Living with Chronic Migraine: One Woman’s Journey to Finding a Management Plan

Sponsored by AbbVie

Dakota Ivylis Rivera, known as Ivylis online, was a healthy, active, and social 18-year-old serving in the Air Force and attending radiology school. “I had a clear vision of where I wanted to go, what I wanted to do,” she says. Then, she experienced her first migraine attack, and things started to change. 

“I had this feeling I’d never really felt before while sitting in class,” she describes. “It felt like my head was being squeezed.”  That moment was the beginning of her struggle with Chronic Migraine — and her long road to finding a treatment that worked for her.

What Is Chronic Migraine? 

Migraine is often characterized as a bad headache,  but the fact is that it is a neurological disease that can affect people’s day-to-day lives.1 Chronic Migraine is associated with 15 or more headache days per month, with each headache lasting anywhere from four hours to several days.2

During a headache or migraine attack, people may experience a range of symptoms, including throbbing or pounding severe head pain, nausea, and sensitivity to light, smells, or noise.2

Ivy’s Experience with Chronic Migraine

After Ivy’s first migraine attack in class that day, they kept on coming, each one debilitating. “Everything smells a thousand times stronger and I have floaters in my vision,” Ivy describes. “It's like my brain's getting huge, but my skull's getting small. I get sharp, stabbing pains behind my eyes. I get nauseous and typically I need to go lay down in a dark, quiet, cold room. My migraine attacks can last up to eight hours.”

With pain like that, it’s no surprise that Ivylis says her life felt disrupted. At times she found it difficult to keep plans with friends or manage the physical demands of her duties as a radiology tech. “I felt like I wasn’t myself,” she recalls. 

Advocating for Herself

As her migraine attacks worsened, Ivy decided it was time to see a doctor. 

When she was first diagnosed with Chronic Migraine, she felt empowered and validated. “It felt like I wasn’t crazy,” she says. But after the diagnosis, it was an uphill battle to find the right treatment for her. 

Ivylis saw a neurologist, but felt discouraged when multiple medications didn’t work for her. “I’ve struggled with Chronic Migraine for over a decade and have had difficulty finding a preventive medication that helped across a range of options my doctor prescribed,” she explains. “I’m very in tune with my body and paid close attention to how those treatments made me feel.”

Given these challenges with medications, Ivylis persisted in advocating for herself, determined to find the right treatment for her — and she eventually connected with a new doctor. “It took me about 4 years to find a neurologist that I was comfortable with,” Ivylis recalls. “The first appointment, he walked in, he was smiling, he looked at me, and he was like, ‘Well, have you heard of BOTOX® (onabotulinumtoxinA) for the preventive treatment of Chronic Migraine?’”

BOTOX® is a prescription medicine that prevents headaches in adults with Chronic Migraine, 15 or more headache days a month, each lasting 4 or more hours. It is not approved for 14 or fewer headache days a month.

That experience taught her a valuable lesson. While it can be intimidating to talk to a healthcare professional, it’s important to advocate for yourself. “Do your research and go in prepared. If you learn about a treatment that you're interested in, ask your doctor about it,” she recommends. “And make sure that you leave that appointment feeling heard with a plan of action because at the end of the day, you are the one living with this chronic disease.”

Finding BOTOX® for Chronic Migraine

Once Ivylis began BOTOX® for the preventive treatment of Chronic Migraine, she noticed changes in how she was managing her migraine.

BOTOX® (onabotulinumtoxinA) Important Safety Information

BOTOX® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older. It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine). 

BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.

• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

Please see additional Important Safety Information, including Boxed Warning below. Please see Full Prescribing Information, including the Medication Guide.

“BOTOX® for Chronic Migraine worked for me, and now I have fewer headache days a month,” Ivylis says. She recalls that her headache and migraine attacks sometimes required her to step back from certain activities. “When I started getting BOTOX® for Chronic Migraine prevention, my headache days were less frequent.” 

BOTOX® injections prevent, on average, 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 for placebo). You start with 2 treatments 12 weeks apart, then 1 treatment every 12 weeks thereafter (or as recommended by your doctor). Full treatment effect is measured after two treatments (24 weeks); you may feel results sooner.

Ivylis gets BOTOX® for Chronic Migraine injections every three months, and she describes it as quick with 31 small, shallow injections in her head and neck areas that take about 10 minutes.

Supporting People with Chronic Migraine

Now that Ivylis has found a preventive treatment that works for her, she can look at her journey with a deeper understanding.  Her advice for anyone who has a loved one with Chronic Migraine? “First of all, understand that Chronic Migraine is not just a headache that happens every once in a while,” she says. “Second, refrain from offering advice — even if it’s well-intentioned. That’s why having an open conversation with a doctor can be an important step toward understanding what’s really going on and identifying a management plan that fits for them.”

Ivylis says she often carried a sense of guilt and often felt like she was letting people down when she wasn’t able to show up for things. “Affirm their pain,” Ivylis advises. “That is so powerful. Let them know that you believe them and that you're there for them. Offer support and compassion and be willing to learn and help them through this journey.” 

Ivylis also has words of encouragement for anyone suffering from Chronic Migraine themselves.. “I see you. I know what it’s like,” she says. “It’s not your fault and you are stronger than you realize.” 

theSkimm

Living with Chronic Migraine can be debilitating, but there are options available that can help. If you live with Chronic Migraine or think you might be, talk to your doctor about your symptoms and ask your doctor about BOTOX® for Chronic Migraine as a potential preventive treatment option. 

BOTOX® (onabotulinumtoxinA) Important Safety Information

INDICATION

BOTOX® (onabotulinumtoxinA) is a prescription medicine that is injected into muscles and used to prevent headaches in adults with chronic migraine who have 15 or more days each month with headache lasting 4 or more hours each day in people 18 years and older. 

It is not known whether BOTOX is safe and effective to prevent headaches in patients with migraine who have 14 or fewer headache days each month (episodic migraine).

IMPORTANT SAFETY INFORMATION

BOTOX may cause serious side effects that can be life threatening. Get medical help right away if you have any of these problems any time (hours to weeks) after injection of BOTOX:

• Problems swallowing, speaking, or breathing, due to weakening of associated muscles, can be severe and result in loss of life. You are at the highest risk if these problems are preexisting before injection. Swallowing problems may last for several months.

• Spread of toxin effects. The effect of botulinum toxin may affect areas away from the injection site and cause serious symptoms, including loss of strength and all-over muscle weakness; double vision; blurred vision; drooping eyelids; hoarseness or change or loss of voice; trouble saying words clearly; loss of bladder control; trouble breathing; and trouble swallowing.

There has not been a confirmed serious case of spread of toxin effect away from the injection site when BOTOX has been used at the recommended dose to treat chronic migraine.

BOTOX may cause loss of strength or general muscle weakness, vision problems, or dizziness within hours to weeks of receiving BOTOX. If this happens, do not drive a car, operate machinery, or do other dangerous activities.

Do not receive BOTOX if you are allergic to any of the ingredients in BOTOX (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® (rimabotulinumtoxinB), Dysport® (abobotulinumtoxinA), Xeomin® (incobotulinumtoxinA), Jeuveau® (prabotulinumtoxinA-xvfs), Daxxify® (daxibotulinumtoxinA-lanm), or Letybo® (letibotulinumtoxinA-wlbg) (this may not be a complete list of all botulinum toxin products); have a skin infection at the planned injection site.

The dose of BOTOX is not the same as, or comparable to, another botulinum toxin product. 

Serious and/or immediate allergic reactions have been reported, including itching; rash; red, itchy welts; wheezing; asthma symptoms; dizziness; or feeling faint. Get medical help right away if you experience symptoms; further injection of BOTOX should be discontinued. 

Tell your doctor about all your muscle or nerve conditions, such as ALS or Lou Gehrig’s disease, myasthenia gravis, or Lambert-Eaton syndrome, as you may be at increased risk of serious side effects, including difficulty swallowing and difficulty breathing from typical doses of BOTOX. 

Tell your doctor about all your medical conditions, including if you have or have had bleeding problems; have plans to have surgery; had surgery on your face; have weakness of forehead muscles, trouble raising your eyebrows, drooping eyelids, and any other abnormal facial change; are pregnant or plan to become pregnant (it is not known if BOTOX can harm your unborn baby); are breastfeeding or plan to (it is not known if BOTOX passes into breast milk). 

Tell your doctor about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Using BOTOX with certain other medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you have received BOTOX in the past. 

Tell your doctor if you received any other botulinum toxin product in the last 4 months; have received injections of botulinum toxin such as Myobloc®, Dysport®, Xeomin®, Jeuveau®, Daxxify®, or Letybo® in the past (this may not be a complete list of all botulinum toxin products; tell your doctor exactly which product you received); have recently received an antibiotic by injection; take muscle relaxants; take an allergy or cold medicine; take a sleep medicine; take aspirin-like products or blood thinner.

Other side effects of BOTOX include dry mouth; discomfort or pain at the injection site; tiredness; headache; neck pain; eye problems such as double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of your eyelids, and dry eyes; drooping eyebrows; and upper respiratory tract infection.

For more information, refer to the Medication Guide or talk with your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

If you are having difficulty paying for your medicine, AbbVie may be able to help. Visit AbbVie.com/myAbbVieAssist to learn more.

Please see BOTOX® full Product Information, including Boxed Warning and Medication Guide, at www.rxabbvie.com/pdf/botox_pi.pdf.

References

1. Manack Adams, A., Serrano, D., Buse, D.C. et al. The impact of chronic migraine: The Chronic Migraine Epidemiology and Outcomes (CaMEO) Study methods and baseline results. Cephalalgia. 2015 Jun; 35(7): 563–578. doi: 10.1177/0333102414552532.

2. Katsarava Z., Buse D.C., Manack A.N., Lipton R.B.. Defining the differences between episodic migraine and chronic migraine. Curr Pain Headache Rep. 2012 Feb;16(1):86-92. doi: 10.1007/s11916-011-0233-z. PMID: 22083262; PMCID: PMC3258393.

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