A Year of Migraine: 2013 Calendar

So back in December I shared with you guys my rather turbulent history with migraine journals, and I made a promise to amalgamate them into one massive year of migraine. It took forever to kind of comb through and extract the data from them. Sometimes I even had to go by a regular “feelings” diary that I kept during the period I wasn’t keeping a migraine journal, so the data is not exact, but I would say about 92.8% correct.

Well here it is my lovelies. Isn’t it beautiful? *single emotional tear*

Click photo to see bigger!

Although these stoplight colours seem pretty obvious to many migraineurs, I created a key, so that people who do not suffer can migraine can interpret what on earth these colours and X’s mean, and my personal symptoms that are associated with them.

Click photo to see bigger!

This year I have gone through 3 different medications to prevent migraines, one of them at 3 different doses, and 6 different medications to treat migraines when they happen. Although I know the end of 2013 there seems kinda iffy, I really have found meds that have been working for me. (It was the holidays, ‘aight? Everyone with a pain disorder knows the holidays are the worst.)

So because you guys are awesome, I have made it so that you can download your own blank version! Just click on the link below, and feel free to change the key around to match your own symptoms or even create new colour categories!  Woo!

Click here for your own Year of Migraine calendar!

Once you too have completed your own Year of Migraine, display that puppy. Show your friends, your family, and your goldfish, so that they might get some sort of idea of what it is like to live with migraine disease!

My family’s response when they saw this: “Holy s#!%!”

What is your friends/family’s response to your calendars and journals?

The Migraine Action Plan

I wake up every day of my life doing a multitude of things to avoid migraines, but like reality tv or herpes, they just never seem to completely go away. So like my mum always said, “plan for the worst, hope for the best!”

I wrote out my action plan a couple weeks ago, which makes it easier to think straight and cope while my brain feels like it’s going through a meat grinder.

1. Take my rescue med ASAP.

So I thought the case for my injections was boring… so I put some stickers on it. I’m actually a disney princess.

My current migraine abortive medication is sumatriptan by way of injection. I also have cute Monsters Inc bandaids, fyi. I take it as soon as I get an aura, or at the very first little brain pains, like scratches behind my eyes, forehead or temple. I tried the “is this a migraine or not” waiting game before, but 10 out of 10 times it was a migraine anyways, and in the process of waiting I would end up going through massive amounts of unnecessary pain and vomiting. I just had accept the fact that I do not get “normal people” headaches anymore. Lesson learned, TAKE THE DAMN MED ASAP. If it feels like it’s going to be a big migraine, I also take naproxen (Aleve), acetaminophen (Tylenol), and metocloprimide (an anti-emetic).

2. Heat my feet, cool my neck.

My diva ice bag and microwavable rice bag.

There is a photo going around the internet as a “lifehack” of a girl sitting on her bathroom counter with her feet in a sink full of warm water so as to pull the blood away from the brain and supposedly eliminate headache pain. Spoiler alert, it doesn’t replace medications at all. And honestly, there is no way in hell you could get me onto a counter during a migraine attack. It is founded in some solid stuff though. If you warm your hands and feet, it causes blood to be drawn to that area, decreasing the volume of blood and blood pressure in the brain by a small amount. Less pressure means less pulsing, which makes coping with a migraine a little more comfortable. Adding an ice pack to my neck also adds to this effect as it decreases the rush of blood to the brain. Since I don’t want to climb on bathroom counters, what I do is I warm up a microwave rice bag that my sister-in-law made me (she posted about how she made mine here). If I’m going to settle into my blanket-burrito-migraine-comfort-nest, 9 times out of 10 I have my rice bag on my feet and an ice pack in my pillow case.

3. Apply TENS.

Just electrocuting myself, don’t mind me.

What is tens? Well it is basically a little machine with electrodes that you apply to your body, and it sends a little electrical current through your muscles… yes. So basically I electrocute myself, but only a little bit! I wouldn’t advise buying one without trying one out or talking with your doctor, it can sometimes mess with things like pacemakers and some medication, and not everyone finds electrocuting themselves soothing. Honestly what it feels like to me is like an odd massage. As your muscles contract, they release endorphins, which is sort of a natural pain killer. Studies are sort of split on the actual ability to reduce pain, and honestly I don’t notice a massive amount of pain reduction. Why I still use it is because it’s nice to focus on a sensation in my body that is not the sensation of pain.

4. Drink water.

One of the worst experiences in my life was a time where I went to the ER and I was so dehydrated that it took 9 tries to get the IV in. They blew all the veins in my hands and arms, and the next step was going to be an IV in my foot. I can’t even imagine how uncomfortable that would have been. Since then, I always hydrate myself because it seems to decrease the severity and length of a migraine, and if I end up in the ER I might not have to go through that nightmare again. Also, they sometimes make me take a pregnancy test and I am certain that one of the circles of hell is being told to pee in a cup and you have no pee.

5. Eat a snack.

When my body is fighting a migraine it needs fuel! Low blood sugar is also one of my triggers, so I always try to eat something so it doesn’t dip too low. If I am too nauseous, which is a lot, I will just switch the water for gatorade or juice. There are days to feel bad about consuming empty calories, but a migraine day is not that day.

6. Tell someone.

I like to text my mum, boyfriend, best friend, or sometimes all 3 when I have a migraine. Sometimes my migraines are so severe that I physically cannot even sit up, so I need to have one of these three on standby if I need anything. Also, it’s nice to give them a little warning in case I can’t go to a class or if I need a ride to the ER.

7. Distraction.

Orange is the New PERFECTION, and Superwholock is my everything.

It is well documented that one of the best ways to cope with pain is distraction. I recently got Netflix and let me tell you, one of the best decisions I have ever made. If I do everything so far on this list, and the medications work like they should, the pain stage of my migraine will be over by the time I’m finished watching an episode of Orange is the New Black. Then I just have the aphasia, back aches, and fatigue of migraine postdrome to look forward to!

8. (In desperate times.) Go to hospital.

Sometimes, despite doing everything on this list, the medications fail and the migraine continues to get worse. Once the pain builds to an unbearable level, it reaches what I like to call “category:death” status. There is crying. There is screaming. There is questioning my very existence. That’s the point where I have no choice but to go to the hospital.

What does your Migraine Action Plan include? What provides the most comfort for you during a migraine attack?

Writing a Letter to my Migraines

I don’t really know what inspired me to write this letter. Maybe it stems from a habit that I had when I was younger. When I was little, and I was mad at someone, I would write them hatemail, then never send it. It would just live under my pillow until I got over whatever problem I had with them, then I would throw the letter away. I was a weird kid. Clearly I held a minor hatred for everyone, which sort of explains why my cat was my best friend.

I wrote the following letter on a whim in the spring of 2013:

Dear Migraines,

I don’t really know why you insist on being a part of my life. You cause me so much pain. I just don’t understand. You made me quit my job. You made me quit school. You are ruining my life.

You have taken so much from me, but there are some things you can never take from me. You will never have my mum, or my dad, or my brother, or Hai.

One day, I will be rid of you for good, but until then, you better prepare for battle.

Love, Kayla ❤

I know, I know, a monkey could have written that. I had to fight through pain and tears to get that onto the paper, so cut me a little slack, m’kay? I’m actually quite surprised that I didn’t utilize profanity. Ah well, that’s what tumblr is for.

So unlike my childhood hatemail, I put my letter to my migraines on my wall above my desk as an occasional reminder of my determination. I haven’t thrown it out yet because honestly I am still not over what migraine disease has done to me. I suspect I probably won’t be over it for a very long time.

If migraine disease were a person, I am pretty sure I could have them convicted of torture and attempted murder.

My letter currently lives under John Lennon, who reminds me to Let It Be *collective groan*

Have you ever written a letter to your migraines? If your migraines were a person, what would you say to them?

Those Damn Migraine Journals

Okay guys, it’s truth time.

I have a confession to make. You see, besides “take your meds asap”, my number one tip I tell people is to keep a migraine journal. Alas, I am probably the absolute WORST migraine journal keeper of all time. Hypocrite of the Year award goes to me.

This past year I have tried 7 different methods to keeping a migraine journal. The following is a summary of why the first 6 failed, and the journal that I have finally been able to keep.

1. Nursing Notes

Being a nursing student, I thought that keeping track of my symptoms this way would be the most accurate. I was indeed correct, but I also underestimated how time consuming it would be tracking every detail. I ended up repeating myself over and over. There was so much information, I found that it was hard to pick out what bits were important and which were not. And did I mention, it took FOREVER. Nursing notes are fine when you get paid to write them. Not so much when you’re the patient.

Pros: HELLA ACCURATE
Cons: I COULD HAVE CONCEIVED, CARRIED TO TERM, AND BIRTHED A CHILD IN THE AMOUNT OF TIME IT TAKES TO FILL IT OUT PROPERLY

2. Uterus App

So I had this app on my ipod touch that erm… tracked my uterus cycle. It also tracked the severity of the extra symptoms, like…. drumroll please… headaches, nausea, fatigue, body pains… blah blah blah. It would create this little graphs over time. I thought, hey! Awesome! It’s an app, so easy, and I get a little pretty colourful graph out of it! I like pretty things. But alas, you could only see 7 days of the graph at a time. Also there was no space to track triggers, just the symptoms.

Pros: QUICK, EASY TO COMPLETE, AND YOU GET TO MAKE SOME PEOPLE UNCOMFORTABLE AS YOU OPEN UP YOUR UTERUS TRACKING APP IN PUBLIC
Cons: CAN’T ADD ANYTHING EXTRA OTHER THAN SYMPTOMS

3. Small Portable Notebook

I started jotting down all the symptoms and triggers freehand style, which I really liked because I could write anything I wanted, from symptoms, triggers, auras, treatments, doctors appointments, whether or not they worked… anything! I was a migraine GOD… but cramming it all into a little notebook, one entry could span several pages, and my hands would get super cramped. Also, I got no pretty graphs, and to extract data I would have had to piece through the damn book page by page. Since I can be pretty weak at times, real estate in my bag is incredibly costly. A nearly useless little book doesn’t often make the cut.

Pros: I CAN WRITE LIKE A FREE BIRD!
Cons: IF THE BOOK IS SMALLER THAN MY HAND IT’S PROBABLY GOING TO HURT IF I WRITE IN IT FOR MORE THAN 10 SECONDS, AND NO PRETTY GRAPHS

4. No Journal

This was the WORST idea. Do not do this. I basically got frustrated with migraine journals and gave up. I look back on those 2 months and I have no idea if my migraines were better, worse, or WHAT. I felt like I lost control, like I was powerless.

Pros: I TOOK MY LAZY STATUS TO ANOTHER LEVEL
Cons: I LOST MY MIGRAINE GOD STATUS, AND IT BRUISED MY FRAGILE EGO

5. Migraine App

So I caved and finally shelled out 99 cents to get a proper migraine app. But again, I found the app really limited my ability to track what I thought was important, and took forever to write properly on the device. And it didn’t have pretty graphs or colours. And I’m petty.

Pros: EASY TO KEEP, MIGRAINE SPECIALIZED
Cons: NOT MY CUP OF TEA AND MY IPOD KEPT DYING

6. Calendar X’s

It drove me crazy that I couldn’t see what my week/month/year looked like at a glance. So I started marking up my scheduler with X’s. Every day I had a migraine, I would cross it off with an X. But again, I couldn’t track other symptoms or triggers or things. I really should have known that this wasn’t going to work.

Pros: SAW MY MIGRAINE PATTERNS BETTER THAN A HAWK
Cons: AGAIN NO TRIGGERS OR SYMPTOMS AND STUFF, GAH! I SHOULD HAVE KNOWN IT WOULD FAIL

7. Free Notebook with Calendar Summary

This is my current migraine tracking holy grail. I sort of combined everything I liked about the other methods.

• I get to free-write. I can track whatever I want, how I want.
• I only write it before I go to bed, I don’t really carry it around.
• Bigger book means no hand cramping!
• I use that information to fill in a pretty “stoplight” calendar.
• Pink (Red) = Migraine day. Day stolen from pain.
• Yellow = No migraine, but day moderately affected due to other disease symptoms.
• Green = Day only minorly affected or not affected by disease symptoms.
• X = Hospital visit.
• IT’S SO DETAILED AND PRETTY AND AWESOME AND MAKES ME HAPPY

My Precious…

I also keep track on a yearly calendar, which is an amalgamation of all of these journals. I will be posting it in the new year when it is complete!

How do you keep a migraine journal? What works best for you?

The Beginning

Hello there People of the Internet 🙂

If you are reading this, you probably are familiar with the doom and gloom of migraine pain. I have good news for you my friend, YOU ARE NOT ALONE.

I  too experience migraines, and this is my blog that I will fill with migraine information, my random musings, and things to make you laugh despite the hurricane of brain pain that never seems to leave you well enough alone.

For this first post, I guess I should introduce myself and tell you how I entered this world of migraines and chronic illness. It’s probably not going to be very funny. Depressing actually. But this blog has got to start somewhere.

My name is Kayla, and this is me:

(I’m in a prison… tried and convicted of being too fabulous to handle.)

In October of 2012, I was 22, in my 2nd semester of nursing school and having a blast! …well, okay no. Lies. Nursing school is a lot of work, in the classroom and the hospital. More often than not, to get passing grades you have to sacrifice your sanity.

On Saturday the 14th of October, I got what I thought was just one of my occasional “bad headaches”, so I did what I usually do to cope. I lay down and had a 6 hour nap. When I woke up, I was in the most amount of pain that I had ever been in in my entire life. 10/10 pain. Nausea. Vomiting. The soft lights and noises of my house were sending cascades of pain through my cranium. I couldn’t even sit up without it feeling like someone was taking an axe to my face. Through the crying and screaming I could barely communicate with my parents. My mum wrapped me up in a blanket and drove me to the local emergency room where I got some fluids, IV meds, a diagnosis of a migraine and a “you should really see your family physician about this”.

My grades took a dive, but I somehow managed to finish and pass the semester while having a migraine every weekend, and only treating it with acetaminophen (Tylenol), ibuprofen (Advil), and dimenhydrinate (Gravol). I really should have gone to my family physician when the ER doctor told me to, but I was too immersed in school, and the nursing program is so demanding that you can’t even afford to take a day off to go see your doctor.

During the short winter break, I went to a walk-in clinic to see if I could do something to prevent my migraines, and I received my first preventative medication, and my first migraine abortive medication. I then began my 3rd semester of nursing school with the hope that these medications would perform miracles and I could live a normal life. Looking back, I am absolutely floored by my naïveté.

Two weeks into that 3rd semester, I was back in the hospital again with another 10/10 migraine that my medications could not quell. On February 5th, 2013, another 2 weeks after that hospital visit, I began what would become 44 days of migraine. During those 44 days I was in the hospital another 4 times, I dropped out of school, lost my job, and pretty much shut myself off completely from the outside world. This, ladies and gentleman, was my rock bottom, or as I like to call it, my “dark phase”.

(I’m sorry this story is so sad. It gets better from here on out, I promise.)

The person who deserves all the credit for getting me out of this dark phase is a fresh out of residency doctor that was taking the place of my family physician for a couple weeks while he was on vacation. I only saw him twice, and I can’t even remember his name, but he took one look at my migraine diary and medications, and said “well these obviously aren’t working”. He switched me to a more effective migraine preventative and abortive, and I finally had a day relatively free of pain for the first time in months.

Now these medications were not the miracle meds like we all wish we could have, but they worked well enough to give me 1-3 pain-free days at a time. This gave me the drive to reconnect with the world. I began hanging out with my friends again. I even got to go to a concert on my 23rd birthday! But most importantly, I started to discover blogs on Tumblr and other platforms, written by people with migraines, just like me.

On May 1st, 2013, after several brain scans, blood tests, and neurological exams, I received my official diagnosis of Chronic Migraine with Aura.

After a couple months of observing, in September of 2013 I decide to start some blogging of my own, through a Tumblr blog I named “whatshouldwecallmigraine” where I tried to convey to common frustrations of living a life with chronic migraines through gifs. Through this blog, I met the most wonderful people; fellow migraineurs like me and other ill people who call each other “spoonies” as a term to connect all those who suffer from chronic illnesses.

Connecting with these people and realizing that I am not alone has really driven me to improve my health, and to try and get back into nursing school, so I can graduate and become and RN and help other people like me.

I have to admit, I am not a patient person. I am starting this blog because I can’t wait 3 more years to help people like me, I want to start now.

So thanks for taking the time to read all this crap. It really means a lot to me. Now you’ll know where I’m coming from in every post I write. By reading this you also become one of my most favourite people in the world. Congratulations! You win 2 high fives and a rainbow.

If you want to see something appear on this blog, just leave a comment below and I will try and put as much good and helpful information out there as I can!

Wishing you a pain-free day,
Kayla ❤