Living With (and Treating) Chronic Migraine

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I’ve partnered with Allergan®, an AbbVie company, to raise awareness of Chronic Migraine by sharing my personal story and why I’ve decided to use BOTOX® (onabotulinumtoxinA) to treat my Chronic Migraine. I’ve lived with this chronic disease for over two decades and received BOTOX® injections from my neurologist this past fall (2020) in the hopes of finding an effective treatment for my Chronic Migraine.

BOTOX® (onabotulinumtoxinA) Important Information
Indication
BOTOX® is a prescription medicine that is injected 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 or older.

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

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 highest risk if these problems are pre-existing 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 and 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 below.

Looking back on the last two decades since I first started experiencing migraines, I’m honestly in a bit of disbelief over how much of an impact Chronic Migraine has had on my daily life. And if that sounds a bit dramatic, I promise that, if anything, it’s a bit of an understatement when I look back and reflect on both the headache/migraine pain I was experiencing with my Chronic Migraine as well as the psychological anguish and anxiety that I had.

My history with Chronic Migraine has been long and not particularly fun to reflect on… I can’t remember my first migraine but I remember them starting to happen when I was around 12 years old, becoming more frequent and intense over the following few years. At 15, I had my first MRI, my migraine attacks becoming so severe that ER doctors at first feared that I was experiencing an aneurism. My symptoms ranged from severe pain and pressure in my head, to dizziness and nausea, to extreme light and sound sensitivity. Throughout the remainder of high school, I tried my best to push through my migraine attacks and tried to adapt to living with them, frequently cancelling plans with friends at the last minute or pushing through schoolwork and sports (I was a varsity swimmer and water polo player) because I felt I had no other choice. At times, I would have to stay in a dark room by myself when experiencing a migraine attack.

At 18, I moved to New York City for college. I attended Parsons, a highly competitive design school that had a strict attendance policy. I took school very seriously and supplemented my classes with a part-time job immediately. While I was social and excited to be in New York, school was my priority. When inevitably my migraine attacks became worse, I sought out medical guidance on my own in my new city — I just knew that without help, my Chronic Migraine would interfere with my class schedule and my studies. Over the next couple of years, I saw doctors that suggested treatments, others that suggested I was just stressed or needed more sleep, many that said I just needed to lose weight (for migraines?!), and a neurologist who put me on a medication that gave me severe side effects, without a willingness to hear about my experiences or adjust my treatment. My doctor at the time suggested it was the right approach because it had helped some patients manage their Chronic Migraine, but more importantly, to him (and to me, he’d suggest) was that it would make me lose weight. I gave this medication a try, but ultimately I stopped taking it because it didn’t meet my treatment goals and, for years, avoided seeing neurologists again, fearing the same experience.

For the next 10 years, give or take, I took a grin-and-bear-it approach. I tried to conceal my migraine attacks or just went through them in silence. I had anxiety about making and being able to keep social and professional commitments. When, unavoidably, a migraine would come on by surprise and I’d have to back out of plans, I was worried that friends, colleagues, or clients would think I was faking or dramatizing my symptoms–something I think is a common feeling for many people with invisible illnesses. I tried my best to push through, but just knew I needed to find a treatment plan that worked for me.

I first became aware of BOTOX® for Chronic Migraine treatment a few years ago. A friend of mine had gotten it and shared how it had helped her Chronic Migraine, but I honestly held back from looking into it or pursuing it because 1.) I had so much anxiety about seeing doctors at all after years and years of bad experiences with medical professionals of all kinds, and 2.) I definitely had some misconceptions about BOTOX® in general. Then last year, I finally got to a point where “grinning and bearing it” was no longer an option and being able to say I hadn’t had BOTOX® for the sake of my ego was downright silly. I wanted, and I realized, that I really needed to find the right treatment for me.

I found an amazing neurologist here in NYC that truly listened to me, wanted to learn all about my past treatments and was committed to helping me find the right path forward. At that point, we began a treatment plan with new medication that helped a lot, but wasn’t meeting all of my treatment goals. This past spring, we decided BOTOX® would be the next course of action, and I finally got my first cycle of treatment this past September.

BOTOX® for Chronic Migraine is administered in 31 different injection sites across 7 head/neck muscle areas and at about 4 weeks after treatment I started feeling results. BOTOX® prevents on average 8 to 9 headache days and migraine/probable migraine days a month (vs 6 to 7 for placebo).1 I’m having less headache days now that I’ve started treatment and have been in shock and disbelief that I have found a treatment that works for me. Just the week before I received treatment, I was with my partner, my childhood best friend, and his wife, for our quarantine pod Rosh Hashanah dinner, and had to lock myself in their bedroom when a migraine attack suddenly came on – I felt gutted and cried, especially since it was the only social interaction or holiday celebration we had in months. I had no idea at that moment that just a week later I might start a treatment that would help to effectively manage my Chronic Migraine for the first time.

The truth is this experience has been one of the most empowering experiences I’ve had in my own self-care and self-advocacy. Not only did I manage to find and build a relationship with a great doctor who has been part of my care team, but I’ve finally found an effective treatment for my Chronic Migraine that I never really believed was possible. And I can’t lie: a big part of me wishes I hadn’t waited so long to pursue more treatment options.

Since sharing a bit about my Chronic Migraine history, treatment journey, and BOTOX® treatment, I wanted to share some of the Frequently Asked Questions I receive, as well:

How do I know if I have Chronic Migraine?
Chronic Migraine has to be diagnosed by a neurologist or medical professional. It is different from episodic migraine and is characterized by having 15 or more headache days a month, with at least half of those being classified as a migraine. If you think you might have Chronic Migraine, my personal recommendation is to seek treatment from a medical professional sooner than later, since finding the right course of treatment or getting an accurate diagnosis can take some time.

Did Botox® Treatment hurt? What is the actual injection process like?
While everyone’s experience may vary, the injections themselves feel like small pinches or pricks – for me, I don’t find them very painful and certainly not nearly as painful as a migraine attack! It took about 15 minutes for my doctor to administer all the injections, and she took breaks in between as much as I needed. For me, the injections on the lower portion of the back of my head were the most sensitive. There was no down time, and I took the train home myself from the doctor’s office and resumed all my other activities as I normally would.

What are the most common side effects?The most common side effects are neck pain and headache. This does not cover all of the possible serious side effects of BOTOX®. Please see the Important Safety Information, full Product Information including Boxed Warning, and talk to your doctor.

How often do you receive treatment?
My neurologist recommends receiving BOTOX® for Chronic Migraine every 12 weeks.1 I had my first round of treatment in September, and my second round of treatment in December. Two rounds of treatment is needed to feel full effects at 24 weeks. It is important you work with your doctor to determine what treatment plan is right for you. 

How much did treatment cost?
Because of my Chronic Migraine history, my treatment was pre-approved and covered by my health insurance provider. Nearly all commercial insurance plans cover the majority of BOTOX® costs, but you should check with yours. There’s also a BOTOX® Savings Program for anyone who is eligible for treatment that could help to cover out-of-pocket expenses. Also, if you’re an appropriate candidate, free samples may be available through your headache specialist.

Disclosures: This post was created in partnership with Allergan®. My treatment was not provided by the brand, and all content and opinions above are my own.

Please see additional Important Safety Information below or visit www.BOTOXchronicmigraine.com for more information.

IMPORTANT SAFETY INFORMATION (continued)

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 taking 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 its ingredients (see Medication Guide for ingredients); had an allergic reaction to any other botulinum toxin product such as Myobloc® (rimabotulinumtoxinB), Dysport® (abobotulinumtoxinA), or Xeomin® (incobotulinumtoxinA); 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, or 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; weakness of forehead muscles; trouble raising your eyebrows; drooping eyelids; 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 medicines may cause serious side effects. Do not start any new medicines until you have told your doctor that you 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®, or Xeomin® in the past (tell your doctor exactly which product you received); have recently received an antibiotic injection; take muscle relaxants; take allergy or cold medicines; take sleep medicine; take aspirin-like products or blood thinners.

Other side effects of BOTOX® include: dry mouth, discomfort or pain at injection site, tiredness, headache, neck pain, eye problems: double vision, blurred vision, decreased eyesight, drooping eyelids, swelling of eyelids, dry eyes; and drooping eyebrows.

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.

Please see BOTOX® full Product Information including Boxed Warning and Medication Guide.

BOTOX® is a registered trademark of Allergan, Inc., an AbbVie company.

All other trademarks are the property of their respective owners.

© 2021 AbbVie. All rights reserved. BCM143701 01/21

Footnotes:
1. BOTOX® (onabotulinumtoxinA) Prescribing Information. Irvine, CA: Allergan USA, Inc. September 2020.
2. Headache Classification Subcommittee of the International Headache Society. The International Classification of Headache Disorders: 3rd edition. Cephalalgia. 2013;33(9):629–808.
3. Data on file, Allergan; Nov 2019. Out-of-pocket costs and insurance plans vary. Reimbursement Coverage. Data are subject to change. Data are not a guarantee of coverage, or partial or full payment, by any payers listed.

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