Calling all Migraine Warriors!

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Do you own one of these purple “Migraine Warrior” shirts? They were originally offered in three styles: t-shirt, hoodie, and tank (not pictured.) I’m going to make a collage using pictures of folks in their purple “Migraine Warrior” shirts for #Migraine & #Headache #Awareness Month (#MHAM.) If you’d like to be included, please e-mail me a picture of yourself wearing your purple “Migraine Warrior” shirt at the following address:

themigrainewarrior@gmail.com.

I’d love to get as many people as possible to participate. If you don’t have a purple “Migraine Warrior” shirt but would like one, please comment below. If there is enough interest, I will re-open the campaign. A portion of the proceeds will go to The American Headache and Migraine Association (#AHMA.) Thanks in advance for your help! 💜💜💜

The Migraine World Summit: Medical Cannibis

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Access the Migraine World Summit

The Migraine World Summit is going on as we speak and it’s an opportunity for you to access some of the best and brightest minds in the field of migraine and headache disorders without even having to get out of bed. I’m furiously taking notes which I will make available here on my blog soon. In the meantime, I’d like to urge you to take advantage of this opportunity by clicking on the link above and watching as many of the interviews as possible. You can also purchase an all-access pass that allows you to access all of the interviews and additional information at any time, even after the summit has concluded. With this option, you can watch the interviews at your leisure, stopping and starting as you please, without feeling pressed for time.

In my previous post, I wrote briefly about Dr. Robert Cowan’s lecture on migraine causes and triggers as well as the increasing role of technology in the diagnosis and treatment of migraine. It’s a must-see interview for anyone living with migraine.

Today, I’d like to suggest that you watch the interview with Dr. Eric Baron from the Cleveland Clinic Neurological Institute. He gives a fascinating history of medical cannibis (marijuana) as well as a summary of how it’s being used today for a variety of conditions, including migraine and other headache disorders. He gives an in-depth look at the political climate that affects the use of marijuana both medically and recreationally as well as discussing the challenges faced by doctors, patients, and researchers seeking more information about medical cannibis in the United States. (Though 23 states, as well as Washington D.C. have voted to legalize medical cannibis, it is still illegal at the federal level.) I’ll post a longer summary once I’ve organized my notes but I suggest you watch this interview yourself as well. Perhaps you may even opt to share this with your migraine/headache specialist. I hope you enjoy Dr. Baron’s presentation as much as I did. Feel free to leave comments on this post or to e-mail me at themigrainewarrior@gmail.com with any further comments or questions. Wishing you a low-pain day and hoping that you are as well as possible.

The Migraine World Summit

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The Migraine World Summit is taking place right now! Take this opportunity to Learn From 32 World Leading Migraine Experts, Doctors & Specialists. The Migraine World Summit is Free Online From April 15- 20, 2016.

There are a wide variety of topics being discussed by some of the top migraine experts in the world and you don’t even have to leave your bedroom to attend! Simply head over to https://www.migraineworldsummit.com/ and start watching the speakers at your own convenience. So far, my favorite interview has been with Dr. Robert Cowan from Stanford University. He discusses migraine triggers and causes (there’s a difference between the two!) as well as the increasing role that technology plays in diagnosing and treating migraine.

If you missed an interview, don’t worry. Each video is available for free for 24 hours after it’s initial posting. Want access to all of the videos and information for longer than 24 hours? Click the following link to purchase an All-Access Pass to The Migraine World Summit:

https://www.migraineworldsummit.com/idevaffiliate/idevaffiliate.php?id=104

The Migraine Warrior Toolbox: IceKap Review

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IceKap Collage

Hello, loyal readers! Welcome to my first post of the New Year! I will be reviewing one of the most talked-about products in our community: the IceKap. Does it live up to the hype? What are the pros and the cons? I was lucky enough to snag one so that I can give you all the details!

The IceKap is a hat-type accessory that can be worn both in bed and on-the-go during a migraine. It stays in place and keeps the cold/heat where you need it. It comes with three medical grade gel packs, one that fits over your forehead, one that fits at the base of your skull/neck, and one that rests on the crown of your head. This is one of my favorite parts about the IceKap: I can ice my forehead/top of my head, while heating my neck. Also, typical ice packs are forever falling off of my head and neck, so the fact that the IceKap keeps its gel packs in place is a real selling point for me.

If you’re like me and have the charming added effect of vomiting during your migraines, take note: the IceKap will stay put during this process. Also, as seen in the pictures above, the IceKap has a hole in the back through which you can thread your ponytail. This allows the cold/heat to rest directly on your aching neck/head, in addition to keeping long hair out of the way.

The most surprising thing for me was that I fell in love with IceKap’s lavender-peppermint essential oil. As someone whose migraines are triggered by scents (especially floral ones), I had not really ventured into the world of essential oils. This one changed my mind. Not only is it soothing during the initial stages of a migraine but it can also be used to block out other triggering smells (an example being when folks at my house burn popcorn, which happens much more often than you’d think.)

A note about the IceKap and pressure: some folks like pressure on their head during a migraine and others can’t tolerate it. The IceKap is adjustable but a snug fit nonetheless. It takes a few uses and some stretching (noted in the accompanying literature in the IceKap box) to adjust to the size and shape of your head. For me, I prefer the snug fit over having ice packs falling off of my head all the time.

While we’re talking about ice packs, let’s examine the IceKap’s medical grade gel packs for a moment. As previously mentioned, they can be heated or chilled. One thing I learned (and this is true of every product I’ve tried) is that you should chill the gel packs, rather than leaving them in the freezer overnight. They will freeze solid (as things often do when left in the freezer) but they thaw out nicely so there’s no harm done if you make the same mistake I did. You may be wondering if the gel packs stay cold if you’re only chilling them. I’m here to tell you that they stay cold and pliable, which feels much better on an aching head than a rock solid ice pack.

Lastly, I’ve discussed that the IceKap works well both in bed and on-the-go. If you prefer to have your eyes covered during a migraine, the IceKap can be pulled down over your eyes, simulating an eye mask. It blocks out all of the light and cools your eyes as well, which is soothing for those of us whose eyes hurt during an attack.

Long story short, the IceKap is a product worth adding to your toolbox. I’m glad it’s in mine.

Get yours here: http://www.icekap.ca/

 

‘Tis the Season: Migraine Product Reviews

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chelle ian christmas ornament

Happy December, readers! As we usher in the holiday season, I will be providing a series of reviews of products that have helped me specifically on my 12+ year journey as a chronic migraineur. I have committed to my readers from the very beginning to provide clear and honest reviews on this blog. The products reviewed are, in all cases, products that I have personally used during migraine attacks and/or daily life as a migraineur. I have not been paid to write these reviews, though in some cases I have contacted companies whose products I am interested in to obtain said product for personal review. The way in which I obtained the item (or items) that I am reviewing will be explicitly discussed in each post. I will never endorse something that has not personally helped me. I think all of you know me better than that.

That being said, let the fun begin! Hopefully, some of you will find my experiences useful and perhaps even add some of these items to your holiday wish lists this season. These reviews are also a great opportunity to surprise the migraineur in your life with something they can really use, although it must be noted that each person has their own specific preferences when dealing with their migraine attacks, so a one-size-fits-all approach is rarely effective. However, if you are familiar with your loved ones preferences (or if they have been directly stated to you), this series of posts will provide valuable information.

Which products will I be reviewing? You didn’t think I’d spoil the surprise, did you? What I can tell you is that I’ll be discussing my recommendations for the best pillows, ice packs, sunglasses, eye masks, bath and body products, and more. Stay tuned for my first review, coming soon!

If You Only Read One Post, Read This One

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chelledadmigrainewarrior

Some folks have told me that my advocacy work doesn’t make a difference. That it either falls on deaf ears or only appeals to other people who have illnesses similar to my own. That raising awareness without raising money is a waste of time. And I think some of us start to believe that and it wears us down. It defeats us. It makes us alternately angry and sad. Why are we doing all of this, anyway? Are simply creating noise while silently losing friends? I have a story that suggests otherwise.

My father (pictured with me above) is not a migraine sufferer. His brother and sister both have migraines, although not the kind of migraines that would prepare him for having a daughter like me. He has watched me thrash with pain, stagger with dizziness, wretch with nausea, cower with photophobia, and cry with despair. He has also watched me fight, advocate, educate, and succeed. For over a decade, my parents have both been enmeshed in every parent’s worst nightmare: watching their child spend their days in unimaginable pain and discomfort while being told by a variety of specialists that there was nothing else that could be done. As a patient, I know the kind of depression and helplessness that comes along with such a life but I cannot begin to fathom how it must be to watch your child suffer, day in and day out, with no cure in sight. That’s what makes this story all the more brilliant.

My father is a professor at the local university, as well as a world-renowned scholar, prolific writer, and accomplished musician. When he asked me where his purple “Migraine Warrior” shirt was, I didn’t think much of it. Because my Dad’s wardrobe consists almost exclusively of t-shirts and jeans, it wasn’t out of the ordinary for him to don that shirt, which he bought last summer as part of a migraine awareness fundraiser I had organized. It was only later that I learned that his choice to wear that particular shirt on that particular day was, in fact, quite pre-meditated.

It was the first day of classes at the university and my Dad had taken to giving his typical introductory spiel. My Dad openly discusses his bipolar disorder and obsessive-compulsive disorder with his students on the first day of classes, opening up a dialogue where students can feel comfortable coming to him if they are dealing with something difficult. He makes mention of the university’s disability services and encourages students to make use of them and to not be embarrassed or ashamed to ask for or accept help. He tells my story of chronic migraines and my own foray into disability services. He makes sure that his students understand that he is an empathetic and compassionate person, one that will not discount them due to circumstances beyond their control. I think perhaps this partially comes as a response to the professor who suggested that I drop out of college because I’d never be able to hold down a job with my chronic migraines. I’m thankful that my parents, disability services, and another one of my professors made me understand that that professor was the one who was wrong. Because of our struggles and our willingness to be open about our journey, my father has been able to open the door of communication to countless college students who may be facing something similar. I hope that they hear his voice loud and clear rather than other people in their lives who may be telling them it’s time to give up.

On a smaller (but no less important) scale, our advocacy work helps individuals. I’ve had chronic migraines ever since I began dating my boyfriend over 8 years ago. He’s been supportive and compassionate and empathetic beyond all of my wildest dreams and he came to me with a story the other day that made my heart swell. Apparently, he encountered a distraught young woman at work in the break room. When asked if she was okay, she replied “I’m having a migraine.” My boyfriend immediately crossed the room to turn off the television. On his way back, he shut off the lights. He asked “Do you want a Dr. Pepper or something? My girlfriend gets migraines and I know that caffeine helps her.” She smiled and thanked him, telling him she’d already drank a Coke with her migraine medication. I can only imagine how this young woman must have felt. So few people know what to do in a situation like this and even fewer have the courage to do it. In that moment, I can almost guarantee that he made her current situation much better with the simple elimination of light and sound, the offer to help if he could, and the acknowledgment that he saw her pain and understood that it was real because someone he loves suffers from that pain, too.

The people around us listen. The people around us see. And some of those people take those words and images out into the world and make it a better place. As a result, there is more understanding and less stigma. Telling my story over and over and over again may not raise millions of dollars. But if we all tell our stories over and over and over again? We have the potential to change millions of lives.

30 Things You Might Not Know About My Invisible Illness: Chronic Migraine with Aura

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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chronic migraine with Aura
2. I was diagnosed with it in the year: 2004
3. But I had symptoms since: 2004 (I’m a rare case on two counts: I was chronic pretty much from the get-go and I was diagnosed with migraine during my first ER visit and saw a neurologist not long after that due to the chronic nature of the migraines.)
4. The biggest adjustment I’ve had to make is: I’m currently unable to work outside the home. I’m a licensed preschool teacher and teaching was more than just a job for me; it was a passion. I miss working with children every day of my life and look forward to the day that I am able to manage my migraines in such a way that I am able to resume teaching.
5. Most people assume: Most people in my life are pretty good at understanding that a migraine is not just a headache. The assumption that is most difficult in my life has to do with managing my migraines versus curing them. Because I have tried a plethora of different treatments over the last decade and because I advocate publicly for myself and other migraineurs, folks always know when I am trying something new. They get their hopes up and are inevitably crushed in one of two ways: either the treatment has no effect on my migraines (or makes them worse) or the treatment is helpful in managing my migraines but fails to eradicate them altogether. As a migraineur and an advocate, I have no expectation of a cure from any medications or treatments. I remain hopeful that they will help me. However, my loved ones have a hard time accepting this and get frustrated and saddened during my first attack after a treatment that seems to have helped. In their minds, I am not “better” unless I am no longer having migraines. In reality, I am much better. At my worst, I used to spend an average of 3 nights a week in the Emergency Room because we couldn’t get my pain or my vomiting under control. Now, I can’t remember the last time I went to the Emergency Room and my migraines are almost exclusively able to be dealt with at home.
6. The hardest part about mornings are: It is difficult to have a regular sleep schedule with migraines, which often results in insomnia. Mornings can be difficult if I’ve spent the previous night tossing and turning or, worse yet, in a great deal of pain and discomfort.
7. My favorite medical TV show is: House, M.D. I still maintain that Hugh Laurie gave the most realistic portrayal of a migraine that I’ve ever seen in the media.
8. A gadget I couldn’t live without is: My cell phone. Not only does it connect me to my friend and family, as well as my doctors, but it also connects me to Facebook where I have wonderful support groups. My cell phone also holds my music collection and, for me, music is as vital to my survival as oxygen.
9. The hardest part about nights are: Nights are sneaky. If you’re in a lot of pain, there aren’t a lot of options other than riding it out or going to the Emergency Room, which is often more harmful than helpful. Nights can feel lonely and everlasting, which is why I’m so grateful to have a boyfriend who’s a night owl, fellow migraineurs who are also frequently awake at night, and friends in different time zones who are always up for a chat!
10. Each day I take 12 pills & vitamins. That’s on a “good” day. If I have a migraine, it’s more.
11. Regarding alternative treatments I: I’m a fan of acupuncture and mindfulness-based stress reduction. I’ve also had some success with Somatic Experiencing and Reiki. To a certain extent, I feel that these things help more with my anxiety (which is definitely a contributing factor to my migraines) but I’ll accept any help I can get!
12. If I had to choose between an invisible illness or visible I would choose: This is not a question that I feel qualified to answer. I don’t have a visible illness so I can’t speak to how that feels. What I can say is that it is extraordinarily difficult to have a disabling disease/condition/disorder that is not visible. Many people tend to approach life with an “I’ll believe it when I see it” attitude…and even when they witness my suffering they sometimes think I’m over-exaggerating the severity of my symptoms.
13. Regarding working and career: It is an awful thing not to be able to work. I’ve had more people than you’d believe say things to me like “It must be nice not to have to go to work” or “I wish I could lay around all day like you do.” To that I say, I’m ready to switch places when you are. You’ll be begging for your job back. To be 30 years old and without a job feels shameful. Not only did I love my job, I was good at it and it brought me an enormous amount of personal fulfillment and joy. I miss teaching every day of my life and I hate being financially dependent on others. I can’t wait until I’m able to manage my migraines in such a way that I am able to work outside the home again.
14. People would be surprised to know: I was urged by one of my college professors to drop out of college. She told me that I had no hope of holding down a job when I couldn’t even consistently make it to class. She said that trying to get my degree was just a waste of my time. I had already taken a few years off from college to work full time and try to get my migraines under control. This was my first year back. Luckily, the folks at Disability Services, another one of my professors, my boyfriend, and my parents all had my back and I graduated with a Bachelor’s Degree in English in the Spring of 2010.
15. The hardest thing to accept about my new reality has been: There are people in my life who have been unable to deal with the severity and the chronic nature of my migraines. Some of these people were folks that I considered my closest friends. When they cut all ties with me, it hurt me more than anything has ever hurt me in my entire life. I’ve endured excruciating physical pain and discomfort at the hands of my migraines but it’s the emotional pain that pierced me on an unexpected, visceral level. Learning that some people you love don’t love you in that same way, that you are disposable to some because of an illness that is in no way your fault: that pain is deeper than any other pain I’ve experienced
16. Something I never thought I could do with my illness that I did was: I ran a 5k a few years back. I didn’t break any records but I finished the race and that is something that I never thought I could do, with or without migraines.
17. The commercials about my illness: Commercials are often a source of frustration for me because I feel as though they give an unrealistic portrayal of migraines. If Excedrin works for some people, that’s great. However, there’s a large subset of the population that has migraines that are not helped by Excedrin. Don’t you think that I would rather pop an Excedrin than get 31 Botox injections in my face? And while we’re on the subject of Botox (because that has commercials too now): Botox can be an incredibly effective tool in migraine prevention. However, it is not a cure. There currently is no cure for migraine or chronic migraine. There are management options. Please advertise them as such.
18. Something I really miss doing since I was diagnosed is: Enjoying thunderstorms. I know that probably sounds ridiculous but I used to love thunderstorms. Now, the mere mention of rain showers is enough to spin me into a panic attack because my migraines are frequently triggered by the weather.
19. It was really hard to have to give up: Chocolate. Italian cheeses. Pepperoni. Food triggers are tricky for me and I’m generally pretty good about staying away from the things I can’t have. However, my grandmother was full-blooded Italian and she used to make the most incredible meals with Parmesan and Romano cheeses. My grandfather would get me pepperoni sticks from the good Italian deli/bakery. In this case, food is not just food. These foods are memories, a part of my childhood and my identity. I miss not being able to enjoy them, not to mention the hassle it causes trying to avoid them in restaurants or store-prepared foods.
20. A new hobby I have taken up since my diagnosis is: I enjoy blogging about my experiences and connecting with others who have similar diagnoses. It’s important for people to understand that they’re not alone.
21. If I could have one day of feeling normal again I would: I don’t like the phrase “feeling normal.” I’m not even sure I know what that means. I just do my best to enjoy the days that I have. Recently, I went to an Ed Sheeran concert with my boyfriend and it was one of the best nights of my life so far. It’s things like that that show me that I don’t have to be/feel “normal” for my life to be okay or even wonderful.
22. My illness has taught me: I am stronger and more patient than I ever imagined. I’ve endured more than I thought possible. Some people will desert you but the people that stay by your side are the ones you truly want around in the end.
23. Want to know a secret? One thing people say that gets under my skin is: “I thought you were better.” “So the (treatment) worked, huh?” “You have ANOTHER headache?” “It must be nice just to lay around all day.” (Okay, so that’s more than one. My degree is in English, not Math.)
24. But I love it when people: Turn off the lights, mute the sounds, give me an ice pack and a McDonald’s Coke (caffeine helps!), give me a hug, watch T.V. with me until my meds kick in, tell me that it’s okay and that they love me. I also really appreciate it when people acknowledge how hard I’m fighting and that it must be difficult to be in pain so much.
25. My favorite motto, scripture, quote that gets me through tough times is: “It is never too late to become what you might have been.” -George Eliot
26. When someone is diagnosed I’d like to tell them: Find a migraine specialist. It DOES make a difference. Advocate for yourself. Ask for what you need. Try many different things and never, ever lose hope.
27. Something that has surprised me about living with an illness is: I’ve developed a certain set of skills (imagine that being said in a Liam Neeson accent) that have proved themselves helpful in a variety of ways for both myself, my loved ones, and other folks in the migraine/chronic pain communities. Learning to advocate for myself as a patient has had a direct effect on my ability to advocate for myself and others in life.
28. The nicest thing someone did for me when I wasn’t feeling well was: One of my former students taped construction paper over the window in our classroom because the shade was broken. He knew that my migraines present with extreme sensitivity to light, so he set about covering all of the windows. He was 8 years old at the time.
29. I’m involved with Invisible Illness Week because: Raising awareness and eradicating the stigma surrounding invisible illnesses is paramount. Because you cannot see my illness, I have to speak up about it in order to make you aware of it. I want others to know that they are not alone. I want everyone to know that just because you can’t see my illness doesn’t mean it isn’t there.
30. The fact that you read this list makes me feel: Grateful. To know that someone took the time to read and process my thoughts means the world to me. It means that perhaps next time you won’t be so quick to judge what you cannot see or what you do not understand. Or perhaps now you know that you are not alone. Either way, I believe that I have done what I set out to do.