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!

The Art of Positivity and Asking for Help



A lot of people ask me how I can be so happy when my life always feels like such a mess medically. Something is always wrong, I always seem to be fighting for something and on top of that my personal life feels like it is always changing, for better or for worse. My mom jokingly calls me Pollyanna because I seem to have such an optimistic view of life for most things. I always say that if I got stuck on the negative parts of my life, I would be constantly depressed. That's not to say that I don't have dark moments, because trust me I do. But I've figured out how to appreciate the small things in life and not let the darker moments take over.

I try and find something to be happy about everyday whether it's enjoying the music that I listen to while I'm walking to class or a nice text from a friend on a bad day. It's realizing that life is a bunch of ups and downs, and I've learned how to adjust my expectations which has allowed me to become a happier person when I can't make it to class, cancel plans, or finish an assignment. When I first got sick, I used to define myself by my grades. I saw no other way to express myself because I felt that my identity had been stripped and I wasn't physically able to do what I loved anymore. I was no longer the person that I had known for 15, almost 16 years. When I could function, I became engrossed in my academics. It was all about doing well and proving (to myself or to my teachers) that I was capable, that I was normal, and/or that I deserved to be in the classroom as much as any other student, despite the neurological problems I faced. I would do whatever it took to finish the essay or cram for the test, even if it meant that I hurt my health in the long run, and made it more difficult to focus, read, talk, or write. At that point in my life, the end result outweighed the process and the harm that I did to myself to get there.

It's taken a while to unlearn these habits. Being in college was the first time that I realized that I didn't have to push myself to my physical and mental limits to accomplish what I wanted to. I didn't have to fear missing class or taking time for myself when I needed it. I could take a day off from working to recover and the world wouldn't feel like it was collapsing.  To put it bluntly, I learned how to put myself first.

Once I learned that the only person that I had anything to prove myself to was myself, it slowly became easier to deal with the reality of my life. I stopped feeling like I had to prove that I deserved to be here. I know what I'm capable of. I know my strengths and weaknesses. I know who I am. I don't have anything to prove to anyone else. It's easier to find happiness when you're not constantly fighting everything. My first defense when something goes wrong is to fight. I get defensive so that I can protect myself. Unfortunately, fighting is so tiring and draining. It's never easy to fight for something that you shouldn't have to fight for. The past three weeks of my life felt like I was fighting for things that became so much more complicated than they needed to. It was physically and mentally draining. It definitely brought back some PTSD from high school, and at a certain point, I definitely felt like giving up. Instead, I turned to my Dean of Disability and Accommodations for help. She helped me so much through the process and took a lot of the fighting out of my hands. It was a relief to know that I had someone in my corner. It's such an internalized defense for me to fight for myself that even when I have the support systems in place, it is still sometimes difficult for me to recognize that I can't do it all on my own.

It's okay that I can't do it all on my own. It's taken a while for me to realize it, but I don't have to. I can still be strong and an advocate for myself, but I can also have faith that not everyone is out to undermine me and my needs. It's a lot easier to think that way, even if there are some people who aren't the nicest or don't understand the accommodations that I need. I have my support system. I'm so lucky to go to a college that works hard to take care of me. I have amazing friends who care about me. I feel so lucky. But just because I feel lucky, that doesn't invalidate my feelings of isolation and loneliness. Emotions change. You don't have to feel the same way all the time. You can be happy at one point and sad and upset at another. I've just realized that I prefer seeing the good in my life as opposed to the bad. It's taken a long time to get into this mindset, and even to be able to ask for help without feeling guilty or like I'm burdening someone.  For me, it's a big step.

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

Inspiring Migraineurs: Sara Long


After meeting so many amazing and inspiring people from Headache on the Hill and other people
that I've met along the way, I realized that I wanted to start a new part of my blog that is dedicated to people
who have inspired me. Sara and I became friends after working together at Headache on the Hill 
2017, and right off the bat, I knew that we would be friends for a long time. She is one of the 
most passionate, driven and optimistic people that I know. I hope you all enjoy this interview with
her!

1. Tell me a bit about yourself!
  I am a grad student at CSUF (California State University, Fullerton) majoring in history – I will be graduating this upcoming May! I also received my BA in history and minor in anthropology at CSUF, and my AA from Orange Coast College. When I was in high school I began working as a makeup artist for MAC Cosmetics and also opened my own freelance makeup business, Makeup by Sessa.When I began grad school in 2015 I left MAC and Makeup by Sessa to begin working as an Art Conservation Assistant for Griswold Conservation Associates. Not only have I worked as a makeup artist and now begun working in the field of art conservation but I have been an oil painter ever since I was little. Painting remains my oldest passion and favorite pastime. It’s my favorite thing to do when I need to “recharge.” That is probably why I fell in love with makeup as well. It is painting, only upon a living canvas. Makeup, painting, and studying history have become central parts of my identity and I would not change that for anything. However, an aspect of my identity that I could do without would be that I’ve been a chronic migraine patient since I was 17. Roughly eight years now

2.     When did you first get diagnosed with migraines? What medications and tests have you been on and tried?
I was diagnosed with chronic migraines at 17 years old. I was first given Imitrex for my migraines. I did not take it for even a full year because the medication made me severely nauseous. Imitrex did not help my migraines at all, but rather made my migraines worse!The next medication I was put on was Topamax for a preventative migraine treatment. I also started receiving opioids to take for the pain during a migraine attack. I stayed on Topamax till 2016 and then started taking a beta-blocker and antidepressant for preventative treatment.  I also tried the Botox treatments in 2015, but they did not work for me.I have also lost count of how many different holistic treatments I’ve tried. Simply put, they did not help my migraines.  

3.     What is it like being a graduate student with migraines?
  To say it’s challenging would be an understatement. Grad school alone pushes people to the brink       of their sanity and academic limitations, but simultaneously experiencing debilitating migraines,         really complicates the process. Migraines and grad school is a recipe for disaster. Migraine    paitents know that it’s best to establish a routine in your life to help prevent future migraine attacks (taking your medicine at the same time everyday, getting enough sleep, making sure to not go too long without eating, etc.). However, establishing and maintaining routines is almost impossible in grad school because you barely ever get enough sleep, sometimes forget to take your medicine because of a extremely hectic schedule, and so on… I deal with grad school and my migraines one day at a time because otherwise my life can get very overwhelming. As long as I continue to focus on the things that I can control in life, I know I will be able to graduate. I will also stay hopeful that migraines can be cured within m lifetime.

4.     How do you cope with your migraines?
  When I was first diagnosed with migraines I did not cope with them very well. I would get frustrated and sad, not only at the fact that I could not control or determine when a migraine would begin, but also with how difficult it was to describe to my friends and family how I was feeling. Throughout the past eight years, I’ve learned that being honest with people about how I am feeling during a migraine attack makes a huge difference in the help I receive from friends, family, and doctors. I have learned to not be ashamed when asking for help. I’ve also embraced counseling. I highly recommend it, to anyone, but especially patients with a chronic condition. Having a non-biased party to discuss your life with helps you learn to lead with logic, and not so much with emotion.  I have also learned to forgive myself. People with migraines tend to put unrealistic expectations on themselves—I am definitely guilty of that. Learning to be kind to myself was the best thing I ever learned to do to help with migraines.

5. I was with you at Headache on the Hill 2017 and you were an amazing partner! What made you want to share your story and become a migraine advocate?
   I wanted to be a part of HOH and advocate for myself and other migraine patients because the healthcare system made me very discouraged. For many years I felt like so many people did not take me seriously when I described to them how I felt during a migraine attack. Additionally, I thought that my doctors were only treating the systems of my migraines and were not attempting to discover the root cause of my migraine attacks. 

6. What is one thing that you always have with you in case of a migraine?
 Polarized Sunglasses. I drive a lot for work and bright headlights are painful to look at while driving. There are also fluorescent lights at my school and those can be extremely painful to look be around during a migraine attack. Sensitivity to light is one of my chief migraine symptoms, so much so that I get nauseous from too bright of lights when I’m having a migraine. I also have Pedialyte during a migraine attack. Not sure why it helps, but it does. Also, I recently bought the Migraine Hat on Amazon and it really helps!

7. What's a stigma (or stigmas) about migraines that you wish people knew the truth about?
  I wish people would not confuse the terms “migraine” and “headache."  The simplest way to describe the difference between the two would be that migraines are a neurological disorder and headaches derive from muscle tension.  I also wish people understood that disability does not mean inability. Many people live with disabilities, but that does not mean that they can’t achieve their goals or live a normal life. 

8. Lastly, do you have any words of advice for other migraine patients?
       Definitely! 
1) Be forgiving to yourself
2) Do not stress about the things you can not control
3) Advocate for yourself and your medical care
4)Take  control of your healthcare plan
5) Question your doctors and do not be afraid to ask about their experience in treating migraines
6) Do not give up or lose hope—even though you may feel alone during a migraine attack and like no one understands the physical pain, THERE ARE people fighting for new research and advocating for your healthcare
7)Take  a deep breath and allow yourself to rest
 8)TALK about your migraines to those around you!—no one can help if you do not tell them how
  9) Do not stress about how other people perceive you

Follow Sarah's instagram and her twitter!

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