Episode 2: Between The Notes

Jasmine is a gifted teenage pianist, but something is beginning to interrupt the music.

What starts as an occasional headache gradually becomes harder to ignore. The pain grows more frequent. Sound becomes unbearable. School, piano, and daily life begin to slip out of reach.

Her family tells her it's “just a headache.” Over-the-counter medications help—until they don’t. Then come the emergency department visit, the brain scans, the uncertain MRI report, and months of waiting for answers.

In episode 2 of Tales From the Cortex, we follow Jasmine through the fear, frustration, and isolation of worsening headaches.

Sometimes, the most important part of the story is what happens between the notes.

Every symptom is a clue. Every brain has a story. 

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The bonus teaching segment at the end turns the narrative into a practical guide for clinicians, and trainees. 

Transcript

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Welcome to Tales from the Cortex Stories from Inside the Brain, a story-driven neurology podcast that takes you inside the mysteries of the human brain. I'm neurologist Dr. Andrew Macelli, and this is episode 2 Between the Notes. Part 1 The Wrong Note Jasmine knew the piano piece well enough that she no longer needed the sheet music. Her fingers moved across the keys almost automatically, right hand dictating the melody and left hand quietly answering below it. She was seventeen years old, and the piano was the one place where she rarely felt uncertain. Tonight though, something was wrong. It began behind her right eye, not pain exactly, but pressure. She kept playing. She had learned to do that over the past year. The headaches had started occasionally, usually after a long day at school, sometimes after she stayed up late studying, sometimes around her period, but most of the time for no obvious reason at all. She struck the next chord, the pressure pulsed. Once, then again, she continued. The next note sounded strangely loud. She hesitated. She pressed another key. It seemed to explode through the room. She stopped playing. For a moment she sat perfectly still. The pressure behind her eye was changing. It was no longer pressure, it was a pounding pain, a deep rhythmic pounding. She could feel her heartbeat inside her temple. Thump, thump, thump. Her mother called from downstairs, Jasmine, it's dinner time. Even her mother's voice hurt. She closed the piano lid. I'm coming. She didn't. She stayed on the bench with her eyes closed. The light above the piano suddenly seemed impossibly bright. She switched it off. At dinner, Jasmine barely touched her food. Her father noticed first. Headache again? She nodded. You've been getting a lot of those. I know. Her mother looked over. Did you drink enough water today? I think so. How much sleep did you get? Jasmine shrugged. Her father smiled. You're seventeen and you're studying all the time, you're practicing piano, you're staring at screens. Then came the sentence Jasmine would hear again and again. It's just a headache. Just Jasmine hated that word. Because there was nothing just about lying in a dark room with a pillow over your head because the sound of someone closing a kitchen cupboard downstairs felt like it was happening inside your skull. The progressive nausea and then vomiting. She hated the vomiting most, but strangely felt better after it was over. There was nothing just about wondering whether accepting an invitation to a friend's birthday was worth the risk of being trapped somewhere where the pain started. And there was nothing just about the fear that came every time she felt that first familiar pressure behind her eye, because once it started, she knew where it would end. Eventually her parents took her to their family doctor. The appointment lasted about fifteen minutes. Jasmine described the headaches, throbbing, sometimes one sided, nausea, the light bothered her, but sound was worse, and they would last hours. The doctor quickly examined her. Everything was normal. Jasmine waited. She had been expecting something more after that, a test, a prescription, a plan. Instead, the doctor told her to take Advil or Talno when the headaches occurred and to get better sleep and would try to reduce her screen time. Jasmine almost felt embarrassed. Maybe her parents had been right. Maybe she was making too much of this, so she followed the advice. At first, it worked. Two Advil, a dark bedroom, an hour of sleep, and the headaches eventually faded. It was like discovering a secret exit. So the next time the pressure appeared behind her eye, she reached for the bottle immediately, then again the following week, and then twice the week after that. Soon Jasmine kept Advil in her backpack, Talnell in the bathroom, more in her piano bag. She began checking for medication before leaving the house the way other people checked for their phones. Keys, wallet, phone, Advil. Because the headaches were changing her, not just when they happened, between them. On headache free days, Jasmine would sometimes stop in the middle of class because she thought she felt something behind her eye. Is that it? She would wait. Nothing. Then twenty minutes later, was that a pulse? She started making calculations. I have piano practice tonight. I have an exam tomorrow. What if I get one of them? The migraines had found a way to occupy days when she didn't even have one. The anticipation was eating at her. Part two The Night It Changed It happened on a Thursday. Jasmine had an English presentation that morning and a chemistry test after lunch. Except she never ate lunch. At twelve forty she was still reviewing notes. At one hundred ten in the afternoon, the chemistry test began. Halfway through Jasmine noticed the familiar pressure behind her right eye. Not now. She kept writing, the pressure pulsed. She reached into her backpack after class and swallowed two Advil with water. Usually that was enough. But this time it wasn't. By the time she arrived home the headache was pounding. She went directly upstairs, curtains closed, lights off, phone face down. At six o'clock her mother opened the bedroom door. Jasmine, please close it. Her mother stopped. Jasmine had one hand pressed against the side of her head. I took Advil. When? Hours ago. Tritalno. I did. Her mother stepped closer. Jasmine felt nauseated. She closed her eyes. Another wave of pain surged through her head. This one frightened her. Not because it was instantaneous, not because she collapsed, but because it kept getting worse. Seven o'clock, eight o'clock, nine, every hour seemed to add another layer of pain, and eventually the thought Jasmine had been trying not to think became impossible to ignore. What if this isn't a migraine? She had never had a headache this bad before. Around ten fifteen in the evening, her father picked up the keys to the car. We're going to the hospital. The Emergency Department The Emergency Department waiting room was full. Jasmine sat between her parents beneath fluorescent lights that seemed specifically designed to make headaches worse. Someone was coughing, a child was crying, a stretcher rattled across the floor. Every sound amplified her pain. The monitors kept beeping. Jasmine closed her eyes. Thirty minutes passed, then an hour, then another, and as she waited her fear began to change. At home she had wanted the pain to stop. Here she wanted an explanation. She watched people being called ahead of her. She understood they were probably sicker, but that didn't make the waiting easier. Her mind filled the silence, a brain tumor, a bleed, an aneurysm. She knew almost nothing about any of them, that made them worse. She had tried to avoid Googling or using Chat GPT to get more answers. Finally, her name was called. The emergency physician asked questions, examined her eyes, tested her grip strength, and had her walk. Everything was normal. She was treated with the usual migraine cocktail of cotorlac, metaclopromide, fluids, and gravel. But because the headache was more severe than usual and the family was worried, a CT scan of the brain was arranged. Jasmine lay on the CT table staring upward. The machine began to move, so she shut her eyes and tried to breathe. For the first time that night she felt relieved. They were finally looking inside her head. Surely once they had a picture, they would know. The medications were starting to work. Slowly the pounding softened. Nine out of ten became seven. Seven became five. Eventually Jasmine opened her eyes without immediately wanting to close them again. She was exhausted and relieved. The emergency physician came back and explained that the CT was normal and that she could go home to follow up with her family doctor. At three forty in the morning, Jasmine climbed into her own bed. The headache wasn't gone, but it was quiet enough to try to sleep. Before she closed her eyes, one thought returned. If the CT was normal, why am I still getting these headaches? Part three The Scan At her follow up appointment, Jasmine's family doctor ordered an MRI of the brain. We're covering our basis since these headaches seem to be getting worse. The intention was reassuring, but to Jasmine, ordering an MRI meant something else. It meant there was something worth looking for. What exactly are you looking for? she asked. The doctor replied, Probably nothing, it's just to make sure. Make sure of what? she thought. She didn't ask. The MRI was booked for November, six months from now, and so began the waiting. At first Jasmine thought the hardest part would be waiting for the scan. It wasn't. The hardest part was having migraines while waiting for the scan because every headache now carried a question with it. During math class, what if there's something there? During piano practice? What if this is getting worse? At two o'clock in the morning after waking up with another headache, do brain tumors cause headaches at night? She couldn't stop the urge to search online, then regretted it instantly. She promised herself she wouldn't search again, then opened another tab five minutes later. Meanwhile, the migraines became more frequent. Her family doctor prescribed Suma Triptan twenty five milligrams. It seemed like the treatment she'd hoped for. Her stomach was sore from Advil, but it worked. Would this work better? Sometimes it helped, sometimes it didn't. She actually liked Advil better and sometimes added talent to the mix. Sometimes she took gravol, allowing her to sleep it off without having to throw up, but her day was shot. She stopped counting headache days, she counted headache free days instead. Those were becoming easier to count. The MRI report six months later, Jasmine finally lay inside the MRI scanner. The technologist placed the head coil around her. Try not to move. The table slid inward and the machine started. Bang, bang, bang. Jasmine stared at the plastic inches above her face. She tried to think about playing the piano. Instead, she thought about what she read online and the possibility of a brain tumor. Aneurysms. What if they find something? What if she's never able to play the piano again? Then another thought. Somehow worse. What if they don't? Because if the MRI was normal, what did that mean about the pain that had taken over her life? The scan ended. Jasmine sat up. Did you see anything? she asked the technologist. You'll have to discuss the results with your doctor. Of course, more waiting. The MRI report appeared electronically before Jasmine's next appointment. Her father found it first. There were several lines of ordinary medical language, then one sentence stopped him. Scattered supratentorial white matter T two, flare hyperintense foci. Differential considerations include changes associated with migraine, demyelination, inflammatory vasculitic processes, among other etiologies. Clinical correlation is recommended along with neurology consultation. Recommend repeat MRI brain in six to twelve months to ensure stability. He read it twice. Then called Jasmine's mother. Then Jasmine. What does demyelation mean? Nobody knew. Her father copied the report into Chat GBT and asked it to explain the findings. The response explained that white matter lesions could have many causes, including benign and incidental causes, migraine, inflammatory conditions, demyelating disease, and other possibilities, and that the findings had to be interpreted by the doctor based on her symptoms. Jasmine barely noticed the words benign or migraine. She noticed one possibility, demyelinating disease. She tried to sound out the word as she typed it into the search bar. Multiple sclerosis appeared, then vasculitis. Her eyes went wide. She spent the next four hours going down a rabbit hole of fear. That night, Jasmine didn't have a migraine. She couldn't sleep anyway. She lay in bed staring at the ceiling. There were spots in her brain. That is how she understood it. Spots. And nobody could tell her what they meant. The referral. At the family doctor's office they reviewed the MRI report. Her doctor tried to be careful. These findings can certainly occur with migraine, Jasmine nodded. But because the radiologist has mentioned other possibilities, I'd like a neurologist to review everything just to be sure. There it was again. Other possibilities. Something sinister. Like MS multiple sclerosis? Jasmine asked. It's probably not that. Probably. Jasmine had begun to hate that word almost as much as just. A neurology referral was sent. The appointment arrived several weeks later. Jasmine opened the letter. She stared at the date six months from now. Part four six months later. Six months is a long time when you're seventeen years old. Six months of calculus feels like a decade long penance. When you're waiting to hear back from the university of your choice, it feels like an impossibility. Every mailed letter, a torture device. None of that compared to waiting when you think there might be something seriously wrong with your brain. Jasmine's migraines continued, then worsened in both severity and frequency. She started waking each morning and assessing her head before she even opened her eyes. Is it there? Sometimes she couldn't tell. The fear itself seemed to become a symptom. She took sumatriptan, then Advil, then Talanol, sometimes all three together. Sometimes she took medication early because she was terrified of what would happen if she waited. The medication that had once represented an escape now became part of the routine. Headache, medication, relief. Headache, medication, less relief. Another headache, more medication. By spring, Jasmine was missing school, her piano practice became inconsistent, she stopped committing to plans with friends. She hated saying I have a migraine. She could hear her father's old words every time she said it. It's just a headache. Except now her family wasn't dismissive, now they were worried too. Her mother watched her closely. Her father occasionally asked whether the neurology office had called with a cancellation. They hadn't. Jasmine's world slowly reorganized itself around a future appointment circled in the calendar. Maybe the neurologist would finally tell her what was wrong. Or maybe the neurologist would confirm exactly what she feared. Part five. The Neurology Consultation Hi Jasmine, I'm the neurologist. He asked her specific questions that other physicians hadn't, like, are you on birth control? How long from when the headache starts does it reach maximum intensity? How it felt before and after the headache? How it was interfering with her school and piano. He really wanted to get a sense of the headaches. He wanted to know when they started and how they had changed over the year. He was detailed about her sleep, eating habits, and routine. How many days a month are you completely headache free? He asked. Jasmine paused. Maybe uh five. He wanted to clarify how much Talnal, Advil, and Sumatriptin she was taking per month. After about fifteen minutes of questions, he had a look on his face like he knew what was going on and what to do next. He took her blood pressure, completed a focus neurological examination, and looked at the back of her eye with a bright light. He reviewed the blood work with specific focus on vitamin B twelve, iron studies, and thyroid. Finally, he pulled up the MRI. He looked at the images himself, scrolling in silence. Jasmine's stomach tightened. This was it. All this waiting condensed into a few seconds while images appeared on the screen. The neurologist scrolled through them. He stopped. Jasmine watched his face. Nothing. Another image. Another. He leaned closer at the screen, then sat back. I'm not concerned about this MRI. Jasmine wasn't sure she had heard correctly. He continued on. These are tiny nonspecific changes. We see findings like this commonly. In someone with your history and no worrisome neurological symptoms, these brain changes are related to migraine or another nonspecific cause. You have no clinical symptoms of another neurological condition, and the way these look are not reflective of multiple sclerosis. Most importantly, they don't explain your headaches. He could tell how anxious she was about this report and tried his best to reassure her. Unfortunately, this was a common situation for the neurologist, and he reflected on how frequent he was having the same conversation. Silence. Her father leaned forward. So there's nothing wrong with her brain? There's nothing on this MRI that worries me, says the neurologist. Jasmine felt something loosen inside her chest. Six months six months of imagining something growing, spreading, or attacking her brain, six months of interpreting every strange sensation as evidence, six months of waiting for that sentence. The neurologist continued. But there is something we need to deal with. Jasmine looked up. How to treat your migraines? The treatment plan. The neurologist pulled a piece of paper toward him. You have chronic migraine without aura, and on top of that you have likely developed what we call medication overuse headache. Jasmine frowned. From the migraine medication? From needing acute medication too frequently, it's a very common trap. You get more headaches, so you take more medication. But once certain acute treatments are being used too frequently, they can actually help perpetuate the headache cycle. He added more directly. It's certainly not your fault. Jasmine stared at him. So the medication is causing my headaches? Not exactly. You have migraine, that's the underlying disorder, but the frequent use of medications can potentially make things worse. For the first time someone drew the whole picture for her in simple terms she could understand. And then the neurologist had a plan that nobody had said during the previous year. Here's your treatment plan. We're going to optimize your lifestyle, add in migraine specific vitamins, alter your acute rescue plan, and start a prevention strategy. Not another scan, hopefully not another emergency department visit. Prevention. Part six. Taking back control. They discussed regular meals, especially breakfast with the addition of protein, sleep, exercise, and hydration. The neurologist explains that none of these meant jasmine had caused her migraines. They were ways of making a migraine prone brain less vulnerable to attacks. They discussed evidence-based supplements, sometimes used for migraine prevention, such as magnesium, vitamin B2, also known as riboflavin, and coenzyme Q10. He also recommended vitamin D daily. For your acute rescue medication, I want you to take Sumatry 10 100 milligrams at the onset of more significant headaches. This was a higher dose than her family physician prescribed initially. The earlier you treat, the more likely you are to be successful, but I want you to keep track of how often you're using it. I would like you to use it less than nine days of the month. Then they discussed prescription prevention. Because you're having headaches this frequently, he explained, I don't want us relying only on medication when the headache starts. I want to reduce how often the headaches are happening in the first place. This requires a daily prevention medication. They discussed options. Beta blocker, candisartin, or amitriptyline were the preferred options to discuss. For Jasmine, they decided together to start a beta blocker called Natalol at a low dose with appropriate monitoring and gradual titration. She had no contraindications such as asthma, low blood pressure or heart rate, and no history of heart block. Jasmine left the office carrying something she hadn't received from the CT scan or the MRI, a clear, tangible plan. He booked a follow-up in three months to give time for the treatment plan to work. Part seven. Back at the piano Several months later, Jasmine sat at the piano again. She placed her fingers on the keys. Her migraines weren't gone, that wasn't the ending, there were still difficult days, still attacks, still moments when she felt the first pulse behind her eye and wondered how bad this one would become. But they were less frequent now, and something else had changed. She understood what was happening. Happening. She knew what to do. The migraine no longer felt like a mysterious warning from somewhere inside her brain. She pressed the first key. Then the next. The melody filled the room. Halfway through Jasmine noticed something. She wasn't thinking about her head, she was thinking about the music, and she kept playing. Jasmine's story illustrates something that's easy to underestimate about migraine. Migraine isn't simply a bad headache. It's a neurological disorder that can cause substantial disability, and inadequate treatment, especially early in its course, can contribute to a cycle of increasingly frequent headaches, escalating acute medication use, emergency department visits, unnecessary investigations, and tremendous anxiety. So let's go back through Jasmine's story and ask what could have been done differently. Did Jasmine need brain imaging? In a patient with typical migraine history, a normal neurological exam, and no concerning red flags, neuroimaging is often unnecessary. Among patients with migraine and a normal neurological exam, the prevalence of significant intracranial abnormalities on neuroimaging can range anywhere from 0 to 3.1%, and combining this data in a meta-analysis resulted in a prevalence of only 0.18%. The diagnosis of migraine is primarily clinical. That's important because ordering a test isn't always reassuring. In fact, it can lead to incidental findings, with increased anxiety and potentially more unnecessary and sometimes invasive investigations. Jasmine's MRI identify tiny, nonspecific white matter hyperintensities. Findings like these can be seen in people with migraine and often have no clinical significance. But an MRI report has to describe what is visible and may provide a differential diagnosis. Words such as demyelination and vasculitis can be terrifying when read without neurological context. This is an important distinction. An MRI report is not a diagnosis. The imaging has to be interpreted alongside the patient's symptoms, examination, and the actual pattern of abnormalities on the scan. What went wrong with Jasmine's migraine treatment? Early on, Jasmine's treatment plan was actually reasonable. Her migraines were infrequent, and for an occasional migraine, an over-the-counter medication such as Advil with Tylenol taken early in the migraine can be perfectly appropriate. The problem wasn't necessarily how her migraines were treated at the beginning, the problem was that her treatment never evolved as her migraines did. As the attacks became more frequent, more severe, and began interfering with school, piano, and her daily life, she needed a more effective acute or abortive treatment. This is where medications like tryptents come in. And this is something we see far too often in migraine care. Triptens are not prescribed when they should be. Sometimes they're prescribed only after months or years of an inadequate over-the-counter treatment. And even when they are prescribed, the dose may be too low or patients may wait until the headache is severe before taking them. For many patients, timing matters. Acute migraine treatment generally works best when taken early in the attack, ideally within 30 minutes, while the pain is still mild, rather than waiting until the migraine has fully established itself. Jasmine needed an appropriate acute migraine plan, one that she could reach for confidently when she felt an attack beginning. But there was another important change happening. Her migraines weren't just becoming harder to treat, they were becoming more frequent. Once Jasmine was experiencing roughly four to six headache days per month, particularly given how disabling her attacks were, it was time to have a different conversation. Not just what do we do when the next migraine happens, but how do we stop so many of these migraines from happening in the first place? That's where preventive migraine treatment enters the picture. Preventive treatment can include daily medications, and depending on the patient and migraine burden, other options are available as well. The decision isn't based on a single magic number of headache days. It also depends on severity, disability, response to acute treatment, patient preference, and how the migraine is disrupting someone's life. And for Jasmine, migraine was beginning to take too much. The goal was no longer simply to survive the next attack, it was to give her fewer attacks to survive. What is medication overuse headache? Medication overuse headache can develop in a person with an underlying headache disorder who uses acute headache medications too frequently over many months. The exact threshold depends on the medication. For example, for tryptans, use on nine or more days per month for months at a time can meet the overuse threshold. For simple analgesics such as acinamidophilin or NSAIDs, the threshold is generally 15 or more days per month. And notice that we're talking about days of use, not simply the number of tablets. This is one reason I like asking patients, how many days each month do you take something for your headache? What should acute migraine treatment look like? Treat early. Once a patient recognizes that a migraine attack is beginning, effective acute therapy should generally be taken early in the headache phase rather than waiting until the pain becomes severe. Depending on the patient, this might include an NSAID, a tryptan, a GPAT, or another appropriate acute treatment. But every patient should leave with boundaries around frequency of use and a plan for what happens if their first-line therapy fails. When should we think about prevention? When migraine is becoming frequent, prevention should be discussed. Options with high-level evidence include select beta blockers, candisartin, or amitriptyline. In select cases, topiramate, venlofaxine, or gabapentin can be used. Newer migraine-specific treatments often require inadequate response or intolerance to the above treatments for insurance coverage, as these treatments can often be cost prohibitive otherwise. Realistic expectations are also important for treatment. The goal isn't necessarily zero migraines. The goal is fewer attacks, less severe attacks, better response when they do occur, and ultimately giving patients back control over their lives. Before we finish, here are five things I want you to remember from Jasmine's story. Number one, migraine is a neurological disease, not just a headache. Migraine is a primary headache disorder, meaning it's not caused by an underlying structural lesion or secondary medical condition. Migraine is thought to involve abnormal neuronal excitability, dysregulation of pain pathways within the trigeminovascular system, and the release of neuropeptides, such as calcitonin gene-related peptide, which contribute to headache pain and associated symptoms. Management is largely supportive and focused on lifestyle modification, acute symptom control, and prevention strategies when indicated. 2. Generally speaking, a typical migraine with no red flags does not require neuroimaging. Acute abortive treatments require an adequate dose of a tryptan or GPANT. For significant intensity migraines, an NSAD such as advil or leave can be combined with the tryptan taken at the onset of the migraine. It's important to treat the headaches early for maximum effectiveness. Provide a diagnosis for the patient at the first encounter. This can be done for the majority of patients at the first encounter. Too often physicians know that it's a migraine, but don't explicitly tell patients. This can reduce patient uncertainty. And number five, the burden of migraine isn't limited to the hours when the patient's head hurts. There can be disabling parts that happen just before or after the migraine. The food cravings, sensitivity to light and sound, difficulty reading, yawning, increased need to urinate, irritability, depression, inability to concentrate, and or fatigue. There can also be disabling parts that happen just between attacks. It's canceling the dinner because you might get a migraine. It's carrying medication everywhere you go. It's waking up and checking whether your head hurts before you even get out of bed. It's waiting months for an MRI, reading a report you don't understand, then waiting six more months for somebody to tell you what it means. Jasmine spent nearly a year afraid of what might be happening inside her brain. In the end, the most important thing she needed wasn't another scan. It was someone who understood her migraine, a diagnosis, a treatment strategy, and a plan. Because sometimes the scariest part of a neurological illness isn't knowing the diagnosis. It's waiting for one. This is Tales from the Cortex. Stories from inside the brain. Disclaimer, this podcast is for general educational and informational purposes only. It isn't intended to provide medical advice, diagnosis, or treatment, and it doesn't establish efficient physician-patient relationship. If you have concerns about your health, please speak with your own healthcare professional. Cases discussed on this podcast may be fictionalized or based on composites of clinical experiences. Details have been changed to protect patient confidentiality. Story written by Dr. Andrew Michelli and Dr. Michelle Yeeggy. Original piano music performed by Dr. Andrew Michelli. Until next time.