Five Things About Migraine I Don’t Understand

By Lisa Robin Benson

2 min read

Migraine is a weird, often confusing disease. Even though I've lived with it since childhood and been an advocate here on Migraine.com since 2014, there are still things about both migraine and how migraine is treated that don't make any sense to me. Such as...

Why can the same thing hurt or help migraine?

Take coffee: For some of us, the sweet caffeinated elixir is a godsend, for others, it’s a thick black poison that will bring on the head throbs. For a lot of us, it can be either or both depending on the day. The article, Caffeine: Trigger or Treatment?, goes into this conundrum in more detail. Another example is sleeping. A nap can stop an attack in its tracks or you can wake up from a peaceful slumber in pain. There's probably an explanation, but it eludes me.

Why can an attack last for days or end suddenly?

I’ve had some attacks drag on like a lingering houseguest, day in, day out, until finally it slowly fades away. But then I’ve had (rare) attacks where all of a sudden the pain just drops away.

I wish I understood how to duplicate this!

Why do families experience attacks so differently?

My mother gets migraine aura with no headache symptoms. I’ve never had aura in my life and my headache symptoms are prominent. I’ve had chronic migraine but my brother has just gotten the occasional headache (which may or may not be migraine).

Why are we all different? Are genetics at play or are environmental factors the cause of the differences—or is it just random?

Why isn't migraine more widely researched?

Migraine is really common — you probably know more than one other person with the condition. It is the third most common disease and the sixth most disabling disease in the world.² It's estimated that in 2016, costs associated with the migraine disease burden (both direct costs like the price of medicine and indirect costs such as missing work) totaled $36 billion.² But yet, according to the chart in this article from the Washington Post, migraine is underfunded compared to other diseases of similar burden such a schizophrenia and epilepsy.¹

Though I'm happy to see new medications and treatments starting to emerge, and hope we will keep trending towards more breakthroughs, it baffles me that the funding has been so weak.

Why don't more doctors understand this common disease?

According to our 2018 Migraine in America Survey, 74% of respondents had to see more than one doctor before receiving the diagnosis of migraine. For the respondents who experienced migraine during childhood, only 15% received a prompt diagnosis. I've heard many community members' stories about experiencing symptoms with significant disability who have either not gotten the proper diagnosis or adequate treatment from their doctor. Considering how common migraine is, I'm completely confounded as to why doctors don't routinely screen for migraine, the way they screen for high cholesterol or diabetes.

It leads me to almost screen for it myself in daily conversation, listening out for signs and symptoms, and encouraging acquaintances to bring it up at their next physical, keeping my fingers crossed that it'll be a productive conversation!

How about you?

Do you have any thoughts about any of the things above? Are there things that confuse you about migraine, too? We'd love to hear from you! Please share in the comments below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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drmaryb Member
Thank you - you ask some good questions. One of my questions is why there is so much variability just within my own migraines. I seem to have different "types" of migraines, e.g. the prodrome for some is that my brain won't stay asleep the night before, while for others I sleep very deeply and my brain won't wake up right. Some have prominent pain, some are virtually silent. Some put me out of commission, others I can work through. Some respond to NSAIDS, others do not. It makes me wonder if they are all the same disease...
1. Lisa Robin Benson Moderator & Contributor
 Hi DrMaryB, I agree, that's a good question! I have a similar experience in the variability of attacks and also in how my attacks have changed over time. I've always assumed that the explanation lies that since it's a disease of the brain and "attacks" are like events, that the event can just go differently every time. Just like if you invited the same people to the same party, you'll still never have the same party twice. Not the funnest party, but that's my non-scientific insight on your question. -Lisa
shannonmckenney Member
I'm on Day 462 of my current migraine. It was started by stress, barometric pressure & coffee I tried to abort it. Luckily, I was with my family who got me to the Hospital bc it came on hard like a stroke. I get weak on my right side. Since then, I've had 10 Occipital Nerve Blocks, 4 Sphenopalatine Ganglion Nerve Blocks, 4 rounds of Botox, 6 shots of Aimovig switching to Emgality, I take daily Elavil, Magnesium, Omegas & CoQ10, B100s, & wear a Butran patch. I'm a singer, so on days of I have to perform, I take up to 16 T1s to get through it. I told my Dr this bc I was concerned I would become an addict. He told me he has patients on 900mg of morphine/day bc they've had a migraine for 20 years. I'm really not feeling optimistic about my future. I should also mention I'm 47, nonsmoker, nondrinker, with gastroparesis from multiple abdominal surgeries, & have begged for a hysterectomy. I believe my hormones are the cause as the migraines started when I was 12 & have gotten worse now that I've started perimenopause. I'm very excited to be getting all my shots on Saturday & maybe getting a sphenocath for home use.
infiniterra Member
That is true. If you read Dr. Angela Stanton articles, it could help. She dedicated to study Migraine during years (she is/was a migraineur) and found that it is basically a channelopathy. Well, a complicated topic. Migraineurs have a larger amount of voltage dependent sodium channels (the sodium-potassium pumps). We need more sodium than other people. Magnesium and calcium also are involved. Everyone of us is different. Depending on what, when, how much of different foods you eat, and basically on the ingestion of salt, potassium and water and other, the symptoms will be different. One of the major culprits of migraine episodes (the painful, or these when we cannot talk, calculate, etc etc), is the triggered by sugar and in general by carbs that are not slowly processed. And also, they dehydrate cells. Sugars wreak havoc in the complicated interactions that enable the channels to work properly. The explanations are given by the neuroscientist. I don´t want to explain that wrongly. Stanton helped a lot of people explaining when to take a determined amount of salt with a glass of water, or if you have had a lot of carbs the water would be a low amount after and a certain amount of salt (1/8 to 1/4 teaspoon). Potassium must be ingested in the form of certain foods, like avocados, nuts, other. She has a group in Facebook. Do not remember exactly the name, but is something like -migraineurs who want to be cured by the Stanton Protocol-. It explains you exactly how to proceed. I cannot follow the protocol because here in Venezuela people is dying of famine, has to eat whatever, sometimes carbs bad quality. We do not have good oils/fats, not enough proteins, forget nuts... But when I follow partly the reccomendations about salt ingestion, when I have the oppotunity to have some foods (like avocado), I have seen some results. No more, unfortunately.. It is not "that salt thing".. No. It is a serious protocol developed using herself as guinea pig. She studied all the literature, the biophysics of pump functioning, physiology, the amount of water needed depending on the weight of the patient and other conditions. It is not easy to follow the strict diet for everyone. But you can feel so much better, without medicines. Both my daughters have migraine, as my mother had and also my sisters, my brother. We are different. One daughter takes too much coffee sometimes, loves teas, cannot follow the instructions due to what happens here (A genocide). She has had something like the dreaded chronic migraine. She takes too many medicines and it is so bad.. I would like to have Stanton´s book. She wrote one and a couple of years ago she wrote one more complete. I have had not the opportunity to buy any. Stanton has a blog. In May 2019: <a href='https://cluelessdoctors.com/2019/05/17/migraine-whats-diet-got-to-do-with-it/' target='_blank' rel='noopener noreferrer ugc'>https://cluelessdoctors.com/2019/05/17/migraine-whats-diet-got-to-do-with-it/</a> Stanton reccomends to take coffee only in the morning, to not take teas/infusions. To eat enough proteins and good fats, certain vegetables, certain fruits. I still have migraines, because as I tell, I cannot follow the instructions due to scarcity of food here. Worse every day. This is not medical advice although every physician should know about. It is based on biophysics (when I worked in that field, I did not know a word about that, it was 40 years ago and my work was related to other issues). I apologize for my elemental English. Best regards!
kdavis2016 Member
Hi, Lisa. Thanks for the great article. I think you're onto something with your questions. I got my first migraine at 12 and now, at 72, have had episodic migraine with aura for 60 years. For the first 40 years, I got about 4-5 migraine episodes a year, all coinciding with my period. I experienced a myriad of scary neurological symptoms but luckily, my headaches were bearable. I assumed my migraines were related to hormones and anticipated not getting migraines after menopause. Not so. They slowed down but returned, in a different form, including vertigo, numbness but less, sometimes absent, headache. My neurologist said I have 'atypical migraine'. According to her, migraine with aura often morphs into atypical aura as a person ages. I believe that once doctors and scientists stop labeling migraine as a headache disorder and start researching it as a neurological disorder, like MS for instance, we will start making some progress. KD
rellenh Member
Hi, I have been a lifetimer with migraines. I have learned that migraines do Evolve throughout one's lifetime. I think the medical world would agree that migraines are a complicated genetic disorder. I think I read the other day that research seems to show that at least 8 genes are responsible for the terror you live with. And there are many symptoms. And no two patients have the same symptoms. And for whatever reason, most people do not want to believe that a "headache" could possibly be devastating. I have a neurologist who specializes in migraines. I even worked in his clinic for a few years until he fired me because I was always sick!!! We remain patient-doctor, and I trust him. I also spent a fair amount of time listening to drug reps and reading their propaganda, oh, sorry, pertinent information. One drug rep was quite flippant: "So how long does a migraine last, take maxalt or whatever, and it's gone in a couple of hours." I felt the need to flatten him into the ground and did so. So ... what helps me? Periodically, I reach out to my book shelf and Oliver Sacks' book "Migraine." I just learned that he wrote the book in 1969, in just a few days. I also learned that in his work and research, he always searched out the worst patients on the neurology ward. He would spend hours with one person at a time, and so learned about the depth and breadth of the world of neurology. I pulled the book off the shelf the other day and on page 20, I found myself under "abdominal migraine." Word for word he described my new situation, this after 50 years of the book being written. I have read a lot of stuff over the years, and none of it was even remotely as detailed as Sacks' book of 50 years ago. I really don't think anyone yet has a clue as to the origins of migraines, but I do find comfort reading Sacks when I am so mystified as to why do I feel like this?!?!? Oliver Sacks / Migraine. It's still in print! Good luck to all of you who live with this on a daily basis. Maybe you can take some comfort that at least one neurologist on this planet knows exactly how you feel. Sadly Oliver Sacks died a few years ago. He had so much to offer.
chrysb52 Member
You ask lots of good questions. I've had migraines, sometimes with aura, since I was a kid, now 67. Occasionally aura with no headache. In terms of diet triggers, I've had both coffee and beer give me a sudden migraine after one sip. It's usually not that extreme, but I do know right away if what I've eaten is going to trigger a migraine. Because of my growing sensitivity to alcohol, I rarely drink. If I wake up feeling kind of crummy, I consider myself "at risk" and carefully avoid headache triggers. Other times, I can eat or drink anything. Go figure. In the recovery phase, I need to eat small, healthy meals, but I find that I crave coffee and red meat in small amounts. I've wondered if the iron or other minerals in meat is behind that craving. As long as I wait till I'm feeling better, they both seem to help. As another poster mentioned, I've had many more instances of vertigo - as did my dad - as I've gotten older. Vertigo with nausea and vomiting are how those typically roll out. I use Imitrex nasal spray for these episodes. Even a person's own migraines can be so different in type, trigger, duration, and symptoms that I do wonder what these variations tell us?
azander Member
Hi Lisa; I had my first migraine when I was about 14. Was in the 10th grade in school, began getting a funny color in my vision field. It was very pretty, was a crescent, looked just like a rattlesnake around the periphery of my visual field, and was actually fascinating, cause the colors, red, yellow, green, blue, purple, like a rainbow colored Diamondback Rattler with the colors flashing and popping and would have been fascinating and lovely had I not been terrified; I thought I was either going crazy, or (this was the day of Ben Casey, the early 1960's medical drama, where they were always talking "subdural hematoma" or "brain tumor&quot😉, and I was terrified of having a brain tumor. Then the headache started, completely debilitating, and of course, I was bullied, and seeing a weakness, they were all over me, and I was late for the bus, and by this time, the distortion had spread til I could not see in the whole right side of my visual field, and my head was killing me. When I got home, my mom was already there, and I confided in her (something I rarely did), and she told me I just had a migraine, to take an Excedrin and lie down. I went to sleep until my dad got home, and when I woke up, the headache was gone, but I was so foggy I could not function. My mom got me a cup of coffee and told me to doctor it til I could drink it - I put lots of sugar and cream in it, and it woke me up - I like coffee the same way now. I thought I had grown out of them, as in my 20's, I would have what people told me were "sinus headaches". However, later in life, the migraines took a different turn; I would get a pain in my head, and my right side would go numb. Went and had CAT scans, showed no sign of stroke. I even went to a Neurologist, who diagnosed it by simply chatting with me. He told me that my migraines had returned in a different form, as a "migraine equivalent", as sometimes, there would be no pain, just numbness. As I had high blood pressure, a lot of the treatments were not appropriate, so my doctors started prescribing Fiorinal, which has worked for around 30 years. Now, in my 60's, I may have a migraine with an aura, might have the flashing lights and no pain, or something sweeps through my head and I go numb, and shortly the pain starts. It honestly would be fun to study if I could get some funding! 😀 Thanks everybody!
georgiana Member
I can answer your last question. Because most of us are women. It's a simple as that. There's no mystery at all there.
lisapress Member
I have suffered from migraine since birth I am told. I remember as a young child the pain, dark rooms, nausea, loud noises, and sleeping. They got worse as I aged. Doctor's said that since I didn't have an aura they weren't migraine. I was given all the latest medication and advice that existed as the years went by: caffergot (all caffee pill that seemed to make them worse), tons of asperin and aleve (ulcers) and so on. I had doctors at the Cleveland Clinic tell me I should just be hospitalized twice a month when I had my three day episodes. Not until the mid 1990's did the US decide that I was not crazy. They came out with the triptans. I finally found someone who told me I did have migraine and I wasn't crazy and there were new meds. At least I could go to work and take care of my family. I read about all the work done in England by the Migraine Trust and how there were lots of types of migraine. I have two types. I was finally diagnosed properly at Johns Hopkins in Baltimore after 50 yeas of migraines. Luckily I lived nearby. I now live abroad and have been to three doctors before finding someone who understands migraine. I feel that I know more about migraine than most doctors. I watch everything I eat and find my triggers. There are lists on the internet and they seem to be similar to what I found. I went to a nutritionist to find out how to discover my triggers. I can eat somethings that are bad and they don't trigger a migraine in small amounts and carefully. At times I think it is a crap shoot but definitely not one I am willing to try very often. That's my experience.
suni1956 Member
All of the issues you bring up are true. I thing Migraines don’t get enough research attention because of their diversity. Scientists likehteir research topics to be in a neat category - but where do you put migraines - neuroscience? Sensory disorder? The list goes on and on. It needs a multidisciplinary approach - one that it clearly is not getting right now.
rakiethebird Member
There is one answer to all the questions in this article: because 74% of migraine sufferers are WOMEN! If you haven't noticed, most woman-centered diseases follow the same pattern -underfunding, lack of research, treatment not covered under most insurance plans or Medicare Part D. Under the ACA, being female may no longer be a pre-existing condition, but it sure is a handicap when it comes to research and support. Women pay more for their treatments, are blown off by doctors as hypochondriacs or hysterical, and the research world would much rather devote their time focused on developing drugs for the perfect erection or for curing male-pattern baldness than finding out what causes migraines and how to treat them.
1. Allyson.Ellis Community Admin
 Those are all valid points, rakiethebird. It is so frustrating that migraine does not receive the funding and attention it needs, in part because of how many women it affects as compared to men. I thought this article might resonate with you: <a href='https://migraine.com/living-migraine/what-must-we-do-to-get-attention/' target='_blank'>https://migraine.com/living-migraine/what-must-we-do-to-get-attention/</a> How are you feeling today? Please know we are here to listen anytime you need support. Wishing you a gentle day. ~Allyson (Migraine.com team)
lorisonthego Member
I agree with everything said here. My children both have migraine, different from mine. My son just had his first multi-day migraine and it was so frustrating for all of us. He is 35 and has had migraines for years but usually ibuprofen and rest will take care of an episode for him. Navigating this new world for him has been difficult and frustrating. He and I use the same general practitioner so medication was easy to have prescribed but having it covered by insurance was not happening. He had to pay out of pocket. Now we are navigating the postdrome phase for him. All new territory. I so hope for more research in the future. This disease is so disabling. He just asked me if I thought he would be better tomorrow. I can’t answer yes or no. It’s a guessing game at best. He will just have to wait and see as, again, we are all different in how we feel before, during and after a migraine episode.
1. Lisa Robin Benson Moderator & Contributor
 Hi Lori, Thanks so much for sharing this! I very much understand the frustration of multi-day migraines. I got around the insurance coverage issue by ordering many of my medications online through a company called withcove, that another one of our advocates also uses and wrote about: <a href='https://migraine.com/living-migraine/withcove/' target='_blank'>https://migraine.com/living-migraine/withcove/</a> . Perhaps this info is helpful to your son or not, but either way, I hope he is able to find a treatment that helps him with his multi-day migraines. Be well, Lisa
harissa Member
Recently, I have had migraines that will not go away, no matter what and can last for days. Wake up with them and go to bed with them. Taking the prevention propranolol-Imitrex for headache and Fioricet and Phenergan for rescue from Imitrex. The only way I have been able to stop is go to the ER for an IV tramadol/Fioricet push and IV fluids. Status migrainosus they called it. Any one else had this. It is new to me and debilitating.
1. Melissa Arnold Community Admin
 Hi, Harissa. So sorry to hear that you're stuck in status migrainosus. I know it won't fix your situation, but you may be interested in knowing that it's not a super rare condition (unfortunately!). Lots of people here have experienced it or are currently living with it, so you are definitely not alone. There are a ton of articles and discussions in our archives on status migrainosus, so I'll just give you a link to a search I did. This way, you can read through them at your own pace, when you're up for it. Please don't hesitate to let us know if you have more questions about this -- it's what we're here for. Sending hugs to you and I hope that you can break this cycle soon! -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
jkbrown Member
I've had migraines since I was 9. I've only had tramadol injection work for me once. Now anytime I get one it seems to make it worse.
1. Melissa Arnold Community Admin
 Sorry to hear that tramadol was never helpful for you, JKBrown. Did you ever find a treatment that helps at all? I sure hope so! -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
valerielong Member
This article definitely raises some good points. Why does ice seem to help one day but just make things worse on another day? Why can I sometimes have sodium nitrite and be fine and other times it's an instant migraine? Why does barometric pressure sometimes cause one but not at other times? It's such a crazy disease! Why DO families experience such different migraines? My mom usually has an aura with hers. My brother only gets abdominal migraines. My dad's migraines didn't start until he was diagnosed with MS. I've had migraines since I was 5. I've had different types of migraines over the years. I don't usually get an aura, but I can get a prodrome phase - tho' not every migraine comes with a prodrome phase. I've had migraines that have only affected my vision and didn't cause me pain. I've had migraines that give me all the usual symptoms like nausea, sensitivity to light and sound, brain fog, etc. but never give me pain. At one point I had chronic migraines due to the overuse of medication so now I'm SUPER careful about taking any pain meds for anything other than a migraine since I don't want to go through that again. And yes, why don't doctors know more about it? It's so common but most family doctors just look at you weird when you talk about it. Some days I wish someone would just chop off my head and other days I can work through the migraine with no problem. So many questions, so few answers. 
1. shayla.oakes Community Admin
 <inline-mention username="valerielong" user-id="3912960"/> I hear you. When I became a moderator for this site (side note: I am a fellow migraine sufferer), I thought that I would have so much insight and wisdom to share from my own personal experiences. Instead, I found that I know absolutely NOTHING. I was overwhelmed by the information and experiences shared throughout our community. For instant, I always smell cigarette smoke shortly before a migraine. I was astonished by the community members that came forth claiming similar symptoms. When I see so many members sharing similar experiences over and over, I, too am often left confused as to why doctors seem unaware or unconcerned when we mention our symptoms to them. One thing that I do know is that I find it so helpful to know that I am not crazy or alone in this. Thank you for sharing a little of your experience with migraines. Hugs, Shayla (<a href='http://Migraine.com' target='_blank'>Migraine.com</a>, Team Member) 
2. Melissa Arnold Community Admin
 <inline-mention username="shayla.oakes" user-id="4211428"/> The headache medicine field is still so new ... it doesn't have the same recognition, funding, etc. I like to hope that everyone here is leading the change and that over time, there will be better understanding in the medical community and better care for all of you. I imagine this is how people with rare diseases feel as well, though migraine is much more common. At least we're all in it together. <3 -Melissa, <a href='http://migraine.com' target='_blank'>migraine.com</a> team
Rebecca C Moderator
<inline-mention username="valerielong" user-id="3912960"/> - I have to agree with <inline-mention username="shayla.oakes" user-id="4211428"/> - when I first came here to advocate I believed I knew some things about migraines, as I suffer from vestibular migraines. But, holy cow I feel like I've learned so much over the past few months and still know very little about migraine disease. The who, what, where, when, and why is still so elusive when it comes to the disability of migraine disease. Those suffering need better advocacy and funding for research and a greater understanding and empathy from professionals, as well as families and employers. I have to remind myself this disease is very individualized and can show its ugly face in many ways - to not put the symptoms, triggers, and pain in a general box labeled "headache," because they are so much more than that with the need of better treatment options. Until we have a greater understanding we all stand in bewilderment, confusion, and acceptance of migraine disease and all it brings our way. Rebecca (comm advc)
wappaw Member
Why, when I was working with an good income, were my migraine meds almost free, but now that I am retired, they cost a fortune?
1. Holly Harding Moderator & Contributor
 <inline-mention username="wappaw" user-id="3905284"/> Thanks for chiming in and Amen. It's insanity. And you are not alone in this. This piece might resonate with you: <a href='https://migraine.com/living-migraine/medicare-doctors-prescriptions' target='_blank'>https://migraine.com/living-migraine/medicare-doctors-prescriptions</a>. There are some strategies shared there regarding ways to save (often by bypassing Medicare altogether). It really is madness. Please share any strategies you have learned along the way. Warmly- Holly <a href='http://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.

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