by elisa.berger -

Evaluating survey about migraine

In the last post I created a short survey with the goal to find out more about the different individual experiences of migraine and gather more information about struggles and possible tools and solutions.

Participants

After creating the survey with nine questions on SurveyMonkey I shared it with people I know that also suffer from migraine with or without aura. During the peer review in class a fellow student told me that they could share this survey with a friend as well. So in total, I collected answers from six participants.

Evaluation of results

Visual aura

Half of the participants experience an aura, while one person just experiences it sometimes and one particpant doesn’t.

In this survey zig-zag lines or flashing lights and temporary vision loss e.g. blind spots are experienced by 67%. Difficulty speaking or and other symptoms were experienced by 33%. The two people responded with “Other” specified their answer in their own words. One of them mentionend that prior to their migraine led lights have a multiplier effect. If they see them during or after an tattack they see bright colors with something close to the shape of the tiny lights all over the place. Another response was they perceive a change of taste, a weird sensation in the mouth/saliva.

Biggest pain

The answers about the most difficult part of living with migraines show similiar topics. Some contestants stated that not being able to predict or control a migraine attack as the worst. Others mentioned the enduring headache pain or sufferment for two days. While other participants explained that feeling paralysed, uncapable physically and mentally and not being able to speak, think or work is their biggest pain point. One person also wrote that sleep is the only effective “medicine” for them although sleeping during an attack hurts.

Migraine prevention

Two people knew about the importance of regular meals and sleep routines. One person mentioned their diet. Two participants said that they try to drink lots of water and to take it slow and taking enough breaks. One also takes magnesium supplements. Another responded that they avoid strong lights such as cars at night while driving or the light of screens.

One person answered that they don’t do anything to prevent attacks anymore. They used to take pills especially for migraines as soon as they noticed the beginning of a migraine. But this wasn’t a guaranteed help.

Influenced life areas by migraine

The area that was the majority of 66% of participants voted for is the career/ productivity. On second place is mental health, followed by social life and family life. One person specified their answer with “struggles and stress” although this could be generalized with the mental health area.

Migraine tracking

Four migraine patients don’t track any of their symtoms or pain days. One person answered that they used to but currently doesn’t and only one of the six participants actually uses an App called “Garmin connect”.

Feeling understood by non-migraineurs

The majority doesn’t feel understood by people who don’t suffer from migraines. 50% answered with “disagree” and 33% with “strongly disagree”. One person gave a neutral rating.

However, 67% “strongly agreed” with the helpfulness of talking to migraineurs and 33% with “agree”. Showing that all of them appreciates sharing or listening to other people with migraine.

Preferred medium for a migraine aura simulation

The majority (83%) prefers an inmersive art installation for a simulation of migraine aura. Followed by VR on second place (50%).

One person added a comment that they think it’s essential that the simulation could be experienced at random, unexpected moments like in a meeting, at school, at university, on a date or at an event.

And one migraine paitient responded that they would be afraid that these simulations would trigger an attack.

Interpretation of the results

The survey results highlight a significant “empathy gap” between migraineurs and society . While participants struggle most with the unpredictability and physical paralysis of attacks, they feel largely misunderstood by those around them who have never had an attack.

Besides, an interesting finding is that tracking methods (apps or Websites) are not used, suggesting a need for more seamless or rewarding monitoring.

All of the participants value peer-to-peer connection which could indicate that community-based solutions could be more effective than isolated self-management.

The high interest in an aura simulation, specifically one that mimics the unexpected timing of an attack, reflects a desire to communicate the loss of control that defines the condition.

Limitation of this survey

For future reserach more participants would have to answer the questions to offer significant quantitative results and to prove the mentioned findings.

Tool

I realized during the creation of the survey that the free version of the SurveyMonkey tool only offered nine questions and no questions with answers in Likert scale format. However, I found a way to work around these limitations and create a short version of my survey.

by elisa.berger -

Not just rainbows and pretty patterns

This week I dived into research about the neurological disorder to gain a better understanding of it.

Challenges

When researching about a health-related topic, I’ve faced some obstacles while trying to do a superficial research. While writing my Bachelor thesis I learned the importance of understanding that I as a Designer won’t be able to understand every information I come across since most sources are of the medical and therefore full of latin and scientific terms that are hard to understand. But the lesson I learned is to never forget the reason of why I am reading those scientific papers in the first place. The goal isn’t to understand every single detail but to gather a basic understanding of the topic. This base will then enable me to proceed with more knowledge about it and continue with the Design work. As I started reading papers about migraine I kept reminding myself to remember this lesson in order to prevent myself from feeling too lost in detailed sections. Trying to be selective with my sources is also helpful since I am the person choosing them and deciding which sources or sections are diving too deep into neuroscience.

With this in mind I started asking myself which questions could be relevant for a superficial investigation and collected following results:

Terminology

The word migraine comes from the Greek word hemikrania which means half of a skull. This term was then translated to French: migraine. The reason is that the pain affects one side of the head. [1]

The phases of a migraine attack

A migraine attack is usually characterized by four different phases: [2],[3]

  1. Prodome: occurs hours or days (as early as 3 days) before the headache phase, including symptoms such as appetite changes, thirst, yawning, etc.
  2. Aura: appears immediately before the headache (usually flickering lights, blurred vision,…)
  3. Headache: pain phase (usually pulsating)
  4. Postdrome: after an attack characterized by non-headache symptoms such as cognitive deficits, fatigue, and others

What surprised me most is that the first phase already begins before the one-sided headache pain even starts. The symtoms that are described such as yawyning, appetite changes or thirst also don’t indicate clearly that a migraine attack is about to start. If a person that is menstruating would analyze their symtoms it wouldn’t be easy to identify whether it is due to a migraine or their menstruation. Even mood changes are reported as a symtom which would also cause the same problem.

Migraine can be classified into two categories: Migraine with aura and Migraine without aura.

Visual aura: occurs in approximately 15–33% of patients affected by migraine attacks. I would like to elaborate more on this topic as it is one important aspect of this complex neurological disorder.

Sensory aura: Perceived as pins-and-needles tingling or numbness starting in the lips/tongue, face, or hand, spreading slowly to the arm or body. Positive sensations dominate, feeling like a wave of prickling.

​Speech/language aura: Difficulty finding words, slurring or fluent but nonsensical speech, often unilateral and concurrent with other auras

How does visual aura look like?

The experience of visual aura differs. Some people perceive:

  • Zig-zag patterns
  • Sawtooth patterns (see picture below)
  • Geometric shapes
  • Stars
  • Scintillating scotoma (shimmering blind spot that expands)

Image 1: Sawtooth wave form

Some migraineurs experience blind spots or temporary vision loss. (e.g. when I thought I was going blind during sports class). It often begins in the center or periphery of vision and spreads graduall, resembling a so-called “fortification spectrum” or wavy lines.

Example of a migraine aura: This picture illustrates the typical gradual expansion of a migraine aura along with the characteristic fortification spectrum.

The visualizing of aura

When I tried to look for images that depict a migraine’s aura I was a bit underwhelmed. Most of the edited images or drawings create a rather aesthetic looking effect.

The warm colors of this image combined with the pastel and colorful lines create a happy and warm mood. For me as someone who experiences visual aura regularly this image is rather irritating and I wouldn’t associate it with migraine.

This image does illustrate a blind spot that is blocking the viewer’s sight but the colorful elements next to it again are more similar to a beautiful rainbow than an overwhelming sight loss.

It was a challenge to find a realistic depiction that didn’t leave me with a weird feeling while looking at it. A negative consequence could be that viewers might come to the conclusion that visual aura looks harmless and is actually aesthetic.

After reading more neuroscientific research articles I started searching with scientific keywords such as “fortification spectrum” and then found images that resembled my visual aura more.

Conclusion

When sharing experiences about migraine attacks I often struggle with explaining the visual part of it and how deeply it actually it hurts to see those flashing lights. Since you are the only person it is visible for it is hard to describe, especially since it is related to so much discomfort and pain. Now that I learned that migraineurs report different visual aura I feel intrigued to look more into this topic. It could be interesting to ask people that have perceived visual aura to describe it and have a look at aura simulations. As I am personally affected I could even try to visualize my aura myself and aim for a more realistic draft without embellishing it.

References

  • Rose FC. The history of migraine from Mesopotamian to Medieval times. Cephalalgia. 1995 Oct;15 Suppl 15:1-3.
  • Vollesen AL, Benemei S, Cortese F, et al. Migraine and cluster headache – the common link. J Headache Pain 2018; 19: 89.
  • Stankewitz A, Aderjan D, Eippert F, et al. Trigeminal nociceptive transmission in migraineurs predicts migraine attacks. J Neurosci 2011; 31: 1937–1943.
  • Dongen, Robin & Haan, Joost. (2019). Symptoms related to the visual system in migraine. F1000Research. 8. 1219. 10.12688/f1000research.18768.1.

Images

Migraine with Aura: An Overview
Person holding their head in pain showing and covering their face in them.
by elisa.berger -

In(visible) disease – migraine: raising awareness and designing solutions for migraine patients

Is this what going blind feels like?

During physical education class in fifth grade I thought I was going blind. From one second to the next, I couldn’t see my friend’s face anymore. I could still hear her talking but some weird lights started appearing in front of my eyes which followed my gaze everywhere I looked and were blocking my sight. They made me feel nauseous and I started panicking. “I can’t see you anymore.” was all I was able to say in that moment. My friend first was confused, then scared and everyone started panicking. I had to sit down and drink water but while everyone was asking me questions I couldn’t answer I realized that even closing my eyes made me feel sick and disoriented. I lost my ability to speak, even think in that moment and could barely express what I was physically and emotionally going through. My mother had to pick me up from school and I spent the rest of that day in pain lying in bed after the “scary lights” and a tremendous head pain had kicked in. Every stimuli even a weak source of light or any kind of noise felt like it directly hurt my brain. I had never felt this senstive and concious of my surroundings. I could only lay in my dark room, cry, vomit and wait for the torture to stop. My mom wasn’t suprised to hear what had happened to me at all but obviously seemed very concerned. This was the day I first heard about migraine. What I had just experienced was called a migraine attack and I am not the first person in my family to suffer from it. My mother, my father and grandmother were affected by them as well – and mine had started at ten years old. And this wouldn’t be the last one to appear out of nowhere.

This was a rather personal story to dive into this topic but as every person describes their suffering from this disease in a different way, I thought it could give an insight into what it feels like to experience a migraine attack (at least how I do).

What is migraine and how many people are affected?

According to the Medical Univertsity of Vienna (2024) one million people in Austria suffer from migraine. It is a primary headache disorder which lasts about 4 to 72 hours. What I experienced with the strange flashing lights is a typical symptom of a certain type of migraine known as “migraine with aura”. Aura referring to the visual elements such as flashes of light, blind spots, zigzag patterns, blurred vision, or seeing spots and wavy lines. In my case I would describe them as blind spots that block your sight and increase so much that you can’t see what is in front of you anymore. The intense sensitivity to light and noises is called photo- and phonofobia. The fact that I couldn’t speak and struggled to find words is also a side-effect of experiencing aura. It can lead to the person loosing their speech and just mumbling or struggling to form a whole sentence. After reading more about this disease I learned that most of my symtoms and the different phases of my attack were already known in science and a pretty typical case.

Lack of awareness and medical treatment

Although lots of people suffer from migraine with or without aura, the neurological disease still remains a topic the majority of society doesn’t know or talk about enough. The lack of awareness and no access to proper treatment is what can lead to frustration and even anxiety or depression. In a world where this disease is treated as a simple headache (don’t get me wrong, I don’t mean that a headache can’t be painful) we need to stop avoiding talking about certain diseases only because it makes us feel unconformtable start being curious instead.

Unfortunately, many patients suffering from headache disorders never receive an appropriate diagnosis and don’t have access to treatment or medications. Receiving an appointment with a neurologist is almost hopeless nowadays.

The cause of migraine attacks is still unkown but is usually treated with specific medication but also by following a healthy diet and regular exercise schedule, staying hydrated and using a migraine headache calender to identify possible triggers.

Relevance for design

But in what way does migraine relate to design? Well, currently there are several migraine tracking-apps in the Google Play Store and Apple Store. Most of these apps are free and their goal is to track details about migraine attacks e.g. the intensity of the migraine so that the user can identify their individual triggers and patterns such as weather changes, sleep problems, caffeine and alcohol intake, etc. Users are supposed to track their daily habits to receive an overview of the disorder’s frequency and eventually improve their understanding of the disease.

Personal motivation

As my neurologist has recommended to keep track of my migraine attacks and recommended an app from the pain clinic in Kiel to use it as a “headache diary” I have made experience with different applications over the years. In the following posts I would like to dive into those experiences and analayze them. From a design point of view but also from the perspective of the targeted user group there are several aspects I perceived that should be improved and tested! I believe that combining both of these perspectives and talking to experts (neurologists, psychologists and patients) could be helpful to create a meaningful solution that is tailored to the user’s needs.

My approach

  1. Initial resarch to gain an essential understanding of the disease and it’s characteristics
    • What is the status quo in science? (cause, treatment,…)
  2. Identify problems considering all pain points e.g. medical treatment and health system
  3. Analyze migraine apps for a state of the art research
  4. Ideate possible solution to found problems
  5. Online survey

References

  • Medical University of Vienna. (2024, May 7). One million people in Austria affected by migraine.
    https://www.meduniwien.ac.at/web/en/ueber-uns/news/2024/news-im-mai-2024/one-million-
    people-in-austria-affected-by-migraine/
  • World Health Organization. (2024, March 5). Migraine and other headache disorders. Retrieved October 19, 2025, from https://www.who.int/news-room/fact-sheets/detail/headache-disorders