FDA Approves First Migraine Prevention Drug!

Just last week, the FDA approved the first drug designed to prevent migraines! It’s been all people are talking about in the headache/migraine community, because it’s a pretty big deal!

Living with migraines is tougher than most people can imagine. What can be even tougher, is finding the right doctor, the right treatment and finding both without going broke.

Check out a few links that I found to be helpful in reading about this new FDA approved migraine prevention drug and how it can be accessed:

 

Patience is A Virtue

Growing up we are told to “be patient.” Starting from when we were just little ones, we would hear “be patient” from our parents as we relentlessly tugged on their clothes to get their attention. As adolescents, we would beg for the newest thing to keep up with the trends and fit in with our friends. “Be patient,” our parents nagged.  As adults, we want our dream job right out of college, we want to own our own house as soon as we can, and we yearn for our fairytale relationship that we so envy in other people. “Be patient,” we hear from all directions. In an environment where everything is so rushed, it’s hard to practice that particular advice that we’ve been given since day one.

 

Patience is a weakness of mine. I’m notoriously impatient, actually. I have a bad habit of interrupting people when they talk, I sing lyrics to songs two seconds too early and I get so antsy waiting in lines that sometimes it physically pains me. But where I’ve been most impatient, lately, is with my health. I’ve been going through another bad spell–headaches pounding when I wake up that, more often than not, get worse as the day goes on. Leaving me frustrated and pouting, or pushing myself past my limits and making the pain worse.

 

I’ve made a lot of changes in my life recently, though, so I know there are multiple factors to consider when trying to figure out why my headaches have taken a turn for the worse again. I moved into a new house, I was on and off my Vyvanse for my narcolepsy, the season is changing, my allergies are kicking in, the list goes on and on.

 

But instead of being patient and taking it day by day, I’ve been jumping to conclusions quicker than most. I have been automatically assuming that it’s my house that’s making my head worse. Or that my chiropractic and botox treatments are no longer working. I always assume that I’ve figured it all out and that I’ll just never feel better.

 

Take it from me, it does NOT help to be impatient in this way. Well, it really doesn’t help to be impatient in any way, but you get the point.

 

For me, and others who have multiple chronic illnesses, it’s so important to remind ourselves that there are so many different factors at play when it comes to our symptoms. It’s never just one thing for me that is causing my symptoms to flare up badly. My headaches are affected by countless factors: for example, humidity, allergies, the heat, my environment, how tired I am, exercise, stress, anxiety, etc., etc. It’s more often than not, a combination of a variety of things. Which makes it very hard to pinpoint what is causing the flare. Which is why my impatience usually kicks in full gear–because I can’t pinpoint a reason and therefore cannot see an end to the flare in any foreseeable future.

 

So here’s where I tell you the words that you’ve been hearing since day one: Be patient. Take it day by day, literally. Each day is a new day with the possibility that something may change–some things may get better. But the fact is, we won’t know until that new day comes. So take a deep breath, and be patient.  

Be joyful in hope, patient in affliction, faithful in prayers.

-Romans 12:12

June is Migraine & Headache Awareness Month!

June is Migraine & Headache Awareness Month! This month is dedicated to advocating for patients like myself who suffer from an invisible illness that is much more debilitating, physically and emotionally, than most people know.

I’ve lived with migraines & exertional headaches for a little over 10 years now. They have changed the way I live my life entirely. I had to stop playing sports, start avoiding the hot/humid weather, try to accept that I can’t live as active a lifestyle as I wish and overall adapt to the diagnosis.

I’ve lived with chronic daily headaches (meaning no days with a “0” pain level) for around 3-4 years now. This has had a much bigger impact on my life than my migraines, because while my migraines are extremely painful, they only happen on occasion. These chronic daily headaches have become my new norm–they’re like my shadow, always there. The only time I don’t feel them is when I’m sleeping. My chronic daily headaches have resulted in many mental health ups and downs, anxiety, relationship/friendship strains, tons of forced FOMO, many days at home missing the fun, etc.

But this is not meant to be a sob story post. Instead, this is meant to be a post that opens peoples eyes to the debilitating nature of migraine and headache disorders. There is an urgent need to increase awareness of the impact migraines and headaches have on a person’s quality of life. Let’s spend this month (and every month after) shining a light on these disorders and advocating for everyone who deals with them.

2017 Migraine World Summit–The Event of the Year!

Last year, I was so fortunate to receive an email making me aware of an online event called the Migraine World Summit. I didn’t know what it entailed and I wasn’t sure what to expect, all I knew was that world known doctors would be interviewed about migraines, headaches and everything that comes along with them. So I immediately signed up to participate!

There was so much information being talked about–and there was a week of interviews that were available for me to watch! Best part? I was able to participate and watch straight from my bed. Score.

This year, ‘m volunteering for this international event that is going to bring thousands and thousands of participants. I can’t wait to hear what the people interviewing have to say! BTW, some of the people being interviewed include leading experts and doctors from the National Headache Foundation and the American Migraine Association. Sooooo yeah, that’s pretty awesome.

The event begins next week, April 23rd!! Make sure to check out the website here: https://www.migraineworldsummit.com/ and register for the event! I promise you will learn very valuable information and perspective on the migraines and headaches that you’ve been battling day in and day out.

“How To Live Well With Chronic Pain and Illness” Chapter 6 Summary: “Complaining Is a Recipe for Suffering”

When you live with a chronic illness or condition, you find that there is never a shortage of things to complain about. However, this chapter focuses on how to acknowledge those complaints and be mindful of those we have control over and those we do not.

The author in this chapter tells us to separate our complaints into three parts: (1) complaints involving circumstances over which we have no control; (2) complaints involving circumstances over which we might have some control; (3) complaints involving circumstances over which we have total control. She then writes about each separate part, which I will summarize below:

No Control

So many things in our life happen out of our control. While we can’t change what happens, we are able to change how we respond to those circumstances. Complaining about facts and situations that are true and out of our control only causes us additional and unnecessary suffering–which we do not need more of. The author then quoted the Thai Buddhist monk Ajahn Chah and I loved the quote:

If you let go a little, you will have a little peace. If you let got a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.

While I like this quote, it’s also easier said than done: letting go, that is. So when you find yourself just unable to let it go, instead, just let it be.

Partial Control

Some examples of complaints that are under our partial control were: friends who don’t call often, a complaining partner, and the presence of physical pain. She suggests looking for “skillful actions” that can help ease the stress that this complaint is causing. For example, finding new ways of communicating with your partner, looking for pain clinics and new doctors, and picking up the phone to call and reach out to your friend yourself.

Total Control

Total control is almost non-existent for people with chronic illness and pain, even sometimes for people without it as well. Out of the list of complaints that she gave as examples, she was unable to categorize any of them into the total control category.

 

I will leave you with this, my favorite words of hers from this chapter: “Complaining is a habit that clouds our ability to see that most of our complaints involve circumstances over which we have little or no control.”

Complaining is natural. I, for one, complain much more often that I should. I have an extremely hard time letting things go. It’s one of my biggest flaws. But more recently. I have acknowledged this within myself and have been actively trying to let things go and let things be, since I know I have very little or no control over the vast majority of things I tend to complain about.

 

 

“How To Live Well With Chronic Pain and Illness” Chapter 5 Summary: “When the ‘Want Monster’ Whispers in Your Ear

This chapter of the book “How to Live Well With Chronic Pain and Illness” is all about how sometimes we want something so badly that we let our happiness depend on it. For us “spoonies,” most of our wants are health related wants. Wanting a pain free day, wanting a cure, wanting to be able to be physically active, etc. The author describes the feeling of wanting something so badly that our happiness depends on it as the “Want Monster.”

When the “Want Monster” comes around, we convince ourselves that we will truly be happy once we get the thing we are so badly yearning for. For me, I often hear the “Want Monster” telling me that if I could back in time to when my chronic daily headaches weren’t a thing, then I would be happy again. That if I was healthy like my peers, then I would be fully happy. Here’s the problem with that outlook, though: I would still have my share of problems whether I’m healthy or not. Everyone has problems. Not everyone has health related problems, but everyone has them.

True happiness emerges from the acceptance that not everything in life will go our way. Happiness comes from us finding peace with the hand that we’ve been dealt.

I know that I would be happier in most situations if my chronic daily headaches and migraines disappeared forever, there’s no doubt about that. But, I know that I have found some truly great and happy times due to my health conditions. I’ve found amazing people and opportunities and have learned a lot about myself.

When the “Want Monster” tries to enter your life, push it away. Find peace with your life as it is currently, and then you will find a pure happiness.

#HAWMC Day 14: A Case of the Mondays

Pain. We all feel it. It could be short lasting or seemingly never-ending. We get hurt, we cry, we heal.

My pain is constant. The throbbing sometimes has mercy and I feel “fine.” Other times, it’s relentless and merciless. This past week has been a week of the relentless kind of pain.

On my good days, I go to bed with a headache and wake up with one, but on my good days I am not bothered by it because the pain is so minimal that I’m able to wake up with a smile. On my bad days I go to sleep with a 7/10 headache and wake up with a 7/10 headache, or worse. I’ve been having more bad days than good, lately. It’s extremely frustrating. It’s more frustrating than people can imagine. It’s so frustrating that sometimes, it’s all I can think about. I can be with my friends, and I’m thinking about how my pain is never-ending. I can be in church, and I’m dozing off to think about how my pain won’t let up. It occupies all of my mind and energy.

It bums me out when I have to cancel plans because I feel crappy. It bums me out even when I didn’t even have plans, but I know that I’ll be staying in even if I wanted to make plans. It bums me out to know that I’m no where near as healthy as my peers and even so, no where near as healthy as I, my chronically ill self, have felt before.

bummed-dog

It can be hard to go to sleep and tell yourself to begin the next day with an open and optimistic mind, when every day feels like the same broken record playing over and over again.

Even though it’s hard though, I try my best every single day to remind myself to have a better mindset. I remind myself to attempt to shut off my feelings of “but tomorrow I’ll probably feel awful again,” and instead try to turn on my feelings of “but tomorrow, what if I feel even just a little bit better.”

 

HAWMC Day 10: Yahoo Has All The Answers

Yahoo Answers

Q: My head feels like it’s about to explode. The throbbing is so intense. Can someone’s head actually explode?

A: No. Your head cannot physically explode. It will feel like it at times–the throbbing feels intense enough that it feels like something will erupt from within your skull–but no, your head will not explode. It will be over soon.

ryan-gosling-headache-meme

 

#HAWMC Day 4:Wishing For A Concrete Diagnosis.

This isn’t the answer you were hoping for or expecting. Well, the lack of answer, actually. You were hoping to hear a clear cut diagnosis so that you could then begin whatever treatment was available. But it’s not that simple. It won’t be that simple. Instead words like “new daily persistent headache,” “chronic daily headache,” and “chronic migraine” will be thrown at you. They’re all very similar but very different.

It’s going to be hard to find treatments that work for you. Your life will become to feel like a science experiment. But trust me, you need to keep on going. Give different treatments a chance so you can figure out what really will not work for you and your body and you can also discover things that can help you, even if it helps just a little bit.

It’s going to be an up and down roller coaster. You won’t be able to predict or control when the curves are coming or how shaky it’s going to get. What you can do, though, is control, is how you react to those curves and shakes.

Stay strong. Stay resilient. Your mental strength will waiver, your physical strength will at times feel imaginary, but you have the highest pain tolerance of anyone I know.

Even though you won’t be getting a concrete diagnosis, just remember, that you are taking steps forward in this journey of ours.

What’s the Word? “Vatic” 🔮

Wednesday words ⚡️(Adj.) Vatic

I’m 
Maybe I can’t speak for everyone with chronic illnesses, but I know that I find myself trying to predict my “inevitable” future all of the time. I say things like “well I know my head will be really bad this weekend” or “I’m sure I’ll be feeling crappy still” etc. everyone always says “don’t think that way.” It’s a lot easier said than done for someone who has seen the same headache patterns continue for years now. 

But even though I don’t always do it successfully, I do try my best to not think so negatively and I try not to predict how I’ll be feeling in the future 🔮