STRENGTH IN EVERY STORY™
Heather’s Story, September 2025
As told by: Claire Moacdieh
Diagnosis received: Idiopathic intracranial hypertension (IIH) or pseudotumor cerebri, chronic migraine
Symptoms: Dizziness, nausea
Heather had been living with headache attacks for most of her life. She was diagnosed with idiopathic intracranial hypertension (IIH), formerly known as pseudotumor cerebri. After receiving treatment for her IIH, she began to have migraine attacks and was diagnosed with chronic migraine in 2016 when she was in her 30s. Having to go through brain surgery after sustaining a direct hit to the head, she went into remission with her IIH, but her migraine remained. It took her years to find relief through effective treatment.
A Great Deal of Pain
Heather’s migraine disorder has impacted her life in many ways, including her ability to work. When she was younger, she was able to work, but now she is on disability and receives assistance from the government.
While Heather was experiencing migraine-like symptoms, she had no idea what was causing the pain until she was formally diagnosed in 2016. Previously, she had a shunt surgically placed that lessened any symptoms related to her IIH. Soon enough, her migraine attacks worsened, and she was given acute treatment medication.
She described her pain as “someone is squeezing my brain.” She also compared the pain to the experience of being drunk, with feelings of dizziness, haziness, and nausea.
Heather experiences migraine attacks in the morning when she wakes up, and they may sometimes last the entire day. After consulting with her healthcare provider, Heather has been able to determine that her attacks can be triggered by humidity and barometric pressure. Since starting her medication, the attacks haven’t lasted as long. They tend to dissipate after she has her morning coffee and takes her medicine. For Heather, caffeine* helps soothe her migraine disorder.
At her most severe pain, Heather believed that her migraine was responsible for some pretty serious symptoms, including a seizure in 2023 and passing out while driving. This resulted in her losing her driver’s license. She described one of the worst experiences as being unable to move. “I’m in the ER because I can’t get it under control.” Her pain got so bad that she described it “going up to 20” on a scale of 1-10.
A Long Journey with Healthcare Providers
While she was dealing with this tremendous amount of pain, her healthcare providers (HCPs) made no effort to diagnose her. Instead, they prescribed different medications. While she acknowledged that doctors are human too, and may lack an understanding of headache medicine, she also expressed feeling frustrated. “They kept throwing me medicine and [were] not trying to figure out the cause of these migraines.” She also described the frustration of HCPs not understanding her pain. Finding the right diagnosis was a long process for her, taking several years.
Because none of the treatments were working earlier in her journey, her parents encouraged her to get input from other doctors. By putting a name to these symptoms, Heather would hope to get better clarity that could later serve as a cornerstone for effective treatment.
Heather finally received her diagnoses of chronic migraine and idiopathic intracranial hypertension after visiting a different clinic from the one she had been going to in the past.
Finding the right treatment had been a challenge for Heather, but after her diagnosis, she was prescribed an atogepant, which has really helped her manage her pain. When she had to have brain surgery, the shunt for her IIH was closed as it was draining too much fluid from her brain. Since Heather has been in remission from her IIH and manages her migraine with an atogepant and onabotulinumtoxinA.
A Brighter Future
Throughout Heather’s life, people have been unable to understand the severity of her pain. She wants to help people understand that her migraine is “more of a neurological problem. Your brain is everything in your body.” Her migraine impacts every aspect of her life, which is something others don’t fully grasp.
Heather has experienced a lot of stigma for her migraine, but she stays strong. She is a mom and is also dedicated to fostering cats. She finds support from her family and friends. Specifically, her son has helped a lot with her struggles; he was there for her when she had her seizure and continues to help her.
Her parents also play a big role in her life; for instance, her mom helps fill her medication, so she doesn’t forget. Because she has such a supportive network, she finds the strength to “keep going with my faith [that] all things are possible.”
But Heather also maintains a positive attitude. She advocates for others to be patient and to have hope. She believes in the process of trial and error and wants people to trust that their HCPs will help them find the right treatment. At the end of the day, she tells people: “Know that you’re not alone.”
*Disclaimer: Caffeine may influence migraine differently depending on the individual and frequency of use. While it can provide short-term symptom relief for some, regular or excessive intake may contribute to migraine attacks or withdrawal-related migraine. Patients should consult their healthcare provider regarding caffeine use as part of their management plan. (Cleveland Clinic, 2023)
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