STRENGTH IN EVERY STORY™
Stacey’s Story, November 2024
As told by: Valerie Stevens, Edited by Fabiola Palomo
Diagnosis received: Migraine, cluster headache, chiari malformation, graves’ disease, sleep apnea
Symptoms: Neck pain, pain on the side of the head, sensitivity to light, sensitivity to sound, tension on the back of the head, vertigo, nausea
Note: Stacey selected this photo to represent “light at the end of the tunnel,” which she feels captures both the sensitivity to light experienced by people living with migraine and the hope and inspiration that light can also symbolize.
Stacey has understood the seriousness of migraine disease since childhood. While she can’t pinpoint the exact date or trigger, she remembers the pain at only 16 years old and her parents rushing her to the emergency room, desperate for answers.
Passed Down Through Generations the Signs and Discovering a Deeper Cause
Migraine runs in Stacey’s family; her mother was diagnosed with the condition, as was her niece. Stacey’s daughter also developed migraine-like symptoms following three pregnancies, though she never received a diagnosis.
In Stacey’s own journey, what started with a familial pattern of migraine, it became something more with an additional discovery: she was diagnosed with Chiari malformation, a growth abnormality in which the cerebellum extends into the spinal canal.
There are five types of Chiari malformation; Stacey was classified with Type 3, and her condition may have progressed as she got older. Now, this condition is considered a contributing factor to her migraine attacks.
When her daughter was between 18 months to two years old, Stacey’s attacks became difficult to manage and were out of control. As a single mother, Stacey leaned on her support system during those challenging times, “If it wasn’t for our village, we wouldn’t have survived,” shared Stacey.
Dismissed, Then Diagnosed
In 1994, Stacey went to the hospital with a severe migraine. Instead of receiving the care she needed, she was dismissed and told she was “crazy,” with healthcare providers suggesting she see a mental health professional instead. Wanting relief and a second opinion, she visited her sister’s healthcare provider and was later diagnosed with Graves’ disease, an immune system condition that causes the thyroid gland to produce extra thyroid hormone.
Once treated for Graves’ disease, Stacey experienced a turning point in her headache and migraine journey. The tension in the back of her head lessened. However, the vertigo associated with her headache attacks persisted. The severity of her dizziness made it so difficult to drive that she gave up driving altogether. Despite being better managed, Stacey’s length and severity of attack still varied. “It depends on the circumstances. It can be one to two hours or a full day… [they have] ebbed and flowed over the years,” she explained.
Improvements and Trying to Get People to Understand
Stacey’s migraine frequency has decreased over the years. Experiencing 30 days with severe attacks wasn’t uncommon when she was younger. “Out of those 30 days, there were five functional days, or days without debilitating pain and nausea,” shared Stacey. Even with the severity and frequency of her attacks decreasing, Stacey wants others to understand that this type of pain goes beyond what appears on the surface. “People don’t understand how chronic headaches drain your energy. They make you sensitive to many things – light and heights. When I’m wearing sunglasses inside, people are looking at you like you’re crazy.”
New Layers and Diagnoses
Later diagnosed with sleep apnea, this added another layer to figuring out how to better manage her symptoms. She discovered that using her CPAP (continuous positive airway pressure) machine helped reduce the frequency and severity of her attacks. However, maintaining consistent use of the device proved difficult. Between working, studying, and caring for her grandchildren, she admitted she hadn’t been using the machine as regularly as prescribed.
Upon visiting a neurologist, this led to an additional diagnosis: cluster headache. While oxygen therapy is a widely recognized treatment for cluster headache, it was never prescribed to Stacey. Over the years, Stacey had read articles describing the benefits of using oxygen for cluster headache and wondered why it was never prescribed for her.
Triggers and Patterns
Stacey’s migraine and cluster headache attacks typically manifest in her neck and on the side of her head. They may occur with or without aura and are sometimes accompanied by light and sound sensitivity. Over time, Stacey had identified certain triggers like changes in weather, prolonged standing or walking, and more recently, changes in altitude. Since moving into a high-rise condo, she’s noticed that elevation may now be playing a role in her symptoms.
Finding Strength Through It All
Through it all, Stacey’s family was supportive. When an attack struck, her family knew to be quiet and to give her space. At the same time, they remained attentive, checking in and asking if they could get her anything she needed.
For the first time in years, relief came quickly in 2019 when she began treatment with a CGRP. Often within an hour, the symptoms were gone, and it had reduced the number of attacks she had a year, with only two to three for the first three years she started the treatment. However, this changed after moving into a high-rise condo on the 16th floor. Stacey began to notice an increase in headache frequency, now experiencing attacks three to four times a week.
While Stacey is grateful that her CGRP alleviates most of her symptoms, she remains open to holistic approaches to managing her condition. Acupuncture once brought relief, and though her trusted acupuncturist has since relocated, she remains hopeful about finding another practitioner who can offer similar benefits.
To prevent her symptoms from progressing into a full-on attack, she turned to “golden milk,” or “haldi doodh,” a drink known for its anti-inflammatory properties.
Stacey’s care plan includes both physical and mind-body wellness practices. From infrared saunas, meditation, hot showers, using hot and cold face masks, retreating to quiet dark rooms, and light exercise like walking, they all play a part in her routine. “When treating a headache, nothing matters. I focus on myself,” she said. Stacey works from home, which means she doesn’t always have the time or energy to go outside. When she does, it makes a difference. “Feeling the sunshine and fresh air, oh, I feel better.”
Another healing measure for Stacey is no longer blaming herself when she has a migraine. “When I was younger, I would beat myself up about having a migraine.” Most of the time, it would have her incapacitated for one to two hours, or worse, a couple of days. To cope, she would often say, “I should have known better. I should have seen that a migraine was coming.” That kind of self-talk no longer has a place in her life.
Spending time with her grandkids, exploring something new, and introducing people to new experiences excites Stacey. Her passion for connection led her to advocacy, where she now guides people to what they need or want to accomplish. Volunteering has always brought joy, especially at some of her favorite organizations like the Girls Scouts and The Chicago Greater Food Depository. “I miss getting out – volunteering. I need to get back to volunteering.”
Concerts, travel, and the ESSENCE Festival of Culture®, a tradition which she attended with her best friend for four consecutive years, had to come to an end. “Now, if I’m not feeling well, I’m not doing it,” Stacey said. Determined to change that, Stacey reminds herself she needs to get back out there. “My goal is to take my granddaughter to New York to see her first Broadway play.”
Though Stacey hasn’t quite traveled yet, she finds comfort in small pleasures like watching The Masked Singer and enjoying some ice cream. Her attacks may not be in full remission, but they have improved, and so has her ability to live with them. “I’ve learned to go through my life doing the best that I can.”
*Disclaimer: The use of opioids is not recommended for the treatment of headache disorders or migraine disease. Evidence suggests they may be ineffective and carry significant risks of medication overuse headache and dependance. (American Headache Society, 2019)