A Professional Patient's Tips for Managing the Chronic Migraine Journey

Patient Journey
January 30, 2022
January 10, 2022
6
minutes
A Professional Patient's Tips for Managing the Chronic Migraine Journey

I’ve had migraine for over a decade and I’ve been a chronic migraineur (a diagnosis which is defined by a patient having migraine 15 or more days per month) for nearly five of those years. More days than not, I have a migraine.


When you live with chronic headache or migraine, successfully managing this condition can seem like an impossible task. Debilitating migraine symptoms can make it really hard to show up as my “best” self, whether professionally or personally. I no longer work a full time job – on high pain days, I often only have enough energy to cope with symptoms, yet alone complete tasks that require intense focus. Migraine also impacts my relationships, too. Big events are a source of anxiety for me, as I often have to cancel or reschedule social activities because of my body’s unpredictability. And on top of managing daily symptoms and responsibilities, figuring out and implementing a treatment plan takes precious time, energy and headspace.


I’ve spent the last five years as a “professional patient,” exploring treatments and techniques to reduce my chronic pain and improve the quality of my life. Regardless of whether you’re just beginning this journey or whether you’ve been trying to find relief from chronic headache or migraine for years, here are some tips to manage your condition. No matter where you are, remember: there is hope for you!


Find the right specialist


Like many patients, it took me a long time to realize that not all neurologists have expertise in treating migraine; I needed to actively seek out a neurologist who was also a headache specialist. 


At first, I met with general neurologists that didn’t specialize in headache disorders – but these practitioners didn’t fully understand the complexities of chronic migraine or my needs. One neurologist had little to no experience treating chronic migraine, and only offered generic advice that was pretty useless. Another neurologist paid little attention to my unique experience, and gave me a treatment plan that ended up worsening my condition for a long time.


Although I finally found a neurologist who was also a headache specialist that gave me excellent care, I still felt frustrated by my impaired quality of life. I also had to wait multiple months for my initial appointment, which left me struggling to find adequate relief on my own during the interim.


I used to dread the long drives to see my neurologist, and worried about how the stimuli (lights, sounds, or smells) in the waiting rooms would trigger my migraines. And regardless of how far I had driven or how difficult it was to secure an appointment, the majority of my in-person appointments were usually spent talking with the doctor, which could be done remotely. 


Now, as a member of Neura, I’m guaranteed access to outstanding care from the comfort of home. During telehealth appointments, I meet with a top neurologist that specializes in headaches, who offers incredibly helpful suggestions about triggers and treatments. Neura’s convenient virtual video visits also eliminate my travel triggers and the potential stimuli waiting for me in a doctor’s office. It’s such a relief to know that I can talk to an extremely knowledgeable doctor whenever I want, and get my questions answered immediately.


Get compassionate care


It can be really vulnerable to share some of your most intimate health information, especially if – like me – you’ve been dismissed or disrespected in the past. I’ve had doctors undermine my experience, telling me that my migraines are side effects of other health conditions, instead of affirming that migraine is a debilitating, inherited and neurological condition. Other doctors told me my migraines were completely due to stress, and that I “just needed to relax.” In the past, I’ve had to justify my pain and defend myself, instead of being met with concern and a willingness to help. 


On the other hand, every doctor and care coach at Neura leads with care and really listens. Whether in a virtual chat or in a video appointment, I’ve always felt seen, heard and reassured. Unlike doctors in the past who disregarded my experience or who said that my case was “too complicated” to treat, the headache specialists at Neura patiently partnered with me to hear my health history, answer my in-depth questions and review extensive treatment options. In addition to an impressive depth of knowledge, the headache specialists at Neura are always compassionate, encouraging and validating. 


Most importantly, I always leave a session feeling hopeful.  When you’ve found the right doctor, you’ll know because you’ll no longer feel worried that you’ve run out of options. A truly knowledgeable headache specialist will always be able to identify additional treatment options for you to try if your condition is no longer manageable. 


Be treated as a “whole patient”


Over the years along my migraine journey, I’ve often felt frustrated by the long gaps in communication between appointments, as well as a lack of focus on my overall wellbeing. Most neurologists I saw were only focused on what medication they could offer me, rather than a full body approach.


Something that Neura does differently is offer every patient access to a care coach that provides emotional support and personalized suggestions to keep you on track. With my personal care coach, I have someone actually check in on how I’m doing each week – and give me dedicated, personalized nutritional, exercise and lifestyle changes recommended by the doctor.  I can also ask follow up questions anytime to my doctor and care team, and I get answers right away. There’s no more waiting months in between appointments to get the care you need.


Neura’s care coaching has helped me to address the full spectrum of the components of my pain – the physical, emotional, and psychological angles. Using their recommended lifestyle strategies and techniques help calm down my nervous system and return my brain to a more healthy, resilient state. Because of this, I’ve regained the ability to do so many things I had once thought impossible. A year ago, I was still nervous to go out in quiet public spaces. But just a few weeks ago, I went bowling - migraine free! It felt thrilling to do an activity that was so filled with migraine triggers. I utilized techniques learned during care coaching to manage my emotional and mental reactions, which helped me stay calm and prevent a panic-fueled attack.


It means so much that Neura has someone specifically dedicated to help me look at the bigger picture of my overall well-being and integrate new healing techniques into my daily life. Although traditional medications remain an important part of my treatment plan, finding new ways to care for my whole self has really helped to reduce my migraine pain and improve my quality of life.


Whether you feel like you’ve tried everything out there to manage migraine and headache, or you’re just starting to explore your options, there is hope for you. Meeting with a compassionate neurologist who is a deep expert in headache medicine can make all the difference in the world. There’s nothing worse than feeling disbelieved, dismissed, or disempowered. If you aren’t sure that you’ve found the best possible care or met with someone who treats you as a whole patient, I recommend giving Neura a try!


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Carolyn Rivkees, Migraine Patient
Carolyn Rivkees is a writer, consultant and patient advocate, who runs the popular Instagram community @chronically_cheerful.
About the Author
Carolyn Rivkees is a writer, consultant and patient advocate. She has lived with migraine for over a decade, and her episodic migraine attacks became a chronic, near-daily occurrence about five years ago. After leaving a career in communications due to her health, Carolyn began sharing her firsthand experiences to help others navigate wellness challenges. She runs an Instagram community, @chronically_cheerful, to inform and inspire those living with migraine and other chronic illnesses, and also partners with brands working to help people feel better.

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