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A woman is writing in a book about lessons learned as her baby is swaddled against her.

5 Things I Would Tell My Younger Self About My Cluster Headaches

My life looked a lot different 10 years ago. I was 24 and living in fear of my episodic cluster headaches. These attacks upended my life for 2-3 months and then disappeared for 6 months. By the time I picked up the pieces, they were back again to destroy my fragile house of cards.

When were my cluster headaches at their worst?

My cluster headaches were the worst they’d been since they started at age 18. I was struggling to graduate college. I had to cancel my study abroad trip to Costa Rica. Twice. I was in an episodic cycle both times and couldn’t bring 60+ sumatriptan injections in my suitcase (or my oxygen tanks). My mental health was at its lowest point. I didn’t see how I could ever work a full-time writing job or have a successful relationship, let alone children.

What has changed since then?

I’ve learned a lot about my condition since then. I found Clusterbusters, Inc., a nonprofit for cluster headache patients. I wrote a best-selling book on surviving cluster headaches using over 40 interviews with other patients, their family members, and doctors. I fell in love with a fellow clusterhead and am 6 years into a wonderful marriage with two beautiful children.

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What would I tell myself?

I think it’s safe to say I’m an expert on cluster headaches now, and there are some things I wish I could tell 24-year-old Ashley.

Number 1

The first thing I wish I could say to myself is that you are worthy of love and capable of so much more than you think. You are not a drain on society. This is a rough patch that you will overcome, leading to amazing things, including that family you’ve always dreamed of. Ten years ago. I wasn’t sure I could have children for fear of passing this disease on to them. Three miscarriages and two full-term pregnancies later, I have a 2-year-old and a 4-month-old. I feel more equipped than ever to handle a child with a headache disorder.

Number 2

The next thing I wish I could say to myself is to really think about those sumatriptan injections. I know that you are going to the pharmacy every day and begging for two more just to get through the next 24 hours, but what you don’t know is that the medication is actually making you worse. Those life-saving shots give you relief within minutes, but they are why you now get six attacks a day instead of one or two.

Number 3

Another thing I would say to younger Ashley is that your primary care physician at the University doesn’t care as much as you think she does. You’re about to be kicked out of her care because you couldn’t drive yourself to an appointment because of an active cluster headache attack. Your next doctor will be an invaluable resource who will help you take back your life.

Number 4

I’ve met many people whose friends and/or family dropped or dismissed them when they were at their worst. My friends drove me to the ER, helped me get meds at the pharmacy, or found a way to make me laugh when I was down. You will come to know people of all ages who have fought much harder to get their loved ones to see their pain is real.

Number 5

Lastly, you are going to graduate college, and you are going to do great things. No, you won’t make it to Costa Rica, but you will get to travel all over the country to advocate for cluster headache patients and meet people who went through the same struggles. That dream of being a full-time writer will happen. You will specialize in medical content, something that couldn’t have happened without cluster headaches. Because of this condition, you will develop lifelong friendships and meet the love of your life.

Right now, you might be haunted by the middle-of-the-night attacks and afraid to leave the house, but good things are right around the corner.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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