Giving up is not in her vocabulary.
Elizabeth Arant’s migraine warrior journey started at the tender age of 6. Much of her younger years were spent in the nurse’s office with attacks of classic migraine as well as abdominal migraine, a form of migraine most common in children. Nausea, vomiting, reduced appetite, and paleness—not head pain—are the most debilitating symptoms.
Instead of feeling robbed of her childhood, Elizabeth feels lucky to have had an early diagnosis. This allowed her to receive better treatment and care as a teenager when migraine became more frequent, causing her to miss a lot of school. While she does believe hormones were a huge factor in her migraine disease progressing from episodic to chronic, she has never let the increasing severity or pain of the attacks prevent her from setting goals and aiming high.
At 18, Elizabeth backpacked through Europe. She then returned and focused her energy on becoming a nurse. She remembers that as a newbie to the nursing profession she spent a great deal of time charting and dealing with the technical aspects of the job instead of the humanistic side of nursing. In fact, it wasn’t until a more severe and debilitating migraine diagnosis at the age of 30 that Elizabeth became more compassionate about pain and patient issues.
Diagnoses and daily life
When Elizabeth experienced sudden vision loss, she went to the hospital, where doctors performed a spinal tap. They discovered extremely elevated pressure, and she was transferred to a nearby neurological hospital. Elizabeth learned she had idiopathic intracranial hypertension (IIH). The National Organization for Rare Disorders (NORD) estimates that IIH affects approximately 1 in 100,000. Despite regular visits to a neurologist, due to the rareness of the disease and the need of a spinal tap for confirmation, Elizabeth believes her IIH pressure built up for several years before diagnosis.
In addition to three separate headache disorders that each cause different types of pain, Elizabeth also battles chronic back pain (from a spinal tap mishap) and arachnoiditis, a condition that affects the central nervous system. On a good pain day, she rates her pain as a three or four, but when it reaches eight, medications do not work. On these days, she has difficulty getting out of bed. She will lay in her adjustable bed (which helps with the pressure aspect of her headache), blinds drawn, with ice packs on her head.
Still, Elizabeth counts herself as really fortunate. “I am able to function with pain,” she shares. “And I have parents who have been instrumental. They go with me to the hospital, watch my dog when I’m in the hospital, and take care of everything when I’m sick. Their love and support means so much to me—even if they just sit with me, it helps.”
Her biggest trigger and challenge is weather. As she states even she cannot control the changes; “I am not God.” But ever the optimist, she strives to make the best out of any situation… even the crappy ones.
“Living in Arizona is rough, especially during the summer,” she shares. “Storms come through every night and there is a constant changing of barometric pressure.” (For her, Seattle is the best place to live since the weather never changes and it’s constantly rainy.)
In addition to the barometric pressure changes, temperature can also impact Elizabeth’s migraine attacks. Arizona is hot and heat can be a trigger for her, which makes it really tough. Elizabeth has learned to cope by keeping her apartment as cold as she can.
Self care is also important. As Elizabeth explains, “Learning my limits and accepting that if things don’t get done, it is OK was a process for me.” Finding balance was more difficult due to her profession as a nurse working 40-plus hours a week. “I would come home and crash,” she shares. “I was really just surviving, and not thriving.”
Going forward, Elizabeth is putting herself back on her own to-do list. “I need to remember that I need breaks. I can usually go for about an hour at a time, but then I must take a 20-minute break.”
Managing her own care has led to its own challenges. Even with her background as a case manager, coordination of care has been a frustrating process. “Trying to get doctors to communicate with each other and be on the same page is not an easy task,” Elizabeth says.
She spends roughly an hour each day making appointments and trying to coordinate her care and treatment. It is too much stress, which is why she is looking for support from a case manager. Shares Elizabeth: “I need to focus more on my health needs and less on ensuring I am getting the proper help, follow-up, and follow-through.”
Having a case manager could potentially allow Elizabeth to find a part-time job. Elizabeth participates in the social security disability insurance (SSDI) Ticket to Work Program, a federally funded employment program providing those receiving SSDI the opportunities they need to reenter the workforce and maintain employment.
This gives her security and comfort. The unpredictability of migraine attacks and intracranial hypertension has led to erratic work patterns in the past. “The last thing I want to do is give up my benefits to return to work only to find myself up a creek without a paddle when the disease attacks,” she explains. The Ticket to Work Program allows Elizabeth the ability to work, and the ability to go back on SSDI without having to reapply if she becomes ill again. The program has been a huge help in managing her care. “I know when my headache disorders are not under control, it is an easy transition on to SSDI.”
Recently, Elizabeth has found herself in and out of emergency rooms and hospitals dealing with sepsis and a partnering facial rash. Her doctors unfortunately are attributing the decline in her health to the calcitonin gene-related peptide (CGRP) medications. On a personal level, not responding to this new and promising class of migraine medication has been disappointing and difficult. However, Elizabeth recognizes the overall success of CGRP:
“Migraines are a huge deal, and there are a lot of people suffering with this disease that need help. It’s really exciting to see your friends responding to these medications with little to no complications. We have hope again.”
Elizabeth has found some success through another medical avenue, ketamine. Her chronic migraine attacks have decreased from daily to two a week. The pain has also lessened dramatically from a six-to-eight down to a three or four.
Despite improvements, Elizabeth is candid about the dark side of her struggles: depression. “I am on antidepressants as depression is a big issue for me,” she says. “I have a great psychiatric nurse practitioner, but there are times when I don’t know if I am going to come out of the pain. It wears on you mentally and physically. Sometimes people don’t understand how physically draining depression is. The feelings of hopelessness come when doctors don’t necessarily believe you, or want to help you, or feel like you are part of your own treatment plan; it doesn’t feel like there is hope and it’s frustrating.”
She stresses the importance of reaching out to others in these times of despair. “Help is always available: there are suicide numbers too.” For her, having an emergency plan in place lessens anxiety and empowers her. “I just know I cannot give up.”
Parting advice and moving forward
Elizabeth Arant is tenacious and strong. Living with multiple headache disorders since childhood, she has learned valuable lessons. She encourages others to:
- Find your niche—discover new pastimes that bring you joy.
- Seek out support—whether it’s from friends, family, social media, or even local groups, it’s critical.
- Learn as much as possible to function at the highest level possible.
- Understand you are a partner with your doctor, and must work together to find the best treatment plan for you.
- Ask questions.
- Become involved in migraine awareness and advocacy events.
- Know that there is hope.
“The reality of pain is that it is intense. It is difficult not knowing what tomorrow may bring, but I choose not to dwell on the suffering, but rather focus on the happier times. I have learned to live for the moment, live for my good days, and I am proud of what I have accomplished.”
Crisis Text Line: crisistextline.org
Idiopathic Intracranial Hypertension: rarediseases.org/rare-diseases/idiopathic-intracranial-hypertension/
National Organization for Rare Disorders: rarediseases.org
SSDI Ticket to Work: yourtickettowork.ssa.gov
Are you in crisis?
If you are in crisis or considering harming yourself, we ask you to take one of the following steps immediately. Remember, you are not alone.
- Call 911
- Call a suicide/prevention crisis hotline
(800-784-2433 or 800-273-8255)
- Text HOME to 741741
- Go to a hospital emergency room
- Veteran? Call 800-273-8255. Press “1” to reach the VA hotline