Monday, December 10, 2018

Establishing Care With a New Provider: My Journey

A friend of mine recently moved to a different state and is facing the daunting task of finding and establishing care with a new healthcare provider. When she shared this with me, I remembered all of the feelings and emotions that had flooded me, when I faced the same thing. Sharing my journey to help others is a big reason why I started this blog, so it only seemed right to sit down and write. 

This will be a multi-part post. I'll share my story, and then I'll lay out some guidelines to use in your own journey. 

Establishing care with a new healthcare provider?
Photo by rawpixel on Unsplash

I’ve been there. It can be a time of mixed emotions. Anxious. Overwhelmed. Scared. Exciting. Hopeful. 

I’d known for a long time that my doctor was out of treatment options for me to try. He did his best to help me maintain, but he had nothing new in his toolkit to offer. Despite him outright telling me multiple times over several years that this was the case, I wasn’t able to hear and accept what he was telling me. 

Honestly, I was afraid. I’d been with this doctor for 7.5 years. He was the first headache specialist I was referred to in the year following my car accident (The Battle Begins). He had helped me through so much, and I was comfortable with him.
  • I was afraid of starting with someone new. 
  • I was afraid that I’d have to retry failed treatment options. 
  • I was afraid I’d have to prove and defend my pain and disability levels. 
  • I was afraid of the monumental task that starting with a new doctor while having such a complex medical history felt like.
I had spoken with a couple doctors at patient conferences about what was important for establishing a new relationship with a healthcare provider. This helped ease my mind a little bit about what I needed to do to prepare, but it still took me a year or two to get to a place where I was prepared to take that step. 

My doctor was very supportive and kind about me moving on to a different headache specialist. He sent the referral and continued my care until I could get in with the new doctor. 

I prepared a lot at home for that new doctor, but much of it was to make sure my mind was in order... for me, having order can help ease my anxiety, even if only a little bit. 

My first appointment with my new headache specialist was incredibly smooth. I had submitted all of the new patient paperwork prior to the appointment. I never felt like I had to defend myself in any way. He didn’t question how much the pain has disrupted my life... he trusted my word. That was hugely uplifting and powerful. Since each doctor has different preferences about what they want tracked, I clarified that with him on our first visit. We also discussed expectations for communication between visits and for emergencies. 

I left that visit “grateful for renewed hope with a new specialist. Looking forward to this chapter, as it already promises opportunities to make positive changes in my life. The road won’t always be pleasant… sometimes it’ll be downright miserable… but, I have a good support team that knows I can do it, even when I’m uncertain.” 

I only saw this doctor a few times before I moved a couple states away. I struggled with separating from a doctor that was a true treatment partner. We had barely scratched the surface, and the fear that I may not find another doctor that I trusted and would be a partner in my care lay heavy on me. 

Time to start over... but on a much larger scale, as I would need a new dentist, eye doctor, and primary care doctor, in addition to a headache specialist. It felt like a heavy task, but it was no longer monumental. There was a sense of hope that getting new perspectives of my health might reveal new possibilities in treatment and quality of life. 

I chose to find a headache specialist first. My previous doctor referred me to my current doctor and continued care until I could be seen. 

My first appointment with my current headache specialist was a lot like the previous one. I submitted all of the new patient paperwork prior to the appointment. The appointment was smooth, which I attribute partially to me continuing to hone in on my experience. We, too, discussed expectations and ensured we were on the same page as one another. 

That appointment initiated a series of consults and testing to address other health concerns and comorbid diseases. I saw around 8 new doctors (in addition to testing) in the following 5 months. Each doctor needed my story, but from a different vantage point... from the vantage point of his/her specialty area. It was exhausting, but I learned so much. 

I realize that not everyone has access to a headache specialist and that not everyone will have a smooth, positive experience. There are not even close to enough headache specialists available (there are less than 500 in the United States), and most doctors don't receive much education about headache medicine. All we can do is be prepared to do our best to find a healthcare provider (even if it's not a headache specialist) that is willing to partner with us in our care. 

"The fears we don't face become our limits." - Robin Sharma

Thursday, November 29, 2018

Step of Faith

As I return to my blog, I've taken some time to read some previous posts that I've written. It has highlighted so much of how I've changed over the years. My journey has been filled with ups and downs, light and darkness, joy and sadness.

My very first blog post, The Battle Begins, was a step of faith that I took during a very raw time in my life. I continued to be open about my journey in subsequent blog posts, and have striven to carry that vulnerability into more of my interactions.

As I would expect happens with most writers, I have drafts of thoughts and ideas that vary from unfinished to simply never posted. Some, I may not return to, but others will be shared on the blog. I don't have the desire, energy, or recollection to recount everything I might've written about over the past couple of years, but there are some experiences and lessons that should be shared.

Photo by chuttersnap on Unsplash
Ultimately, I'm not sure where writing will lead me. I'm taking another step of faith in getting back to
my blog and sharing more of my journey.

If there are any topics that you struggle with in your own journey, feel free to reach out or comment. Sharing our stories and supporting one another along our paths is powerful.

"Faith is taking the first step, even when you don't see the whole staircase." - Martin Luther King, Jr.

Monday, November 26, 2018

Chronic Migraine Warrior Returns

I have been away from my Chronic Migraine Warrior blog for quite some time... a couple years!

Over the past few years, I shifted my energy and focus away from the blog. During that time, I moved to a different state, took a closer look at all aspects of my health, and continued my patient advocacy work. Lots of change and learning!

I feel the nudge to get back to writing... and my blog is here and ready. Let's see what happens!

"Courage, above all, is the first quality of a warrior." - Carl von Clausewitz

Friday, September 28, 2018

Two More CGRP-Drugs Approved by FDA

May 17, 2018 was a Momentous Day for Migraine: First CGRP-Drug Approved by FDA. It was the first FDA approval in a new class of preventive medications developed specifically for migraine.

The month of September has seen the FDA approve two more CGRP-related medications.

On September 14, Teva announced the FDA approval of Ajovy (fremanezumab-vfrm), "a humanized monoclonal antibody that binds to calcitonin gene-related peptide (CGRP) ligand and blocks its binding to the receptor" (https://www.businesswire.com/news/home/20180914005613/en/). It's available in monthly or quarterly doses, via self-administered, subcutaneous injection(s) from pre-filled syringe(s). The list price is $575 per monthly dose and $1,725 per quarterly dose.

On September 27, Eli Lilly and Company announced the FDA approval of Emgality (galcanezumab-gnlm). It will be available as a once monthly, self-administered, subcutaneous injection. The first month will be two injections, followed by a single monthly injection.(https://www.multivu.com/players/English/8386051-lilly-emgality-fda-approval-migraine-treatment/)

The CGRP class of medications work to stop CGRP protein from binding to the receptor. Aimovig, is a monoclonal antibody against the CGRP receptor. Both Ajovy and Emgality are monoclonal antibodies against the CGRP protein. There is one more medication that targets the protein that has not yet been approved by the FDA.

Further reading:

Each of the companies that have come to market with CGRP medications for migraine prevention are offering patient support programs, specifically for those with commercial insurance.

Here are the links for the different medications that have been FDA approved:

Thursday, May 17, 2018

Momentous Day for Migraine: First CGRP-Drug Approved by FDA

Huge news! Today, the first-ever preventive developed specifically for migraine was approved by the FDA.
"The drug, Aimovig [erenumab-aooe], made by Amgen and Novartis, is a monthly injection with a device similar to an insulin pen. The list price will be $6,900 a year, and Amgen said the drug will be available to patients within a week." (https://www.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html)
This new class of medications targets the calcitonin gene-related peptide (CGRP), which is believed to play a critical role in migraine. There are three other drugs in this class that are aimed at FDA approval in the coming months. During clinical trials, all of these meds have done remarkably well: more effective than the meds currently used for migraine prevention, and with fewer side effects. This could be life-changing!

Further reading:

Wednesday, June 1, 2016

Migraine & Headache Awareness Month 2016

Today is the first day of Migraine and Headache Awareness Month (MHAM) 2016.

The theme for 2016 is Rule Your Headache Disorder: Be actively engaged in your treatment.

Let's spread awareness, diminish stigma, and foster hope and understanding!

This post was written as part of the Migraine and Headache Awareness Month (MHAM) Social Media Challenge.
Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.