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Understanding
Headaches & Migraine

A Global Initiative by Kōkūn

Headache disorders like migraine affect billions of people globally, yet the daily reality of living with them often remains invisible.

Your Experience Holds the Key

Take this 5–10 minute anonymous survey and help make the invisible visible.

Kōkūn is fiscally sponsored by Social Good Fund, a non-profit organization registered in the United States. Learn more at www.kokun.space.

How old are you?

Please select an option to continue.

Do you experience recurring headaches* or migraine?

*specifically a headache disorder or diagnosed condition that causes headaches

Please select an option to continue.

Please think back to when your headaches or migraine were at their peak and answer the following questions as you would have during that time.

Thank you for your interest!

The Understanding Headaches & Migraine research is currently only for adults (18+) living with recurring headaches or migraine.

You can still help.

Make migraine and other headache disorders more visible by sharing this survey with your friends and family around the world.

Kōkūn is fiscally sponsored by Social Good Fund, a non-profit organization registered in the United States. Learn more at www.kokun.space.

Background Symptoms Diagnosis Treatment Experience

Which of the following best describes you?

Please select an option to continue.
Background Symptoms Diagnosis Treatment Experience

Were you assigned female at birth?

Why this data matters

Headaches and migraine disproportionately affect people assigned female at birth, and hormonal factors may influence the pathway to diagnosis and treatment.

Please select an option to continue.
Background Symptoms Diagnosis Treatment Experience

Which of the following best describes your ancestry?

These ancestry categories reflect major genetic population groups. Please choose the option(s) that feel closest to how you identify. You can also self-describe on the next page.

Select all that apply.

European (e.g. British, Irish, Central & Eastern European, Greek, Balkan, Italian, Maltese, Nordic, Spanish, Portuguese, Western European, Ashkenazi Jewish, etc.)
Central & South Asian (e.g. Afghan, Kazakh, Indian, Pakistani, Bengali, Sri Lankan, Maldivian, Nepali, etc.)
Indigenous Peoples of the Americas (e.g. American Indian and Alaska Native, First Nations, Inuit, Métis, Maya, Quechua, Aymara, Mapuche, Nahua, etc.)
East Asian (e.g. Chinese, Vietnamese, Japanese, Korean, Filipino & Austronesian, Indonesian, Thai, Khmer, Myanma, Chinese Dai, Manchurian, Mongolian, Siberian, etc.)
Sub-Saharan African (e.g. Ghanaian, Nigerian, Sudanese, Ethiopian, Kenyan, Rwanda, Mbuti, Congolese, Angolan, etc.)
Western Asian & North African (e.g. Arab, Egyptian, Levantine, Moroccan, Libyan, Turkic, Iranian, Armenian, etc.)
Prefer to self-describe
You can do this on the next page.
Prefer not to answerSelecting this will clear previous selections.
Please select at least one option.
Why this data matters

Research has not always reflected the full diversity of people living with headaches and/or migraine. This data helps us identify participation gaps and understand how experiences may differ across communities.

Background Symptoms Diagnosis Treatment Experience

We'd love to know more about your ancestry and/or cultural identity.

Please describe your background, or go back and select a different option.
Why this data matters

Research has not always reflected the full diversity of people living with headaches and/or migraine. This data helps us identify participation gaps and understand how experiences may differ across communities.

Background Symptoms Diagnosis Treatment Experience

Where are you located?

Required.
Why this data matters

Location (rural vs. urban, climate patterns, geographic region, etc.) can impact incidence of headaches and available care.

Background Symptoms Diagnosis Treatment Experience

What is your highest level of education?

Please select an option.
Background Symptoms Diagnosis Treatment Experience

What is your current work or employment situation?

Select all that apply.

Working full-time
Working part-time
Self-employed, freelance, or consulting
Student
Homemaker or unpaid caregiver
Retired
Not currently working and looking for work
Not currently working due to disability or health reasons
Not currently working for another reason
Prefer not to answerSelecting this will clear previous selections.
Other
Please select at least one option.
Why this data matters

The type of work you do can help us understand whether specific circumstances (shift work, schedule flexibility, healthcare access, healthcare literacy) affect your path to diagnosis and care.

Background Symptoms Diagnosis Treatment Experience

Which of the following best describes your main work or occupation?

Select all that apply.

Management, business, finance, or administration
Healthcare or social care
Education, research, or library services
Science, technology, engineering, data, or product
Legal, government, policy, or public service
Arts, media, design, writing, entertainment, or sports
Marketing, communications, advertising, or public relations
Sales, business development, or customer service
Food service, hospitality, tourism, retail or events
Personal care, caregiving, wellness, or community services
Skilled trades, construction, maintenance, or repair
Manufacturing, production, transportation, logistics, or warehouse work
Agriculture, forestry, fishing, or environmental field work
Military, protective services, or emergency response
Prefer not to answerSelecting this will clear previous selections.
Other
Why this data matters

The type of work you do can help us understand whether specific circumstances (shift work, schedule flexibility, healthcare access, healthcare literacy) affect your path to diagnosis and care.

Please select at least one option.
Background Symptoms Diagnosis Treatment Experience

Does any other aspect of your identity shape your experience with migraine?

This could include things like your sexual orientation, parental status, or anything else that feels relevant to your experience.

Background Symptoms Diagnosis Treatment Experience

Do you know what type of headache do you experience?

Select all that apply.

Migraine
Tension-type headache
Cluster headache
Medication-overuse headache
Sinus headache
I do not knowSelecting this will clear previous selections.
Other (specify)
Please select at least one option.
Background Symptoms Diagnosis Treatment Experience

What type of migraine do you experience?

Select all that apply.

Migraine with aura
Migraine without aura
Chronic migraine (15+ days/month)
Migraine with brainstem aura
Vestibular migraine
Abdominal migraine
Hemiplegic migraine
Hormonal or Menstrual migraine
Cyclical Vomiting Syndrome
I do not knowSelecting this will clear previous selections.
Other (specify)
Please select at least one option.
Background Symptoms Diagnosis Treatment Experience

How long have you been experiencing headaches?

years
months
Please enter a valid number of years and/or months.
Why this data matters

This is a measure of how disruptive headaches can be. From the occasional episode to the constant burden, we recognize that the impact is significant.

Background Symptoms Diagnosis Treatment Experience

On average, how often do you experience headaches?

per
month
week
month
year
Please input a positive frequency count.
Invalid limit: Maximum 7/week, 31/month, 365/year.
Why this data matters

This is a measure of how disruptive headaches can be. From the occasional episode to the constant burden, we recognize that the impact is significant.

Background Symptoms Diagnosis Treatment Experience

How many days in the last month did you experience a headache?

days
Please enter a number between 0 and 31.
Why this data matters

This is a measure of how disruptive headaches can be. From the occasional episode to the constant burden, we recognize that the impact is significant.

Background Symptoms Diagnosis Treatment Experience

When you have a headache, how much does it usually affect your ability to function?

Please select an option.
Why this data matters

The impact of headaches extends far beyond pain. It shapes our daily lives in meaningful ways that often go unseen.

Background Symptoms Diagnosis Treatment Experience

Quality of Life Impact

For each statement below, please select the response that best describes your experience.

a. In the past 4 weeks, when you had headaches, how often was the pain severe?

Required.

b. In the past 4 weeks, when you had headaches, how often did it limit your ability to do usual daily activities including household work, work, school or social activities?

Required.

c. In the past 4 weeks, when you had headaches, how often did you wish you could lie down?

Required.

d. In the past 4 weeks, how often have you felt too tired to do work or daily activities because of your headaches?

Required.

e. In the past 4 weeks, how often have you felt fed up or irritated because of your headaches?

Required.

f. In the past 4 weeks, how often did headaches limit your ability to concentrate on work or daily activities?

Required.
Why this data matters

The impact of headaches extends far beyond pain. It shapes our daily lives in meaningful ways that often go unseen.

Background Symptoms Diagnosis Treatment Experience

Have you been diagnosed with any other health conditions?

Check all that apply. Selecting main categories will show sub-options.

Pain/Injury
Fibromyalgia
Chronic Back Pain/Neck Pain
Other Chronic Musculoskeletal Pain
Ehlers-Danlos Syndrome/hypermobility
Chronic Pelvic Pain
TMJ
Concussion, traumatic brain injury (TBI), or other significant head injury
Other pain (please specify)
Gut
Irritable Bowel Syndrome (IBS)
Inflammatory Bowel Disease (IBD) e.g. Crohn's, Ulcerative Colitis
GERD
Celiac disease
Other Gut issues (please specify)
Hormonal
Endometriosis
Menopause
Pre-menopause/peri-menopause
Infertility/Difficulties with conception
PCOS/PMOS
PMDD
Low testosterone
Other hormonal issues (please specify)
Allergic
Asthma
Allergies
MCAS
Other allergic issues (please specify)
Mental health
Anxiety
Depression
ADHD
Autism Spectrum Disorder
Stress/Burnout
Other mental health issues (please specify)
Neurologic
Stroke/Transient Ischemic Attacks (TIA, "mini-stroke")
Epilepsy/Seizure disorder
Multiple Sclerosis or Other Demyelinating Disease
Vestibular disorder/Ménière's disease
Sleep Disturbance: Difficulty falling or staying asleep or Insomnia
Hypersensitivity to sights, sounds, smells, and/or chemicals, etc.
Other neurologic issues (please specify)
Cardiovascular-Metabolic
High blood pressure (hypertension)
Heart disease
Heart Attack
High cholesterol or high triglycerides
Patent foramen ovale (PFO)
Dysautonomia
POTS
Diabetes or Pre-Diabetes
Hyperthyroidism (e.g. Graves disease)
Hypothyroidism (e.g. Hashimoto's)
Other cardiovascular/metabolic issues (please specify)
Autoimmune Disorders (please specify)
Cancer (please specify)
I have not been diagnosed with any other conditions Selecting this will clear previous selections.
Other (please specify)
Prefer not to answerSelecting this will clear previous selections.
Please select at least one option to continue.
Why this data matters

Migraine and headache disorders rarely occur in isolation. Understanding which conditions co-occur helps researchers identify patterns, shared biological mechanisms, and more effective, holistic treatments.

Background Symptoms Diagnosis Treatment Experience

Do you have a formal diagnosis for your headache?

Please select an option.
Background Symptoms Diagnosis Treatment Experience

Who diagnosed you?

Please select who diagnosed you.
Background Symptoms Diagnosis Treatment Experience

How long did it take from first symptoms to getting a diagnosis?

Years
Years
Months
Please enter a valid timeframe.
Background Symptoms Diagnosis Treatment Experience

How satisfied are you with your headache care?

Please enter a response to continue.
Please select a satisfaction rating.
Background Symptoms Diagnosis Treatment Experience

What were your barriers to getting a diagnosis, if any?

Check all that apply. Selecting main categories will show sub-options.

Didn't think I needed to get a diagnosis
My symptoms didn't seem serious
My symptoms weren't impacting my day-to-day life
Thought it wasn't a big deal. That it was just a headache
People around me didn't think it was serious
I was taught to push through pain
Thought it would pass on its own
Didn't realize some headaches needed medical care
Thought I could manage on my own
Wanted to handle it myself
Preferred trying home remedies first
Had found ways to manage my symptoms
Didn't think medical care would help
Don't like seeing doctors unless I really need to
Don't like my doctor
Experienced life and logistical barriers
Was too busy / other priorities
Couldn't take time off work
Work schedule made it difficult
Caregiving / family responsibilities took priority
Didn't have support to prioritize care
Didn't have energy or capacity to deal with it
Overwhelming logistics (travel, scheduling)
Encountered cost or insurance barriers
Couldn't afford care or treatment
Didn't have medical insurance
Insurance coverage was limited
Didn't want to spend the money
Had trouble finding the right care or provider
Lack of local or covered providers
Hard to get appointments with provider of choice
Long wait times for appointments
Didn't know how to find the right provider
Didn't know how to get a diagnosis
Fear/unease about diagnosis or treatment
Was afraid of being diagnosed with something serious
Didn't want medications/medical treatment
Felt anxious about what diagnosis or treatment might involve
Had negative experiences before
Was worried about stigma or judgment
Worried others would think I was exaggerating
Didn't want to be seen as weak or complaining
Felt my doctor wouldn't take me seriously
Felt uncomfortable talking about symptoms
Tried getting a diagnosis without success
Had tried to get care but didn't get answers/relief
Was tired of trying to get an answer/relief
Was misdiagnosed
Different providers gave conflicting guidance
Felt dismissed and gave up
Had difficulty communicating with providers
Didn't experience any major barriers to diagnosis Selecting this will clear previous selections.
Other (specify)
Please select at least one barrier.
Why this data matters

Diagnosis for headaches is often delayed—sometimes by years. Understanding what barriers you faced and how you overcame them helps us understand what needs to change.

Background Symptoms Diagnosis Treatment Experience

What helped you overcome these barriers and get diagnosed?

Why this data matters

Diagnosis for headaches is often delayed—sometimes by years. Understanding what barriers you faced and how you overcame them helps us understand what needs to change.

Background Symptoms Diagnosis Treatment Experience

What are the main reasons you haven't sought a formal diagnosis?

Check all that apply. Selecting main categories will show sub-options.

Don't think I need to get a diagnosis
My symptoms don't seem serious
What's the big deal? It's just a headache
People around me don't think it is serious
I was taught to push through pain
My symptoms aren't impacting my day-to-day life
It will pass on its own
Prefer to manage on my own
Want to handle it myself
Prefer home remedies
Have found ways to manage my symptoms
Don't think medical care will help
Don't like seeing doctors unless I really need to
Don't like my doctor
Experienced life and logistical barriers
Too busy / other priorities
Can't take time off work
Work schedule makes it difficult
Caregiving / family responsibilities have taken priority
Overwhelming logistics (travel, scheduling)
Don't have support to step away
Don't have energy or capacity to deal with it
Encountered cost or insurance barriers
Can't afford care or treatment
Don't have medical insurance
Insurance coverage is limited
Don't want to spend the money
Have trouble finding the right care or provider
Lack of local or covered providers
Hard to get appointments with provider of choice
Long wait times for appointments
Don't know how to find the right provider
Don't know how to get a diagnosis
Fear/unease about diagnosis or treatment
Am afraid of being diagnosed with something serious
Anxious about what diagnosis or treatment might involve
Don't want medications/medical treatment
Have had negative experiences before
Am worried about stigma or judgment
Worried others will think I am exaggerating
Don't want to be seen as weak or complaining
Feel my doctor won't take me seriously
Feel uncomfortable talking about my symptoms
Tried getting a diagnosis without success
Have tried to get care but didn't get answers/relief
Was misdiagnosed
Different providers have given conflicting guidance
Had difficulty communicating with providers
Felt dismissed and gave up
Am tired of trying to get an answer/relief
Other (specify)
Please select at least one reason.
Why this data matters

Many people never pursue formal diagnosis. Your answers help us understand why—is it systemic barriers, personal preferences or other factors —and what, if anything, needs to change.

Background Symptoms Diagnosis Treatment Experience

What would have to change for you to consider getting a formal diagnosis?

Please enter a response to continue.
Why this data matters

Many people never pursue formal diagnosis. Your answers help us understand why—is it systemic barriers, personal preferences or other factors —and what, if anything, needs to change.

Background Symptoms Diagnosis Treatment Experience

What headache treatments are working for you?

Select all that apply.

Medications (painkillers, triptans, preventives, Botox...)
Neuromodulation devices
Supplements / nutraceuticals
Cognitive Behavioral Therapy (CBT) or talk therapy
Complementary approaches (yoga, meditation, acupuncture...)
Lifestyle changes (sleep, hydration, triggers...)
Not currently treating Selecting this will clear previous selections.
Other (specify)
Required.
Why this data matters

Many clinical treatments exist for headaches. But what matters most is what actually works in practice.

Please select at least one treatment option.
Background Symptoms Diagnosis Treatment Experience

What headache treatments did not work for you?

Select all that apply.

Medications (painkillers, triptans, preventives, Botox...)
Neuromodulation devices
Supplements / nutraceuticals
Cognitive Behavioral Therapy (CBT) or talk therapy
Complementary approaches (yoga, meditation, acupuncture...)
Lifestyle changes (sleep, hydration, triggers...)
None / Not applicable Selecting this will clear previous selections.
Other (specify)
Required.
Why this data matters

Many treatments exist for headaches and migraine. But what matters most is what works in practice.

Please select at least one option.
Background Symptoms Diagnosis Treatment Experience

Confidence & Management

a. How confident do you feel in understanding your headaches?

Required.

b. How confident do you feel about managing your headaches?

Required.
Why this matters

Your answers help us understand if the available care and support options are effective and working for people.

Background Symptoms Diagnosis Treatment Experience

How would you describe where you are in your journey with your headaches?

Why this matters

Your answers help us understand if the available care and support options are effective and working for people.

Please select an option.
Background Symptoms Diagnosis Treatment Experience

What have been the biggest challenges in getting care?

Check all that apply. Selecting main categories will show sub-options.

Finding the right care or provider
Hard to find the right specialist/provider
Lack of local or covered providers
Hard to get appointments with provider of choice
Long wait times for appointments
Had trouble getting follow-up care
Had to see multiple providers before finding helpful care
Provider interaction challenges
Didn’t feel heard by provider(s)
Felt dismissed by provider(s)
Felt provider(s) lacked migraine knowledge
Had communication issues with provider(s)
Different providers gave conflicting guidance
Appointments were too short or rushed
Had trouble coordinating care across providers
Treatment challenges
Didn’t think treatment would help
Didn’t want medications/medical treatment
Treatment was too trial-and-error
Treatments did not provide enough relief
Medications had side effects that were hard to manage
Had difficulty sticking with treatment plans
Didn’t know which treatments to trust or prioritize
Life and logistical barriers
Too busy / other priorities
Couldn’t take time off work
Work schedule made it difficult
Caregiving or family responsibilities took priority
Overwhelming logistics (travel, scheduling)
Didn’t have enough support to prioritize care
Didn’t have energy or capacity to deal with it
Cost or insurance barriers
Couldn’t afford care or treatment
Did not have medical insurance
Insurance coverage was limited
Had difficulty getting treatment approved
High out-of-pocket costs
Emotional burden or burnout
Worried about stigma or judgment
People around me didn’t think it was serious
Didn’t want to be seen as weak or complaining
Feel uncomfortable talking about my symptoms
Felt isolated or unsupported
Felt discouraged after unsuccessful treatment
Felt exhausted from trying different approaches
Managing migraine care was emotionally draining
Am no longer actively seeking care
Haven't faced any major challenges with my care
Other (specify)
Why this data matters

After diagnosis comes the real work: finding care that actually helps. Your experience reveals what's effective and what needs to change.

Please select at least one challenge.
Background Symptoms Diagnosis Treatment Experience

Have you ever felt dismissed or not taken seriously by provider(s) treating your headaches?

Why this data matters

How a provider interacts with you affects whether you trust healthcare systems, stick with treatment, or seek help in the future. Your experience can reveal how critical this gap is.

Please select an option.
Background Symptoms Diagnosis Treatment Experience

What's one thing that would meaningfully improve your headache experience going forward?

Required field.
Why this matters

Your previous answers help us understand what’s not working with your care. This helps us understand what would fundamentally transform it.

Once you submit the survey, you will not be able to access or edit your responses.

Stay Connected.
Thank you for contributing to this research. Enter your details below to:

  • See how your experience compares to others
  • Receive key findings from this research
  • Get updates on tools we are building for you
  • Access evidence-based resources from Kōkūn
  • Shape future headache and migraine research

The details you enter below will not be connected to your survey responses. The survey you just submitted is completely anonymous. This information helps us tailor insights, updates, and future research opportunities to your local context and condition. You can unsubscribe anytime here.

Please enter your email.
Please enter a valid email address (e.g. name@domain.com).
Please select your country.
Please select your headache type.

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You never know who else might be experiencing headaches in silence.


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