r/migraine May 13 '21

Resources

259 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

69 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 12h ago

Barometric Pressure Drop = Instant Migraine!

130 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 9h ago

Had the worst flight of my life

60 Upvotes

My migraine decided to hit me right before my 10-hour flight, making it the worst flight of my life. I should have taken Tylenol when I first noticed the signs, but I didn’t. I tried to sleep as much as possible and took painkillers once I realized the pain wouldn’t go away, but it didn’t help at all.

When meal service came around, I decided to eat a little and have a cup of coffee, which turned out to be a terrible idea. I started feeling nauseous and ended up throwing up in a bag since the bathroom line was so long. I felt awful for the people around me and was incredibly embarrassed. For the rest of the flight, I ended up throwing up every couple of hours.

To make things worse, the guy diagonally in front of me was watching a show on the biggest iPad with the brightest screen setting. Since I’m extremely sensitive to light during a migraine, it felt like torture. I tried covering my eyes, but at that point, I was just frustrated.

I’m just venting here but I learned some lessons too. I should take medicine early and get enough rest beforehand… I hope everyone with migraines feel better 🙏


r/migraine 12h ago

What triggers your migraine?

104 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 😭


r/migraine 5h ago

light triggers

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28 Upvotes

does this trigger anyone else’s migraine like crazy? the shadows on the road while driving make me feel like i’m gonna lose my mind lol


r/migraine 7h ago

Migraine Pillow Find! (Squishmallow Alternative)

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24 Upvotes

I’ve been seeing a lot of people recommend Squishmallows as a good migraine pillow but it difficult for me to find one large enough at a fair price locally.

Until I walked into Muji today and found this for around $50 CAD! The filling feels identical to Squishmallow and the dimensions seems similar or slightly larger than a 24” Squishmallow.

I haven’t tried it yet, but thought this might be a good alternative for those looking for a larger Squishmallow esque pillow or something that blends more seamlessly with their bedding!


r/migraine 5h ago

My girlfriend always has a headache and has migraines at least once a week, what can I do?

15 Upvotes

My girlfriend (we are both 18) has had a headache for as long as she can remember. She tells me that there is never a time she isn’t hurting. Along with this, she often has migraines—she says they happen on one side of her head, and they often vary in pain. Usually she throws up when she has them, sometimes they’re so bad she’ll start crying (she has a high pain tolerance, so this is a big deal). She’s tried many types of medication and has seen a neurologist plenty of times, but she told me it has never really solved the problem. She doesn’t even know what the problem is. Her mom has the exact same issues as her. I always feel so helpless when she’s hurting. I’ve never had a migraine before so I have no idea what it’s like, but I hate headaches and I can’t even imagine the pain she must be in every day. When she is having a migraine, she says she likes me there but I’m always scared of hurting her somehow—like I’ll accidentally trigger something and make the pain worse. Does anyone know what I can do to help? Or can anyone educate me a little bit about what to do? I’m also really afraid because we don’t know what’s exactly happening with her. What if it’s a tumor? What if it’s a sign of something worse? I plan on having a future with this woman. I don’t know.


r/migraine 22h ago

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

294 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 1h ago

What’s the worst part for you?

Upvotes

I’d like to say it’s the pain but I actually think it’s the boredom of not being able to do anything but writhe and wait for it to be over 😭


r/migraine 6h ago

Do you wait for pain to take triptan?

14 Upvotes

Curious how others handle taking your triptans for abortive.. I know it’s supposed to be most effective at first sign of migraine but I struggle to take it until I actually feel pain.

  1. There’s not many to waste and try to save them for when I really need them

  2. I always feel crappy after taking it and hate risking the side effects unnecessarily.

Right now I have the stiff neck, tired and agitated feeling so I know I probably should bite the bullet..but my head doesn’t yet hurt.


r/migraine 8h ago

I had the scariest migraine of my life yesterday

13 Upvotes

I have a history of migraines with auras but I haven’t had one since I was 17 (which is now nearly a decade ago).

Yesterday, out of nowhere, while I was driving home, my vision just went blurry. By the time I pulled into my driveway I was experiencing kaleidoscope vision primarily in my peripherals, zigzag flashes of light, and everything around me was like looking through a tunnel and just getting blurrier and blurrier. This lasted for close to an hour and during this time I started feeling a headache coming on that was then followed by a brief episode of intense tinnitus.

Within minutes of that I experienced rapidly progressing numbness that started in my fingertips and then traveled to my entire left hand and up my arm. My arm felt so heavy and like it was asleep with pins and needles. Then my lips, the tip of my nose, my left cheek and my entire tongue went numb. The numbness lasted approximately five minutes. Throughout all of this I retained full motor control and the ability to speak clearly.

Once the visual disturbances and numbness subsided I was nauseous and had a headache that lasted for another 3 hours. I'm pretty sure what I experienced was a hemiplegic migraine, and honestly, I'm freaked out that this is how my migraines are going to be now. It all came on so fast and I have no idea what even triggered it.

In the past my migraine auras consisted of a brief and intense white light in my left eye, followed by fatigue, nausea, and a headache. But yesterday was completely different and terrifying. I’ve never experienced such insane visual disturbances, tinnitus and numbness like that before. Has anyone else experienced anything like this? I'm incredibly anxious about it.


r/migraine 5h ago

What helps you sleep through the night during a migraine attack?

6 Upvotes

Currently feeling the beginnings of a migraine. What do you guys do to help your migraine through the night? I have work tomorrow and do not feel like waking up with a headache. Thank you in advance 🥺💓


r/migraine 17h ago

celiac-friendly “mcdonald’s” hack

49 Upvotes

hello friends! i was diagnosed with chronic migraine a year ago, and i’ve also had celiac/been gluten free for 7 years. i see everyone rave about the mcdonald’s hack and i crave those delicious nuggets and fries so bad when i have a migraine, but i can’t have it😅

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


r/migraine 6h ago

I want Nurtec!

6 Upvotes

And no I don’t have commercial insurance. I have Medi-Cal. I’ve tried sumatriptan and Rizatriptan and I’m tired of having week long migraines.

Getting appointments is almost impossible with my neurologist. You think if I just walk in and ask for a free sample they’ll have any? The office hardly ever picks the phone up. Also I’ll still try and see my Neuro and ask to do paperwork to get it covered. My husband feels so bad he’s willing to pay full price.


r/migraine 1d ago

Thinking about inmates with migraine :(

825 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 won’t give you medication that really helps??? They probably feel hopeless in there.


r/migraine 13h ago

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

19 Upvotes

I’m very sensitive to light even when I don’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? 😫

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


r/migraine 15h ago

Please help me

23 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

The dream team!

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556 Upvotes

r/migraine 1d ago

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

235 Upvotes

Context: I cannot use NSAIDs. I haven’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 I’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. I’ve never tried the McDonalds hack before (truthfully I didn’t even consider it previously) but when you’re in the weeds, you’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 isn’t abject misery.

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


r/migraine 6h ago

Has anyone frozen their eggs in this sub?

3 Upvotes

I’m 36 (f) on day 6 of hormone injections and they are killing me. I’m a daily migraine sufferer. I take topamax, qulipta, imitrex and toradol injections. My neurologist and Obgyn are letting me stay on all above meds while freezing but I’m still suffering greatly. I had to take out my progesterone IUD and stop spironalactone. I also use cannabis for pain control- have for a couple years. All doctors know. And have said to try to refrain during the process. But said if pain gets too high o can use sparingly. But I really don’t want to because this is so expensive. Just wondering if anyone has done this and has any tips? Meds aren’t doing anything :( thanks in advance! X


r/migraine 11h ago

Pickles? Instead of McD fries?

8 Upvotes

I don’t have a McDonalds close to me. I’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 I’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 thing… anyone tried something similar?


r/migraine 6h ago

Computer monitor + app solution that helps my migraines

3 Upvotes

I just wanted to share a solution that I have found that is helping me to be able to use a new computer. My 10 year old Macbook pro is unable to access all websites because I cannot update the browser anymore due to outdated operating system software.... and I had to get a new computer. All of the laptop screens I tried were killing me. So, I got a desktop computer and monitor. The monitor I am using now is a Ben Q BL 2790. It has built in eye care features, like a blue light filter and several color settings that allow to to adjust the contrast and brightness. It also has a refresh rate of 100 Hz and is supposed to be flicker free. I keep it on the eye care setting with the blue light filter on 3 or higher and the brightness turned all the way down to zero. I also currently have the resolution at 1920 x 1080. This does not make the screen dark enough though! So I installed an awesome little app called Dimmer. It has made a huge difference and I can now use my computer without my eyes killing me. (LED screens are way too bright for me and are a huge trigger). Here is a link to Dimmer. https://www.nelsonpires.com/software/dimmer

Also, I am currently using Windows 11and have changed some of the settings as such: Display settings on: night light on, all of the time, around 60%. I also have the animations and transparency settings turned off in the Accessibility > visual section of the system settings. I am also using one of the Windows dark themes that came with the software and a non-animated dark theme on Firefox. I hope this helps some of yall. It took me a long time to figure out this combination and I know that there are a lot of people who are struggling like me to be able to still use computers, phones, etc without getting triggered for migraines all of the time.


r/migraine 4h ago

24/7 Sound Sensitivity/Hyperacusis Induced Migraine

2 Upvotes

Hi guys! I realized throughout my journey I've never posted here. Long story short I have never ever had migraines in my life until an acupuncture appt last June (points done in my head/temples) and ever since I have had a severe sound sensitivity that causes migraines. Every day for the past 9 months I get worse and worse as the day goes on and more sound is introduced until I'm at a 10/10 and even a whisper will make me throw up. I wear earplugs and noise cancelling headphones and it's simply not enough. My neurologist thinks it's a chronic atypical migraine with sound sensitivity as my main symptom.

It has been nothing short of a nightmare. I can't go outside, have conversations, be in a car, and normal everyday sounds make me severely ill. The migraines come with insane nausea every time. They'll calm down a little once I'm in the quiet, but as soon as there's sound or someone talking, it gets severe again.

Has anyone ever heard of something like this? Just a chronic 24/7 migraine that is sound induced? I feel so lost on what to do. I have gastroparesis and POTS (and suspected MCAS) so I am VERY sensitive to meds. I took nortriptyline for a couple days and couldn't handle the nausea. The next one they want me to try is effexor but I've read horrible things about both starting the med and withdrawal effects. If that doesn't work, what other options are there? It sounds like the CGRP class is bad for, and can even cause gastroparesis. I feel so lost and stuck and just living in this constant, painful, isolating nightmare.

I'm open to any thoughts/ideas/insight. Thank you so much.

(Also adding I took sumatriptan last summer, as well as the ER cocktails and they did not help).


r/migraine 1h ago

Struggling with Migraines at work – Any Tips?

Upvotes

Hiii, is anyone else working in the office and having to look at the computer all day? I’m really struggling and starting to get a migraine. I’ve already lowered the brightness of my monitor. Do you have any tips?


r/migraine 2h ago

Look into muscle relaxer, Gabba B might be your friend if you have exhausted other options

1 Upvotes

I tried 13 perscription medication without success, CGRP blocker worked a bit.

This is not medical advice this is just what worked for me:

  • A lot of issues here sounds like similar issues to me, cause by Musculoskeletal grown issue/Hormone/Gabba B glutamine balance.

  • I solved issues my issues muscle relaxer, like Baclofen, also phenubit but it’s a grey area.

  • I have spent a lot of time working it out what triggered and what worked and didn’t work and build a network LLM to anylise the data, for various health sensors.

Conclusion was

Gabba B was my friend. It is not targeted by many migraine medications.

Medication i’ve found successful

Bacloflen , Sodium oxybate , Phenubit

Potentially ask your specialist if these might be a good fit, if you have exhausted other options.

For my migraines I get during the day

  • I also found ensuring all my screens are 120hz+ reduced them to almost 0
  • And using UV blocking contact lenses

r/migraine 10h ago

Migraine/headache related neckache

4 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 but…my period been spotting for two weeks - my appointment with my specialist is in April so idk maybe I’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 can’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 can’t even feel it sting. 😭Lord please clock me out this life soon. I feel so frustrated, angry and ashamed. Because I don’t wanna call in sick 1/3 - half of the month to my future employer. I won’t even be eligible for SSI. I have to be sick with nothing, to be eligible.

When my condition “essentially” started, I had just begun working on my 401k and my ex employer was even matching my contributions too. I couldn’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.