Inspiring Migraineurs: Courtney Kilian


This week, I interviewed Courtney Kilian, founder of Om & Ink! I am excited to share her story with you all, because she is such a wonderful, positive soul. Her story and her work is also inspiring- and you will see why in her interview! 
1. Tell me a bit about yourself!
I’m Courtney, the founder of Om & Ink: Live, Breathe, Write, a community that merges my two passions: writing & yoga. I live in Southern California where I teach gentle yoga and creative writing. I love to garden, create collage art, hike, travel, float in the Pacific, and drink lots of tea. Migraines became chronic for me after a car accident, and I created Ease & Prevent Migraines: A Yogic Toolkit (digital or DVD) with practices specifically for decreasing migraines.
2. When were you first get diagnosed with migraines? Do you have any other chronic illnesses? What medications and tests have you been on and tried?
My road to diagnosis: I had a brain injury in a car accident in 2012, and it took until 2014 to get a migraine diagnosis. After learning so much about migraines, I know now that I had them prior to the accident—they would get bad with stress particularly around finals time when I was in college and when my mom was diagnosed with breast cancer. There was a period of time in 2007 that they were so bad/didn’t go away that I actually had a brain scan to check if I had a tumor. When no tumor showed up, there was no diagnosis and what I was going through was a complete mystery. At the time, lowering stress, eating plenty of protein, and getting back into regular exercise made a big difference in the problem, and systems only reappeared occasionally.
After my car accident, the migraines became debilitating, and I had one every day for a couple of years. I now know I’ve had a few hemiplegic migraines (where part of the body goes numb) and was sent to the ER several times—the diagnosis then: either I’d had a mini stroke or I had MS, in which case I would just get worse! Finally getting a diagnosis and learning more about migraines helped me a great deal because I had place to start for addressing what felt like very bizarre and unrelated symptoms.
Other chronic illnesses: I have fatigue, severe allergies, and ongoing symptoms from a brain injury that I work with on a daily basis.
Medications, tests, and things I’ve tried: I’ve taken all sorts of tests from MRIs to CAT scans to EEGs. I’ve tried prescription medications and had the best luck with Sumatriptan, although I’ve found now that natural alternatives work just as well. I’ve also done Botox, which made a big difference in the beginning, but didn’t feel like a long-term solution. Botox injections are given every three months and during that span I would have one great month in the middle and the two months bookending the treatments filled with migraines where the Botox was either setting in or wearing off. It was incredible to have some relief when I’d had them daily, and I was thankful for the breaks, but it was also frustrating to feel so good and then be hit hard again. I began planning my life around that one month out of every three where I could actually do things and get work done. This is when I really started researching migraines and reading everything I could about what they are, how they are caused, what their triggers are, and beginning to try more natural methods to heal myself. I was eventually able to stop Botox treatments and manage my migraines myself.
3. What have you found that works for you?
Self-care, listening to my body, natural remedies like ginger instead of migraine medications and essential oils like lavender, frankincense, and wintergreen, yoga and mindfulness practices, and acupuncture!
4. How do you cope with your migraines?
Patience and self-love. I hope that doesn’t sound cliché or annoying, but it’s incredible how far they go. It can be one of the most challenging things to say ‘No’ to things you really want to do and to constantly miss out because of chronic illness, but I’ve learned to listen to my body. I now know that if I need to rest or feel a slight migraine symptom coming on, it’s better that I give my body what it needs right then, rather than pushing it. When I push (and I’ve learned the hard way many times!), I can be in bed for days or even weeks instead of a few hours.
5. What motivated you to share your story?
Chronic migraines can take over your life. When I began making breakthroughs and being able to help my migraines with natural things I could do myself, my life changed, and I couldn’t wait to share that. I think anytime we can take healing into our own hands, it’s such an amazing thing. I also think migraines are way underdiagnosed—I know people who think they just get ‘bad headaches’ or sinus headaches, but when they start treating them like a migraine instead of just a headache, they get better. I want to share what I’ve learned to help others.
6. What is one thing that you always have with you in case of a migraine?
I keep what I call my ‘migraine toolkit’ with me at all times. It has ginger in it (chews and the actual spice which I can add to a little water) and some essential oil blends that I can easily take/apply when I start to feel one coming on and I’m away from home.
7. What's a stigma (or stigmas) about migraines that you wish people knew the truth about?
A lot of people think that migraines are just bad headaches, and they aren’t often seen as a chronic illness. Extreme sensitivity also goes hand in hand with migraine sufferers, and for those that aren’t hypersensitive to stimulus, it can be hard to understand why I might need to wear sunglasses even in someone’s home, need the volume turned way down, or have a difficult time being around people or places with lots of smells.
8. Lastly, do you have any words of advice for other migraine patients?
Don’t get discouraged. Migraines can be so debilitating and affect every area of your life, but there is hope. The more you learn and arm yourself with information, the more you can manage them so you have control and not vice versa. And, you don’t have to be tied to medications your entire life—our bodies have the amazing power to heal and support us, if we give them what we need. It can be tough to find exactly what that is, and to change habits, but it’s possible and life-changing.

Follow Courtney on Instagram @om.and.ink, find her on Facebook, and visit her website here.





Week 2 of Migraine and Headache Awareness Month


#day3
 of #mham17 is about comorbid disorders and migraines! Migraines often come with other health problems, including mental health issues as well. Feelings of guilt and shame about having migraines and headache disorders often compound the hardships of chronic illness, and may people feel scared to reach out for help when they need it. If you know someone with a chronic and/or invisible illness, take a second and think about how you react when they tell you about their pain/medical problems/doctor's appointments. Try to put yourself in their shoes, and remember that it's often hard and difficult for many sufferers to talk about their experiences with other people. Even asking a simple question, like "what can I do to help you during a migraine?" will go a long way and I know it makes me feel much more supported. So take a minute today and just think about how you can be an ally and be supportive of your loved one or friend.
#day4 of #mham2017 is about support systems. I would not be where I am without my friends and family. They are there for me during both good and bad times. Having amazing people beside you makes chronic illness a bit easier to deal with, and makes to good times even better. So much love for my Wes family ❤️

#day6 of #mham2017 is about chronic fatigue and energy problems! I'm going to be doing a post on spoon theory later this month, but I thought that this was too funny to not post! Just a bit of insight into the difficulties of having energy problems with a chronic illness.


Did you know that migraines can cause central sensitivity? I do, because this has happened to me. The best way to describe it is when the central nervous system becomes unnaturally sensitized due to ongoing stimulation. Basically, the neurons develop a "memory" of the pain signals that are present during migraines and changes to make pain signals travel more easily. This can be related to neurotransmitters, like glutamate and GABA. For me, I needed to go onto a medication that upped my glutamate levels, as well as stopping all abortive triptans to break my central sensitization. Thanks migraine.com for the definition! I posted this last year, but it's an important topic so I wanted to repost it! #mham #day7

#day8 of #mham2017 is a #tbt to Headache on the Hill 2017! It was an amazing experience to be a patient advocate for migraines and chronic pain. Read more about my experience lobbying in DC on my blog! http://chronicmigraineellie.blogspot.com/2017/02/headache-on-hill-2017.html?m=1


What are Migraines Anyways? MHAM 2017


Welcome to #MHAM2017, Migraine and Headache Awareness Month! Last year was the first year that I participated in #MHAM. It was an amazing experience, albeit a difficult one, so I'm excited to do it again this year! A couple general announcements: every week I will be compiling the facts, pictures, and infographics and putting them into a blog every Friday. Secondly, there is a new event during MHAM this year that I am a part of that I would love to share with all of you! Shades for Migraine is starting a campaign on June 21st to raise worldwide awareness about migraines. 
"on Wednesday, June 21, let the world know about it!  Let the millions of sufferers know that you care... that you know they aren't faking an illness... that you know much more needs to be done to find a cure and give them relief... that you want to help give migraine disease the prominence it deserves.Wear some sunglasses all day long.  They just need to be visible…hanging around your neck, hanging from your shirt or propped on your head are options if you can’t wear them on your face the entire day. Wear them indoors and in places where people usually don’t wear sunglasses.  Be silly. Wear goofy ones if you dare. Let them make a statement...  Start a conversation..."

I will be participating and reminding you all throughout the month to take part in this amazing campaign! Learn more at their website at www.shadesformigraine.org.

More than 37 million Americans suffer from migraines. It's estimated that 2-3 million American migraine sufferers have chronic migraines. However, these numbers do not encompass the millions of people who experience migraines and don't know about it. Many people think that migraines are just headaches. Oftentimes, someone who is experiencing a migraine may think that it was "just a bad headache." First and foremost, migraines are not a bad headache. It's a neurological condition that comes with many side effects that severely debilitates people.  
So, what is a migraine?According to Professor Peter Goadsby, of King’s College London and Trustee of The Migraine Trust, migraine is an “inherited tendency to have headaches with sensory disturbance. It’s an instability in the way the brain deals with incoming sensory information, and that instability can become influenced by physiological changes like sleep, exercise and hunger.”

There are many different side effects with migraines, including but not limited to, nausea, light and sound sensitivity, inability to function and many others.

There are 4 phases to a migraine headache. Prodrome, Aura, Headache and Postdrome

Prodrome
Prodrome is the first potential phase of a migraine, and it can begin hours or days before the actual migraine hits. In a way, it’s a sort of a warning sign that you may be having a migraine. However, sometimes you may not realize that you are experiencing prodrome until the migraine has hit. Some potential symptoms are aphasia (difficulty finding words and/or speaking), difficulty concentrating, fatigue, cravings, mood changes, neck and back pain and sleepiness.

Aura
Migraines are separated into two main categories; migraines with aura and migraines without aura. Migraines with aura are only experiences by about 25% of Migraineurs, however, if you have more than 2 auras you are classified as having Migraines with aura.
Aura can look very different for each patient, however here are a list of some possible symptoms of aura.
v Allodynia (hypersensitivity to feel and touch, where what would e normal is painful)
v Aphasia
v Auditory hallucinations
v Confusion
v Decrease in or loss of hearing
v Dizziness
v Hemiplegia (one sided paralysis that only occurs in hemiplegic migraines only)
v One sided motor weakness
v Parasthesia (prickling, stinging, burning, numbness, tingling usually on the arms and legs or face)
v Olfactory hallucinations
v Visual (these range greatly from blurry vision to partial loss of sight to blind spots to wavy lines)
v Vertigo


Headache
The headache phase can be, but is not always, the most debilitating phase of a migraine. Migraines symptoms are actually not confined just to the head. Symptoms can be felt around the whole entire body. Furthermore, the headache phase can be “silent” or “acephalgic,” where you cannot feel the pain or the headache phase does not occur. These types of headaches can leave you with the same disoriented symptoms that any migraine will leave and recovery should be treated like any other migraine.  
Some symptoms of the headache phase are:
v Pulsing or throbbing frequently unilateral pain, however migraine can be bilateral.
v Pain around the eyes, sinuses, teeth and jaw due to inflammation of the trigeminal nerve.
v Confusion
v Dehyrdration
v Dizziness
v Nausea and/or vomiting
v Neck pain
v Hot flashes/chills
v Heightened sensitivity to light, sound and/or odors
v Vertigo
v Anxiety/panic

Postdrome
         The way that I describe how I feel after a migraine is like I’ve been “hit by a bus,” and that I have a “migraine hangover.” Postdrome can last for hours, if not days. My doctor told me that for as many days as I’ve had a migraine, I need to give myself as many days to recover. That is because postdrome symptoms may include fatigue, lowered mood levels, poor concentration and comprehension.

Migraines are so hard to treat because every symptom is individual for each and every patient. While many patients experience some of the same symptoms, each migraineur has different triggers and pain solutions. For me, going gluten free, undergoing allergy immunization, Botox, biofeedback and other preventative medications have helped me immensely. However, there is no cure for migraines, only ways to manage it. Only increased education and awareness can help to find more effective solutions for migraine pain and prevention. 


As always, have an amazing, migraine-free week! 

A Little Life Update

So a little life update: I cut my hand pretty badly and had to get 5 stitches in the palm of my right hand on Friday. As I am right handed, this makes things pretty difficult (I'm typing with my left hand). That said, with finals, moving out of my dorm and stitches, blogging is going to be on the backburner for a bit. However, I have some great plans for the summer for all of you, including another Facebook live! Stay tuned for updates, but I wanted to let you all know why I haven't really been active!