My Voice
I have unabashedly said, “I wish everyone had a migraine attack once.” In some twisted way, the coronavirus pandemic is doing just this. The entire world has just been hit, in a sense, by a migraine pandemic You wanna know why I wish every single person experiences a full-body, four-phased, 72-hour migraine attack? Because the world doesn’t understand. Because the world doesn’t comprehend how horrible life can be with migraine disease. The world is ignorant, uncaring, judgmental and harsh to those who have migraine. Because in the madness of this pandemic, I hope people will look outside of themselves. Yet this serious, global pandemic is giving the whole world a small taste of life with chronic migraine. The non-head pain, if you will. The struggles, fears, anxiety, isolation, financial burden and uncertainty we face daily. Those who are really paying attention, should notice how disparate the term “normal” is, depending…
Keep Reading...
Today, August 31, is International Overdose Awareness Day (IOAD). Started by an organization in Australia in 2001, this is a day to not only remember those lost to overdose, but also to educate. “The tragedy of overdose death is preventable and more must be done to save lives,” says the Penington Institute who started this initiative.
Keep Reading...
Aimovig, the first CGRP inhibitor drug, was approved by the FDA on May 17, 2018. This is extremely exciting news, but there are a lot of questions swirling around as many of us are anxious to try this new medicine. For the most up-to-date information about Aimovig visit Aimovig.com. The site includes Frequently Asked Questions, information on how the drug works, safety information AND information about a co-pay assistance program and a two-month free trial program. Worried About Access To CGRP Inhibitors? Many patient groups are working to address anticipated access issues to this new medication, including how to get a prescription from your doctor and to how to get your insurance company to cover it. However, these questions won’t be answered overnight. You are not alone and you deserve access to care that is appropriate for the disease you have. The information below may answer some of your immediate questions, guide…
Keep Reading...
To find out more about ICER (Institute for Clinical & Economic Review) watch this video or check out the Patient Input Guide. This is my submission to ICER about the importance their review of new CGRP inhibitor drugs will have on my life and our entire community. -Katie ICER OPEN COMMENT PERIOD ON CGRP INHIBITORS FOR MIGRAINE I had my first migraine attack with aura at age five. My vision was obstructed by a sparkling crescent moon shape. Within 20 minutes it had disappeared. Next it felt like someone was pounding a nail into my skull, over and over again. My parents held me in their arms for hours as I screamed in pain. I became dehydrated from crying, only making the searing pain in my head worse. The daylight streaming in from the window felt like more daggers. After six hours of torture, I vomited until my stomach was…
Keep Reading...
Introduction I wanted to share my response to the ICER patient input questions. I definitely went into a lot of detail. Please do not feel you need write a book. The questions that are the most important to focus on are #1, #2, #4, #5, & #7. It’s ok to leave questions blank. To learn more about the Migraine Patient Open Input period and how ICER’s review will impact access to new CGRP medications, visit https://www.headachemigraineforum.org/advocacy/ The ICER form can be found here: https://icer-review.org/patient-guide-to-open-input/ This is our chance to be heard! But the deadline is this Thurs, Nov 30th at 5pm EST! If you want to share your responses, let me know and I’d be happy to post them there! ____________________________________________________ On which ICER report are you providing input? Erenumab for Migraine Organization (if applicable): Patient Briefly describe your disease experience, including your diagnosis, treatments you’ve used, etc. Be as…
Keep Reading...
Can we talk about health care for a minute? I know, there’s been so much political discussion about it that it is so hard to figure out what’s going on. I’m not going to go into any of that because it’s irrelevant. Why? Because while the new Administration and members of Congress have come up with numerous changes to the Affordable Care Act (aka Obamacare), but nothing new has been passed into law. Bottom line is that the same rules apply as when it was enacted in 2014. Why Pay Attention? I bring this up because it’s open enrollment time. Through December 15th, if your state participates in the healthcare exchange, you can sign up or change your current plan. Let’s talk basics first. If you have health insurance coverage through your employer, this doesn’t pertain to you (but it could to someone you know, so don’t stop reading!). If…
Keep Reading...
October is Breast Cancer Awareness Month. Football and baseball players will be wearing pink. Fundraising walks will raise millions of dollars. It’s a worthy cause. I’m happy to say that I’ve had a friend beat it twice. However, did you know that September was National Childhood Cancer Awareness Month? This year I decided I was going to honor those who have been touched by this disease in October, my cousin’s birth month. Rachel would have been 28 this week. Warning Signs At 18 months old she kept complaining that her tummy hurt. When my Aunt took her to the doctor, the diagnosis was not what they had expected. Rachel had neuroblastoma. This form of cancer is the most common type found in infants, typically diagnosed around one to two years old.i Cancer in children, especially at Rachel’s age is hard to recognize because they can’t really verbalize what they are feeling. Additionally,…
Keep Reading...
Do you embody empathy when you cross paths with others? The homeless person in the subway station carrying a backpack and all of his worldly possessions in a shopping cart. The mother with a screaming kid in the grocery store. The woman who parked in the handicapped space, but walked into the store unassisted. We’ve all seen situations like this and likely judged those people. Why can’t the homeless man go to a shelter and get a job? Why isn’t that mother doing anything about the temper tantrum her four-year-old is having? That woman must be abusing the handicapped system by parking when there’s clearly nothing wrong with her. How often do you think about walking in their shoes instead of judging? If you talked to each one, you may understand that the mother in the grocery store has chronic migraine and is so exhausted that she barely had the…
Keep Reading...
It’s always scary to get an envelope in the mail from the Social Security Disability office. Recently, one of those showed up in my mailbox. It was time to recertify my disability. It’s been three years since I was awarded benefits. The Social Security Administration has the following guidelines on when and how often someone would be asked to recertify their condition: If medical improvement is: “Expected,” your case will normally be reviewed within six to 18 months after your benefits start. “Possible,” your case will normally be reviewed no sooner than three years. “Not expected,” your case will normally be reviewed no sooner than seven years. I fit into the “Possible” category. I rely on these benefits and can’t afford to miss anything in this process. I spent countless hours gathering up all the information I had so there would be no doubt that my chronic migraine disease was…
Keep Reading...
Katie is a professional patient, writer for Migraine.com, US Pain Ambassador, patient advocate, speaker, and freelance writer.