Category: Reader Stories

Chronic Migraine, Reader Stories

Migraine Stories: 14-Year-Old Raises $12,110 for Migraine Research

Kerrie Smyres

Daisy Griffin, a 14-year-old who has chronic migraine, raised $12,110 for migraine research by sailing alone across the Long Island Sound. She will donate 100% of the money raised to the Migraine Research Foundation.

Daisy’s Migraine Story

Daisy has had severedaisy_griffin_sail migraine attacks since she was four, which have progressed to chronic. Like so many of us, she has tried a slew of treatments, from medications to supplements to yoga to biofeedback. She’s had two in-patient hospital stays to treat migraine. Thanks to a couple preventive medications, she’s feeling better now, but still has a headache every day and migraine attacks at least a few days a week.

When I asked what she wished people understood about migraine, she said, “I really wish that people would get that I’m not just having a headache. I have a headache all the time and a few times a week it becomes a severe migraine. A lot of times people tell me how lucky I am that I miss school all the time. I actually feel lucky when I can make it to school, or even when I can get out of bed.”

Sailing for Migraine Research

Daisy has been sailing avidly since she was eight years old. It’s one of her great passions and she fears chronic migraine could force her to give up. Since she’s been feeling better, she sees this sailing trip across the sound as “sort of like me saying: Take that migraines! I can still do what I love!”

Daisy sailed an 18-foot spinnaker, the largest boat she’s ever sailed by herself. The sailing itself was much easier than she expected because the wind wasn’t very strong. But little wind also made for, in Daisy’s words, a “loooong” trip.

Having chronic migraine meant that Daisy’s trip could have be derailed by the ever-present threat of another attack. She was hopeful that even if she had a migraine attack, sailing would distract and relax her, as it usually does. To prepare, she made sure she got enough sleep and drank a lot of water before the trip. It worked! Daisy’s head hurt a bit, but she didn’t have a migraine attack. (Her father trailed at in a motorboat, so she could radio him for help if she had an attack. But she didn’t need to.)

Fundraising

In addition to the sailing trip, Daisy has raised awareness and donations through a booth at local fair (where she hosted a migraine trivia game) and a lemonade stand with her siblings and cousins. She wrote to groups and individuals to solicit donations and publicize her trip. A generous donor agreed to double the amount that she raised, which brought the total to $12,110.

You can still donate to Daisy’s campaign and the Migraine Research Foundation through CrowdRise.

Way to Go, Daisy!

I’ve never met Daisy, but I’m tearing up as I write about her accomplishments. Much of her young life has been dominated by migraine. Instead of trying to forget about migraine as soon as she felt better (as most of us would have done whether 14 or 57), she threw her newfound energy into raising awareness and funding for research. Her efforts took remarkable dedication and resourcefulness. It’s an impressive feat at any age.

Learn more about Daisy and her trip on her website, Sail for Migraine Research.

Community, Reader Stories

American Migraine Foundation’s Blog a Day

Kerrie Smyres

The American Migraine Foundation (the group behind the 36 Million Migraine campaign) celebrated Migraine and Headache Awareness Month with daily featured posts from five different migraine bloggers. It was a ton of great information and I was honored to be chosen to participate. The other bloggers who participated were Lisa Jacobson from The Daily Migraine, Sarah Hackley from The Migraine Chronicles, Michelle Tracy from The Migraine Warrior, and Anna Eidt from Brain Storm. (Check out their great blogs!) If you didn’t get a chance to see all the posts, they’re worth a look. Here’s the lineup:

  1. Moms and Dads With Migraine (Lisa)
  2. Early Second Trimester Migraines (Sarah)
  3. Dehydration as Migraine Trigger (me)
  4. Chronic Caregiver (Michelle)
  5. On chronic pain and depression (Anna)
  6. Migraine-15 Steps to Create and Environment Conducive to Wellness (Sharron)
  7. When in Doubt, Nap: 64 Inspirational Quotes from Chronic Pain Sufferers (Lisa)
  8. An Open Letter to My Pre-Migraine Self (Sarah)
  9. Migraine Hangover (aka Postdrome) (me)
  10. A Vanilla Cupcake and a Whisper (Michelle)
  11. Cures (Anna)
  12. Migraine: ‘I am a Person, Not a Diagnosis’ (Sharron)
  13. TMJ and Migraine (Lisa)
  14. Coping With Occipital Neuralgia Without Medication (Sarah)
  15. Sleep, Schedules, and Migraine (me)
  16. Chronically in Love: The V-Day Edition (Michelle)
  17. Migraine ≠ Headache (Anna)
  18. Migraine: What’s Stress ‘Let Down’ Got to Do With It? And Did Someone Say Stress-Management (Sharron)
  19. Heat+Glare+Sun=Migraine (Lisa)
  20. no post today
  21. Managing Your Migraines in the E.R. (Lisa)
  22. I’ve Always Depended on the ‘KID’-ness of Strangers — Talking to Children About Chronic Migraine (Michelle)
  23. On Thriving With Chronic Migraine (Anna)
  24. Effective Use of Medications for Migraine Relief — 5 Ways to Overcome Unmet Needs and Improve Our Treatment Outcomes (Sharron)
  25. Are You a ‘Spoonie’? (Lisa)
  26. 32 Bizarre Migraine Treatments (Lisa)
  27. Sunny Weather = Fewer Migraines? The Everlasting Hunt for Triggers (me)
  28. From Migraine to Mygraine (Michelle)
  29. On Pondering Parenthood With Chronic Pain (Anna)
  30. A Role for Integrative (Complementary) Therapies in Preventing the Progression of Episodic to Chronic Migraine, and Remittance (Sharron)

 

 

30 Things Meme, Reader Stories

Living with Chronic Daily Headache

reader

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 9 months, but have had severe headaches since my car accident
2. The first headache I remember is: After my car accident 6.5 years ago
3. After the headache started, it took 5 months to get a diagnosis.
4. My pain level fluctuates
5. My typical pain level ranges from: 6 – 8
6. In addition to pain, my symptoms include: sensitivity to light and sound, chronic fatigue, irritability, memory issues, lack of energy, need for constant rest
7. Treatments I have tried include: Medications (Amitriptyline 10mg, Topomax 100 mg, Axert, Maxalt), massage, cupping, chiropractor, essential oils: lavender, stress away, thieves), craniosacral therapist, naturopath, doctor of natural medicine, liver cleanse, nerve blocks, trigger point injections, subcutaneous needling, acupuncture, homeopathy, peat bath, tens unit, heat + ice, hydrotherapy, psychotherapist, vitamins and supplements, yoga, daily stretching and ball rolling, elimination diets + healthy foods, the list goes on.
8. I take magnesium, omega 3, vitamin D, curcumin and stress B-complex each day for prevention and nothing when the pain becomes unbearable. I haven’t found anything yet that relieves my pain when it’s unbearable.
9. When the pain gets bad, I: Lay down in a dark room with no noise and ice on my head.
10. The most frustrating part about having CDH is: Not having a normal life. I can’t do the simplest daily activities that I used to be able to do. Also, not being able to find any treatments that help me cope with the pain. Hopefully one day I find what works for me, but it’s a very long process.
11. Because of CDH, I worry about: My future. I worry that I won’t be able to find a partner in life that will want to deal with my headaches and accept me for the way I am. I also worry if I’ll ever be able to handle having kids.
12. When I tell someone I have CDH, the response is usually: “make sure you drink enough water” or “I don’t understand how a headache can last that long”
13. When I see how little research and information exists on CDH, I feel: upset and frustrated. It makes me want to feel better so I can help donate or volunteer.
14. Having CDH has affected my work/school life by: I have had to quit my job and will be moving back in with my parents next month. It has put my career on hold or maybe even permanently.
15. Having CDH has affected my family life by: I don’t have a husband or kids, but it has severely affected my social life. I don’t make plans with my friends to go out and if I do see them I can only handle one person at a time. They will come to my house and sit in the dark with me. But I can’t go out in a group anymore or be in public.
16. The one word that best describes my experience with CDH is: debilitating
17. My best coping tools are: my family/friends, my doctors, ice, sleep, stretching
18. I find comfort in: the fact that I’m not alone. Before this happened I didn’t realize how many people suffered from CDH, migraines etc. I do not wish this on anyone, but it’s nice to know there are people out there who understand what I’m going through and can relate to me on a level that my friends and family can’t.
19. I get angry when people say: they’ve had headaches too and know what it’s like.
20. I like it when people say: they’re praying for me or thinking about me. Even though I can’t be there physically, it’s nice to know I’m still in their thoughts.
21. Something kind someone has done for me in relation to CDH is: My mom and my nanny both drive me to all my appointments and help clean and cook my meals.
22. The best thing a doctor has ever said to me about CDH is: that I’m young and even though it will take some time he knows I will get better. And that there are a lot of options and treatments left to try. To spend time focusing on myself and get back in touch with my body since I had been neglecting it for so long.
23. The hardest thing to accept about having CDH is: that I may have to deal with this pain the rest of my life. That I probably won’t ever have the same lifestyle I used to. But I’m trying to look at that as a positive thing. That going forward I have and will continue to make changes in my life in order to lead the most authentic life possible.
24. Having CDH has taught me: to slow down. To spend more time evaluating my life and not be complacent. It’s also taught me to appreciate little things and be grateful for what and who I have in my life.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “For what it’s worth: it’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find that you’re not, I hope you have the strength to start over.” F Scott Fitzgerald
26. If I could go back to the early days of my diagnosis, I would tell myself: not to stress and worry so much.
27. The people who support me most are: My mom and nanny
28. The thing I most wish people understood about CDH is: that it’s real and very debilitating.
29. Migraine and Headache Awareness Month is important to me because: it brings together a community of people who support and understand each other. And it allows us to slowly change the way the rest of world views us and help them understand.
30. One more thing I’d like to say about living with CDH is: I would not wish this on anyone, but without this happening to me I wouldn’t have learned some very important life lessons. As a young 26 year old, I have been given an opportunity to make changes in my life and learn lessons that most people never learn. I try to be as optimistic as possible about my situation and for everyone else out there remember how important gratitude is. Even in the darkest of days, remembering what you do have in your life can help you get through the day.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

30 Things Meme, Community, Reader Stories

Win a Pair of TheraSpecs or a Coaching Session With Kerrie!

Kerrie Smyres

MHAMgiveawayThe 30 Things meme is all about raising awareness of migraine and headache disorders… and you can win a prize, too!. Answer 30 questions about what it’s like to live with migraine or a headache disorder and submit your answers in the form at the end of the questions. By submitting your answers, you’ll be entered to win a 30-minute phone or Skype coaching session with me or your choice of any pair of indoor TheraSpecs. Your responses will be given a URL, which you can share to raise awareness. You’ll get an extra entry each time you share your 30 Things on Facebook or Twitter and tag The Daily Headache or @tdhblog (be sure to tag The Daily Headache so I see your entry!).

To be entered, simply submit your responses to the 30 Things meme by midnight June 29 (Pacific time). For extra entries, share your URL on Facebook or Twitter as many times as you wish before midnight June 29 (don’t forget to tag The Daily Headache or @tdhblog). On June 30, I will announce a randomly select a winner. To preserve anonymity of those who prefer it, I will only announce the winning entry, not the winner’s name.

Rules summary: Giveaway valid in the US and Canada only, except Quebec. (Sorry, the variation in local laws makes it too difficult to do elsewhere!) No purchase necessary. Winner will be randomly selected from all entries. Entries can be made through the 30 Things meme on The Daily Headache and sharing your answers on Facebook or Twitter (be sure to tag The Daily Headache so I see that you shared!). You can also enter by emailing kerrie[at]thedailyheadache[dot]com with the subject “Giveaway Entry.” Entries will be accepted from June 1 through midnight on June 29, Pacific time. The winning entry will be announced on June 30 on The Daily Headache, Facebook, and Twitter. The winner will have until midnight on July 3 to contact me to claim the prize. If the winner does not contact me, I will draw another winner. Email kerrie[at]thedailyheadache[dot]com for complete giveaway rules.
30 Things Meme, Reader Stories

What Are YOUR 30 Things About Living With Migraine or a Headache Disorder?

Kerrie Smyres

Migraine and headache disorders 30 Things memeYour early response to the 30 Things meme is so exciting! I love learning about how you all cope with migraine, CDH, and NDPH and know that other readers will learn much from you (and hope people with other headache disorders will be represented, too). Some responses have even brought me to tears, like:

“My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.” —Take & Give

This reader’s insistence on gaining something from migraine is a wise approach to retaining the upper hand. So often, refusing to give the upper hand is synonymous with barging through life as if in perfect health, which often leads to worsening symptoms. Instead, this reader recognizes the loss and limitation of having migraine, but also what can be learned and gained from it. It is wisdom I try to live by, though I’ve never described it so eloquently.

Be sure to check the 30 Things Meme category and Twitter and Facebook for more insight from readers. To keep you from being overwhelmed by 10 times as many posts as usual, reader submissions are not going out by email, in RSS feeds, or on the homepage of The Daily Headache. I’ll be highlighting comments throughout Migraine and Headache Awareness Month, which starts June 1, but there’s no way I’ll be able to share them all with you.

Will you share your 30 things? Here are the instructions and links to questions: Migraine and Headache Disorders 30 Things Meme. You can tell your story and remain anonymous, if you choose. (You need to put your name and email in the form to post, but I’m the only person who will see them and I won’t send you spam.) It’s a great chance for a short reflection on your life with a headache disorder. And, each story has it’s own URL, so you can send the link to friends and family, if you wish.

P.S. I’m putting together a contest from Migraine and Headache Awareness Month and will draw winners from 30 Things submissions. I’ll share details next week.