Migraine

Tracking Migraine

Image Description: Two notebooks – one with pink and green and blue stripes, the other grey saying “memoranda”

When it comes to migraine, the more we can understand it the better we can work to eliminate factors that make our pain and symptoms worse.

However, tracking pain and symptoms can come at a cost: more pain and more prevalent symptoms.

I’ll admit, I’ve spent a bit of time over the last few weeks arguing about the subject with leaders in this field regarding how much tracking is the right amount. I’ve also gone back and forth with other people with migraine discussing the negative impact constantly thinking about symptoms can have.

Everyone’s experience with tracking migraine is just as unique as migraine itself.

For about a year I had used a Migraine app as my sole mode of tracking. When I met with a headache specialist a year ago, I recognized that the charts printed out from the app told a great story, but didn’t do much in terms of working towards a solution.

What I’ve learned from where my beliefs differ from some top medical practitioners, is that tracking must be based on the goal for tracking. A doctor will argue against persistent tracking if the goal isn’t to make connections, learn and create new health goals that allow you to heal. Doctors are great – but our medical system focuses on treating not healing.

My goal is to learn from my body and to heal in the best way possible, so with that in mind I’ve laid out some guidelines to make the most of your tracking.

Rule of Thumb #1: Tracking and analyzing migraine should be done with an educational goal.

Every last one of us could list the top 5 symptoms we experience along with where the pain is located without ever writing it down.

However, can we necessarily say how many days a month we experience the pain and at what level? Are we simply taking our medication when we feel we need it and not writing down the day, time, and how long it takes to work?

Do we have an idea about our sleeping habits?

Most likely, some of us have a better understanding of these things, while others need to take time to write them down.

When first starting your migraine tracking diary, you’re going to want to get a real picture of it’s impact. Pick out some basic things such as frequency of migraines, pain levels, and dominant symptoms to pay attention to for a month. By looking at these items, you can share with your doctor a good baseline and decide how to move forward.

However, once you have a baseline you will have to decide what to continue tracking and if there’s something more valuable to track instead. Each item that is tracked should have a clear purpose. You should never be tracking just to track.

Rule of Thumb #2: Create your own explanation of pain and impact.

Image description: custom pain scale describing level of impact of migraine from 1 – 10.

I created a pain scale of my own. It connects my head pain and my symptoms and combines them in a way that represents the impact on my functionality.

For example a “4” indicates I’m not experiencing any pain, although a few lingering side effects may come and go. But a “9” indicates I am experiencing severe enough pain that most movement is limited – I can do the bare minimal such as forcing myself to get up and use the restroom.

It also indicates where my functionality stops. For me, I can function through constant pain that is distracting even with other symptoms present, but once the pain is high enough that I can only focus on it, I’ve gone over my threshold.

This tool is incredibly useful in many situations:

  • meeting a new doctor and describing my pain
  • being in the emergency room or urgent care and being able to pull this chart out and simply point to the current pain level
  • explaining to friends and family what I mean by a certain pain level
  • tracking day to day pain with a consistent guideline

Rule of Thumb #3: Decide what to track consistently and for what purpose.

Some things you may only track for a week or two and that is okay. I’ve tracked barometric pressure changes, how much water I’m drinking, all sorts of things on a one month basis. These were typically solely for observation. I was able to conclude that yes, barometric pressure changes did in fact have a correlation to my pain and symptoms. However, I can’t change the weather so tracking it is useless. When watching my water intake levels this gave me a good picture of how much water I was typically consuming and when I felt hydrated. It allowed me to realize that hey – I need to drink more water. But tracking it for longer than the initial observation also wasn’t worth while.

So what is worth while?

Image Description: Pain scale calendar for June with notes section and a list of days for symptoms ranging from mild to severe to caused by medicine.

I have two pages in my monthly bullet journal that are consistent items that I track: daily pain levels and top symptoms.

Daily Pain Tracker – I have used a similar chart to track day to day pain for about a year now. I fill out my journal in the morning and in the evening so each day is split in half and represents the average pain for that half of the day. At the end of each month I glance back at the chart and make three calculations: % of days at a 9/10 level pain, % of days at an 8 level pain, and % of days at a 7 level pain.

This has allowed me to make some incredible observations regarding effectiveness of treatments and lifestyle changes.

Best observation: In June of 2018 pain experienced between a 7 and 10 occurred 63% of the time. In October of 2018, while on Aimovig, this same high pain level jumped up to 80% of the month. After making some lifestyle changes, finally getting over the Botox side effects from January and February, and really dedicating myself to healing, this high pain level in April has gone down to 45%.

Symptom Tracker – I use this tracker as a way to pay attention to the most obvious symptom I am experiencing in a day. Typically nausea, drowsiness, or foggy are mentioned. I do not and will not track every symptom that occurs throughout the day. This is merely a place to understand if a symptom interfered more than my head pain. It can also be a place to note a new symptom as well.

This symptom tracker has helped me identify that on days where I am overcome with drowsiness, I have a higher risk of being in more pain the next day. It also helped me identify an increase in my abdominal pain and pushed me to pay more attention to understanding what made that pain better or worse.

You’ll notice below my pain tracker there’s a notes section for “conservation” and “free days.” These came about roughly six months ago when I realized some days I was tied to my couch because of pain, while others I was simply on my couch. I wanted to differentiate between the two to better understand how many days I truly was severely limited compared to days I was taking it easy.

This evolved to include “free days” as well, something that had been few and far between but over the last few months have increased.

Rule of Thumb #4: Create temporary spaces to track short term goals and observations.

A migraine tracking diary is not 100% related to migraine. This diary can be a great way to track small goals we have for the month in addition to tracking specific changes.

Image Description: Bullet style lists to track exercise and movement in addition to my sinuses.

One of my goals for this month is to stretch every morning. This fits into my “lets move” tracker. Stretching is an addition to my morning routine and is something I do while my coffee is brewing. It gives me a little extra time to wake up before checking in on the online world that is social media. I also track when I do yoga or laps in the pool, or any other more strenuous activities. Exercising more is one of my long term goals, but with migraine I fully recognize smaller goals such as moving each day are what I can handle now, and will allow me to reach some of my longer term goals.

Now why on earth am I tracking my sinuses?

In better understanding my head pain, I’ve come to the conclusion that my inflamed sinuses are contributing to a lot of my pain. This has led me to purchase a humidifier as the air in my room is typically very dry. I’ve also been focusing on consuming more anti-inflammatory foods. By tracking if I’m congested or not, I can see how the humidifier is making a positive difference. So far, I’ve noticed I’m less congested than I was this time last month and I’m also getting much better sleep.

Rule of Thumb #5: Limit your tracking to limit the impact on yourself.

Decide right off the bat when you want to set time aside to make your observations. Personally, I include my tracking with my journaling which I do after breakfast and before bed.

You cannot track the second you wake up because you haven’t had any time to make observations. You also do not want to start your day off thinking about pain and symptoms. During my after breakfast journaling, I fill in the first half of my pain scale to reflect how I’ve felt throughout the morning and I notate if I’m feeling congested or not. The rest of my journaling includes affirmations for my morning, expressing what I’m grateful for, filling out my goals for the day and my schedule while taking time to reflect on how I intend to approach the day and address any areas where I’m feeling good or worrisome mentally or emotionally.

At night, I fill in the rest of the pain scale, note if a symptom was bothersome during the day, jot down any exercise or stretching, and look at if I’m congested or not. I then spend some time reflecting on the good things that happened throughout the day, what challenges I faced and how I overcame them, goals I have for tomorrow and an evening reflection about how I feel about the day and any events coming tomorrow.

By including my tracking with my journaling, the tracking becomes very minor and isn’t the main focus. Each month I dedicate about an hour to looking over what I’ve tracked, what has changed, and what new goals I can set based on my observations. Limiting that to once a month prevents me from regularly thinking about it.

The only other times I analyze what I’ve written down is in preparation for a doctor’s appointment or if I’ve uncovered something that may be helping or hindering my progress and I want to see if my observations confirm or deny it. For example, I believed I had IBS but after struggling to find any food connection, I took another look and recognized that my severe pain came after taking pain medication which pointed to my pain being caused by needing to increase my fluid intake when I needed to take medicine.

The vague tracking that I do is very beneficial. The variables remain isolated which allows them to be looked at from multiple points of view. I can relate days I take medicine to days my abdominal pain is worse. I can symptoms to pain days. I can relate glance at times when I was stressed or spent time driving around and compare that to pain fluctuations. But, none of that is done regularly – only when looking through an educational lens to draw connections that will can result in changed habits.

Tracking cannot be done just because.

If you aren’t actively seeking new treatments and making lifestyle adjustments you don’t need to be tracking anything. Your doctor may want you to do something simple like track your pain or how many days you’re in pain, but that’s really it.

If you spend your entire day noting when your pain fluctuates or when each symptom presents itself, you’re going to spiral into being hypersensitive to it all. Eventually, this will either create more pain or create an over-exaggeration of it because you’re viewing a small incident as something much larger, it will naturally become much larger.

It is also important to note that using an app is totally fine too! I use Migraine Buddy to record an attack and notate certain aspects of the pain/symptoms but in all honesty the app hasn’t provided any incite and serves more as a back up to my journals and a method of formalizing my reports for my doctor.

Tracking can be great, but don’t allow tracking to be your life. You are not your pain.

I track to learn and self-educate on the way my body works.

I track to celebrate the incredible progress I’ve been making, because on a day to day basis I can’t always see it. Yet, seeing my high pain days dip below the 50% marker this last month has given me the best affirmation possible. I AM on the right path. I AM healing.

I track to honor my short term goals. Being reminded each evening that I need to stretch gives me the opportunity to pause for a few moments and check off the goal.

Honor your goals. Honor your body. And honor your mind by tracking only what can help you achieve your goals and your healing.

A.

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