game changer. It also seems to work better earlier, before the pounding really sets in, but in the worst case it still turns it down a lot.
In addition to triptans, there's another class of migraine medication that's relatively new, but given the cost and back and forth your doctor will have to do, they prefer to start with triptans: *gepant drugs like Nurtec and Ubrelvy.
Emphasis on the "something like": there are several different drugs in this class (triptans), and it might take a couple of tries to get one that works for you.
Personally, sumatriptan doesn't work reliably, rizatriptan makes me feel super woozy, but eletriptan works well and without noticeable side effects.
For all of the other folks here saying ibuprofen isn't strong enough: I have the same, and only with ibuprofen (vs. other over-the-counter drugs like aspirin or paracetemol): if I catch it early enough, sometimes it staves off the full blown migraine development.
I've had migraines since childhood, fortunately only every couple months for 2-4 hours. Weirdly, I'm so used to the pain at this point that I kind of take it in stride.
The downside is that ibuprofen also often upsets my stomach, and in the bad ones, I barf from the pain, so there's a gamble as to which route to go down.
This is similar to my symptoms. So far I haven't found any over the counter painkiller that helps me reliably. At least not in the doses you're supposed to take.
A few years ago I read something about a theory that migraines have to do with the body's heat regulation, and it was suggested to try a hot shower. That does seem to help me. So nowadays when I get a migraine (thankfully only about five times per year or so) I run a hot bath and stay in the tub for two to three hours. It's not fun, and for the first few minutes the headache gets worse and really starts pounding (blood pressure changes due to the heat maybe? I don't know). But then the heat does seem to take a lot of the edge off, and after a while the pain actually stops. Which it doesn't reliably do with painkillers only. Much better than lying around in bed, unable to sleep.
Not medical advice, your mileage will vary. But might be something others would want to try. If you're going to suffer and wait for it to stop, you might as well consider doing that in the bath.
I semi-regularly get migraines, maybe a handful a year.
Nearly every time it's associated with a night of insomnia - I do everything the same, no coffee or alcohol or anything, no late work or screens. The same bedtime routine, I just.... don't sleep.
I'm not sure how to draw the line of cause/effect between the two. Is the lack of sleep causing a migraine the next morning? Or is the insomnia some symptom of whatever then becomes the symptom of a migraine.
Or even if such a line exists, I think the association is strong enough the two are related, but I know memory and the brain making things fit patterns can be misleading.
I, of course, cannot provide medical advice, but I have had chronic migraines since I was a teenager. Over the years, I've identified several triggers and tend to categorize them; lack of sleep is common. Of course, a complete night of restlessness is fraught with many problems, but I can almost always guarantee that a migraine will be one of them.
I (late 30’s male) grew up with migraine and ultimately discovered that they were triggered by caffeine mixed with dehydration and/or chocolate.
Having discovered this I’ve been able to control them completely, but realize that not everyone’s triggers are the same.
I carry sumatriptan just in case but have never felt as though it’s made a difference. I’m always hopeful for more solutions to migraines for those who suffer
I was getting migraines regularly most Mondays until I finally realized that it was tied to chocolate. I ate chocolate on weekends. I stopped eating chocolate and they went away. Now I never get migraines unless I have chocolate. It is likely the caffeine. I don't consume any other caffeine.
Note that there are theories that migraines start long before an actual attack, and that with this migraine comes certain cravings.
I'm other words, one might crave chocolate and coffee due to the migraine, and only later get symptoms, thereby causing us to believe that there's a causation.
I’ve read enough people say they went coffee free and it helped that I don’t think the craving thing holds up, but I can see it happening in a different symptom: some people say the trigger is like bright lights, but I actually think the upcoming headache may be the one causing the light sensitivity, which would lead us to “remember” the bright lights.
Strange how this has so many different kind of triggers for different people. Makes me wonder if this really one phenomenon, or multiple with similar symptoms.
For me, it took years to identify two triggers: Relieve from stress, and overly exhausting sports or sauna. I used to have a stressful job, and regular intensive training on sunday mornings, and would very often get migraine at exactly 4pm. Since changing the job and doing moderate sports, it became much more infrequent.
Also, I have never had an optical aura. But I have observed yawning, and an increased sensitivity in my nasal passages (basically I feel every breath much more detailed, but not painful) as forewarnings.
"Triggers" are a red herring, there's way too much focus on them. The trigger is merely the final straw, the real problem is everything that came before.
I had headaches diagnosed as migraines since I was a kid, for 40+ years. It got to a point where I had scale 9 headaches for most days of some weeks and it was a tough going. Lots of doctors, some pain relief, but ultimately, no help. Then, in desperation, I tried drinking water. Headaches had been accompanied by the feeling of hunger/thirst and I thought to drink until it went away. I brought home a six-liter pack of mineral water and drank it all in 24 hours. And no more headaches. Nowadays I always have a bottle of water at hand consuming at least 1.5 liters a day. Nights are punctuated by visits to the loo, but I can live with that.
Reading other comments, I suppose migraines are a systemic issue, where something in the body is out of balance which manifests itself as an headache. And the medical science is really not very good with systemic issues: heart surgery has made great strides, but where nervous system meets the digestive system meets the limbic system etc, they struggle. Also, I think there’s an interesting aspect of level of detail of sensitivity here. Turns out my bouts of hunger were actually thirst. Since then, endurance sports have introduced me to an even wider gamut of ways the body might ask for different things. So maybe it’s about our ability to recognize and therefore correct imbalances in the body?
My favorite annoying quote from a book is once you have migraines figured out, they change. I had one solution that worked, it stopped, switched, rinse and repeat.
I get lightning shocks in my head at times, it’s not great. Long list of tried and failed medications. Almost everything on the list 0. Seems different for everyone. X drug works for some then causes memory loss for others.
If you have over 15 migraines per month, you can get Botox every 3 months. It lasts 1-3 months for me with an average of 2. Lasts meaning 1-3 per week. Not lasts means near daily migraines. $2-3k without insurance and it’s about 40 painful shots. Supposedly 2/3 people refuse Botox due to side affects (droopy eye 1/50 chance) or injection pain. Migraines are worse than 40 shots.
The new cgrp migraine prevention versions are available and highly advertised. You need to fail 2-3 classes of drugs to get approval depending on insurance and the syringes are currently hard to get but they last one month with a self subcutaneous injection.
Herbs: haven’t had much luck with anything except menthol variants and smelling/rubbing it on temples which is backed by a few papers.
The people I talk to usually say they used to get migraines then got divorced and they went away. Changed jobs to be less stressful led to less migraines.
Getting sick, weather changes, being overheated, pressure changes barometric/altitude, and not sleeping well causes more migraines. Food triggers led me nowhere.
> Getting sick, weather changes, being overheated, pressure changes barometric/altitude, and not sleeping well causes more migraines. Food triggers led me nowhere.
My neurologist told me that living like a hermit was the best migraine preventative. Simply never leave your cave, don't change your routine ever, don't go places with different weather, etc. Of course that wasn't meant to be taken literally, but I've definitely noticed that any significant change to my routine can result in migraine.
Reading this from the perspective of cluster headache, which gets some hand-me-down treatments from migraine, I just spent half an hour reading about CGRP blockers that have been approved in the last five or six years, including Aimovig and Ajovy for migraine, and Emgality for clusters.
It's been several years since my last cycle (my longest break yet), but it's heartening to know that research continues, leading to more treatment options.
I trust you’ve tried the usual treatments—Verapamil as a preventative, and 100% oxygen 10-15 L/min combined with injected Sumatriptan as an an abortive. I’ve gone from reducing my cluster periods from once a year like clockwork to no more than once every 2-3 years, and the periods have been shorter as well.
Hello, fellow clusterhead! May I ask how you obtained 100% O2? Insurance won't cover it because I have no respiratory issues, and medical supply companies won't talk to me because of insurance denial, even with valid rx. In the meantime, I've been using the canned O2 from sports stores, which is expensive and seems unnecessarily wasteful.
In my case, insurance wouldn’t cover O2 either (actually, I didn’t bother trying), but I had no problem paying cash for a tank with a doctor’s prescription. The up front cost was kinda high, but refills are fairly cheap.
Don’t look for a medical supply place. Look for a bulk gas distributor that sells medical oxygen. For one thing, at the rate you need oxygen for clusters, the small tanks that most medical supply places carry will only last about 15-20 minutes, so maybe enough for one or two attacks. Realistically you want something bigger like a J tank. You also need to get a non-rebreather mask with an inflator bag. A regular mask won’t cut it unfortunately. Search up the ClusterO2 kit for what you need.
If you can’t get medical oxygen, you should be fine with welding oxygen in a pinch. I understand a lot of clusterheads use that without issues. It is exactly the same as medical oxygen, the only difference is that for medical oxygen the tank is purged before each fill to ensure no contamination (although this is very unlikely with welding oxygen anyway, and you should be able to request they purge the tank before filling to be extra sure) and the chain of custody is certified for medical oxygen to ensure that it hasn’t been used for anything else before being delivered to the consumer.
Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster. If they help you, great I guess, but it’s probably in your head (so to speak). I took oral eletriptan for years for clusters, before finally realizing that the headache would go away after 45-60 minutes on their own regardless of whether I took the medication. Now I take injected sumatriptan when I’m caught without oxygen, which knocks them out in under five minutes. The relief is nothing short of magical.
CGRP blockers are the true magic. 6 years ago I had the worst cycle yet, wanted to end it. Found a neurologist who actually knew his shit and understands the pain, he got me injectable sumatriptan and emgality. 6 years of no attacks, stress has recently brought on a cycle so scheduled a nerve block to break it. If you suffer from clusters you need to talk to your doctor about getting on these injections, they saved my life.
Appreciate the recommendation, and CGRP blockers will be my next line of attack should my current regimen prove insufficient. For now, my headaches seem to be pretty well controlled by verapamil as a preventative and oxygen/sumatriptan as an abortive, so I’m cautiously optimistic that I don’t need to introduce a new treatment, especially given that clusters supposedly decrease both in frequency and intensity as you age, or so I’ve heard.
It’s funny, but when I haven’t gotten a headache for a while I almost miss them, as if it were proof (to myself, if nobody else) that I wasn’t really just faking this and yes, it really is more painful than any non-sufferer can possibly imagine. But then I get even a slight shadow, as I did just the other day, and I immediately recall how miserable and awful they are and don’t know what the hell I was ever thinking.
Glad you have found something that works well for you to control the beast. Here’s to another year cluster-free; after that, who knows…
> Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster
They definitely don't knock out the cluster, but do seem to slightly lessen the pain in minutes. I wish triptans helped, but no luck yet with any we've tried.
Let me just copy/paste what I commented the last time this article was posted:
> The pain is protective because it’s telling the person to rest and recover and sleep
Try telling that to people who have pain so intense they end up in a cycle of vomiting and sleeping for a period of 72 hours.
> the brain experiences a blackout called a cortical spreading depression (CSD), when neuronal activity shuts down for a short time
Blackout does not sound like a good description. CSD travels across the cortex in a "wave", where the part currently affected by the wave is depolarized. Nothing is shutting down.
There are a lot of people who get migraine headaches without aura, and there are a lot of people who get migraine auras without headaches. The article doesn't seem to take that into account at all, and I can't seem to find a link to the research? The DOI link just points at the same short article?
Edit: I don't mean to sound like a debbie downer. I'm happy with any and all migraine research, and this seems to look at things from a different perspective, which might lead to new discoveries.
> a cycle of vomiting and sleeping for a period of 72 hours
I've been in such cycles, though mine usually last for about 6 to 12 hours only. That's long enough.
I always figured the stress of my migraine caused my body to say, "okay, get all the food out, we shouldn't be digesting anything at a time like this". I've vomited 20 to 30 times in a night before.
And the weird part is, I actually have good memories of these times. The exhaustion and sleep that follow are amazing, and I feel especially good the next day. I've read sometimes migraines have a serotonin effect, maybe there's some chemical reason my brain decides in retrospect that it was a good experience. I recently saw a Veritasium video about how the ending of an experience shapes our memory of it [0], maybe the relief of the migraine finally subsiding is a good ending and shapes my memory of it.
I have pain/food logs that uncovered nothing about my migranes. I started keeping a sleep log and discovered that on days I snooze my alarm and go back to sleep I have migranes. It takes some effort, but not "snoozing" my alarms (even 10 minutes) and getting up immediately has cured me of my migranes.
I share this in the event someone suffers this unknowingly.
In the past I had very frequent migraines, I suspect caused by stress and irregular sleep (I worked for years in-call and making lot of night works).
Migraines will usually come in the weekend and take sometimes more than 24 hours to end.
They started with irritability, light, noise and smell sensitivity, then visual aura and then migraine.
I had a consultation with a neurologist and he suggested, before starting the drug therapy, to try agopunture with exactly those words:"For somebody is working and if it's not, you just got some needles in your body and you are not getting hurt". I was very skeptical, but it works: after couple of sessions my migraine are almost gone and very less intense. When migraines increases intensity and frequency, I immediately book a new agopunture session and I am fine for 12/18 months.
I suggest anybody that is struggling with migraine to try agopunture, for me was a game changer.
Have migraines from childhood(semi regularly, few per month). There have been a period where it stopped completely for several months.
Had medication prescribed, but did not like side effects much (getting high, blood pressure rising, etc), and since ibuprofen usually helps to mitigate it, I stuck with it(I only get a migraine like once a year that is unbearable, to the point of crying).
Few months ago, went on again to "researching" (listening any podcast episodes I could find on migraines) this topic a bit, and what I heard that I missed before - there is a considerable percentage of people who get migraines from fermented foods(or at least a connection they have made). So eliminating such food lowered my migraine count quite a bit (but I still do get them - and I think a handful of them might be stress related).
I've had migraines twice in my life, both preceded by chronic lack of sleep (thesis writing!). Auras preceded painful headaches in both cases. I cannot imagine having chronic migraines. Perhaps research like this will prompt us not search for the cure to migraines per se but the underlying cause.
rando anecdotal point: I've never had a migraine in my life, I think I can count my headaches not caused by alcohol on one hand. I also have DEC2 mutation so i'm a "short sleeper". I suppose one could infer if someone doesn't suffer from little sleep in all aspects generally, it would track they would never have had a migraine if it was related to sleep?
Yes but I had to work quite hard to get it. You have to find a researcher interested in it. I did it because people wouldn't shut up about being concerned about my health due to my sleep, so I googled, found out it was a thing, and then started hunting down a researcher interested. I'm afraid who I worked with is no longer looking at it, so I can't pass you to them, sorry about that. :\
1. Stress. Significant stress can lead to migraines and I can feel them slowly start to build in the upper front of my brain above my left eye (or at least that's what it feels like). This can be stress from work or from kids or whatever.
2. Blips. I don't know how to describe these really. It's like my brain doesn't quite know how to process what's going on. An example: I gave my kids some ice cream for a snack one day after asking my wife if I should and her saying yes. 5 minutes later, she comes into the kitchen and says "Do we have any ice cream for the kids?". I respond with "Yes, I just gave them some, like we discussed." Her response: "We should give the kids some ice cream."
Now, that's a little bit of a weird conversation, and I think she was distracted by someone messaging her on her phone, but my brain just kind of "blipped" and didn't quite know how to handle it and it was instant blurred vision.
I'm convinced from some anecdotes in my life that a non-trivial amount of neurological behavior is like your blips: caused by actual qualities of the data that the brain is processing, rather than anything lower-level like chemistry and diet.
Here's an example. After some weird arguments a few years ago I began to notice how people's brains respond when they're overwhelmed by someone talking to them with an abstraction they can't easily follow.
Some people kinda 'blank out': they'll start saying 'yeah' or 'okay' in a loop, I think sort of buying time until more data comes in to see if it will make sense. Others strain themselves to follow, but become notably tired or irritable in the process. Others 'fend off' the abstraction by saying things like: 'I don't want to talk about that' or 'that sounds too complicated' . Others seem to not even register it, like they'll instantly switch the subject on a dime and seemingly not notice they did it. Others just pretend to follow even though they don't, or even just don't follow and don't pretend and just say nonsense. And I wouldn't be surprised at all if getting a migraine is another possible response that I just haven't observed/been told about yet.
It's really interesting, once you're watching out for it.
Also I need to stop saying complicated semi-incoherent shit. It seems to be bad for other people's brains.
I have also noticed this and have searched in vain trying to find a definition and/or psychological discussion about this. When I was noticing it in others I would notice myself doing it also!
The closest I got was in street hypnotists. They seek to overwhelm the target to put them in that state and then do their suggestions. The target retains the suggestions but with no awareness of hearing. They may even talk to you. The intentional manufacture of the state I think is called "induction".
But I think it mostly occurs normally between many of us at a lower level (but the hypnotists dont talk about that).
The bit I mostly interested in was what myself and others would say and why they would say it when in that non manufactured state. Imagine two people in a blip talking to each other! The other psychological definition related to the talking bit would be a type of "Freudian slip".
Your "blip" anecdote is super interesting. I know that exact sensation of disorientation (but without the migraines thankfully), and I'm curious if this has been studied in depth anywhere.
In case it helps anyone else, my wife gets migraines immediately from eating anything with milk, onions, corn, green beans, bananas and a few others. However, she can eat all of the above if it is organic. We’re from the US and visited Europe (Germany, Switzerland, The Netherlands) and she could eat anything there, organic or not. Hope it helps someone.
I have suffered migraines for a long time before I knew what migraines were and also a long time after. I was ignorant. But over the years I learned about my triggers. Some may find this helpful so posting them here. Your specific triggers may vary. The ones I have learned over the years are Refined Sugar, Electrolyte Imbalance, Stress, Sleep debt, Acid Reflux, Excessive Hunger, Dehydration (even mild), Excessive Heat, Sun Exposure. This list is not exhaustive but it can help identify triggers that usually go unnoticed for years.
I've had crippling migraines for a few years now. Often 20 or so per month. I rarely get headaches, and usually it's more of a feeling of exhaustion and malaise, following aura that includes facial numbness. The worst part is that it affects my work pretty badly by causing brain fog that lasts for days.
I'm on Ajovy injections which has reduced how many I get, but the only thing that really helps is taking 800mg of ibuprofen. That gives me a few hours of comfort.
It seems like an interesting mechanism, that the brain is somehow signalling by modifying CSF which in turn then then activates nerves.
The question I have is mechanistically, how is the brain actually doing that. If CSF sits on the other side of the blood-brain barrier, it doesn't contact brain cells. So you'd have to introduce some other layer of signalling that does communicate between them.
I've only had probably 3 or so migraines in my life, I sympathize with people who get them often. I can't imagine that level of pain regularly.
One strange thing about migraines for me is that it usually gets worse and worse until eventually I throw up. Immediately after barfing, the migraine loosens its grip and I feel normal again. Always found it super strange.
Just a data point I'd like to throw in... I'll get some horrible headaches if I don't get enough sleep and eat too much salt. It took me a while to figure out the trigger because it take two things, lack of sleep and eating something salty, and then there is a delay of 12 hours or so.
Does anyone else get nasal aural symptoms? My go-to signs were a tingling sensation in the nasal cavities, followed by things smelling horrible.
I've had the classic visual sawtooth pattern exactly once, but the nasal stuff was there maybe 75% of the time. What seems to have helped was blood pressure medication.
So as to not bury the lede: I'm not giving medical advice, but I wonder how many people's migraines are worsened by the Valsalva maneuver? How many would be prevented with a daily low-dose aspirin?
I had my first migraine (with aura) as a teenager. What a scary thing for you to lose proper vision, get a truly nightmarish headache, then feel nauseous and throw up! On average I'd say I got 1-5 a year for many years. I managed them with Migranal. Triptans didn't help. Migranal was an expensive pain to get, and is a poster child for our crazy pharmaceutical situation, but I digress.
I had a concussion a few years ago after which I could hardly go two weeks without getting at least one scotoma. In contrast to before, sometimes it would be just the aura without headache. For insurance reasons I moved over to Nurtec which wasn't bad, and a lot less unpleasant a taste. But 30+ incidents a year was crippling.
My neurologist was convinced my troubles were due to a PFO (patent foramen ovale): in the womb, we obviously do not breathe. A hole between the left and right sides of the heart allows blood to flow through from the mother. At birth a flap is supposed to cover this hole, but in many people it doesn't close all the way and there's a residual "shunt" which allows the "dirty" blood to flow straight through without going through the lungs (which also filter out junk, like microclots for example). When you strain, such as when bearing down/lifting something heavy/Valsalva maneuver, it really pushes this stuff through. Indeed I seemed to notice migraines came more frequently when I was better about exercising.
I had some other sporadic things over the years. My neurologist said "the brain is a big network. Throw a bunch of crap in there, and you get nonlinear outcomes." He was convinced the PFO was to blame for all of this.
I was referred to an interventional cardiologist, whose research had concluded, basically: "not all migraines are resolved by closing the PFO. But, if blood thinners make the migraines go away, in those cases closure does make them go away." Bayes at work. I was put on blood thinners and indeed they virtually stopped. (Sure enough, one of the two I did have in the year I was on Plavix--again, down from 20-30--was when I was doing the Valsava to pop my ears while a flight was landing).
After a year I did have the PFO closed. I am still on low-dose Aspirin (baby/EC). The neurologist had prescribed it years earlier when he first tested me for the PFO, but I resisted having to take medication daily. My original cardiologist who examined me further for the PFO said it was tiny and thought it was clinically insignificant, and didn't think I needed the aspirin. I've had the PFO closed for a year. I had one migraine during the procedure itself (not unexpected), and one more after about six months when I went off the aspirin. So I went back on the aspirin, and will presumably continue to be on it for life.
There are still unanswered questions: none of this explains the concussion, does it? The theory I've pieced together is that migraine is a probabilistic phenomenon. Things can make it more or less likely, presumably by putting the brain in a more or less resilient state. Bad sleeping habits? Inconsistent timing of food (low blood sugar)? Dehydrated? This is playing with dry kindling, waiting for the spark: perhaps a microembolism crossing through the PFO, or some other vasoactive compound (I've had them from the sun reflecting off of something and catching my eye). It was around puberty time when it all began, so a lot of stuff is going on. My thought is that perhaps the concussion "permanently" lowered my threshold.
My mother had always suffered from migraines. For other reasons (old with heart issues), she went on blood thinners temporarily. Then was off the blood thinners. Then she was back on blood thinners. Sure enough, after my experience we looked at her migraine log, and can you guess what pattern we found?
At present, closure is only indicated after you've had a stroke (I had at least one event that adequately qualified). I'm lucky: a few years before my adventure, my coworker had a stroke (while lifting weights) with permanent consequences, after which his PFO was closed. We already know that migraineurs are frequently at higher risk of stroke. I would bet that PFO closure will become a more routine procedure in the coming decades.
If it's not too much to ask, how did you find that procedure and its recovery? I have a moderate PFO and have occasional migraines with aura as well, though in my case the pain component is minimal. My vascular specialist has suggested I consider having the PFO closed, but I have not looked into what is involved. I had a procedure to "deal with" a dural AVF a few years ago, and for some reason I have more anxiety about the PFO...but maybe that's just because I haven't read up on it yet...
Not at all. Honestly the procedure was fairly trivial, as surgeries go. The procedure itself took about 15 minutes; I was awake and even watched the progress. They go in through a catheter in the thigh/groin area, snake up and deploy the device, which is roughly a double-sided umbrella/clamshell, one half on each side of the hole. Mine was a GORE Cardioform. It's safe for MRI within some parameters: I have a card I have to show the technologist.
In total, of course, it was an all-day affair. For me the worst part was having to lie perfectly still for about 4 hours in recovery, to not pop a stitch. Even so, that night at home I did have some bleeding and ended up going to the hospital. They simply applied pressure and a stronger bandage. If I remember correctly, I basically had to avoid strenuous activity for a couple weeks, but aside from that initial bleeding recovery was not a big deal.
For me it seemed like a relatively low risk / low impact procedure (modulo the US healthcare cost lottery). I enjoy scuba diving as well, and I know that PFO also correlates with increased risk of decompression sickness. In addition to the migraine aura, I'd had, let's say a small handful of other minor visual glitches over the years (even predating the concussion), so from my perspective, my most valuable resource, my mind, was getting attacked by microemboli, and for me, correcting the issue mechanically was preferable to living on pharmaceuticals (especially since that only solves part of the equation anyway).
Thank you very much for your perspective. The recovery sounds very similar to that of a cerebral angiogram, of which I've had three.
I had a similar calculus when considering having my AVF corrected...like, deal with it now while I'm relatively young and can still heal fairly well, or deal with it later after the risk of complications has slowly and steadily increased with age. It's just a matter of getting over the anxiety hump I guess...
"I managed them with Migranal. Triptans didn't help."
Similarly, I found that triptans (sumatriptan) wasn't as good or as effective as ergotamine-based formulations.
Whilst sumatriptan worked it didn't suppress migraine pain as effectively as did ergotamine, nor was its effective duration anywhere near as long. A single 1mg dose of ergotamine would last 24 hours whereas 100mg (the stronger dose, 50mg being the other) of sumatriptan would last only 6 or so hours and its action not as effective.
The other problem is that until recently sumatriptan† was much more expensive than ergotamine. I say 'recently' because where I am in Australia the price of ergotamine has gone up eightfold in recent months. Now, it seems the only drugs availabe are the triptans—and that's not the only problem, here triptans are only available in packs of two (or four on script for half strength tablets), which is a ridiculously small quantity—one runs out of the drug when it's most needed. (Clearly, the bastards who set the regulations don't get migraines.)
On the other hand I could get 100 capsules of ergotamine on a single script. As far as I'm concerned, I'm back in the dark ages before my migraines were diagnosed.
No doubt, medicos and pharmacologists who read this will say that triptans are better drugs in that they are more selective, that is their vasoconstrictive effecs are more specific and thus less harmful than ergotamine and no doubt there's some truth to that.
That said, what they and drug manufacturers don't emphasize is that the triptans also have bad side effects such as serotonin syndrome which can be brought on by interactions with other drugs such as the TCAs/tricyclics, MAOIs/monoamine oxidase inhibitors just to mention a few (of the side effects). Also, they quickly become ineffective upon repeated dosing — hence the restricted quantities per script. Yes, ergotamine also has some nasty side effects but not those I've mentioned for the triptans. One of the greatest benefits of ergotamine is that it's just as effective after taking it for decades as when one first starts (I know from experience).
It seems to me the benefits of the triptans have been oversold and that medicos et al actually believe the mantra. It's great for Big Pharma to have everyone believe that given that ergotamine is a readily-available natural product (from ergot fungi), and that any competent lab could refine it for medical use. It's great for Pharma to have everyone believe ergotamine is obsolete.
In the meantime the switch from ergotamine to triptans has caused me nothing but trouble.
___
† Before the recent huge price hike a capsule of ergotamine was about $1 versus $8 for the half strength 50mg sumatriptan tablet (where I am in Australia sumatriptan is available OTC in packs of two for ~$16, the full strength 100mg being script only and even then only in packs of two).
Now do the sums: in my case full-strength (100mg) sumatriptan only lasts 6 hours versus 24 for the 1mg ergotamine. Thus the 24-hour cost for ergotamine is [was] $1 whereas sumatriptan is 24/6 x $8 which makes it 32 times as expensive as the ergotamine!
Moreover, in my case, I break open a capsule of ergotamine and take only half (0.5mg) as that's usually all I'll need. So that makes sumatriptan 64 times more expensive. Right, Big Pharma has ripped us off yet again, big-time!
It's damned time governments did something about this.
This is very interesting for me to read -- my experience was the opposite: dihiydroergotamine was always preposterously expensive (hundreds of dollars for one dose); the history of it was like one of those fascinating novels with a disastrous chain of unintended consequences. It's basically a fungus, used forever, it should be trivial. It predated the FDA, and therein lay the bizarre economic and regulatory paradox: it was grandfathered in, in a way, but the delivery mechanism (a nasal spray) was a later invention that went through the full clinical research gamut. There's no money in the drug to do clinical trials, so it fell into this weird gray area. I wish I could find the article from when I looked into it, presumably some plaintive search at the time, "why is Migranal so expensive?"
I suffered from migraines for over a decade. They were infrequent at first but, at the peak, I was getting 1-2 a week and felt like I was just "surviving" in life. I saw countless doctors and specialty clinics, none of which offered long term relief other than drugs.
For me, Rizatriptan helped take the edge off pain but I always had more migraines than pills could safely relieve in any given month. In the end, most months I had to choose whether I would get relief in the moment or save the 1-2 remaining pills for the following week(s) before a refill.
I had every blood / allergy test available and none ever showed any issues. I thought there may be a correlation to gluten but there were times where gluten (bread) helped with the nausea side effects.
Ultimately, I gave up gluten, coffee and sugar all at once. Within weeks I felt better and suffered no migraines for over a year until I decided to test the waters with a flour tortilla. Within a few hours I was bed ridden with a migraine for 2-3 days.
I have worked sugar back in to my diet in moderation but gluten and coffee are still out. I have only had that one migraine in 3+ years.
Anyone suffering, the absolute best advice I ever got was to keep a food / pain log. Do it every day no matter what. It may take a week, months or a year but it will uncover something that will help reduce frequency. Also, listen to your body. I had numerous doctors tell me I didn't have any food allergies and to focus on other areas for relief. Every single one was wrong and I could have had a cure years previous.
I've heard coffee can relieve migraines, including from a friend that has migraines and doesn't like coffee, and other people with migraines and these people don't know each others.
I've not read on the topic, at this point I wouldn't rule out the placebo effect, and it seems in your case coffee wasn't helping you, but it would be interesting to know if coffee caused migraines in you without the gluten.
Now, going on without coffee is nice too!
At one point, if I drunk a coffee just before a migraine started it would go away. Nothing scientific here but it happenned too many times (both had the coffee and didn't) to establish the result for me.
Same for me: I can recognize the migraine coming by some symptoms, then I usually drink coffee and migraine will usually don't show up.
That’s why Excedrin is made with Tylenol, Aspirin, and Caffeine.
My migraines stopped when I went carnivore which meant no gluten and sugar as well (though I kept the coffee). I'm now in a more keto diet but still no gluten at all and I've only had a couple of light migraines in a year or so (used have them a monthly or more frequently).
It is interesting to know your case as it is a smaller dietary change than mine.
Since I dropped caffeine, my migraines also became much less frequent and when I have some caffeine, I am at risk for getting one. It seems closely related to sleep for me and caffeine (even in moderation) just greatly affects my quality of sleep.
Same for me. As a Brazilian, I’ve always drank coffee without much care, but eventually I started limiting it to mornings.
Then I noticed if I ever forget to drink coffee (or had decaf coffee instead) I’d have a headache in the afternoon.
My solution was to remove caffeine completely, now I only drink decaf coffee and this particular problem disappeared after a few days.
Now about auras, it’s hard to say if there was any effect as they’re more rare for me. This thread is the first time I’ve read people say they drank coffee after the symptoms show up and it can block the headache that comes later on.
Not all flour or sugar are made equal. I wonder what happens if you try flour or sugar from places where some questionable herbicides are banned.
When I read stories like his, I always wonder what we’re doing with our wheat that so many people become completely wheat-intolerant in just 15 years. It is clearly more than just fashion, clearly people can diagnose it themselves and it happened in the anglo-saxon world first.
I'm not really that convinced that it isn't mostly social.. There were more intolerant than diagnosed until the 90s and that has now just flipped with the social overcompensation.
It's really very easy to buy in to the dominant social narrative as an explanation for one of the many undiagnosable health incidents we experience in a lifetime, and the placebo effect confirms whatever is socially helpful.
Most of these social changes now originate or become big from the US first because it dominates international media.
Or do people in a rich society like ours just have more opportunity to notice problems like this vs if you live in a society where life is more hard? It's like it seems we have more people today identifying as gay vs 100 years ago. Is it really more gay people today or do we just have a more tolerant socity that enables more people to identify as gay?
I can agree that for me it was cutting my "wheat" (flour, gluten, etc) consumption that helped me have far less migraines over all. I don't really eat much processed sugar (however I used to when I was a kid). I have taken away caffeine and brought it back without much change in frequency. The hardest part for me was a manager one time thinking it was how much I wasn't spending on doctors to poke/prod/image my head to find the cause or take a new medicine that really angered me. Dealing with people who can't understand that I have no control over when they happen and go away is the worst.
I just started noticing this and I am in the exact same spot, no allergies, lots of migraines.
Thank you for posting this 'cause I though I was making things up by noticing things when all tests were negative.
edit: though it seems to me that coffe(+iburprofen when things are bad) helps.
I started connecting it to food when I noticed I started getting pain on my lower back that slowly creeps up on the course of half a day or so and becomes a migraine. When it starts stopping and I massage my neck down to half my back I get tons of relief when I press on the right nerve/muscle/whatever.
I tried everything over the years - stopping smoking, removing amalgam fillings etc etc.
Reducing sugar has really helped me, although I take propranolol daily and have rizatriptan to hand if need be.
Used to get chronic paroxysmal hemicrania too - ended up having emergency surgery on an impacted wisdom tooth, ended up in ICU for 4 days but haven't had one of those headaches since.
Definitely always believed I have some trigeminal nerve deformity.
I have gotten migraines (a visual aura followed by a horrible headache) on and off for years. Some years I’d have a couple, some years I’d have none at all. I have always tried to trace it back to a common theme. For the longest time I thought that common theme was caffeine.. to the point that I quit caffeine for like a year. Unfortunately, I still ended up with a migraine! One day I realized something, maybe my migraines had nothing to do with caffeine but everything to do with electrolyte balance. I recalled the many days I’ve had migraines and besides caffeine, the other common theme was that I had drank a significant amount of water. Sparkling water especially, I can pretty much just guzzle all day because I never get bored or sick of it. Sense then, I’ve made sure that if I drink a lot of water I also throw in some LMNT or similar electrolyte powder in there. I’ve been able to enjoy coffee again without the migraine. YMMV!
It was similar for me. I'd get migraines a few times a year. I couldn't find any food correlation, but it seemed to often happen the day after doing strenuous activity, sweating a lot and drinking a lot of water. I started to suspect it was related to lack of electrolytes, so I began taking electrolyte solution after running or any other sweaty activity. In the few years since then, the migraines have been much less frequent, and about half as intense.
I will have to give this a shot for my personal migraines. I do a lot of physical exercise when not on the computer. I also drink plenty of water so I am hydrated before exercising (I can't stand to drink water while working out). I live in a country with a high salt consumption but maybe I am not getting enough electrolytes. I can't honestly say caffeine has any noticeable effect on my frequency though.
Let me know how it goes!
It's cool to see some progress on aural migraines.
In the past I tried zolmitriptans for it but they don't do much, same with milder pain killers.
My migraines started at 20, two decades ago. I remember the first one like it was yesterday. I was studying CS and was coding on a dark-mode CRT monitor with a big fat window reflection on the screen.
It always happen the same way, with the characteristic jiggles, some kind of colorful, moving patterns of light that start in the center of my vision, slowly expanding to my entire field of view, making me temporarily blind. Then 30 mns after the onset of that, gone. 30 more minutes and the headache + strong nausea start, and immense fatigue. At that point I'm out of commission for a good 12h. Meaning I better be close to my bed, in total darkness.
It really sucks. I used to have them every 3 months on the dot, like on a timer. As I'm getting older I'm having less and less of them, going about a year without one. And they are a lot milder now. I have a lot less of the jiggles, no nausea and the headache is not so bad. I'm still fatigued but usually recover the same day. I consider myself lucky.
It seems to run in my family.
I've tried finding a trigger for the migraines but I have no clue. I used to associate them with bright lights as there is usually a bright light present when they happen, but it needs some other element. Stress and fatigue appear to be factors, as are tanins contained in red wine and beer. But sometimes none of these elements were present.
I have a personal non-scientific theory that serotonin levels play a role. High levels like I think I had when I was younger tend to trigger migraines. As I'm getting older and grumpier, I probably have low serotonin and less migraines...
Same, with aura, but without bad headache symptoms beyond a 3/10 on the pain scale. I use to have them monthly, almost on the dot. Unrelated to them, I started taking Magnesium supplements and now rarely ever have aura migraines. Kinda crazy how well it worked for me. Also could never really figure out the “precipitating factors” but bright light was almost always the direct trigger.
Thanks for sharing. I have the same “bright lights” hypothesis. If I see something bright I close my eyes until it feels like it’s passed. Seems to work, but who knows until I get my next one.
I’m also realizing in my late-30s that I have at least some form of dyslexia - I used to think Ambien made me hallucinate letters dancing on the page, but it’s my eye muscles and happens most when I’m tired.
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I wonder if there are multiple different causes. Because I have had migraines regularly since I was a little kid and sleep was the only cure. (Hours of crying until I'd pass out) But when I got to a teen I tried every pain killer I could find and finally I found that none of them helped unless I took it very early when the pain started. (Within maybe 30-40 min) And even then only ibuprofen worked. (And I have to take quite a bit) But even then the pain doesn't go away for some time. But at least it doesn't get any worse.
So I keep ibuprofen in every car, bag, and a few places around the house.
OTC medication is not typically strong enough to fully fend off a migraine (no, excedrin migraine doesn’t count). Go see a doctor, explain your symptoms etc and get prescribed something like rizatriptan.
Seconding Rizatriptan. It's a game changer. It also seems to work better earlier, before the pounding really sets in, but in the worst case it still turns it down a lot.
In addition to triptans, there's another class of migraine medication that's relatively new, but given the cost and back and forth your doctor will have to do, they prefer to start with triptans: *gepant drugs like Nurtec and Ubrelvy.
Just wanted to third this recommendation, as it does defeat some of my migraines. I had brain surgery, get em every week. Rizatriptan is a life saver.
Emphasis on the "something like": there are several different drugs in this class (triptans), and it might take a couple of tries to get one that works for you.
Personally, sumatriptan doesn't work reliably, rizatriptan makes me feel super woozy, but eletriptan works well and without noticeable side effects.
Hence seeing a doctor to get a prescription and follow up :)
We tried with diclofenac first, didn’t work at all.
Did you have any side effects from rizatriptan?
Not really!
For all of the other folks here saying ibuprofen isn't strong enough: I have the same, and only with ibuprofen (vs. other over-the-counter drugs like aspirin or paracetemol): if I catch it early enough, sometimes it staves off the full blown migraine development.
I've had migraines since childhood, fortunately only every couple months for 2-4 hours. Weirdly, I'm so used to the pain at this point that I kind of take it in stride.
The downside is that ibuprofen also often upsets my stomach, and in the bad ones, I barf from the pain, so there's a gamble as to which route to go down.
This is similar to my symptoms. So far I haven't found any over the counter painkiller that helps me reliably. At least not in the doses you're supposed to take.
A few years ago I read something about a theory that migraines have to do with the body's heat regulation, and it was suggested to try a hot shower. That does seem to help me. So nowadays when I get a migraine (thankfully only about five times per year or so) I run a hot bath and stay in the tub for two to three hours. It's not fun, and for the first few minutes the headache gets worse and really starts pounding (blood pressure changes due to the heat maybe? I don't know). But then the heat does seem to take a lot of the edge off, and after a while the pain actually stops. Which it doesn't reliably do with painkillers only. Much better than lying around in bed, unable to sleep.
Not medical advice, your mileage will vary. But might be something others would want to try. If you're going to suffer and wait for it to stop, you might as well consider doing that in the bath.
Same experience (sleep helped as a kid but now not anymore).
A neurologist prescribed me Metagelan.
I asked this about the other recommended drug above to...
Any side effects you got from Metagelan?
Any idea how/why it works for you?
I semi-regularly get migraines, maybe a handful a year.
Nearly every time it's associated with a night of insomnia - I do everything the same, no coffee or alcohol or anything, no late work or screens. The same bedtime routine, I just.... don't sleep.
I'm not sure how to draw the line of cause/effect between the two. Is the lack of sleep causing a migraine the next morning? Or is the insomnia some symptom of whatever then becomes the symptom of a migraine.
Or even if such a line exists, I think the association is strong enough the two are related, but I know memory and the brain making things fit patterns can be misleading.
I, of course, cannot provide medical advice, but I have had chronic migraines since I was a teenager. Over the years, I've identified several triggers and tend to categorize them; lack of sleep is common. Of course, a complete night of restlessness is fraught with many problems, but I can almost always guarantee that a migraine will be one of them.
Migraines can have symptoms in advance of the headache. It is called the prodrome and insomnia is one of the possible symptoms.
The insomnia probably doesn't help, but it is likely an advance symptom instead of the cause.
I (late 30’s male) grew up with migraine and ultimately discovered that they were triggered by caffeine mixed with dehydration and/or chocolate.
Having discovered this I’ve been able to control them completely, but realize that not everyone’s triggers are the same.
I carry sumatriptan just in case but have never felt as though it’s made a difference. I’m always hopeful for more solutions to migraines for those who suffer
I have a massive chocolate craving in the recovery phase, although I suspect it's just the body going after high-energy food.
I was getting migraines regularly most Mondays until I finally realized that it was tied to chocolate. I ate chocolate on weekends. I stopped eating chocolate and they went away. Now I never get migraines unless I have chocolate. It is likely the caffeine. I don't consume any other caffeine.
Note that there are theories that migraines start long before an actual attack, and that with this migraine comes certain cravings.
I'm other words, one might crave chocolate and coffee due to the migraine, and only later get symptoms, thereby causing us to believe that there's a causation.
Post hoc ergo propter hoc.
I’ve read enough people say they went coffee free and it helped that I don’t think the craving thing holds up, but I can see it happening in a different symptom: some people say the trigger is like bright lights, but I actually think the upcoming headache may be the one causing the light sensitivity, which would lead us to “remember” the bright lights.
Strange how this has so many different kind of triggers for different people. Makes me wonder if this really one phenomenon, or multiple with similar symptoms.
For me, it took years to identify two triggers: Relieve from stress, and overly exhausting sports or sauna. I used to have a stressful job, and regular intensive training on sunday mornings, and would very often get migraine at exactly 4pm. Since changing the job and doing moderate sports, it became much more infrequent.
Also, I have never had an optical aura. But I have observed yawning, and an increased sensitivity in my nasal passages (basically I feel every breath much more detailed, but not painful) as forewarnings.
"Triggers" are a red herring, there's way too much focus on them. The trigger is merely the final straw, the real problem is everything that came before.
Many people say one cause may be electrolytes imbalance, which would explain the migraines after intensive sports.
I had headaches diagnosed as migraines since I was a kid, for 40+ years. It got to a point where I had scale 9 headaches for most days of some weeks and it was a tough going. Lots of doctors, some pain relief, but ultimately, no help. Then, in desperation, I tried drinking water. Headaches had been accompanied by the feeling of hunger/thirst and I thought to drink until it went away. I brought home a six-liter pack of mineral water and drank it all in 24 hours. And no more headaches. Nowadays I always have a bottle of water at hand consuming at least 1.5 liters a day. Nights are punctuated by visits to the loo, but I can live with that.
Reading other comments, I suppose migraines are a systemic issue, where something in the body is out of balance which manifests itself as an headache. And the medical science is really not very good with systemic issues: heart surgery has made great strides, but where nervous system meets the digestive system meets the limbic system etc, they struggle. Also, I think there’s an interesting aspect of level of detail of sensitivity here. Turns out my bouts of hunger were actually thirst. Since then, endurance sports have introduced me to an even wider gamut of ways the body might ask for different things. So maybe it’s about our ability to recognize and therefore correct imbalances in the body?
My favorite annoying quote from a book is once you have migraines figured out, they change. I had one solution that worked, it stopped, switched, rinse and repeat.
I get lightning shocks in my head at times, it’s not great. Long list of tried and failed medications. Almost everything on the list 0. Seems different for everyone. X drug works for some then causes memory loss for others.
If you have over 15 migraines per month, you can get Botox every 3 months. It lasts 1-3 months for me with an average of 2. Lasts meaning 1-3 per week. Not lasts means near daily migraines. $2-3k without insurance and it’s about 40 painful shots. Supposedly 2/3 people refuse Botox due to side affects (droopy eye 1/50 chance) or injection pain. Migraines are worse than 40 shots.
The new cgrp migraine prevention versions are available and highly advertised. You need to fail 2-3 classes of drugs to get approval depending on insurance and the syringes are currently hard to get but they last one month with a self subcutaneous injection.
Herbs: haven’t had much luck with anything except menthol variants and smelling/rubbing it on temples which is backed by a few papers.
The people I talk to usually say they used to get migraines then got divorced and they went away. Changed jobs to be less stressful led to less migraines.
Getting sick, weather changes, being overheated, pressure changes barometric/altitude, and not sleeping well causes more migraines. Food triggers led me nowhere.
0. https://www.drugs.com/condition/migraine.html?page_all=1
> Getting sick, weather changes, being overheated, pressure changes barometric/altitude, and not sleeping well causes more migraines. Food triggers led me nowhere.
My neurologist told me that living like a hermit was the best migraine preventative. Simply never leave your cave, don't change your routine ever, don't go places with different weather, etc. Of course that wasn't meant to be taken literally, but I've definitely noticed that any significant change to my routine can result in migraine.
Reading this from the perspective of cluster headache, which gets some hand-me-down treatments from migraine, I just spent half an hour reading about CGRP blockers that have been approved in the last five or six years, including Aimovig and Ajovy for migraine, and Emgality for clusters.
It's been several years since my last cycle (my longest break yet), but it's heartening to know that research continues, leading to more treatment options.
Hello, fellow clusterhead!
I trust you’ve tried the usual treatments—Verapamil as a preventative, and 100% oxygen 10-15 L/min combined with injected Sumatriptan as an an abortive. I’ve gone from reducing my cluster periods from once a year like clockwork to no more than once every 2-3 years, and the periods have been shorter as well.
Hope you are well.
(not the person to whom you were replying)
Hello, fellow clusterhead! May I ask how you obtained 100% O2? Insurance won't cover it because I have no respiratory issues, and medical supply companies won't talk to me because of insurance denial, even with valid rx. In the meantime, I've been using the canned O2 from sports stores, which is expensive and seems unnecessarily wasteful.
In my case, insurance wouldn’t cover O2 either (actually, I didn’t bother trying), but I had no problem paying cash for a tank with a doctor’s prescription. The up front cost was kinda high, but refills are fairly cheap.
Don’t look for a medical supply place. Look for a bulk gas distributor that sells medical oxygen. For one thing, at the rate you need oxygen for clusters, the small tanks that most medical supply places carry will only last about 15-20 minutes, so maybe enough for one or two attacks. Realistically you want something bigger like a J tank. You also need to get a non-rebreather mask with an inflator bag. A regular mask won’t cut it unfortunately. Search up the ClusterO2 kit for what you need.
If you can’t get medical oxygen, you should be fine with welding oxygen in a pinch. I understand a lot of clusterheads use that without issues. It is exactly the same as medical oxygen, the only difference is that for medical oxygen the tank is purged before each fill to ensure no contamination (although this is very unlikely with welding oxygen anyway, and you should be able to request they purge the tank before filling to be extra sure) and the chain of custody is certified for medical oxygen to ensure that it hasn’t been used for anything else before being delivered to the consumer.
Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster. If they help you, great I guess, but it’s probably in your head (so to speak). I took oral eletriptan for years for clusters, before finally realizing that the headache would go away after 45-60 minutes on their own regardless of whether I took the medication. Now I take injected sumatriptan when I’m caught without oxygen, which knocks them out in under five minutes. The relief is nothing short of magical.
CGRP blockers are the true magic. 6 years ago I had the worst cycle yet, wanted to end it. Found a neurologist who actually knew his shit and understands the pain, he got me injectable sumatriptan and emgality. 6 years of no attacks, stress has recently brought on a cycle so scheduled a nerve block to break it. If you suffer from clusters you need to talk to your doctor about getting on these injections, they saved my life.
Appreciate the recommendation, and CGRP blockers will be my next line of attack should my current regimen prove insufficient. For now, my headaches seem to be pretty well controlled by verapamil as a preventative and oxygen/sumatriptan as an abortive, so I’m cautiously optimistic that I don’t need to introduce a new treatment, especially given that clusters supposedly decrease both in frequency and intensity as you age, or so I’ve heard.
It’s funny, but when I haven’t gotten a headache for a while I almost miss them, as if it were proof (to myself, if nobody else) that I wasn’t really just faking this and yes, it really is more painful than any non-sufferer can possibly imagine. But then I get even a slight shadow, as I did just the other day, and I immediately recall how miserable and awful they are and don’t know what the hell I was ever thinking.
Glad you have found something that works well for you to control the beast. Here’s to another year cluster-free; after that, who knows…
> Honestly don’t bother with canned O2. It is not 100% pure, which is an absolute necessity, and they don’t deliver nearly the quantity you need to knock out a cluster
They definitely don't knock out the cluster, but do seem to slightly lessen the pain in minutes. I wish triptans helped, but no luck yet with any we've tried.
Thanks for the help with O2 :)
Let me just copy/paste what I commented the last time this article was posted:
> The pain is protective because it’s telling the person to rest and recover and sleep
Try telling that to people who have pain so intense they end up in a cycle of vomiting and sleeping for a period of 72 hours.
> the brain experiences a blackout called a cortical spreading depression (CSD), when neuronal activity shuts down for a short time
Blackout does not sound like a good description. CSD travels across the cortex in a "wave", where the part currently affected by the wave is depolarized. Nothing is shutting down.
There are a lot of people who get migraine headaches without aura, and there are a lot of people who get migraine auras without headaches. The article doesn't seem to take that into account at all, and I can't seem to find a link to the research? The DOI link just points at the same short article?
Edit: I don't mean to sound like a debbie downer. I'm happy with any and all migraine research, and this seems to look at things from a different perspective, which might lead to new discoveries.
> a cycle of vomiting and sleeping for a period of 72 hours
I've been in such cycles, though mine usually last for about 6 to 12 hours only. That's long enough.
I always figured the stress of my migraine caused my body to say, "okay, get all the food out, we shouldn't be digesting anything at a time like this". I've vomited 20 to 30 times in a night before.
And the weird part is, I actually have good memories of these times. The exhaustion and sleep that follow are amazing, and I feel especially good the next day. I've read sometimes migraines have a serotonin effect, maybe there's some chemical reason my brain decides in retrospect that it was a good experience. I recently saw a Veritasium video about how the ending of an experience shapes our memory of it [0], maybe the relief of the migraine finally subsiding is a good ending and shapes my memory of it.
[0]: https://www.youtube.com/watch?v=v4r71kEdYME
I have pain/food logs that uncovered nothing about my migranes. I started keeping a sleep log and discovered that on days I snooze my alarm and go back to sleep I have migranes. It takes some effort, but not "snoozing" my alarms (even 10 minutes) and getting up immediately has cured me of my migranes.
I share this in the event someone suffers this unknowingly.
In the past I had very frequent migraines, I suspect caused by stress and irregular sleep (I worked for years in-call and making lot of night works). Migraines will usually come in the weekend and take sometimes more than 24 hours to end. They started with irritability, light, noise and smell sensitivity, then visual aura and then migraine. I had a consultation with a neurologist and he suggested, before starting the drug therapy, to try agopunture with exactly those words:"For somebody is working and if it's not, you just got some needles in your body and you are not getting hurt". I was very skeptical, but it works: after couple of sessions my migraine are almost gone and very less intense. When migraines increases intensity and frequency, I immediately book a new agopunture session and I am fine for 12/18 months.
I suggest anybody that is struggling with migraine to try agopunture, for me was a game changer.
Have migraines from childhood(semi regularly, few per month). There have been a period where it stopped completely for several months. Had medication prescribed, but did not like side effects much (getting high, blood pressure rising, etc), and since ibuprofen usually helps to mitigate it, I stuck with it(I only get a migraine like once a year that is unbearable, to the point of crying). Few months ago, went on again to "researching" (listening any podcast episodes I could find on migraines) this topic a bit, and what I heard that I missed before - there is a considerable percentage of people who get migraines from fermented foods(or at least a connection they have made). So eliminating such food lowered my migraine count quite a bit (but I still do get them - and I think a handful of them might be stress related).
I've had migraines twice in my life, both preceded by chronic lack of sleep (thesis writing!). Auras preceded painful headaches in both cases. I cannot imagine having chronic migraines. Perhaps research like this will prompt us not search for the cure to migraines per se but the underlying cause.
rando anecdotal point: I've never had a migraine in my life, I think I can count my headaches not caused by alcohol on one hand. I also have DEC2 mutation so i'm a "short sleeper". I suppose one could infer if someone doesn't suffer from little sleep in all aspects generally, it would track they would never have had a migraine if it was related to sleep?
How did you find out about DEC2? Is there a test?
Yes but I had to work quite hard to get it. You have to find a researcher interested in it. I did it because people wouldn't shut up about being concerned about my health due to my sleep, so I googled, found out it was a thing, and then started hunting down a researcher interested. I'm afraid who I worked with is no longer looking at it, so I can't pass you to them, sorry about that. :\
I get migraines from two situations:
1. Stress. Significant stress can lead to migraines and I can feel them slowly start to build in the upper front of my brain above my left eye (or at least that's what it feels like). This can be stress from work or from kids or whatever.
2. Blips. I don't know how to describe these really. It's like my brain doesn't quite know how to process what's going on. An example: I gave my kids some ice cream for a snack one day after asking my wife if I should and her saying yes. 5 minutes later, she comes into the kitchen and says "Do we have any ice cream for the kids?". I respond with "Yes, I just gave them some, like we discussed." Her response: "We should give the kids some ice cream."
Now, that's a little bit of a weird conversation, and I think she was distracted by someone messaging her on her phone, but my brain just kind of "blipped" and didn't quite know how to handle it and it was instant blurred vision.
I'm convinced from some anecdotes in my life that a non-trivial amount of neurological behavior is like your blips: caused by actual qualities of the data that the brain is processing, rather than anything lower-level like chemistry and diet.
Here's an example. After some weird arguments a few years ago I began to notice how people's brains respond when they're overwhelmed by someone talking to them with an abstraction they can't easily follow.
Some people kinda 'blank out': they'll start saying 'yeah' or 'okay' in a loop, I think sort of buying time until more data comes in to see if it will make sense. Others strain themselves to follow, but become notably tired or irritable in the process. Others 'fend off' the abstraction by saying things like: 'I don't want to talk about that' or 'that sounds too complicated' . Others seem to not even register it, like they'll instantly switch the subject on a dime and seemingly not notice they did it. Others just pretend to follow even though they don't, or even just don't follow and don't pretend and just say nonsense. And I wouldn't be surprised at all if getting a migraine is another possible response that I just haven't observed/been told about yet.
It's really interesting, once you're watching out for it.
Also I need to stop saying complicated semi-incoherent shit. It seems to be bad for other people's brains.
I have also noticed this and have searched in vain trying to find a definition and/or psychological discussion about this. When I was noticing it in others I would notice myself doing it also!
The closest I got was in street hypnotists. They seek to overwhelm the target to put them in that state and then do their suggestions. The target retains the suggestions but with no awareness of hearing. They may even talk to you. The intentional manufacture of the state I think is called "induction".
But I think it mostly occurs normally between many of us at a lower level (but the hypnotists dont talk about that).
The bit I mostly interested in was what myself and others would say and why they would say it when in that non manufactured state. Imagine two people in a blip talking to each other! The other psychological definition related to the talking bit would be a type of "Freudian slip".
The blip could be a focal seizure, you might want to talk with a neurologist? https://en.wikipedia.org/wiki/Focal_seizure
Your "blip" anecdote is super interesting. I know that exact sensation of disorientation (but without the migraines thankfully), and I'm curious if this has been studied in depth anywhere.
In case it helps anyone else, my wife gets migraines immediately from eating anything with milk, onions, corn, green beans, bananas and a few others. However, she can eat all of the above if it is organic. We’re from the US and visited Europe (Germany, Switzerland, The Netherlands) and she could eat anything there, organic or not. Hope it helps someone.
I have suffered migraines for a long time before I knew what migraines were and also a long time after. I was ignorant. But over the years I learned about my triggers. Some may find this helpful so posting them here. Your specific triggers may vary. The ones I have learned over the years are Refined Sugar, Electrolyte Imbalance, Stress, Sleep debt, Acid Reflux, Excessive Hunger, Dehydration (even mild), Excessive Heat, Sun Exposure. This list is not exhaustive but it can help identify triggers that usually go unnoticed for years.
I've had crippling migraines for a few years now. Often 20 or so per month. I rarely get headaches, and usually it's more of a feeling of exhaustion and malaise, following aura that includes facial numbness. The worst part is that it affects my work pretty badly by causing brain fog that lasts for days.
I'm on Ajovy injections which has reduced how many I get, but the only thing that really helps is taking 800mg of ibuprofen. That gives me a few hours of comfort.
It seems like an interesting mechanism, that the brain is somehow signalling by modifying CSF which in turn then then activates nerves.
The question I have is mechanistically, how is the brain actually doing that. If CSF sits on the other side of the blood-brain barrier, it doesn't contact brain cells. So you'd have to introduce some other layer of signalling that does communicate between them.
I've only had probably 3 or so migraines in my life, I sympathize with people who get them often. I can't imagine that level of pain regularly.
One strange thing about migraines for me is that it usually gets worse and worse until eventually I throw up. Immediately after barfing, the migraine loosens its grip and I feel normal again. Always found it super strange.
Just a data point I'd like to throw in... I'll get some horrible headaches if I don't get enough sleep and eat too much salt. It took me a while to figure out the trigger because it take two things, lack of sleep and eating something salty, and then there is a delay of 12 hours or so.
Does anyone else get nasal aural symptoms? My go-to signs were a tingling sensation in the nasal cavities, followed by things smelling horrible.
I've had the classic visual sawtooth pattern exactly once, but the nasal stuff was there maybe 75% of the time. What seems to have helped was blood pressure medication.
My olfactory sense gets a major boost when I'm about to have a migraine. This is usually unpleasant, but sometimes it's nice...
Getting up at the same time every day of the week without fail, and reducing overall caffiene intake helped mine
So as to not bury the lede: I'm not giving medical advice, but I wonder how many people's migraines are worsened by the Valsalva maneuver? How many would be prevented with a daily low-dose aspirin?
I had my first migraine (with aura) as a teenager. What a scary thing for you to lose proper vision, get a truly nightmarish headache, then feel nauseous and throw up! On average I'd say I got 1-5 a year for many years. I managed them with Migranal. Triptans didn't help. Migranal was an expensive pain to get, and is a poster child for our crazy pharmaceutical situation, but I digress.
I had a concussion a few years ago after which I could hardly go two weeks without getting at least one scotoma. In contrast to before, sometimes it would be just the aura without headache. For insurance reasons I moved over to Nurtec which wasn't bad, and a lot less unpleasant a taste. But 30+ incidents a year was crippling.
My neurologist was convinced my troubles were due to a PFO (patent foramen ovale): in the womb, we obviously do not breathe. A hole between the left and right sides of the heart allows blood to flow through from the mother. At birth a flap is supposed to cover this hole, but in many people it doesn't close all the way and there's a residual "shunt" which allows the "dirty" blood to flow straight through without going through the lungs (which also filter out junk, like microclots for example). When you strain, such as when bearing down/lifting something heavy/Valsalva maneuver, it really pushes this stuff through. Indeed I seemed to notice migraines came more frequently when I was better about exercising.
I had some other sporadic things over the years. My neurologist said "the brain is a big network. Throw a bunch of crap in there, and you get nonlinear outcomes." He was convinced the PFO was to blame for all of this.
I was referred to an interventional cardiologist, whose research had concluded, basically: "not all migraines are resolved by closing the PFO. But, if blood thinners make the migraines go away, in those cases closure does make them go away." Bayes at work. I was put on blood thinners and indeed they virtually stopped. (Sure enough, one of the two I did have in the year I was on Plavix--again, down from 20-30--was when I was doing the Valsava to pop my ears while a flight was landing).
After a year I did have the PFO closed. I am still on low-dose Aspirin (baby/EC). The neurologist had prescribed it years earlier when he first tested me for the PFO, but I resisted having to take medication daily. My original cardiologist who examined me further for the PFO said it was tiny and thought it was clinically insignificant, and didn't think I needed the aspirin. I've had the PFO closed for a year. I had one migraine during the procedure itself (not unexpected), and one more after about six months when I went off the aspirin. So I went back on the aspirin, and will presumably continue to be on it for life.
There are still unanswered questions: none of this explains the concussion, does it? The theory I've pieced together is that migraine is a probabilistic phenomenon. Things can make it more or less likely, presumably by putting the brain in a more or less resilient state. Bad sleeping habits? Inconsistent timing of food (low blood sugar)? Dehydrated? This is playing with dry kindling, waiting for the spark: perhaps a microembolism crossing through the PFO, or some other vasoactive compound (I've had them from the sun reflecting off of something and catching my eye). It was around puberty time when it all began, so a lot of stuff is going on. My thought is that perhaps the concussion "permanently" lowered my threshold.
My mother had always suffered from migraines. For other reasons (old with heart issues), she went on blood thinners temporarily. Then was off the blood thinners. Then she was back on blood thinners. Sure enough, after my experience we looked at her migraine log, and can you guess what pattern we found?
At present, closure is only indicated after you've had a stroke (I had at least one event that adequately qualified). I'm lucky: a few years before my adventure, my coworker had a stroke (while lifting weights) with permanent consequences, after which his PFO was closed. We already know that migraineurs are frequently at higher risk of stroke. I would bet that PFO closure will become a more routine procedure in the coming decades.
> After a year I did have the PFO closed...
If it's not too much to ask, how did you find that procedure and its recovery? I have a moderate PFO and have occasional migraines with aura as well, though in my case the pain component is minimal. My vascular specialist has suggested I consider having the PFO closed, but I have not looked into what is involved. I had a procedure to "deal with" a dural AVF a few years ago, and for some reason I have more anxiety about the PFO...but maybe that's just because I haven't read up on it yet...
Not at all. Honestly the procedure was fairly trivial, as surgeries go. The procedure itself took about 15 minutes; I was awake and even watched the progress. They go in through a catheter in the thigh/groin area, snake up and deploy the device, which is roughly a double-sided umbrella/clamshell, one half on each side of the hole. Mine was a GORE Cardioform. It's safe for MRI within some parameters: I have a card I have to show the technologist.
In total, of course, it was an all-day affair. For me the worst part was having to lie perfectly still for about 4 hours in recovery, to not pop a stitch. Even so, that night at home I did have some bleeding and ended up going to the hospital. They simply applied pressure and a stronger bandage. If I remember correctly, I basically had to avoid strenuous activity for a couple weeks, but aside from that initial bleeding recovery was not a big deal.
For me it seemed like a relatively low risk / low impact procedure (modulo the US healthcare cost lottery). I enjoy scuba diving as well, and I know that PFO also correlates with increased risk of decompression sickness. In addition to the migraine aura, I'd had, let's say a small handful of other minor visual glitches over the years (even predating the concussion), so from my perspective, my most valuable resource, my mind, was getting attacked by microemboli, and for me, correcting the issue mechanically was preferable to living on pharmaceuticals (especially since that only solves part of the equation anyway).
Thank you very much for your perspective. The recovery sounds very similar to that of a cerebral angiogram, of which I've had three.
I had a similar calculus when considering having my AVF corrected...like, deal with it now while I'm relatively young and can still heal fairly well, or deal with it later after the risk of complications has slowly and steadily increased with age. It's just a matter of getting over the anxiety hump I guess...
Closing a PFO is the only procedure I know of that can cure migraine. Sadly it seems like not everyone's migraines are caused by a PFO.
"I managed them with Migranal. Triptans didn't help."
Similarly, I found that triptans (sumatriptan) wasn't as good or as effective as ergotamine-based formulations.
Whilst sumatriptan worked it didn't suppress migraine pain as effectively as did ergotamine, nor was its effective duration anywhere near as long. A single 1mg dose of ergotamine would last 24 hours whereas 100mg (the stronger dose, 50mg being the other) of sumatriptan would last only 6 or so hours and its action not as effective.
The other problem is that until recently sumatriptan† was much more expensive than ergotamine. I say 'recently' because where I am in Australia the price of ergotamine has gone up eightfold in recent months. Now, it seems the only drugs availabe are the triptans—and that's not the only problem, here triptans are only available in packs of two (or four on script for half strength tablets), which is a ridiculously small quantity—one runs out of the drug when it's most needed. (Clearly, the bastards who set the regulations don't get migraines.)
On the other hand I could get 100 capsules of ergotamine on a single script. As far as I'm concerned, I'm back in the dark ages before my migraines were diagnosed.
No doubt, medicos and pharmacologists who read this will say that triptans are better drugs in that they are more selective, that is their vasoconstrictive effecs are more specific and thus less harmful than ergotamine and no doubt there's some truth to that.
That said, what they and drug manufacturers don't emphasize is that the triptans also have bad side effects such as serotonin syndrome which can be brought on by interactions with other drugs such as the TCAs/tricyclics, MAOIs/monoamine oxidase inhibitors just to mention a few (of the side effects). Also, they quickly become ineffective upon repeated dosing — hence the restricted quantities per script. Yes, ergotamine also has some nasty side effects but not those I've mentioned for the triptans. One of the greatest benefits of ergotamine is that it's just as effective after taking it for decades as when one first starts (I know from experience).
It seems to me the benefits of the triptans have been oversold and that medicos et al actually believe the mantra. It's great for Big Pharma to have everyone believe that given that ergotamine is a readily-available natural product (from ergot fungi), and that any competent lab could refine it for medical use. It's great for Pharma to have everyone believe ergotamine is obsolete.
In the meantime the switch from ergotamine to triptans has caused me nothing but trouble.
___
† Before the recent huge price hike a capsule of ergotamine was about $1 versus $8 for the half strength 50mg sumatriptan tablet (where I am in Australia sumatriptan is available OTC in packs of two for ~$16, the full strength 100mg being script only and even then only in packs of two).
Now do the sums: in my case full-strength (100mg) sumatriptan only lasts 6 hours versus 24 for the 1mg ergotamine. Thus the 24-hour cost for ergotamine is [was] $1 whereas sumatriptan is 24/6 x $8 which makes it 32 times as expensive as the ergotamine!
Moreover, in my case, I break open a capsule of ergotamine and take only half (0.5mg) as that's usually all I'll need. So that makes sumatriptan 64 times more expensive. Right, Big Pharma has ripped us off yet again, big-time!
It's damned time governments did something about this.
This is very interesting for me to read -- my experience was the opposite: dihiydroergotamine was always preposterously expensive (hundreds of dollars for one dose); the history of it was like one of those fascinating novels with a disastrous chain of unintended consequences. It's basically a fungus, used forever, it should be trivial. It predated the FDA, and therein lay the bizarre economic and regulatory paradox: it was grandfathered in, in a way, but the delivery mechanism (a nasal spray) was a later invention that went through the full clinical research gamut. There's no money in the drug to do clinical trials, so it fell into this weird gray area. I wish I could find the article from when I looked into it, presumably some plaintive search at the time, "why is Migranal so expensive?"