As the Migraine World Summit began to wind down, they finally took the time to focus on the difficult cases that come with migraine and tried to shed light on what “living” with migraine should and can look like.
These two days were difficult for me as some of the options don’t seem as available and it sunk in that there are still plenty of non-responders when it comes to all combinations of treatments.
The final day however, really pushed the idea that the work I do here on my blog and the extended reach I have with The Mighty is something that is important and needed. It also connected me with some wonderful individuals who have truly inspiring stories.
Day 7: Difficult Cases
The Keys to Better Emergency Care
This talk really echoed my piece from a few weeks ago regarding the difference between seeking care in an emergency room and urgent care. The concept was immediately introduced that the ER is not the place for migraine patients in part because of the large amount of triggers within the space, but mostly because we aren’t the type of patients intended to be treated in this setting.
The key thing that I took away from this talk is that people go to the emergency room when their standard care isn’t enough. The preventative isn’t working as well as it should, the abortives aren’t serving as rescue medicine. What this means is that the doctor who is treating us needs to work better with us to provide more tools for our emergency kits and perhaps change up our existing medications to find something that truly serves us.
The main suggestion was to have a variety of “abortive” type therapies available, whether they be medications or alternative options.
When it is available, utilizing the infusion clinic at your headache center is the best option for migraine patients, as it is set up to maximize comfort of patients and your doctors understand what you need. I think this is wonderful advice, except headache centers are few and far between and I’ve been the patient on a waiting list trying to be squeezed in and that is less than pleasant.
Controlling Unresponsive Chronic Migraine
This talk was interesting as it presented this concept of “central sensitization” to me. Essentially, the brain is more sensitized to everything, and as migraines become chronic that sensitization becomes more constant. It takes the idea that we are light sensitive during a migraine attack, but as the migraines become more frequent, even outside of an attack that sensitivity to light isn’t going to go away.
It also means that we have a lower threshold when it comes to things setting off an attack than someone with episodic migraine. The structures that are sending the pain signals and other sensory inputs get strengthened and therefore become more active. This points towards interesting research and the idea that if we can de-sensitize these connections in our brain we can move out of the chronic cycle.
Dr. Dodick talked a lot about taking a total multi-modal approach with his patients, and that by starting from scratch and analyzing every single aspect of our condition, our comorbidities and our lifestyle, improvement can be made. He also pointed out that “improvement” doesn’t mean curing migraines, as migraine patients truly have low expectations and the smallest amount of improvement is a huge step in the right direction.
When it comes to chronic patients, one of the key factors is reducing the amount of medication we are relying on. The pain medicine we use is truly meant to be temporary, but with a condition that will last our entire lifetime, chronic patients especially, need to incorporate non-drug related therapies.
At the end of the day, treatment revolves around elevating our thresholds so that we don’t get a migraine from every little thing in our lives.
I found this talk incredibly hard, because this particular doctor has a huge success rate but he’s within the Mayo Clinic system. It would be a dream to be able to not only afford, but to travel to one of these large health care facilities and be treated by the best in the field. But for many many patients like myself, it truly is just a dream and we’re left to our own devices and our own research to create the same multi-faceted approaches in hopes we can break the cycle of chronic migraine.
Hope For Refractory Chronic Migraine
I have chosen to omit this video as it didn’t present any new information which was incredibly frustrating as someone who has what would be considered refractory migraine – meaning my migraines don’t respond to treatments.
Treating Attacks: Real Life Case Studies
I found this talk to be incredibly interesting as it showed the specific approaches to various individuals. Although I will not be breaking down the specific cases mentioned, I wanted to share the method of approach as this is what you should be looking for from your doctor.
When you get a formal migraine diagnosis, it is extremely important to spend a bit of time with your physician breaking down every part of it. You need to discuss your history, and not just typical medical history but include your symptoms and your sleep habit, your diet and exercise habits, how stress impacts your life and talk about your job. Your doctor needs a full picture of your life in order to treat you.
The next step will be understanding that you’re going to have to make changes in your life. You’re going to have to document your migraines and aspects of your life in a way that makes it easy for you and your doctor to understand. And you’re going to have to be willing to try various medical approached to determine which is best suited for you. Patient education is huge, and conveying that this is a lifelong journey, not something like a cold or the flu, is incredibly important. Treating migraine is about adapting and continuing to push through to find treatments that are optimal. You truly can’t settle and just accept your pain for how it is.
Day 8: Living
Thriving With Multiple Chronic Conditions
Essentially, this talk shared the journey of Nim Lavani with the American Migraine Foundation. Her personal story is incredibly inspiring, as she took her experience with hemiplegic migraine and other chronic conditions and found a way to use her voice in an advocacy type of role.
She shared various resources available on the American Migraine Foundation’s website, such as information on different types of migraines and the “Find a Doctor” tool.
This talk really stressed the importance of using our experiences and pushing to be heard. We need our legislators and school officials and family members to understand the incredible impact that migraine has in order to increase funding and awareness.
Beware: CGRP Access Challenges Ahead
It’s no secret that treating migraine just got a bit more exciting. In the last year there have been 3 new medications that have hit the market that all fall under the CGRP category. These medicines are designed specifically for treating migraine, but they come with a pretty big price tag, insurance challenges, and questions left in the air as to continued access of the drugs.
This talk stressed some of the concerns and explained a bit of the process that comes with new medications hitting the market.
Currently, insurance companies are in negotiations with pharmaceutical companies and with such a high cost drug, the question of effectiveness plays a huge role. Around 1/3 of patients have relief while 1/3 don’t respond at all. The debate exists as to how much of the cost will they cover and what companies will cover it. The main problem is that the “free” programs provided by the production companies are running out, and patients may be left in a lapse of treatment when their free coverage expires but their insurance hasn’t made a decision on coverage.
A secondary issue that has come up is the concept of needing multiple high cost treatments. Take a CGRP and combine it with Botox. What happens in the cases where patients need both to successfully manage their migraines? Often times insurance companies have an “either or” policy in place as using both treatments is too high of a cost to justify.
This talk truly pushed the importance of starting to work with your insurance companies ASAP. If you are on a free program, go through the appeal processes prior to the free program running out. Keep records of your improvement. Push to share your story. Be an advocate. All of these factors will help insure proper coverage and increase awareness.
Understanding Your Workplace Rights
There is nothing harder than trying to work through a migraine. There’s also nothing harder than losing a job because 2 weeks in a row you couldn’t get shift coverage even though you were in the emergency room… or the glares from coworkers that think you’re faking it… or the smaller paycheck because you simply can’t work enough hours…
Working with migraine is comparable to hell.
The first issue brought up during this talk actually has to do with us – the migraine sufferers. How many times have we chosen to just hide the pain in fear we won’t be believed or may lose our job? Hiding it and not being upfront with those we work with actually contributes to the stigmas surrounding migraine. We need to be upfront and confide in our bosses and coworkers to help educate them, but to also understand what accommodations we can ask for.
For an employer with workers who suffer from migraine, it is in their best interest to strive to meet your needs. Forcing people to work through migraines or lie about why they’re missing work costs the company a lot of money. Providing access to healthcare options and paid sick time helps the employees stay in better health, making the company more money.
One unique thing that came up in this talk was that disclosing our migraines also allows us to apply for FMLA – meaning we can substitute sick days for medical leave without compromising our position. This is incredibly important for patients who are interested in trying out new medications or patients who need to spend a week as an inpatient to receive proper care. This ensures that your job is available upon your return.
One of the biggest challenges is meeting criteria for companies to not legally be allowed to discriminate against you… and yes there is criteria. Typically in the form of 15 or more employees at your place of work… which is incredibly limiting if you aren’t working in a corporate type of job with mass amounts of people… Us small town folk don’t get the privilege of being protected because a business still has to function and reasonable accommodations can’t always be provided in such small environments.
A variety of reasonable accommodations were mentioned such as flextime, telecommuting, changing out fluorescent lights, being allowed to wear headphones, and having anti-glare computer screens. It’s also reasonable to request a place you can rest.
Beyond Guilt and Shame: One Woman’s Journey
This was a huge highlight of the Summit in my opinion and it dove into Jaime Sanders’ story with migraine and how she dealt with migraines, fibromyalgia, depression and anxiety. Jaime is an incredible inspiration and I invite you to check out her blog: The Migraine Diva
Her story depicts dealing with migraines starting at a young age and how her condition continued to develop. Jaime is a mother, wife and advocate who is truly a inspiration within the migraine community.
Day 7 & 8 Reactions
I’ll be the first to admit I trailed off a bit during the end of the Summit. I found that everything that was talked about in “Difficult” cases was something I’ve already touched on and shared more times than not. I think the most frustrating thing is that us “difficult cases” are almost expected to spend everything left in our savings account to seek out one of these top doctors for our care. And that isn’t right.
I found that headlines are misleading. Hearing that hey – there’s hope from refractory migraines – and the only piece of hope is the advice at the end saying “not to give up hope” felt like a slap in the face.
Day 8 was a bit more uplifting as we were introduced to some incredibly powerful women who have made successful careers out of advocating for migraine patients and bringing awareness to this condition. It stressed how important it is to share our stories and to keep sharing them.
Overall, the Migraine World Summit was an incredibly valuable experience and I’ve come away with some new important pieces of information. The most important thing to me was recognizing that yes triggers play a role, but they wouldn’t be there if we didn’t have migraines. We don’t have to constantly blame ourselves and second guess everything we eat because odds are good the migraine would be there anyway.
Learning about new devices and the continued stress placed on finding the diet meant for us really gives me a direction to go when it comes to managing my migraines and hopefully scaling the days back to a truly livable number.
For now, migraines seem to be something I actually have control of. I’ve got a new scoliosis diagnosis which brings in to question the potential for a CSF leak playing in to my head pain. Or perhaps it’s just a scoliosis diagnosis. I still have unrelenting abdominal pain and see a specialist next week to hopefully move forward on that.
So here’s to the next few months of figuring out new treatment plans and treating all aspects of my health as a whole and striving to really have a holistic approach.