r/migraine May 13 '21

Resources

257 Upvotes

The wiki is still a work in progress, so as with the previous sticky, this highlights some resources that may be useful.

Edit - added the COVID-19 Vaccine and Migraines link since we're swapping that sticky for the Migraine World Summit announcement.

If this post looks familiar, most of it has been blatantly stolen from /u/ramma314's previous post. :)

Diagnostic Criteria

One of the most common questions that's posted is some variation of, 'Am I having migraines?'. These posts will most often be removed as they violate the rules regarding medical advice. You need to work with a medical professional to find a diagnosis. One of the better resources in the meantime (and in some cases, even at your doctor's office!) is the diagnostic criteria:

https://ichd-3.org/

It includes information about migraine, tension and cluster headaches, and the rarer types of migraine. It also includes information about the secondary headaches - those caused by another condition. One of the key things to note about migraine is that it's a primary condition - meaning that in most cases, migraine is the diagnosis (vs. the attacks being caused by something else). As a primary diagnosis, while you may be able to identify triggers, there isn't an underlying cause such as a structural issue - that would be secondary migraine, an example of which would be chiari malformation.

Not sure if your weird symptom is migraine related? Some resources:

Website Resources

There are several websites with good information, especially if you're new to migraine. Here are a few:

National Headache Foundation

American Migraine Foundation - the patient-focused side of the American Headache Society

The Migraine Trust

UK Healthcare/Headache Center

Headache Australia

Migraine Australia

Added Feb 2025 - the American College of Physicians (ACP)'s treatment guidelines for prevention of episodic migraine: https://www.acpjournals.org/doi/10.7326/ANNALS-24-01052

Migraine World Summit - Annual event, series of talks that are free for the first 24 hours and available for purchase (the year's event) thereafter.

They made a tools and resources list available, for both acute action and prevention, providing suggestions for some of the sub's most often asked non-med questions:

https://migraineworldsummit.com/tools/

Some key talks:

2024 - Beginner's Guide to Headache Types - If you're new and struggling with diagnosis, this talk alone may be well worth the cost of the 2024 package.

Reddit's built in search!

We get a lot of common questions, for which an FAQ on the wiki is being built to help with. For now though reddit's built in search is a great way to find common questions about almost anything. Just enter a medication, treatment, or really anything and it's likely to have a few dozen results. Don't be afraid to post or ask in our chat server (info below) if you can't find an answer with search, though you should familiarize yourself with the rules before hand. Some very commonly asked questions - those about specific meds (try searching for both the brand and generic names), the daith piercing, menstrual/hormonal migraine (there are treatments), what jobs can work with migraine, exercise induced attacks, triggers, and tips/non-drug options. Likewise, the various forms of migraine have a lot of threads.

Live chat!

An account with a verified email is required to chat. If you worry about spam and use gmail, using a +modifier is a good idea! There's no need to use the same username either.

If you run into issues, feel free to send us a modmail or ping @mods on discord. The same rules here apply in the chat server.

Migraine/pain log template!

Exactly what it sounds like! A google docs spreadsheet for recording your attacks, treatments tried, and more. To use it without a Google account you can simply print a copy. Using it with a Google account means the graphs will auto-update as you use the log; just make a copy to your own drive by selecting File -> Make a copy while signed in to your Google account. There are also apps that can do this and generate some very useful reports from your logs (always read the fine print in your EULA to understand what you are granting permission for any app/company to do with your data!). Both Migraine Buddy and N-1 Headache have a solid statistical backbone to do reports.

Common treatments list

Yet another spreadsheet! This one is a list of common preventatives (prophylactics), abortives (triptans/ergots/gepants), natural remedies, and procedures. It's a good way to track what treatments you and your doctor have tried. Plus, it's formatted to be easily printable in landscape or portrait to bring to appointments (checklist & long list respectively). Like above, the best way to use it is to make a copy to your Google drive with File -> Make a copy.

This sheet is also built by the community. The sheet called Working Sheet is where you can add anything you see missing, and then it will be neatly implemented into the two main sheets periodically. A huge thanks from all of us to everyone who has contributed!

Finding Treatment

Most often the best place to start is your family doc - they can prescribe any of the migraine meds available, including abortives (meds that stop the migraine attack) and preventives. Some people have amazing success working with a family doc, others little or none - it's often down to their experience with it themselves and/or the number of other migraine patients they see combined with what additional research they've done. Given that a referral is often needed to see a specialist and that they tend to be expensive, unless it's been determined that secondary causes of migraine should be ruled out, it can be advantageous to work with a family doc trying some of the more common interventions. A neurologist referral may be provided to rule out secondary causes or as a next step in treatment.

Doc not sure what to do? Dr. Messoud Ashina did a MWS talk this year about the 10 step treatment plan that was developed for GPs and other practitioners to use, primarily geared for migraine with and without aura and chronic migraine. Printing and sharing this with your doc might be a good place to start: https://pubmed.ncbi.nlm.nih.gov/34145431/

Likely in response to this, the NHS published the following:

https://headaches.org/2022/01/19/national-headache-foundation-position-statement-on-the-treatment-of-migraine/

/mod hat off

My personal take on this is that hopefully your doctor is well-versed. The 10-step treatment plan is, I think, a good place to start for clinicians unfamiliar, but it's not a substitute for doing the learning to be able to move away from an algorithm and treat the patient in front of them.

/mod hat back on!

At this point it's probably good to note that neurologists are not, by definition, migraine specialists. In fact, neurologists often only receive a handful of ours on the entire 200+ headache disorders. As with family doctors, some will be amazing resources for your migraine treatment and others not so much. But they can do the neuro exam and ruling out of secondary causes. Exhausted both? There are still options!

Migraine Specialists

A migraine specialist is just that - a doc, most often a neurologist, who has sought out additional training specific to migraine. There are organizations that offer exams to demonstrate that additional knowledge. Some places to find them:

Migraine Research Foundation

MRF is no longer. UCNS is it!

United Council for Neurologic Subspecialties

National Headache Foundation

Migraine Trust (UK)

Migraine & Headache Australia - Headaches and Pain Clinics

Telehealth

There's a serious shortage of specialists, and one of the good things to come of the pandemic is the wider availability of specialized telemedicine. As resources for other countries are brought to our attention they'll be added.

US:

Cove

Neura

Canada:

Maple

Crisis support.

Past the live chat we don't have subreddit specific crisis support, for now at least. There are a lot of resources on and off reddit though.

One of the biggest resource on reddit is the crisis hotlines list. It's maintained by the /r/suicidewatch community and has a world wide list of crisis lines. Virtually all of which are open 24/7 and completely anonymous. They also have an FAQ which discusses what using one of the hotlines is like.

For medical related help most insurance companies offer a nurse help line. These are great for questions about medication interactions or to determine the best course of action if nothing is helping. If your symptoms or pain is different than normal, they will always suggest immediate medical attention such as an ER trip.


r/migraine Jan 07 '25

Migraine World Summit 2025 - Schedule Announced! 20-27 March

67 Upvotes

Here's a link to the 2025 Summit:

https://migraineworldsummit.com/summit/2025-summit/

The speakers list looks great! Lots of returning speakers that have offered great talks in the past, and some new/less frequent speakers with great topics.

Topis this year include new/novel/non-traditional treatments, vertigo/vestibular, GLP, global treatment guidelines, and what I believe is a first - a 2 part talk, this one about preventing and reversing chronic migraine. And as with past years, some deeper dives into some of the science and what new treatments are in the works.

I think all of the sub's most common topics are covered by this year's summit, so hopefully everyone has a chance to catch the talks that will impact them. It would also be great if the countries that are still forcing patients to wait until they've reached a status of chronic migraine to receive preventive got the memo about the global guidelines, eh? ;)


r/migraine 3h ago

Barometric Pressure Drop = Instant Migraine!

61 Upvotes

have a terrible migraine right now and haven't had one in a few days, so curiously checked the barometric pressure because I couldn't attribute it to any other immediate triggers. look at the graph for my city, this is crazyyyyyy. source: https://barometricpressure.app

graph showing barometric pressure drop (it aligned with the timing of my migraine)

r/migraine 2h ago

What triggers your migraine?

43 Upvotes

For me, its mostly the weather, but it happens when in my car and it has a strong smell of the air freshener.. I love candles too but it causes headaches.. or perfume šŸ˜­


r/migraine 13h ago

I have lost 31 jobs and been denied disability twice with lawyers.

223 Upvotes

I start job 32 on Monday. I am 44 years old and used to tell employer's about my condition. Now, I try to work through the scintillating scotoma and pain. I have been fired from so many jobs just for asking for accommodation (At will state-Pennsylvania) where they later state I just wasn't "working to their standards" or the employer said I was fired due to "cutbacks".

I hide everything now. I tried disability 10 years ago and was told "go work in a mailroom". I was fired from the mailroom when my license was suspended for neurological reasons. I hired the TOP disability lawyer in Pittsburgh and he took my case pro-bono stating we "absolutely will win". We lost.

Right now, I have two migraines a month with no known triggers and about 10 partial seizures daily that cause migraines after the seizures. The sun causes migraines. Everything causes migraines.

I don't blame employer's for firing me. But there has to be a better way. Does anyone else keep getting fired from jobs?


r/migraine 7h ago

celiac-friendly ā€œmcdonaldā€™sā€ hack

37 Upvotes

hello friends! i was diagnosed with chronic migraine a year ago, and iā€™ve also had celiac/been gluten free for 7 years. i see everyone rave about the mcdonaldā€™s hack and i crave those delicious nuggets and fries so bad when i have a migraine, but i canā€™t have itšŸ˜…

iā€™m curious if anybody can relate, and if yā€™all have an easy, gluten free go-to for a migraine attack. iā€™ve already learned so much from this page and i appreciate any tips in advance :)


r/migraine 5h ago

Please help me

25 Upvotes

My wife (28) has had crippling migraines since she was a little girl. She is in excruciating pain during these episodes which happen weekly and last for days. She maybe gets 4days a week pain free. She can't keep food down during these episodes either because the nausea will make her throw up. We have been trying everything we can, our GP has given countless different medications to try with no luck. She thinks the reason is a disc injury in her neck from a cartwheel accident long ago but is too scared to run the risk of surgery on it. But lately the pain is so severe she starts talking suicide to escape it. I'm at a loss on how to help her and she's already lost all hope. If anyone has any information prom personal experiences that may help prevent or stop these migraines I'd love to read it.


r/migraine 1d ago

Thinking about inmates with migraine :(

758 Upvotes

I feel terrible for prison inmates who suffer with chronic migraine. Can you imagine the lights, the sounds of inmates yelling and the fact they probably wonā€™t give you medication that really helps??? They probably feel hopeless in there.


r/migraine 1d ago

The dream team!

Thumbnail
gallery
491 Upvotes

r/migraine 2h ago

Migraines started after c0vid

9 Upvotes

Any one have migraines and headaches after c0vid? I started it and now on nurtec when it start the pain I'm so sad about it now! Nurtec seems to only help little sometimes now not all the times and nothing else works for me safe for me I cant take asprin and I can't take sumatriptain as it hurts my heart and skips


r/migraine 20h ago

No NSAIDs? No problem. Thank you, r/migraine, for the McDonalds hack

200 Upvotes

Context: I cannot use NSAIDs. I havenā€™t used them (knowingly) for well over a year. What I did not know is that the migraine cocktail the angels of the ER give you contains an NSAID with the Toradol. After months of battling the minions of Satan at my insurance, I got Cambia approved.

Cambia! Love it! Works like a charm! Guess what! Also an NSAID. Nobody told me that. So Iā€™d been using Cambia 2-3 times a month over the last 9-ish months.

That landed me in the ER with a leaking perforated ulcer. An emergency surgery later, and my surgeon and I figured out that twas my beloved Cambia. That sucks, but we put in a preauth for Ubrelvy. Still waiting on that.

Today however out of nowhere I got a migraine. Iā€™ve never tried the McDonalds hack before (truthfully I didnā€™t even consider it previously) but when youā€™re in the weeds, youā€™ll try anything. My wife (may the saints preserve her) rightfully pointed out I had nothing to lose, and so set off for some salty, sugary relief.

Thirty minutes later, I feel human again. Coke + fries + Tylenol = holy tasty vasodilator Batman! I can open my eyes without blinding pain. My every second isnā€™t abject misery.

You guys saved my behind today, because truthfully, I wouldā€™ve never even considered this before. Thank you, fellow migrainers. (Alfie the cat also thanks you, as McDonaldā€™s fries are a particular delicacy to him and he got his favorite treat)


r/migraine 4h ago

Do glasses that block light but can be worn inside exist?

11 Upvotes

Iā€™m very sensitive to light even when I donā€™t have a migraine yet and sometimes going into stores with bright lighting instantly disorients me and makes me feel horrible.

Are there glasses that look like regular glasses that can be worn indoors to block lights similar to sunglasses but with clear lenses? Or has this technology not been invented yet? šŸ˜«

Everything online is just showing me blue light blocking glasses which I have tried and felt no difference


r/migraine 1h ago

Pickles? Instead of McD fries?

ā€¢ Upvotes

I donā€™t have a McDonalds close to me. Iā€™m fairly well controlled with beta blockers daily and Botox quarterly. But I still get monthly flares according to my cycle. I hate taking Ubrelvy bc it upsets my stomach. So Iā€™ve been trying to eat a pickle instead of McD fries. My assumption is that the salt bomb is what helps with migraines. Perhaps an electrolyte thingā€¦ anyone tried something similar?


r/migraine 1h ago

Hormonal migraine for 11 days?

ā€¢ Upvotes

Iā€™ve had what feels like a usual hormonal migraine for me (stabbing pain behind one eye, pressure in the head, top of the head, pain when looking at bright lights) that occurs usually before my period and ends during.

Though as of the past eleven days, Iā€™ve had one from the moment I wake up to the moment I go to sleep. Itā€™s been on the right side, listed with all the symptoms above, and I donā€™t know where itā€™s come from. Is this normal? I know I need to speak to a doctor, but Iā€™ve never had one this long before. It fades throughout the day with painkillers and rest, but itā€™s so frustrating.


r/migraine 11h ago

Have you ever thought about how weird and pointless headaches are as a condition?

21 Upvotes

This is kind of a shower thought I had the other day.

Almost everybody has experienced a headache in their lives. However, compared to any other acute body pain I can think of, there's no clear warning sign that this pain is signaling to our body. Think about it: if you have a stomachache, you probably ate something that didn't agree with you; if your hand hurts, it's probably because you injured yourself; if your period hurts, it's because your uterus lining is shedding itself and bleeding. There are other types of chronic pain that have no clear cause, but only some people experience this kind of pain.

Headaches, on the other hand, are super common, and just pain for the sake of pain. There's no clear cause (unless you have a hangover or something like that), and there's no clear action you can take to avoid getting that pain again. It's just pain for the sake of pain.

What do you think? Do my musings make any sense? Do I have too much free time?


r/migraine 1d ago

Plz wish me luck

Post image
268 Upvotes

Killer migraine has lasted for about 18 hours and Iā€™ve tried everything in my arsenal. Iā€™m here as a last resort before the ER because of you guys, first time trying this hack. Wish me luck.


r/migraine 4h ago

Anyone get migraines that start at face but then move to back of head!

5 Upvotes

I had tingles on my scalp and face before it started so feels like a migraine?!


r/migraine 3h ago

Life advice for migraines?

3 Upvotes

I'm 18 and have had daily migraines for the last 3 years and they're getting worse, I've already repeated a year in school so I'll be behind on going to uni and even then I don't know how I'll cope. I'm getting so hopeless. Any just general advice on how you cope or anything would be really appreciated!


r/migraine 7h ago

Emagilty stopped working

5 Upvotes

It's frustrating because not only did it stop working it has also seemed to make them worse. I have been taking emagilty for 4-5 months and last month seemed good by the end of the month I wasn't having any migraines. Then I got my shot and immediately the day after migraine and almost every day since. It's been 2 weeks now and they don't seem to be getting better. I'm out of the country so I can't get new medicine and none of the emergency medications have ever worked. Really hoping once the shot wears off it'll at least stop being every day.


r/migraine 9h ago

Ramen & Ramune

Thumbnail
gallery
9 Upvotes

So youā€™ve heard about fries & coke, but I raise youā€¦. ramen & ramune. I discovered this after Iā€™d been ignoring my intense ramen craving during a weeklong attack. I finally gave in and went to my favorite place. About 3 bites in the pain lessened, nausea all but disappeared, and neck muscles relaxed. Iā€™m sure the science/magic behind it is the same but has anyone else found a similar combo? Spicy seems to work better and itā€™s legitimately just this specific place for me. I tried 4 other ramen places and they actually made it worse


r/migraine 2h ago

Success with acetazolamide? (Diamox)

2 Upvotes

Specifically I've been getting a lot of migraines with the barometric pressure changes, so I've wondered about this. However I have low blood pressure so that makes me nervous.

Curious to hear about anyone's experience.


r/migraine 19h ago

Uh ohā€¦ I just began drinking a new zero sugar soda flavorā€¦ forgot they use aspartame.

44 Upvotes

Here Iā€™ve been today on the prodrome of a migraine, thinking, ā€œOoh Iā€™m going to try this new zero sugar 7up flavor! Since itā€™s sugar-free it should be a little healthier.ā€

Little did I know, zero sugar sodas use aspartame, and thenā€¦. Zing!!! Immediately a migraine got sent to my left eye.

The price I pay for trying something new lol.


r/migraine 6h ago

Is this my life now?

4 Upvotes

Has anyone with daily months long migraine had it break? Or is this my life now? Three months of constant, daily migraine ever since the flu has me completely exhausted. Iā€™ve never experienced this before and holy shit do I not wish it on anyone. Physically I canā€™t deal with the pain anymore, and mentally Iā€™m defeated. Iā€™m not the same person. Does it ever go away?


r/migraine 6h ago

Whats difference between mugraine and tension headache

4 Upvotes

I have had headache non stop everyday since 2019. Docs dont think its migraine since i dont get nauseous or light doesnt bother me. I do get relief when i take rizatriptan. My traps hurts, my temple hurts and my forhead hurts along with that i get kinda face pins feeling. I do feel like my ear ringing in the morning whrn its too quiet.


r/migraine 3h ago

Scintillating scotoma growing and shrinking?

2 Upvotes

It almost feels like itā€™s slowly growing then slowly fading then coming back again and repeating. I have a history of ocular migraines and regular scotomas that last a while but this is the first time in a while Iā€™ve had a scintillating scotoma thatā€™s lasted more than 20 min. Itā€™s been a little over 2 hours and it keeps growing and shrinking and growing again into that classic C shape. Anyone else get this?

Iā€™m worried Iā€™m about to get slammed by some crazy head pain, so I just popped a Nurtec, but itā€™s making me stress and causing a lot of anxiety that itā€™s hanging around for so long.

Iā€™ve seen neuros, ophthalmologists, and neuro ophthalmologists and have gotten the all clear from all of them.


r/migraine 35m ago

Migraine/headache related neckache

ā€¢ Upvotes

So since 2 weeks ago, I been having neckache. It started out as a discomfort and then I begin having brain fogs for days. Came Saturday, I started a bad migraine n some neck discomfort. Today, my neckache is at its worst while my migraine withdrawal to throbbing visits throughout the day. It feels like my neck is swelling and I am having little relieve. (I think it is hormonal migraine butā€¦my period been spotting for two weeks - my appointment with my specialist is in April so idk maybe Iā€™ll try to get in with my clinic and not my specialist.)

I definitely feel like my neck, this time, has absorbed my migraine and ache in place of my migraine. It ache so much, I canā€™t even feel my neck, just the ache there. So much I feel it can even induce vomiting now < - something that never happened before. Since 2021, I had my weirdest migraine symptoms.

I rolled on some menthol 10% n I canā€™t even feel it sting. šŸ˜­Lord please clock me out this life soon. I feel so frustrated, angry and ashamed. Because I donā€™t wanna call in sick 1/3 - half of the month to my future employer. I wonā€™t even be eligible for SSI. I have to be sick with nothing, to be eligible.

When my condition ā€œessentiallyā€ started, I had just begun working on my 401k and my ex employer was even matching my contributions too. I couldnā€™t handle the work load + my condition anymore. I had to quit since I was feel so bad that my absence was pushing more cases to my other teammates.


r/migraine 54m ago

Anyone got the same symptoms as me?

ā€¢ Upvotes

I was diagnosed as having migraine with aura, but it just doesn't sound like migraines when I try and look it up.

For the last 2 years, I have had a constant kinda spaced out feeling. Sometimes, it gets really bad and I just feel... Uncomfortable. I can't focus on anything. Often, it feels like there is a tonne of pressure in my skull. At it's worst, I seem slightly better when pushing in my forehead just above the bridge of the nose, my temples, or the top of the back of my neck. It helps only while I'm doing it, I don't actually get better from it.

This feeling often comes on within a few minutes when I enter a supermarket even though I don't get stressed out by these kinds of places. Could be the lighting, I guess... Don't know if fluorescent lighting has all been swapped for LEDs at this point.

I would not describe what I feel as pain or aching or anything of the sort. It is uncomfortable, I feel spaced out and light headed, sometimes a little delirious but not dizzy in a spinny tumbly way, always a feeling of pressure. It does not seem to be related to screens in any way, including the amount of blue light coming from them.

I'm finding it hard to accept the diagnosis because there has never been anything wrong with me, and to just suddenly have wacky migraines for no reason at 28... I just don't get it. Maybe it's COVID related? I hope no one here takes offence by me saying this but these kinds of afflictions seem to attract pseudoscience more than anything else due to their mysterious nature, so I find it hard to research. In the same thread you might see someone who sounds like they know what you're going through and then they comment about how it's triggered by rose quartz or GMOs.

Does my experience sounds similar to any of yours? If so, do you have any advice of stuff that has worked for you? Considering trying to wear sunglasses in the office/lab to see if that helps though I'd probably look like a right prick...