What's Your Full Time Job? One Young Woman's Story of Migraine Managment

Using my Cefaly Headband.

Using my Cefaly Headband.

A lot of people ask why I share this aspect of my life, it’s not for attention or sympathy. I mainly share because my life has fundamentally changed since my migraines became chronic and debilitating around the age of 20. In many regards this condition has taken over my life. I share as a way to keep all of my very large extended family up to date on my progress. I also share because I hope to leave those who are interested with a little more education on what exactly migraines are and what it is that us chronically ill/invisibly ill patients live with.

We don't receive the same sympathy someone with cancer or a more understood condition might, instead we deal with a heck of a lot of stigma that makes our lives even more challenging. I hope to relate to those who are afflicted with a condition like mine and to educate those who don't always understand what chronic conditions look like and mean.

I have met many other migraineurs through sharing my journey. I enjoy advocating and teaching people about this condition based on my education and experiences the best I can. Please don't hesitate to reach out (direct/private message, comment, etc.) if you're confused or have any questions that maybe I can answer!

I don't need anyone to feel badly for me, or anything like that. In fact, I don't feel bad for myself. I find myself saying a lot, “Everyone has something," and it’s true- if not a chronic illness, every individual is facing some adversity and making it through it, some people unfortunately find themselves in worse situations than my condition has left me with. Those people offer me encouragement, hope, and perspective. I believe that this is just a part of my life- not my destiny and I believe it has made me stronger in ways I never could've imagined. Support, understanding, and encouragement are some things I am always happy to accept. I can't express how much my families’ support has meant to me throughout this, their efforts to learn more about my condition is honestly touching.

A major reason I continue to share is that I have met many other migraineurs along the way and I like to share new treatments, medications, and the progress I have made, as well as see how they are progressing. I network amongst them and we bounce ideas off each other, share what our doctors are trying, and ultimately offer each other a lot of moral support. Shout out to my migraine sister warriors; you guys get it, no explanation required. I think and pray for you ladies daily and I have confidence that we will all find relief permanently one day! There is always hope in new research and dedicated physicians!

Now to the real reason for THIS post. I am frequently asked a lot of questions; why this clinic is different/ have they figured it out yet/ am I better now/ what’s causing all of this?…etc.  I wanted to take the time to clarify some of these frequently asked questions I receive and update everyone on where I am at in my pursuits for improved health.

Migraines aren’t like a cold, where you take medication (antibiotics) and it goes away, or like cancer where you can be pronounced in remission. Migraines are a chronic condition, there is NO cure. For many, like myself, migraines are a daily part of my life and I have to adjust accordingly. I will still have bad days or cycles and that doesn't mean that a clinic or medication or doctor didn't work. It is discouraging at times that things don't work 100% or that no doctor can guarantee a cure, but you learn how to manage your chronic condition and with the right team of doctors and concoction of medications and treatments that are completely individual for each patient, things can start to look up. I may be speaking totally prematurely and what's working for me this month may not be enough in the future, or could go the other way and be cut back to less dosage and less treatments. It flows and there are ups and downs that come with this condition. Especially for those who are close with me and see me or talk to me daily, they can tell a bad day from a good day and clearly see how my personality and behavior changes as I become sick or as the pain becomes debilitating. There is a plan in place for those days and sometimes it works better than it does other times but again, that's okay.   

This clinic, Michigan Headache and Neurological Institute (MHNI) in Ann Arbor is different because it is renowned for being a top facility in migraine treatments with leading physicians and specialists that treat migraines specifically and have researched them for their entire careers. Celebrities go to MHNI... I guess we can go ahead and add me to that list!

Botox treatment

Botox treatment

They have a program where they refer severe patients who meet a certain criterion to the local community hospital, St. Joseph Mercy Chelsea Hospital in Chelsea, Michigan where they offer an inpatient head pain unit of the hospital, who's doctors have a close professional relationship with the doctors at MHNI. Over Christmas break I made appointments for the Northwestern Neurologist I was referred to and she agreed to treat me but first wanted me to be seen at MHNI.

After being seen at the MHNI clinic as a new patient, I exceeded the criteria (like a college applicant) for the inpatient program. I spent a little over a week in the hospital, in the inpatient head pain unit and then followed up my care at MHNI. Ultimately MHNI will work long term with my primary physician/neurologist at Northwestern to carry out my treatment plan. This is different because it takes time to develop relationships with the top physicians in these fields and to get referrals and be on waiting lists and schedule appointments that I'm traveling long distance to currently, and have medical records sent…etc.

 It is honestly like a full time job to coordinate all of my health care; between prescription refills, medication deliveries, scheduling appointments, getting blood work, working with insurance, finding physicians, researching my condition/medications/doctors/etc, rescheduling missed commitments due to sickness, filling my medicine tray for the week, keeping a pain diary, organizing all my medical records, sending test results/medical records, paying medical bills, organizing myself as a disability student and all of the extra work that comes with that as well- it can be a lot to handle, even though a lot of these efforts aren’t things people typically consider.

Prior to being treated at MHNI, I was exhausting all options for care in my area (Columbia and Kansas City). With the help of Paul's mom Ann, I was able to get referrals to physicians in the KC area where I have been treated for the last three years regularly. After being hospitalized this summer (2015) at the University of Missouri Hospital and working with every Neurologist in the Columbia area, and exhausting care options in KC; I had exceeded the care available to me by those physicians.

After three years of failed treatments, procedures, medications, hospitalization, etc, it was time to move on to more specialized care. I was seen at a clinic in Springfield, MO, which is actually surprisingly enough renowned as well. Dr. Cady is very well known in the migraine world and I was referred to Dr. Cady’s Headache Care Clinic by both my KC physicians and my team of neurologists at the University of Missouri Hospital. As many of you know my experience at Dr. Cady’s clinic was very disappointing and didn't result in any change in my daily chronic migraine. While I was left feeling very hopeless, I had no choice but to pursue my quest for relief.

My neck following Facet Blocks at Chelsea Hospital, Head Pain Unit

My neck following Facet Blocks at Chelsea Hospital, Head Pain Unit

Does that really answer why this is any different? I guess MHNI are where patients like me go, when you’re every doctor’s worst patient and nothing has worked for you (a failed patient). I am not their worst patient, in fact several other patients I met at the hospital are struggling even more than I am (which puts it all in perspective of course).

I am confident in their treatment plan and trust this team of doctors and I am going to pursue this with an open mind and cautious optimism. My goals are realistic, I don't expect a cure, I just want to get my life back so I can function normally and have a plan to treat a migraine when I get one which hopefully on this treatment plan will be much less than daily with my new preventatives…time will tell. Patience is necessary. It's a long-term commitment and I have short-term and long-term health goals I am working away at everyday.

New treatments include being completely detoxed off of triptans, which are a common abortive medication, but are also commonly over prescribed and overused, which can ultimately create more problems.

At this clinic, I do not even have triptans offered to me and they have, for the time being, been completely eliminated from my treatment program until I can repair the damage done to my neural pathways. I am on a completely new regiment of preventatives/vitamins/daily medications non-medical options to control everything from migraines, allergies, sinuses, neck pain, TMJ etc. and I have a new abortive plan for when I do get a migraine that doesn't include triptans at all and so far has been pretty effective at lowering my pain level to something manageable. There have been other obstacles that have come up in this process but we are working around them, as I said patience is required throughout this rather slow progress.

New meds on the left, old meds to the right

New meds on the left, old meds to the right