I was around 13 when I had my first migraine. A solid block of pain on the right side of my head. That occasional migraine became more frequent over the years. I had a headache 24/7 in one specific place in my head.
In my early 30's, after blood tests, food elimination, x-rays and finally an MRI I was told that I had Chronic Daily Migraines.
Most days were 6-7/10 pain. Those days that were 10/10 I perfected the art of lying down and breathing in such a way that I barely moved. Noise / light were never an issue, the pain got worse when I moved.
Then I got a daith piercing.
I had read that a daith could help.
I got the daith ~14 years ago and I have not had any sort of headache since. Both my daughters who had migraines got a daith and they too have no headaches.
I get the sample size is not useful, but if you have migraines, go into your local proper piercing studio and ask for a daith - they will almost certainly reply "On which side of your head is the pain?"
If this is because of the piercing doig some vagus nerve stimulation, do you think a simple, small clip or something placed in the right position could help as well?
Suffering from the occasional migraine myself (3-4x year) it seems a bit too drastic for myself... but my wife has very frequent migraines, anything that could possibly help is worth investigating
I've heard of this piercing so many times and always wrote it off as some mass hypnosis quick fix that would change nothing. Your comment made me reopen that box I closed years ago. I'm very curious now.
Did you get the piercing on your left or right ear?
I'm willing to try it! Are you able to wear earbuds with the daith piercing? Airpods Pro are one of my most-used pieces of tech both at work live-streaming classes and at home listening to books and music.
What about wearing a winter hat? I was considering getting one for the exact reasons as you, but I live in a pretty cold area and not being able to wear a hat for 6 months during its healing process is unfortunately a dealbreaker.
I had migraines at least once every two weeks for most of my life. Nothing too out of the ordinary, just that 7/10 dull pain in the center of my head that shut me down for 5 or 6 hours.
I'm very skeptical about supposed instant fixes like this. I didn't expect it to work, but I wanted to start getting ear piercings and I figured I'd give it a shot with something not too flashy. I went with my wife to her piercing appointment and convinced them to pierce my left daith while we were already there.
That was at least seven years ago. I haven't had a migraine since. I keep assuming it's placebo and it'll wear off, but it hasn't.
I have tried vagus nerve stimulation and it worked for about a week and then became mostly ineffective. That is consistent with this study. So, maybe try vagus nerve stimulation first and see if that works long term.
> Research says it's no more effective than a placebo, but hey, if it works, it works.
The paper you cited doesn’t say this, if anything it says the opposite. It found that it reliably works for some amount of time, but the mechanism is unclear.
“In all case studies and the retrospective study, patients reported substantial reductions in pain immediately after daith piercing; however, headache symptoms recurred several weeks to months thereafter. From the perspective of the Chinese and Western auricular systems, no sufficient explanation for the described treatment effect of daith piercing was found.”
A piercing that takes months to heal and has its own potential side effects (infection for one) does not seem worth weeks of relief after which pain returns. The authors of this study therefore do not recommend this piercing for migraines despite the transitory benefits
“current evidence does not support daith piercing for the treatment of migraine, tension-type headaches, or other headache disorders.”
I seem to get migraines from plant fats and stimulants like caffeine.also caffeine withdrawal.Been drinking chaga coffee a few days and feel so much better in the evening
Yes! I’m a 50+ woman diagnosed as a teenager, and daily magnesium changed my life. I rarely get a migraine these days, and I’m glad to hear it’s effective for others.
> Migraine can even drive full-blown visual hallucinations similar to the ‘reflections of the living light’ painted by Hildegard von Bingen, a twelfth-century abbess who was thought to have experienced a condition that is now called migraine with aura.
I don't think the aura effects are usually considered hallucinations?
I get mild migraines sometimes, with hardly noticeable headache, but with aura. In a way, it's pretty cool. You can directly perceive the abnormal brain activity and how it develops in real time. (I get the classic zigzag lines wandering across the field of vision.)
I also have migraine with aura. There are visual effects but also when I am looking into the mirror I can't see half of my face and give this is a wrong perception of reality you might consider it a hallucination?
Same, the fortification aura is really kind of amazing, putting aside the debilitating pain that's quickly approaching. It's really weird to have a part of your vision just "not there" as opposed to being black. It's even stranger when looking at a face or some recognizable object, and half of it disappears into nothingness while the other half still exists. Fun to play with.
the first time i had this, everyone's nose was missing. for ten seconds it was funny and then i hid in a bathroom stall at work, and texted my wife goodbye. i was positive i was about to die. its really stressful to have bodies.
I sometimes but not always get an aura before a migraine.
Which was pretty fun the first time i got an aura, as i was working in a chemistry lab. I described what was happening (loss of vision, flashes of light, rapidly oscillating black and white patterns) to this greybeard lab technician and within 5 minutes the entire lab was evacuated, out of fear of some weird chemical poisoning us all.
I happen to be a man who gets migraines with aura, but I do think they’re more common in women. They started when I was 14.
I get visual issues like tunnel vision and sparklies, but I also get numbness in my face and extremities, confuse my words (right parts of speech, not what I intend to say), and often vomit.
Needless to say, the first one scared the crap out of my mother and I.
I may or may not have a headache when this happens.
Neat, eh? I was talking to a guy who suffered from seizures in college, and apparently his “aura” is very similar, and I've always wondered if there was some connection since my father also suffers from epilepsy.
Migraines and epilepsy have a lot in common, including some symptoms and triggers. Drugs and things that lower seizure threshold also tend to cause migraines. Some epilepsy drugs also act as migraine prophylactics.
> I get visual issues like tunnel vision and sparklies, but I also get numbness in my face and extremities, confuse my words (right parts of speech, not what I intend to say), and often vomit.
I’ve experienced migraines for years, but last year had my first instance that messed with speech. It certainly unsettled the friend I was with at the time.
I'm male and I get visual auras with migraines (not often, only once or twice a year). It's like a small area of old TV static or (as I call them) "dead pixels" in my vision. It's usually centered right in the middle of my vision, so reading becomes impossible but I could do something else.
It usually spreads a little bit before dissipating. They can happen with or before the actual migraine pain.
> “I used to think that disability travels with pain, and it’s only when the pain gets severe that people are impaired. That’s not only false, but we have treatments to do something about it,” says Richard Lipton, a neurologist at the Albert Einstein College of Medicine in New York City.
He's saying that he used to just view the pain of migraines as a disability, but now realizes that there are other components to migraines besides pain that cause disability (such as brain fog, emotional instability, blindness, etc)
Right- even though I was able to figure that bit out on second or third reading, it threw me enough that the second clause didn't truly make sense. Also, the subjects of "That's not only false" and "to do something about it" are _different_. So my train of thought kept derailing.
I think everyone who suffers migraines has their own “relationship” with them.
Myself, I can tell when I am “pre-migraine” and know I have to sit down for a bit lest one develops. They most often come from eating junk food after exercise (I’m looking at you, Fritos). And warming my hands often helps speed the recovery, though I always end up with “tender brain” for 24-48h after.
I’m intrigued by another poster having success with Magnesium L-Threonate and will be placing an order today. Even if I don’t have a migraine, I have a headache 8 days out of 10.
> They most often come from eating junk food after exercise (I’m looking at you, Fritos).
Dehydration causes a good portion of mine, at least of the ones that I can point to a proximate cause of. I wonder if that's what you're experiencing, with the salty food after sweating?
My eyes were opened a few years ago when I was reading my mom’s brain mri report. She had cancer and was undergoing radiation treatment. The MRI noted lesions and said they could be due to cancer/radiation OR MIGRAINES!
Can confirm, I had a brain MRI in my early 20s and had a number of white matter lesions that were supposedly caused by migraines. No other cognitive or neurological issues. But I'm due for another scan soon and hoping they haven't worsened :P
Search Migrainous Infarction. I had one when I was 32 (53 now). It's very rare, but a migraine can cause a stroke (ie. permanent brain damage), because of impaired blood flow. It left me with a permanent scotoma ("black" hole in my fov, visible from both eyes and with both eyes open).
I was scanning the comments to see if anyone needed that information.
If the aura doesn't stop after an hour, better go to the hospital (aura means reduced blood flow). Also NEVER take triptans during an aura.
Might be a question of cause and effect. My neurologist theorized my migraines were triggered by microemboli leaking through a PFO (leak between left and right side of the heart: normally the lungs filter this stuff out)
PFO closed, migraines basically gone.
PFO can lead to stroke too for the same reason, and that's when it's usually closed, after a stroke. Not all migraines are caused by PFO. I went on blood thinners first for a year as a test.
I've thought for a long time now that everyone has a migraine all the time, but migraine sufferers temporarily lack the brain's ability to ignore the ever-present pain.
In other words, the migraine isn't the addition of pain, but the absense of a pain relief mechanism. I have no sources to back this up, other than personal observation.
I got told that it could be indeed the case that my brain continuously has small seizures but only from time to time they break trough and cause the pain and auras which I would then experience. They wanted to measure the brainwaves to figure out if that was the case. That would also somehow fit what OP said, so I guess this is known in the medical world already. Or at least something in that direction.
Only that's not how auras seem to work. The current understanding is that they are caused by cortical spreading depression - a slow travelling wave which depolarizes the brain cells it passes through. These don't just happen randomly in healthy controls.
Well, I think the Auras is my brain failing to filter out visual noise, which then get's into a feedback loop and builds up. And that might be related to other filter functions failing. I think that, becaus4 once in a while, I'm able to suppress the Aura conciously, when it is still very small.
Some auras have a musculo-skeletal origin. For example, some neck issue irritates a nerve or alters the pressure in a blood vessel, which in turn affects the optic nerve.
I have suffered them myself, and they always came in a sequence: arm pain, neck pain, headache and aura. Finally, I'd release tension in my neck and it'd be gone.
My doctor confirmed injuries in cervical discs also seem to be causally linked to auras, but there might be other causes as well.
The pounding pain that corresponds with heartbeat. It makes me think there are nerves that register this all the time but there's some part of the nervous system that filters that signal out.
If you have pounding pain from heartbeat, you should go see a doctor. That is not normal.
One feature of migraines is not just a headache. Some people can feel it coming, called the aura. I feel weird during and after the headache. I frequently get the migraine weird feeling without the headache, so-called silent migraine. Migraines and normal headaches feel different.
I have been a migraineur for decades. Mine are classic aura, with the whole "looking through broken glass" thing for a half hour or so when they happen. This year one of my partner's doctors mentioned positive results from supplementing with Vitamin B-2 and Coenzyme Q10, and it has dramatcially lowered their frequency. Mine are especially bad when the air pressure is seesawing which it does a lot here in the spring and fall, but I would guess I'm down to something like 20% of the previous years numbers.
I think we have similar symptoms, but I have no headache, just the "broken glass" that passes over my vision. Usually takes about 15 mins to half an hour or so to pass.
This is the best visual representation that I have found of it ove the years:
I suppose an even better one would be "looking through broken glass that keeps fucking moving around".
The weirdest thing I discovered was that, back when I juggled professionally, I couldn't read at all during that aura but could still juggle, even hard things like 5+ balls. Strangely it did not screw up peripheral vision.
Worst time was when it came on before a music school performance. Not a hope in hell of keeping track of which line the little circles were on...
I used to get typical migraines, starting around junior year of high school. One every 6-18 months, usually, for years. Visual auras for twenty or thirty minutes, then a few hours of bad headache.
Over the years the frequency has swung toward the longer end of that, and now the last three times I haven’t gotten the headache part at all, but other weird symptoms. One time, bad tunnel vision for a while and then feeling like I had to go to sleep immediately. Another, just a weird disconnected/disembodied feeling for a couple hours. The most recent, I got fairly bad aphasia for ten or fifteen minutes, which is the fist time anything like that’s happened to me. Not just trouble thinking of words, though that too, but knowing the word I wanted to say and having something else come out instead, no matter how many times I tried.
I haven’t tried anything but excedrine migraine. If I still got a couple a year and they still gave me like 6 hours of killer headaches, I’d probably look into something like that, but the frequency’s been closer to every other year than twice a year and I don’t get much pain with them now, so I’ve not bothered.
Maybe I should, though, given the other comments in this thread about them causing brain lesions…
The one aspect this misses that's so hard to communicate is the lack of visual processing inside the sort of curled aura "area". When I was getting them often as a kid, I would basically become illiterate over the course of 15minutes, because anything in that shimmering area was not parseable. I could SEE the shape of a letter, but I couldn't read the word. That shimmering area grows and grows till it's covering all of your vision, but near the start you can still read out of one side.
It was by far, the part of migraines I hated the most as a kid because it took intense pain that people assume you're overblowing, and prefaced it with 30-45 minutes of people thinking I was an idiot/doing some weird awkward joke. (Or having a stroke! The dread of not being able to speak correctly, not being able to read, a slow pain in my temple getting stronger and stronger, and now the teacher is calling 911 while the class starts screaming.)
Got this exact thing once last year a few months after recovering from a very bizarre and severe viral infection that ended with about 2 weeks of bells balsy.
It was bizarre. No headache at all. And unlike other posters here, I could still read easily.
Ah yes, that visual is perfect. I showed something similar to a friend a long time ago and they said 'that's migraine? i have that every few weeks but not much else so never thought much of it; i thought migraines meant headaches'.
Just want to second this. I was getting migraines every 2 weeks (visual auras, thumping headache for 3-6 hours etc) mainly triggered by stress & lack of sleep as far as I could tell. Started taking Vitamin B and I haven't had a migraine since - for over a year).
There is research to back this up as well:
- https://pubmed.ncbi.nlm.nih.gov/33779525/
- Conclusion: Vitamin B2 400 mg/day significantly reduced the duration, frequency, and pain score of migraine attacks.
There seems to be a link between migraines and Mithocondrial Disease. If frequency/intensity of migraines diminishes with Vitamin B and Q10, it may be worth investigating. Especially if you have muscular fatigue or exhaustion.
I've tried not CoQ10 and high doses of B2, without any impact on my aura frequency or duration. Migraine auras are such a pesky thing which medical science clearly doesn't understand. The typical migraine drugs like triptans are useless for auras, since the drugs typically take longer to kick in that the duration of the aura.
Glad to hear the supplements are working. And you get to impress peope with the colour of your pee!
First, I know different people have different triggers from me. I used to have migraines every few days to every few months from age 13 to 23. These would incapacitate me. I would get the aura and be almost blind for an hour, then throw up a couple times, and have a bad headache for 2-4 hours, then I could function again but still felt crummy for the next 24 hours. I noticed that pickles were a trigger, and I thought "pickles have a lot of sodium". So, out of desperation as something to try, I read the labels of everything I was eating and cut out everything that had more than a little sodium: frozen pizza, frozen dinners, deli meats, etc. At the time I was having migraines every few days, and then I didn't have another migraine for years. I was so glad they stopped. I now doubt it was the sodium. In cutting out sodium, I happen to cut out processed foods, which includes lots of suspicious ingredients. I suspect Tyramine was the main culprit. There's a diet called The Headache Diet that is focused on minimizing Tyramine. Guess what else pickles have a lot of? For last last 30 years, here are all the things that have caused my migraines: Lithium Carbonate (Orotate is OK), Pickled Herring (Tyramine), Soy Sauce (Tyramine), Hyaluronic Acid (synthetic, Mobilee is OK), Tianeptine, Sulbutiamine, and a strobe light. Every migraine I have had in the last 30 years can be explained by those - only 8-12 migraines total. I still precisely control my sodium and eat no processed foods.
I too had nausea, auras with migraines when I was a teen. I think I outgrew them. That or it was my girlfriend at the time (I was about 20) that gave would snap my neck — like some kind of self-taught chiropractor.
Any other migraineurs share what I call "Silver Bullet Fatigue" at trying new treatments? I've been at this for six decades with no magic solution for my own migraine problems, and I've lost count of all the neurological investigations, meds, scans, treatments, and helpful or sometimes utterly silly suggestions that have come up short over the years. Some have come close but had undesireable side effects, others made me very ill in their own right. At this point I just don't have much desire to go through the treatment wringer again. Am I alone in this sort of fatigue?
Last spring, I broke my ankle severely (trimalleolar fracture with dislocation). I had a very long string of complications following that: fracture blisters, nerve block rebound pain, opioid withdrawal, atrophy, infections, nerve pain, bone fragments, etc. It seems that right when things seem to start going well, a new complication arises.
I know it's not rational, but it's really hard to not fall into a mindset of "Why even try to fix this one, another one's going to happen anyway?" And once I start letting myself believe that, I just feel even worse.
Even before this happened, I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression. This whole experience has reinforced it.
> I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression
I like to think of that quality as being a person with a willing desire to be a player on the team trying to solve the health problem, in that I am generally a sunshine-y person and try to see the best in things. To me, that's the key to avoiding despair in facing my chronic, acute migraines. Having said that, it is fatiguing to face batteries of tests once again. If the science is very compelling, I'll consider it.
Hey. I am not a migraine guy but a paroxysmal, full-body, painful hives type of guy. Like some migraine people, my symptoms eventually stopped happening after trying all sorts of things for years, and I can't say precisely what the "cure" really was. Or if I am not just in a 7-year-long remission.
Anyway, I experienced this fatigue you speak of. I am not sure this will help you since your fatigue appears to come from blood tests/medical treatments, but hopefully it helps somebody. What helped was when the suggestion was something I could do that was healthier/cheaper/more beneficial than what I was currently doing, I would frame it as, "This might not fix my debilitating problem, but it will improve my life in some way. So, worst case scenario, I'm in the green."
Examples (I am not suggesting these as migraine silver bullets, but I am trying to clarify what I mean):
- Someone in this thread mentioned cutting out xanthan gum and other thickening agents has helped. Will that cure you? Probably not. Is it a healthy lifestyle change? Probably. Why not try?
- I cut out processed food, which helped me realize that I was eating 1-3 frozen Trader Joe's meals per day.
- I got an air quality monitor that made me realize the brain fog I felt at night was due to worsening air quality in my home.
- I switched to unscented soap and laundry detergent, which was cheaper. (Artificial laundry scent now smells sickly and synthetic to me, which may be a downside.)
- I set up reminders for change-by dates for furnace/car filters, vacuuming, dusting etc.
I don't know if any of this is why I don't experience symptoms anymore, but I don't regret any of it, and have long-term positive effects regardless.
Lastly, after several creams & allergy pills, I stopped getting my hopes up that anything would fix me. Expectation management is essential for avoiding fatigue.
Hope this helps you or somebody else. I am sorry you have suffered for so long.
No.
I read a migraine book which boiled down to once you figure it out, your migraines change. Meds stop working, life changes, stress, etc. I routinely get month long migraines over the years. I’ve had all the scans, Mayo Clinic visits, eyes checked, and follow-ups.
They say it’s helpful to log things or journal but I don’t feel like it much with a migraine and blurred/double vision.
I'm like this with back pain. I just reminisced the other day about when I was a teen I could straddle on a brick wall and pull with my arms to twist my torso around my hips and just pop the f out of my lower back and hips, then I could stretch and move normally again.
This worked for like 2 months. I've tried tiger balm, tens, chiro, heat, cold, exercise, every medicine.
I have theracane, davinci back tool, and a long suffering wife who will stand on my back to put enough pressure on the muscles to help.
Tumeric, CBD. 7-hydroxymatiglynine nullifies the pain but I puke 60% of the time I take it, about 4 hours later.
For what it’s worth, I got a sleep study and a CPAP machine due to borderline hypertension, coincidentally also stopped taking my migraine prevention medication, and I haven’t had a single migraine since, a year and a few months later. Maybe like half of one, one time. Blood pressure is also back to normal.
In my case CGRP agonists made me feel absolutely horrible and actually gave me long-lasting gut trouble that I am still struggling with.
I got my first migraine in my early teens. I was over at a friend's house and we were playing in the basement on a summer day, then went outside where the sun reflected off a window into my eyes.
It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering pattern faded the blistering pain would start and last for about 5 hours, with lingering light sensitivity until the next day.
I later realized that something about a rapid change in brightness (from dark to bright) would trigger them for me.
Another time was triggered by a high school shop teacher lighting a welding torch.
The best way to relieve the pain I found was to turn out all the lights and dunk my head in cold water, which I discovered eventually in desperation for relief.
I would only get them every few months, but when I did I would be pretty useless for most of the day. I stopped getting them in my early 20s. No idea why, but I am grateful. They sucked!
I sometimes get shimmering patterns which I think they call visual migraine or https://en.wikipedia.org/wiki/Scintillating_scotoma but thankfully mine don't go on to migraine proper. They often seem set of by a bright light outside the center of vision like I'm reading a book with sunlight coming in from 45 degrees.
I've had fewer than a dozen episodes starting last year. Luckily, like you, I have scintillating scotoma without headache. I haven't noticed a trigger--they're just spontaneous. A couple of years before, I had a couple of episodes of binocular diplopia (https://www.yalemedicine.org/conditions/double-vision). Dunno if they're related.
I've mentioned this before in previous HN threads about scintillating scotomas, but it's worth repeating: in my case, the issue was entirely due to excessive caffeine consumption. When I got them frequently I was sometimes consuming upwards of 450mg/day, when I cut intake way down they disappeared entirely, and when I occasionally fall off the wagon and have way too much that's when they come back.
Exactly the same trigger here. I had one just the other day at the pub. Sitting outside, under shade, but to my left was a bright spot. It’s weird how I can sense it arriving ... something about the quality of my vision subtly changes, and there it is.
Fortunately for me it isn’t accompanied by a headache. It’s just really unsettling. At least now I’ve learned to recognise them and I just try to chill out while it does its thing.
(FWIW, also a tremendous consumer of caffeine here. But this was at 17:00, a good 5 hours after my last cup.)
For whatever it’s worth, too much caffeine and dehydration does this to me. Chugging about 48 oz of water and throwing on a face mask for 30-60 minutes usually clears it up. If I do “nothing” it takes significantly longer to clear up.
I get the same, and all of these tend to be a trigger for me too -- too much caffeine, dehydration, and rapid light intensity change (like looking outside and then back to my computer screen).
In addition to chugging water and staying in the dark with a face mask, I've found that taking raw honey right as it's coming on makes it go away rapidly.
My long term prevention is taking magnesium daily and LSD once or so a year. Once I started doing that the frequency went to almost zero, and whenever I don't do that they start up again.
In my case it's the combination of too much caffeine, dehydration, and intense exercise where my HR maxes out. 2/3 risk factors will typically not be enough to trigger one for me. HIIT workouts and soccer have done it in the past.
The aura (with scintillating scotoma) starts coming on usually an hour or so after the exercise is done, and I know I've got about 15-20 minutes before the actual migraine hits. Got prescribed Sumatriptan and it maybe reduced the intensity by about 25%. I'll have to try the water chugging, maybe with rehydration salts to speed up absorption.
I've been getting scintillating scotoma for over 50 years. They've changed character over the years from widespread fortifications to virtually no scintillation at all but always progress from a bright spot to a large blind spot to an expanding toroidal blind region with vision restored at the origin point until they pass out of my field of vision. They used to lead to headaches and sometimes speech deficits or other somatic experiences (like sizzling on my tongue and lips) but now I just get mild abdominal discomfort. With a couple of notable exceptions it lasts about an hour.
I have learned that while they're inconvenient, they're harmless and I just generally continue with whatever I was doing when they began. I have never been able to discern a trigger: they appear to come on completely randomly.
Exact same story here, including the occasional speech problem. Well, I've only been getting them for 30 years. It's always reassuring to hear this from people who have been getting them for longer than me. They used to freak me out when I was younger. Still worry me a bit when I get multiple in a single week.
I used to get these two or three times a year, but then I had heart surgery last summer and had five in the first day after I came round from the anesthetic, and two or three every day for weeks after that. They've now settled down to one every few days. Annoying, but they go away fairly quickly and just leave me feeling a bit tired and headachy for a few hours.
Yep, I realized mine were caused by looking out the window while I brushed my teeth in the morning. One day it was really bright outside and really dark inside and the migraine started almost immediately. More than a year and I keep the blinds drawn while I'm in the bathroom in the morning and not a single migraine!
This is interesting. I frequently had them triggered by riding BART in the late afternoons in the winter, sun beating in through the dirty windows. Going through the tube (dark) and emerging in Oakland (raised track, clear view of the sky on both sides) had a double-digit % chance of giving me a migraine if my eyes were open at one point.
I can get them triggered by riding in a car in similar conditions, too, especially if the windows aren't squeaky clean. I frequently wonder why that is, something about the remaining spectrum of visible light when the windows are dirty?
Reminds me of wearing non-prescription sunglasses despite having myopia. It feels like the blurring of the world is due to the glasses, even though they're actually only blocking some of the light rather than distorting it.
I'm glad you shared this - I also have light triggered migraines and I didn't realize there were so many others who also did. :) huh! I take ibuprofen and two shots of espresso and lock myself in a dark room and do deep breathing/relaxation -- the latter seems to have been surprisingly helpful for me in the last few years, and makes me wonder if my anxiety response to having the initial aura was actually contributing to worsening the migraine.
My favorite episode was when I went to my doctor, said "yeah, it's good, I haven't had a migraine for like 6 months", and as part of the physical he shined a pen light in my eyes ... and I went home and developed a migraine. sigh.
(Fortunately, some time in my 20s, I stopped getting the headache part for the most part and now just have aura -- which renders me partly unable to see, alas -- and feeling pretty off for a while.)
Have you tried cold brew? It has about 10x the caffeine of an espresso shot. Espresso has the least amount of a caffeine of coffee drinks. Cold water and long exposure extracts more caffeine than hot water and short exposure. Source: I’m a coffee nerd.
The difference isn't typically that vast. At usual dilution levels, drinking a 16oz cold brew would be slight caffeine gain on the double-shot. Heat does extract caffeine better that cold, which is why the shot is prepared in ≈25 seconds and the cold brew concentrate takes 12-20 hours.
Also, I don't keep cold brew on hand during the winter, but I can whip up a double espresso in under a minute and get ~150mg of caffeine, which is basically equal to my daily intake. And I can _consume_ it faster than trying to chug a 16oz cup of cold brew. Gulp, done. :) And yummy.
I could take the excedrin-style things but coffee is pretty easy. And the goal isn't "max caffeine", the goal is 150-250mg.
The funny thing is that I really have no idea if this caffeine+ibuprofen routine is actually effective. One of my doctors in grad school suggested it, as someone who also suffered aura-only migraines. He said it worked for him, and I figured that either it was sometimes effective, or I'd have some placebo action working for me, so I just adopted it. :) I'm OK with placebo if it's working. The caffeine is based on an older theory of vasoconstriction that seems to not be aligned with the modern thinking on migraines, but, eh, mine are pretty tame compared to what some people get so I haven't felt the need to work too hard to optimize this.
There are OTC meds you can buy that are marketed as "migraine relief" that are just acetaminophen + caffeine; my wife takes that and it usually works to relieve the symptoms (if she can catch it early enough).
Of course, then you take away the espresso - there's always a trade-off :)
Same! My understanding of migraines is that it's something to do with blood pressure in your head. My hypothesis is that the visual disturbances are your blood vessels dilating and pressing against your retina. Then I think it can cause kind of a runaway feedback loop of some sort that causes the blood pressure to increase throughout your head, causing pain.
Thinking about it now, I wonder if the light trigger could be the bright light causing minor damage to your retina, potentially triggering an inflammation/repair response. The fact that it happens when going from dark to light suddenly, also makes sense, since your pupil is at its most dilated when in the dark, meaning the most of your retina is exposed/vulnerable. That might also explain why it always starts in the periphery; because the edges of your retina are likely less often exposed to light and potentially more delicate -- but would be exposed if you see bright lights while your pupils are fully dilated.
For me, I've found it's also closely related to irregular food or sleep. And I find eating something with sugar or drinking some water can reduce the likelihood of the visual disturbances becoming a full-on migraine. My hypothesis is that these things alter your blood chemistry/physics enough to interfere with the runaway feedback loop that results in increasing blood pressure. I imagine dunking your head in cold water likewise works because it breaks the runaway process.
I also discovered the dive / ice water reflex sometimes helped my migraine. The reason I tested it is because caffeine supposedly releases some chemicals related to the same chemicals that are released when you vomit. Since my migraines always ceased after vomiting, I used these other methods to induce the same chemical response in the brain.
I now keep Excedrin migraine on hand (has caffeine). However, my migraines completely ceased after I stopped using nasal steroid spray and started with an allergy nasal spray.
I underwent allergy treatment that stopped working, so I decided to try steroid medication. After about four days, I began experiencing unusual migraines every day. I had migraines before, but they always came with a headache. However, with the steroids, I started getting just very strange optic auras. Everything began to sparkle out of nowhere, becoming more intense until I had to close my eyes. The symptoms stopped once I discontinued the steroid treatment.
I started having migraines at 8 years of age, several a week. This persisted all through my life till 42 years later, I had a blood pressure emergency where I ended up in ER with 190/100 blood pressure. Thankfully, it never repeated and was never diagnosed but as a consequence I was put on Olmesartan, a blood pressure medication that relaxes the blood vessels. Eventually, the dose was reduced to the lowest, 5mg, once a day, to which I added 240mg magnesium glycinate, which they sell in Costco. I have been mostly migraine free since for several years and ones I do get are mild compared to before.
My cardiologist, who prescribed the blood pressure medication, is mystified saying that while beta blockers are a migraine prevention medication, olmesartan isn't a beta blocker and maybe it was just my (mild) hypertension which needed to be treated. I doubt that I had hypertension when I was 8 but I'm just thankful that decades of pain have come to an end.
Hmm, I was prescribed Verapamil (calcium channel blocker, also a blood pressure medication), and they helped reduce the severity of my migraines with aura for a while. I eventually went off it, and haven't had near as many since. Early twenties was so awful for those migraines.
Did you find Verapamil had any mood altering or cognitive properties for you? I take it for migraines. I think it makes me a little more emotionally stable but a tiny bit slower cognitively, especially in the mornings. It's a good trade off, especially in light of how it basically stopped my migraines, but it's one I have perceived.
I read a book a while ago. Unfortunately, I don't remember the name (maybe AI can find it), but the premise was based on a metaphor: there are multiple hot air balloons that, together, affect the chance/severity of a migraine. Something like food, sleep, stress, hydration, and one more. One of these "balloons" filling up may be enough to trigger a migraine, while all of them partially filling up can also trigger a migraine.
Sorry for the rough recall, but the point is that there may not be a silver bullet solution simply because it's not one thing contributing all of the time. I can trigger on all four of the ones I listed. I've had migraines for a week straight now because I recently developed tinnitus and am struggling to sleep. However, I had a migraine the week before because I inadvertently consumed red dye, which triggered massive inflammation in my body.
So, for me, it's all about managing multiple things enough to not get above the threshold.
A metaphor I heard once, second hand from a neurologist, was that of making a stress stew. You add in the elements slowly over time into the pot -- barometric pressure, painful perfumes, an odd sleeping position, some traffic, marital issues, whatever -- and then at some ill-defined point it crosses a threshold into being a proper stress stew (ie a migraine).
long-time listener, first-time caller on HN.
I've had migraines since I was a teen. Full blackout vision, then debilitating headache for 48 hours.
About 18months ago I cut out food containing thickening agents (Xantham gum aka 415, et al). Have only had a migraine since then when I've had food containing these (which seems to be an increasing number of foods).
I don't suggest it's a cure all, but worth trying for others out there. I've sat in job interviews, my wedding, kids' events dreading having one occur.
I have been diagnosed with vestibular migraines. No pain, just dizziness and brain fog and vision issues (feels like my eyes don’t point in the same direction). I also have a doctor that says I have symptoms of mold exposure (lots of correlative testing and also house testing and remediation). I have also been diagnosed with temporal lobe epilepsy by my neurologist, but my mold doctor says that is consistent with mold exposure. I also have a vestibular degradation, one side of my balance center is damaged. I think all of it is related and linked by inflammation. I do think that mold is part of the story, but definitely not all of it. Anti seizure medication helps a lot. Ubrelvy (a gepants) also helps a lot. Getting the right kind of sleep and exercise and staying hydrated also all help. I am nearly 50 and this a new thing that has happened in the last 2-3 years. Was not fun to go through this on the tail end of running a startup. The brain fog was debilitating. I am now 80% better with meds (and a shit ton of supplements) but still on the journey to figure out how to get back to normal and off all the meds. I do think it is inflammation related but it could be one of a zillion things, or a combination of many.
Yes. A lot of it. It was maybe 10% effective at best.
The way one ENT described it, I have 40% degradation on one side. If it’s constant, your brain adjusts and you are essentially ok. If something happens to vary that then your brain can’t adjust. My theory is that you add inflammation or migraines or epilepsy or all of it and the brain can’t compensate.
Wife has been struggling with vestibular migraines for about 20 years. It really came to a head about 5 years ago, and we spent the following three years seeing specialist after specialist and trying around a dozen different medications. During this time she had daily flare-ups and missed a lot of work and spent most days in bed or on the couch.
What ended up working in the end? We finally got into Mayo, and they suggested an SSRI (at a fairly high dose). She also figured out that she has a few food triggers (yogurt and freshly baked bread are 2 bad ones). She also discovered she has double vision, and now wears prism glasses. We think the combination of double vision and whatever brain chemistry imbalance she had was "overloading" her vision and vestibular systems, and she would basically just shut down. Treating both of those seems to have (mostly) alleviated things for her.
I completely understand what you've gone though and how frustrating it is, especially given the very vague criteria for diagnosing and treating vestibular migraine.
I've suffered from migraines all my life. It worsened as I've gotten older. One day long attacks turned into three day long attacks. Then turned into five day long attacks. I've taken various preventatives and abortives over the years to varying success. It runs in my family so I never thought to see a neurologist for them. A couple years ago I had a bad string of them and my medicine wasn't really touching it, so I finally decided to see a headache specialist. The doctor very quickly got me started one of these anti-CGRP medications.
Almost immediately, I dropped to 0-1 attacks a month, and when they do happen they are both less painful and my other medicine knocks them out fast.
My mom had migraine headaches pretty much all her life. For many years she had been seeing the same doctor for her headaches.
Then she got old enough that she was on Medicaid, and she had to stop seeing that doctor because he didn’t accept Medicaid. So she found a different doctor. Different doctor prescribed a different treatment and lo and behold, her headaches pretty much went away after that.
My paternal grandmother was a migraineur, but back in the 1930s she was treated as a "hysterical" woman and given opiates. Her battles could not be overcome and she lived a short life. Thankfully the treatments have evolved.
Yep, I was exactly the same. It took me decades to get diagnosed, then several more years before I saw a neurologist. Now I'm on a CGRP blocker, I hardly get them at all.
In addition, my anxiety/depression is almost gone and my ADHD is about 50% improved (I'm not able to tolerate anti-ADHD meds). I love Nurtec. Expensive, but worth every penny. If my insurance didn't cover it, I'd pay out of pocket without a second thought. It's that good.
I had them in my 20s on a weekly basis but since I could stave them off with massive water intake I thought they were something else. I didn't get optical symptoms, it was just a really bad headache, nausea and chills that felt like a bad hangover. It wasn't until my 40s when I started getting optical migraines (which are scary as hell since they mimic a stroke) that I went to a dr and he diagnosed me. Apparently it's common for migraine sufferers to transition to optical migraines when they're older.
I've been on Qulipta (a CGRP drug) daily for about a year now. It started working pretty much immediately, and I cannot think of a single side-effect in use, other than that you will have a withdrawal period pretty much immediately if you miss a dose.
Before that I've used Rizatriptan to treat rather than prevent (works well, but can cause brain fog, mood swings and GI issues). In order to get approval for the CGRP I had to try lower-cost drugs like Verapamil (a calcium channel blocker) which had no effects at all, positive or negative, and Topiramate, which is the single worst medication I've ever used. Compared to all of those, the CGRP is a miracle and has been life-changing.
There a some small side-effects with Quilipta. I was a bit low energy for a couple a weeks until my body got used to it. Also, it is a mild appetite suppressant. I seem to be able to miss doses of a day or two just fine though. Nurtec also works well for me as an accute migrate treatment.
I'm on Emgality, and haven't noticed any side effects at all.
Honestly the worst part of it has been getting special approval from insurance; sometimes they don't cover much of it but right now the manufacturer provides a savings card that brings it down to $35/month.
Same pattern for me. About a year ago migraines escalated to a few times a week. Debilitating. I started searching for a solution and discovered this book [1]. It basically recommends a low carb or even a keto diet. After three weeks migrants reduced to once every three to four months, and mostly because I'm cheating on the diet. Life changing.
Low carb/keto also had dramatic effects on frequency of migraines/headaches for myself. CPAP however, has been even more life changing in that regard for myself. From headaches 4-7 days of the week to fewer than 1 per week.
Some confounding variables on diet/weight loss/sleep quality. But I don't care, things are better and I'm happier for it.
This is what helped me as well, plus probiotics to turn my gut flora around.
I have a nagging feeling that "migraine" is actually not an actual single disease. It's rather a syndrome, i.e. a set of symptoms people have for various different reasons.
Through keto and the probiotics experimenting, I've learned much more about how the whole gut thing "works" (very much not an exact science!) for myself and that doctors in general are clueless about it themselves. Or ignorant. Or don't want to deal with anything they can't just diagnose with a 5 minute talk.
My migraines are food related. Without the probiotics I could somewhat control when I might get one by not slipping and eating something tasty but bad for me (like lasagna two days in a row - tomatoes bad). Add to this the fact that food in many cases takes two days to go through your system, eating a food and getting symptoms is delayed. Evacuating the food from your system would also cure the acute migraine headaches and other symptoms. With the right probiotics I can now eat all the lasagna I want and throw in blue cheese and red wine as well!
> When May started researching migraine in the 1990s, the leading hypotheses were that migraine was either a psychological issue or a vascular headache disorder, with throbbing pain caused by dilation of blood vessels. The psychological associations came with stigma, May says.
[...]
A lot changed in the 1990s, when May and others began conducting brain scans of people with migraine.
Sure, who the hell is this guy, and his discovery of the cortical spreading depression phenomenon:
Hello, fellow migraine sufferers. I sincerely want you to read the fantastic essay "In Bed" by Joan Didion. It is a fantastic reflection on what it is like to have migraines and it makes me cry every time I read it because it makes me feel seen and understood.
"For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary."
Read it; it's a google search away. You'll thank me.
The only medicine I’ve used that has all but completely eliminated my migraines during usage (Aimovig).
Unfortunately, to get these — you have to provide an arm and a leg to insurance, even when a neurologist is vouching for you.
Nothing makes me consider violence more than meeting with a highly educated, vetted, practitioner of medicine — having a conclusive conversation about a treatment plan, and then having my fucking insurance say “ope, sorry — you have to prove you need this medicine by trying anti-depressants (which might incidentally help, but not designed for migraines), or this other thing which also may incidentally help (but not designed for migraines)”
Get this — I got a prescription for Aimovig, all positive results (for a year and a half) and my insurance is still getting in the way of fulfilling the script (each month). If I miss the dose, I get a massive rebound migraine — and I’ve missed several doses because my insurance wants to send another letter to my neuro “hey are you claiming this is still worth it?”
If you've suffered, seek a current expert (e.g., a neurologist migraine specialist who has recently completed training).
The newer CGRP inhibitors have been highly effective, but that also has made some specialists grow stale in their assessment skills.
Pain is emotionally debilitating, but sorting out complex chronic migraines takes persistence, patience, and an excellent diagnostician. It can take a few long-term trials of treatment and environmental/behavior changes. Be a good patient: bring accurate contemporaneous journals and openness to new suggestions, and stick with an agreed regime pending re-evaluation. Above all, don't just try to power through or mask the pain.
I can get migraines, but they’re “silent migraines” which means there’s little or no pain aspect. Thankfully it was pretty straightforward to root out the trigger - caffeine. I still love coffee, but I’m decaf only now. I drink Equator Coffee’s natural process decafs.
245 comments
[ 6.1 ms ] story [ 283 ms ] threadIn my early 30's, after blood tests, food elimination, x-rays and finally an MRI I was told that I had Chronic Daily Migraines.
Most days were 6-7/10 pain. Those days that were 10/10 I perfected the art of lying down and breathing in such a way that I barely moved. Noise / light were never an issue, the pain got worse when I moved.
Then I got a daith piercing.
I had read that a daith could help.
I got the daith ~14 years ago and I have not had any sort of headache since. Both my daughters who had migraines got a daith and they too have no headaches.
I get the sample size is not useful, but if you have migraines, go into your local proper piercing studio and ask for a daith - they will almost certainly reply "On which side of your head is the pain?"
It's worth trying but the positioning would be tricky.
All I know is as I have posted - the daith piercing stopped the pain.
Suffering from the occasional migraine myself (3-4x year) it seems a bit too drastic for myself... but my wife has very frequent migraines, anything that could possibly help is worth investigating
Couple of deliveries in and I got chatting to the guy bringing the food. He mentioned he had headaches constantly. I told him about the daith.
Days later he messaged me - he'd got a daith after we talked and today, for the first time in 10+ years he woke in no pain, no need to take codeine.
Just go to a proper piercing place, not some "Claire's" type place.
Did you get the piercing on your left or right ear?
I have worn various and my current are Airpods 2 Pro.
The daith is discreet, does not get in the way of anything.
I had migraines at least once every two weeks for most of my life. Nothing too out of the ordinary, just that 7/10 dull pain in the center of my head that shut me down for 5 or 6 hours.
I'm very skeptical about supposed instant fixes like this. I didn't expect it to work, but I wanted to start getting ear piercings and I figured I'd give it a shot with something not too flashy. I went with my wife to her piercing appointment and convinced them to pierce my left daith while we were already there.
That was at least seven years ago. I haven't had a migraine since. I keep assuming it's placebo and it'll wear off, but it hasn't.
https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/...
The paper you cited doesn’t say this, if anything it says the opposite. It found that it reliably works for some amount of time, but the mechanism is unclear.
“In all case studies and the retrospective study, patients reported substantial reductions in pain immediately after daith piercing; however, headache symptoms recurred several weeks to months thereafter. From the perspective of the Chinese and Western auricular systems, no sufficient explanation for the described treatment effect of daith piercing was found.”
“current evidence does not support daith piercing for the treatment of migraine, tension-type headaches, or other headache disorders.”
I don't think the aura effects are usually considered hallucinations?
I get mild migraines sometimes, with hardly noticeable headache, but with aura. In a way, it's pretty cool. You can directly perceive the abnormal brain activity and how it develops in real time. (I get the classic zigzag lines wandering across the field of vision.)
The usage in relation to AI is a reference to the medical term, not the other way around.
anecdotally of course too, but is it more common for women? I've only ever known 3-4 people that got these kinds of migraines and they were all women.
Which was pretty fun the first time i got an aura, as i was working in a chemistry lab. I described what was happening (loss of vision, flashes of light, rapidly oscillating black and white patterns) to this greybeard lab technician and within 5 minutes the entire lab was evacuated, out of fear of some weird chemical poisoning us all.
I get visual issues like tunnel vision and sparklies, but I also get numbness in my face and extremities, confuse my words (right parts of speech, not what I intend to say), and often vomit.
Needless to say, the first one scared the crap out of my mother and I.
I may or may not have a headache when this happens.
Neat, eh? I was talking to a guy who suffered from seizures in college, and apparently his “aura” is very similar, and I've always wondered if there was some connection since my father also suffers from epilepsy.
I’ve experienced migraines for years, but last year had my first instance that messed with speech. It certainly unsettled the friend I was with at the time.
It usually spreads a little bit before dissipating. They can happen with or before the actual migraine pain.
Am I the only one unable to grok this statement?
And this is for a native english speaker!
Myself, I can tell when I am “pre-migraine” and know I have to sit down for a bit lest one develops. They most often come from eating junk food after exercise (I’m looking at you, Fritos). And warming my hands often helps speed the recovery, though I always end up with “tender brain” for 24-48h after.
I’m intrigued by another poster having success with Magnesium L-Threonate and will be placing an order today. Even if I don’t have a migraine, I have a headache 8 days out of 10.
Dehydration causes a good portion of mine, at least of the ones that I can point to a proximate cause of. I wonder if that's what you're experiencing, with the salty food after sweating?
Holy moly! Migraines can cause brain damage!
"Research suggests that the answer is yes. Migraines can cause lesions, which are areas of damage to the brain." https://www.webmd.com/migraines-headaches/migraine-brain-les...
I was scanning the comments to see if anyone needed that information.
If the aura doesn't stop after an hour, better go to the hospital (aura means reduced blood flow). Also NEVER take triptans during an aura.
PFO closed, migraines basically gone.
PFO can lead to stroke too for the same reason, and that's when it's usually closed, after a stroke. Not all migraines are caused by PFO. I went on blood thinners first for a year as a test.
Here's the long story version: https://news.ycombinator.com/item?id=40895116
So if you get the chance, take an brain MRI. You never know what they might find.
In other words, the migraine isn't the addition of pain, but the absense of a pain relief mechanism. I have no sources to back this up, other than personal observation.
https://en.wikipedia.org/wiki/Aura_(symptom)
I have suffered them myself, and they always came in a sequence: arm pain, neck pain, headache and aura. Finally, I'd release tension in my neck and it'd be gone.
My doctor confirmed injuries in cervical discs also seem to be causally linked to auras, but there might be other causes as well.
That's why you get a headache from caffeine withdrawal at least, because the blood flow to your brain increases and you then feel the pounding.
Like right now for me wtf
One feature of migraines is not just a headache. Some people can feel it coming, called the aura. I feel weird during and after the headache. I frequently get the migraine weird feeling without the headache, so-called silent migraine. Migraines and normal headaches feel different.
Definitely worth trying.
I think we have similar symptoms, but I have no headache, just the "broken glass" that passes over my vision. Usually takes about 15 mins to half an hour or so to pass.
This is the best visual representation that I have found of it ove the years:
https://imgur.com/gallery/kY0I0Ht
The representation is really good in my opinion! Gives me flashbacks.
The weirdest thing I discovered was that, back when I juggled professionally, I couldn't read at all during that aura but could still juggle, even hard things like 5+ balls. Strangely it did not screw up peripheral vision.
Worst time was when it came on before a music school performance. Not a hope in hell of keeping track of which line the little circles were on...
Over the years the frequency has swung toward the longer end of that, and now the last three times I haven’t gotten the headache part at all, but other weird symptoms. One time, bad tunnel vision for a while and then feeling like I had to go to sleep immediately. Another, just a weird disconnected/disembodied feeling for a couple hours. The most recent, I got fairly bad aphasia for ten or fifteen minutes, which is the fist time anything like that’s happened to me. Not just trouble thinking of words, though that too, but knowing the word I wanted to say and having something else come out instead, no matter how many times I tried.
Migraines are weird.
Maybe I should, though, given the other comments in this thread about them causing brain lesions…
It was by far, the part of migraines I hated the most as a kid because it took intense pain that people assume you're overblowing, and prefaced it with 30-45 minutes of people thinking I was an idiot/doing some weird awkward joke. (Or having a stroke! The dread of not being able to speak correctly, not being able to read, a slow pain in my temple getting stronger and stronger, and now the teacher is calling 911 while the class starts screaming.)
It was bizarre. No headache at all. And unlike other posters here, I could still read easily.
I think I had Parvo, no idea for sure tho
There is research to back this up as well: - https://pubmed.ncbi.nlm.nih.gov/33779525/ - Conclusion: Vitamin B2 400 mg/day significantly reduced the duration, frequency, and pain score of migraine attacks.
Glad to hear the supplements are working. And you get to impress peope with the colour of your pee!
I know it's not rational, but it's really hard to not fall into a mindset of "Why even try to fix this one, another one's going to happen anyway?" And once I start letting myself believe that, I just feel even worse.
Even before this happened, I have had a pet theory that agency (and perceived agency) is one of the most central components of psychology around anxiety and depression. This whole experience has reinforced it.
https://en.wikipedia.org/wiki/Learned_helplessness
I like to think of that quality as being a person with a willing desire to be a player on the team trying to solve the health problem, in that I am generally a sunshine-y person and try to see the best in things. To me, that's the key to avoiding despair in facing my chronic, acute migraines. Having said that, it is fatiguing to face batteries of tests once again. If the science is very compelling, I'll consider it.
Anyway, I experienced this fatigue you speak of. I am not sure this will help you since your fatigue appears to come from blood tests/medical treatments, but hopefully it helps somebody. What helped was when the suggestion was something I could do that was healthier/cheaper/more beneficial than what I was currently doing, I would frame it as, "This might not fix my debilitating problem, but it will improve my life in some way. So, worst case scenario, I'm in the green."
Examples (I am not suggesting these as migraine silver bullets, but I am trying to clarify what I mean):
- Someone in this thread mentioned cutting out xanthan gum and other thickening agents has helped. Will that cure you? Probably not. Is it a healthy lifestyle change? Probably. Why not try?
- I cut out processed food, which helped me realize that I was eating 1-3 frozen Trader Joe's meals per day. - I got an air quality monitor that made me realize the brain fog I felt at night was due to worsening air quality in my home. - I switched to unscented soap and laundry detergent, which was cheaper. (Artificial laundry scent now smells sickly and synthetic to me, which may be a downside.) - I set up reminders for change-by dates for furnace/car filters, vacuuming, dusting etc.
I don't know if any of this is why I don't experience symptoms anymore, but I don't regret any of it, and have long-term positive effects regardless.
Lastly, after several creams & allergy pills, I stopped getting my hopes up that anything would fix me. Expectation management is essential for avoiding fatigue.
Hope this helps you or somebody else. I am sorry you have suffered for so long.
They say it’s helpful to log things or journal but I don’t feel like it much with a migraine and blurred/double vision.
This worked for like 2 months. I've tried tiger balm, tens, chiro, heat, cold, exercise, every medicine.
I have theracane, davinci back tool, and a long suffering wife who will stand on my back to put enough pressure on the muscles to help.
Tumeric, CBD. 7-hydroxymatiglynine nullifies the pain but I puke 60% of the time I take it, about 4 hours later.
Mostly I just lay very still and whimper.
In my case CGRP agonists made me feel absolutely horrible and actually gave me long-lasting gut trouble that I am still struggling with.
It would start with a shimmering pattern obstructing my vision where the bright light was, which would grow into a c shape and get bigger until it surrounded my vision and then faded away. About 15 min after the shimmering pattern faded the blistering pain would start and last for about 5 hours, with lingering light sensitivity until the next day.
I later realized that something about a rapid change in brightness (from dark to bright) would trigger them for me.
Another time was triggered by a high school shop teacher lighting a welding torch.
The best way to relieve the pain I found was to turn out all the lights and dunk my head in cold water, which I discovered eventually in desperation for relief.
I would only get them every few months, but when I did I would be pretty useless for most of the day. I stopped getting them in my early 20s. No idea why, but I am grateful. They sucked!
Fortunately for me it isn’t accompanied by a headache. It’s just really unsettling. At least now I’ve learned to recognise them and I just try to chill out while it does its thing.
(FWIW, also a tremendous consumer of caffeine here. But this was at 17:00, a good 5 hours after my last cup.)
In addition to chugging water and staying in the dark with a face mask, I've found that taking raw honey right as it's coming on makes it go away rapidly.
My long term prevention is taking magnesium daily and LSD once or so a year. Once I started doing that the frequency went to almost zero, and whenever I don't do that they start up again.
The aura (with scintillating scotoma) starts coming on usually an hour or so after the exercise is done, and I know I've got about 15-20 minutes before the actual migraine hits. Got prescribed Sumatriptan and it maybe reduced the intensity by about 25%. I'll have to try the water chugging, maybe with rehydration salts to speed up absorption.
I have learned that while they're inconvenient, they're harmless and I just generally continue with whatever I was doing when they began. I have never been able to discern a trigger: they appear to come on completely randomly.
I can get them triggered by riding in a car in similar conditions, too, especially if the windows aren't squeaky clean. I frequently wonder why that is, something about the remaining spectrum of visible light when the windows are dirty?
My favorite episode was when I went to my doctor, said "yeah, it's good, I haven't had a migraine for like 6 months", and as part of the physical he shined a pen light in my eyes ... and I went home and developed a migraine. sigh.
(Fortunately, some time in my 20s, I stopped getting the headache part for the most part and now just have aura -- which renders me partly unable to see, alas -- and feeling pretty off for a while.)
Source:10 years experience as a working barista.
I could take the excedrin-style things but coffee is pretty easy. And the goal isn't "max caffeine", the goal is 150-250mg.
The funny thing is that I really have no idea if this caffeine+ibuprofen routine is actually effective. One of my doctors in grad school suggested it, as someone who also suffered aura-only migraines. He said it worked for him, and I figured that either it was sometimes effective, or I'd have some placebo action working for me, so I just adopted it. :) I'm OK with placebo if it's working. The caffeine is based on an older theory of vasoconstriction that seems to not be aligned with the modern thinking on migraines, but, eh, mine are pretty tame compared to what some people get so I haven't felt the need to work too hard to optimize this.
Of course, then you take away the espresso - there's always a trade-off :)
Thinking about it now, I wonder if the light trigger could be the bright light causing minor damage to your retina, potentially triggering an inflammation/repair response. The fact that it happens when going from dark to light suddenly, also makes sense, since your pupil is at its most dilated when in the dark, meaning the most of your retina is exposed/vulnerable. That might also explain why it always starts in the periphery; because the edges of your retina are likely less often exposed to light and potentially more delicate -- but would be exposed if you see bright lights while your pupils are fully dilated.
For me, I've found it's also closely related to irregular food or sleep. And I find eating something with sugar or drinking some water can reduce the likelihood of the visual disturbances becoming a full-on migraine. My hypothesis is that these things alter your blood chemistry/physics enough to interfere with the runaway feedback loop that results in increasing blood pressure. I imagine dunking your head in cold water likewise works because it breaks the runaway process.
But this is all speculation.
I now keep Excedrin migraine on hand (has caffeine). However, my migraines completely ceased after I stopped using nasal steroid spray and started with an allergy nasal spray.
My cardiologist, who prescribed the blood pressure medication, is mystified saying that while beta blockers are a migraine prevention medication, olmesartan isn't a beta blocker and maybe it was just my (mild) hypertension which needed to be treated. I doubt that I had hypertension when I was 8 but I'm just thankful that decades of pain have come to an end.
Sorry for the rough recall, but the point is that there may not be a silver bullet solution simply because it's not one thing contributing all of the time. I can trigger on all four of the ones I listed. I've had migraines for a week straight now because I recently developed tinnitus and am struggling to sleep. However, I had a migraine the week before because I inadvertently consumed red dye, which triggered massive inflammation in my body.
So, for me, it's all about managing multiple things enough to not get above the threshold.
The way one ENT described it, I have 40% degradation on one side. If it’s constant, your brain adjusts and you are essentially ok. If something happens to vary that then your brain can’t adjust. My theory is that you add inflammation or migraines or epilepsy or all of it and the brain can’t compensate.
What ended up working in the end? We finally got into Mayo, and they suggested an SSRI (at a fairly high dose). She also figured out that she has a few food triggers (yogurt and freshly baked bread are 2 bad ones). She also discovered she has double vision, and now wears prism glasses. We think the combination of double vision and whatever brain chemistry imbalance she had was "overloading" her vision and vestibular systems, and she would basically just shut down. Treating both of those seems to have (mostly) alleviated things for her.
I completely understand what you've gone though and how frustrating it is, especially given the very vague criteria for diagnosing and treating vestibular migraine.
Almost immediately, I dropped to 0-1 attacks a month, and when they do happen they are both less painful and my other medicine knocks them out fast.
Literally life changing.
Then she got old enough that she was on Medicaid, and she had to stop seeing that doctor because he didn’t accept Medicaid. So she found a different doctor. Different doctor prescribed a different treatment and lo and behold, her headaches pretty much went away after that.
In addition, my anxiety/depression is almost gone and my ADHD is about 50% improved (I'm not able to tolerate anti-ADHD meds). I love Nurtec. Expensive, but worth every penny. If my insurance didn't cover it, I'd pay out of pocket without a second thought. It's that good.
Before that I've used Rizatriptan to treat rather than prevent (works well, but can cause brain fog, mood swings and GI issues). In order to get approval for the CGRP I had to try lower-cost drugs like Verapamil (a calcium channel blocker) which had no effects at all, positive or negative, and Topiramate, which is the single worst medication I've ever used. Compared to all of those, the CGRP is a miracle and has been life-changing.
Honestly the worst part of it has been getting special approval from insurance; sometimes they don't cover much of it but right now the manufacturer provides a savings card that brings it down to $35/month.
Some confounding variables on diet/weight loss/sleep quality. But I don't care, things are better and I'm happier for it.
I have a nagging feeling that "migraine" is actually not an actual single disease. It's rather a syndrome, i.e. a set of symptoms people have for various different reasons.
Through keto and the probiotics experimenting, I've learned much more about how the whole gut thing "works" (very much not an exact science!) for myself and that doctors in general are clueless about it themselves. Or ignorant. Or don't want to deal with anything they can't just diagnose with a 5 minute talk.
My migraines are food related. Without the probiotics I could somewhat control when I might get one by not slipping and eating something tasty but bad for me (like lasagna two days in a row - tomatoes bad). Add to this the fact that food in many cases takes two days to go through your system, eating a food and getting symptoms is delayed. Evacuating the food from your system would also cure the acute migraine headaches and other symptoms. With the right probiotics I can now eat all the lasagna I want and throw in blue cheese and red wine as well!
Sure, who the hell is this guy, and his discovery of the cortical spreading depression phenomenon:
https://en.wikipedia.org/wiki/Aristides_Le%C3%A3o
"For I had no brain tumor, no eyestrain, no high blood pressure, nothing wrong with me at all: I simply had migraine headaches, and migraine headaches were, as everyone who did not have them knew, imaginary."
Read it; it's a google search away. You'll thank me.
The only medicine I’ve used that has all but completely eliminated my migraines during usage (Aimovig).
Unfortunately, to get these — you have to provide an arm and a leg to insurance, even when a neurologist is vouching for you.
Nothing makes me consider violence more than meeting with a highly educated, vetted, practitioner of medicine — having a conclusive conversation about a treatment plan, and then having my fucking insurance say “ope, sorry — you have to prove you need this medicine by trying anti-depressants (which might incidentally help, but not designed for migraines), or this other thing which also may incidentally help (but not designed for migraines)”
Get this — I got a prescription for Aimovig, all positive results (for a year and a half) and my insurance is still getting in the way of fulfilling the script (each month). If I miss the dose, I get a massive rebound migraine — and I’ve missed several doses because my insurance wants to send another letter to my neuro “hey are you claiming this is still worth it?”
What does one do here? Lawyer up?
The newer CGRP inhibitors have been highly effective, but that also has made some specialists grow stale in their assessment skills.
Pain is emotionally debilitating, but sorting out complex chronic migraines takes persistence, patience, and an excellent diagnostician. It can take a few long-term trials of treatment and environmental/behavior changes. Be a good patient: bring accurate contemporaneous journals and openness to new suggestions, and stick with an agreed regime pending re-evaluation. Above all, don't just try to power through or mask the pain.