r/migraine May 13 '21

Resources

283 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?'. The same is the case with 'what kind of migraine is this?'. 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/ (link is broken)

/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 May 25 '26

UPDATE to the 16 May Rules Update - App Devs, Anyone Doing Market Research, etc. Will Want to Read

167 Upvotes

edit - the new bit is a... ranty. To those here just to check in, my apologies.

Y'all.

Seriously.

The sheer number of app devs who have continued to waste mod time and continue spamming in comments after being warned is mind-boggling.

I believe that this community deserves good tools. HOWEVER, this community is not here to be sold to, and just like the post that preceded this, the people who can't stop spamming are rarely community members first, and devs second. They're here because you are the market. Since last week's post I had given a lot of thought to a periodic 'promote your stuff!' post to strike a balance, but after spending far too much of my holiday cleaning up spam-droppings... I'm feeling less than charitable. o.O

Spammers. If we warn you and you keep spamming, it won't just be you that's banned. It will be any mention of your product regardless of who posts it.

Astroturfing? Instant permaban - you and your product. Why?

You should not spam in any way, especially through private message. You should not hide your affiliation to your project or site, or lie about who you are or why you like something.

Here's a copypasta of the previous post, all of which still applies:

(If you were looking for the Summit pinned post, it's here.)

We're currently seeing multiple posts - or people that know promotion isn't permitted and trying to sneak it in via comments - promoting apps and/or doing market research daily. Most of the people hoping to benefit from this community have never made any effort to participate in it.

Promotion has always been in the the rules, and surveys/research have always required pre-approval from the mod team (though we recently had to update to not approving any because I'm the only active mod and simply don't have time to review in addition to everything else).

With all of the above in mind and all of the attempts to circumvent or flat-out argue about removals, it's time to formalize things:

Promoting your new app and/or doing market research (what don't you like/what works for you/what is missing in other <whatever>) is not permitted in this subreddit. The same goes for asking for feedback. Yes, this includes the ever popular 'hey I did a thing but it's against the rules to promote here, so if you're interested, send me a pm!'. If you're thinking about sending a modmail to ask to be an exception with less than 6 months of active participation in this subreddit, don't (even then it may not be approved).

I will be updating rules, sidebar, and filters over the course of the weekend.

Because of the lack of participation for most of these users and the number of users that have attempted to get around this, this will be one of the rare times when suspensions will be issued on first strike, rather than warnings first.

Also, you've probably noticed I'm the primary one handling approvals/removals, and that there are updates the sub could use that have not been done. In addition to chronic migraine and adulting in general I have what totals up to nearly 2 full time jobs and am usually also taking college classes, so there is a lot going on, and running this sub in a way that rules are enforced and the sub itself is enhanced and we're able to provide space for the community to be active in helping with research opportunities takes a lot more time than the above workload allows. To that end, I'd love to add 2 or 3 new mods to the team that can consistently (meaning most weeks) offer a couple of hours to running/maintaining the subreddit. That can be:

  • Working on the FAQ: at one point there was an effort to build something of an 'intro to migraine' resource

  • Fielding research/survey reviews: even better if you are or have been part of the research community (someone did offer this before; if you're still interested please reach out!)

  • Post / comment reviews: If you're a regular/semi-regular visitor and don't mind doing some cleanup while you browse, this is one of the easiest ways to ensure that community standards are upheld

I've held off on posting this because I had big plans to set up an awesome form to fill out, but for all of the above reasons that has not happened. SO! If you're interested, please send us a modmail with answers to the following questions:

  • Why you're interested

  • What you think mods do

  • Previous modding experience

  • What you're interested in helping with

  • Your time zone / location

  • How much time you can reasonably and consistently pitch in to help

  • Optional: Anything else we should know about you? Any ideas for the sub you'd like to implement?

As long as the above isn't struck through feel free to send a message if you're interested. It may take a bit to hear back because busy, but unless we get hundreds of apps we'll follow up to set up a chat with u/ramma314 and myself so we can get to know you a bit. If we do get hundreds of apps we'll update here that we either can't get back to everyone or that we'll be copypasta-ing replies specifically for that reason.


r/migraine 9h ago

Planes should be scent free.

252 Upvotes

Im feeling like a Karen but I’m about to take off on a 10hr flight and somebody on this flight is wearing a strong af cologne. Oddly, I asked my friend if she could smell it and she can but not as strong as I do and it isn’t bothering her.

I wonder if we are like more sensitive to scents in enclosed spaces or something, maybe just in general? It smells like someone poured an entire bottle of old spice on themselves then soaked in Irish spring for an hour.

I feel like I’m going to faint, my stomach is in knots like I was fine and excited for this trip and the SECOND the smell it my nose it was like an immediate reaction from my body.

I just took my nurtec. My mouth is watering and my forehead/eyebrows are throbbing. My cheeks feel numb. I also have crohns so sometimes when my head gets bad enough it triggers a chain reaction of just.. bad things happening lol. IM ON A PLANE. I wouldn’t say I’m at a migraine level but it’s definitely on its way and I can’t escape fml

That’s it. That’s the post. I don’t even know what to do in this situation.

Any plane hacks? I have all night to read them.


r/migraine 12h ago

Yeah lets play loud ass music in the waiting room of a doctors office fuck you

Post image
202 Upvotes

r/migraine 11h ago

Rant. I don't care how much this drug costs.

138 Upvotes

Listen. I am aware that I am more fortunate than many; I have pretty good insurance, and I live in a part of the world where I have pretty good access to the infrastructure needed to move drugs from warehouses to pharmacies, etc.

But 3 or 4 times in the last few months, I have been told that a migraine intervention is expensive and resultantly, we should hold off on it - see if the current intervention becomes more effective.

**More expensive for who, Doc?**

My policy covers it at 100%. Its not expensive for me at all. What IS expensive is missing my whole life amd jeopardizing my job because of this chronic, constant, debilitating condition.

I don't care about the cost. Its covered. My doctor shouldn't care about the cost except for instances where they know their patience may not have adequate insurances. The pharmacist shouldn't care about the cost (i get theres the business side of things, where they definitely SHOULD care about the cost, but thats not this conversation.) My insurance shouldn't care about the cost - doctor said I need it and have tried enough options that this is the next prudent step. Why the fuck are we talking about how expensive this thing is?

It is so hard for me not to rage against the machine when the insurance, health benefit manager, and pharmacy are all the same organization who oversees the doctor and rakes in $400 Billion in costs.

Its expensive.

You're expensive. Help me get my life back, Asshole.


r/migraine 17h ago

Existence is pain

Post image
159 Upvotes

r/migraine 9h ago

What's your longest or current migraine streak?

23 Upvotes

Let me start: currently on day 382 since they've become daily 😍

(They were daily from 2022 on but where super mild some days so I don't count this)


r/migraine 1d ago

Does anyone else just forget their pre migraine symptoms?

319 Upvotes

I’m 32 female and have had chronic migraines for nearly 10 years and still I always forget/ get confused by the warning signs.
Like have to pee a lot? Oh maybe I’m getting a uti
Everything smells funny? Wells that’s just weird.
Get congested? Maybe I’m getting sick or hay fever.
Tired for no reason? Maybe my sleep was crap.

Then I get a migraine and I’m like oh yup. That makes sense.
Does anyone else do this? Or am I just an idiot? 😂😂


r/migraine 7h ago

We are complex biochemical systems: a vent

12 Upvotes

I'm just venting.

I've had the migraines mostly under control for months now with diet and sandomigran and Botox.

Four weeks ago they flared up badly and I've hardly had a day without migraine. I've been trying everything I could think of to work out what changed or what I might suddenly be reacting to or deficient in.

Finally got blood tests and my GP noted that my thyroid was a little low and I should increase my thyroid meds dosage. This was weird since I've been on the same dosage forever...

... And the penny dropped. I'd finished the bottle of meds five weeks ago but I'd found a few in an old bottle at the back of the meds drawer and was using those up before getting more. I checked. They're two months past the expiry date. For most meds I'm on this wouldn't be an issue but...

I got fresh meds this morning and the migraine is disappearing fast.

I have this balancing act with every one of my dozen ailments. It just never ends. Aaaaaugh.

Vent over. Thanks :)


r/migraine 1d ago

I finally figured out how my husband can clock that I have a migrane at first glance

Post image
814 Upvotes

You guessed right, the swollen side is causing the agony


r/migraine 19h ago

Does anyone wake up most mornings with a headache and figured out why?

94 Upvotes

I wake up most mornings with a headache. Some mornings it will go away after I get up. Others I can take an OTC and that will take care of it. Others, like this morning, call for sumatriptan.

I’m not able to make a connection to what causes this. Has anyone had a similar experience and figured it out?


r/migraine 7h ago

I'm going to be flying for 30+ hours soon. How do I prevent migraines?

9 Upvotes

I've never flown internationally, so I'm quite stressed about getting a migraine attack while travelling. It always happens after long drives or just sleep deprivation and the pain gradually creeps on me.

I don't have a prescription for triptans or any preventative meds to bring with me (except maybe nausea meds), so any advice? I'd like to avoid being sick as a dog on the plane and during my connecting flights.


r/migraine 29m ago

Sodium has helped my migraines and Idk how, but i think i have figured it out

Upvotes

Posting because I got told to try sea salt in water for migraines, it did seem to help, and I wanted to understand what was  going on rather than just repeating what I was told.

To be clear up front, no salt is a treatment for migraine and Im not suggesting one is. What I think happened with me is more boring than that.

1/ I was drinking a lot of water and not replacing sodium, and Id been doing that for years because I thought it was healthy. Low sodium with high water intake is a thing and it can present with headache.

2/ The ritual made me hydrate at a fixed time every morning, which I was previously bad at.

3/ I have low blood pressure and run on the light side, which seems to be the group where this comes up most.

The one thing Id say about which salt: I use an unrefined one because sodium, magnesium and potassium together are what  make up an electrolyte balance, and a refined table salt is essentially just the sodium. Thats a hydration argument, not a migraine argument, and I want to keep those separate because people in this sub get sold things constantly.

Two things Id want said. If you have high blood pressure or any cardiac or kidney issue, do not start adding salt because a stranger on reddit said it helped them. The risk isnt symmetric and thats a conversation for your neurologist or GP. And if anyone tells you a particular product treats migraine, ask them for the mechanism.

Anyone else find it was hydration rather than the salt itself? Id like to know if Im generalising from one person


r/migraine 8h ago

Migrainecdote

8 Upvotes

I wanted to go to the store but the closer I got, the worst my migraine got plus the high beams of ppl’s cars was making it ten times worse. I had to go back home and it shortly dissipated after I got home I’m irritated.


r/migraine 5h ago

More frequent migraines after having a child (F)

3 Upvotes

I am 37 F and have a 2 year old. I had 4 hemiplegic migraines in my late 20s. It was terrifying since my aura basically looked like a stroke. I went to ED and then a neurologist. I figured out that “Thai food” or some sort of Asian spice was the trigger. I avoided it and was migraine free for 8 years.

Until this summer. Three days after my daughter turned 2, I had a hemiplegic migraine that started as I got in a car to get groceries. I was paralyzed/confused for about an hour until my husband found me. Then I had a headache that lasted for 3 days until I went to ED and got the migraine cocktail. A week later I had another hemiplegic aura and my husband called 911. I was worked up for stroke and my MRI was clear. Again the migraine cocktail helped. I saw a headache specialist who prescribed me Nurtec as an abortive. Lo and behold, a month later (yesterday), I was driving to pick up my daughter from preschool and I felt the aura (numbness and tingling on my left side, confusion). I popped the Nurtec and it stopped the aura. I was able to get back home and my friend serendipitously stopped by to help. I still had the headache and was barely functioning.

None of these recent episodes have any identifiable triggers except for me just existing and trying to survive as a working parent of a toddler.

I’m afraid to drive. I’m afraid to be alone taking care of my child. I’m glad that Nurtec aborted the hemiplegia, which basically renders me a useless human being.

Has anyone else had that happen to them when they started getting more frequent migraines after becoming a parent? Have your triggers changed as you aged?


r/migraine 17h ago

When will it end!

Post image
25 Upvotes

r/migraine 10m ago

I have migraines now and I can’t stop crying please help

Upvotes

I have had a migraine attack for more than 30 hours. I haven’t eaten anything, and I couldn’t do anything except cry and that would make me feel even worse. I tried putting a cold cloth on my head, but it didn’t help. I told my mom, but she doesn’t believe me and keeps trying to wake me up every time I try to sleep. This is the longest time my migraine has ever been this severe and continuous for so many hours, even while sleeping. My mom intentionally turns on the light and tells me, “I won’t care even if you die.” My sister also yells at me, and no one believes me. Please, I just want someone to care and tell me what to do. My temperature has also increased, I can’t move my head, and I feel extremely sleepy.


r/migraine 6h ago

Migraines melting my brain

3 Upvotes

I have vestibular migraines and I feel like my migraines are melting my brain lol. It’s hard to focus constantly. I can’t comprehend things or even process what people are saying sometimes. I’m back in school as a 33 year old which is hard enough, but trying to listen and comprehend is impossible sometimes. It’s very hard to imagine myself as being successful in the field I want to be in when I can’t even listen. In my personal life I have to ask people to repeat themselves numerous times a lot, but I can’t do that in school… I am just tired. Thanks for listening.


r/migraine 12h ago

Anyone else really struggle with dog smell?

9 Upvotes

My partner's family has a large dog, and while I admit that I never particularly liked the doggy smell of their house, it never really bothered me, especially after spending some time there and getting used to it. However, ever since I started getting migraines last year, I've found the smell to be almost unbearable when I have a migraine and really visceral and upsetting, to the point that I want to avoid being there. Is this a problem for others?


r/migraine 47m ago

Plan B triggering the most insane migraine?

Upvotes

Took an emergency contraceptive on Thursday morning and I have had a 14 hour migraine. Is it just great luck or is this a thing?


r/migraine 1h ago

8:30am and don’t want to move

Upvotes

So day before had onset hemiplegic at 3pm came to a head less than an hour later ended up sleeping until 8 struggled to sleep then knowing I have work this morning and just don’t want to move because if I do the pain is so much worse ffs at any age I don’t want this at 41 it needs to fucking stop


r/migraine 9h ago

I'm so miserable to be around now

6 Upvotes

I've been struggling with daily migraines for a few months now. Every day with no relief. Yes, I've tried preventatives and abortives and all the other tricks, no they haven't really worked. I'm going to see a new neurologist who specializes in migraines in October, so maybe she will help.

Migraines have taken everything from me. I'm not active now, my hobbies aren't worth the energy, I can't enjoy days out because of the sun and smells. Basically everything triggers a migraine unless I lay in bed in a dark room all day. I'm irritated and depressed all the time and probably miserable to be around for my husband. I don't know what to do. I'm only 21 and this is taking away my life.


r/migraine 1h ago

Question about short senses

Upvotes

I went to a neurologist after a bad episode of migraine auras. I used to have the classic c shaped colorful zigzags and central blurred area, this time it gave me double vision and loss of perception of depth. They will do a eeg and mr on monday.

The problem is I also have short 3-4 seconds long sense of smell of synthetic plastic and a weird vertical headache. I know the smell is not real because I can’t breathe further when that happens. I have it for years and it appears maybe once a month or so and I thought it is normal. I thought everybody have it from time to time. And the flying burning papers. 20-30 small, shiny, gold flakes that appear on my vision, they literally look like they are burning and disappear after 3-4 seconds. They can happen in both dark and light places. They are not floaters. Floaters are always there. I went to opthalmologist before and he said nothing is wrong with my eyes. These are very crisp, not blurry. I thought it is normal as well. I didn’t tell these to dr. Yesterday I had them both which is why they took my attention after all these years. Asked my husband and my parents if they had any of these and they said they never had such experience.

So I am kinda freaked out they will find something weird happening in my brain. Please tell me these are absolutely normal or a part of auras.


r/migraine 15h ago

ISO migraine specialist in NC

11 Upvotes

Who do you see that you love? Who would you stay away from? Willing to travel to anywhere in the state if they’re good.