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Migraine Stories: Chronic Migraine Hasn’t Eclipsed Larissa’s Spirit

At 30 years old, Larissa has never been able to work full time due to chronic migraine. She still works when she can with an “extremely part-time job” that takes six hours a week and sells her beautiful knit goods on her Etsy shop, Purl Knitting. Larissa is also studying arts and cultural management in a part-time distance learning program. Her determined, hopeful spirit shines through her responses. 

chronic migraine spiritHow frequent are your migraine attacks? What’s your pain like? What are your other most bothersome symptoms?

I have migraine symptoms mixed with tension type headache every day that includes muscle pain and tension, moderate head pain, light sensitivity and nausea. About twice a week it will worsen into a more severe attack. My migraines go in cycles of severity as well, so I will sometimes have a very severe migraine for 2-3 weeks. My pain can be either one sided or all over my face and head, and is usually around a 4-6 out of 10 on daily basis. I would say my most bothersome symptoms are widespread constant muscle pain and tension throughout my face, neck and shoulders, nausea and lack of energy.

What are some of things you find most frustrating about having chronic migraine?

My lack of ability to plan anything or know if I will be able to do anything, and the limitations that it places on my day to day life. I have to constantly pace myself and reign in my activities and energy output to be able to make it through the day.

How has your career been affected by chronic migraine?

I have never been able to work full time because of chronic migraine, and I am now only able to work limited hours from home as an arts administrator. I have had to leave jobs because of it and I’ve had to be on employment insurance because of it. I trained to be a dancer and would like to dance in some way now, but migraines are really holding me back. I feel that although I have the skills and experience needed to do the jobs that I want to do, I don’t fit most job descriptions because I can’t be there in person all the time or work in a traditional way.

However, I consider myself very lucky to be able to work a little bit and also run my Etsy shop, Purl Knitting. Knitting is something I can do 98% percent of the time even if I am quite sick, so it is amazing to have something like that in my life. I am also completing a certificate in Arts and Cultural Management online from Grant MacEwan University that I have been working on for a few years now.

How do you manage work and school with chronic migraine? Can you share any coping or planning strategies that you find useful?

To balance work and school I first do a lot of upfront communication with my employer and with my school professors and staff to make sure they understand my condition and how it can affect me. I am registered with the Disability Accommodations office at the University. Then, I am a very careful planner and make sure that I stay well on top of my work and school so that I always have a buffer if I need to take a few days off being sick. I do plan in a way that no day will have too much work in it but also will allow me to get ahead of schedule. As I said, I do both work and school from home so I can work in small chunks and then rest, eat, walk and nap in between.

What coping strategies do you use to deal with chronic migraine?

The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life. When someone first suggested that I needed to do this, I was incredibly angry because it seemed so wrong to accept something like this into my life. Doing so has allowed me to move forward and focus on what I can do. I see a psychotherapist once a week to work on coping strategies which has been extremely useful and made me much more resilient. I have generalized anxiety disorder and have had depressive episodes so I keep a close eye on myself and have my husband and doctors do this as well to notice any flare ups. I find it very important to catch them before they get too bad because if I get into bad mental state my migraines will spiral out of control.

What do you wish people knew about migraine?

I wish people knew that migraine is more than just a bad headache, that it is a neurological disorder that causes you to experience widespread symptoms and severe disability.

What else would you like to share?

For people with migraine: You are enough, and you do enough.


Readers, we’d love to read your story! You can submit it (and upload pictures) at: What’s YOUR Story?

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

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

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.

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Loves the Quiet

This is a reader-submitted post.

1. My diagnosis is: Hemiplegic migraine, Chronic migraine, Classic migraine with and without aura, Cluster headaches
2. My migraine attack frequency is: About 4 days a week
3. I was diagnosed in: 1990 (approximately)
4. My comorbid conditions include: Hypoglycemia, Allodynia
5. I take 5 medications/supplements each day for prevention and 4 medications/supplements to treat an acute attack
6. My first migraine attack was at about 12 years old.
7. My most disabling migraine symptoms are losing vision, vomiting, disabling pain.
8. My strangest migraine symptoms are losing the ability to speak clearly, foggy thinking, yawning non-stop, tunnel vision, seeing “sparkles”
9. My biggest migraine triggers are stress let-down, changes in sleep pattern, weather, hormones, not keeping a regular food schedule, traveling.
10. I know a migraine attack is coming on when my skin starts to get hot and my stomach starts to churn.
11. The most frustrating part about having a migraine attack is not being able to do anything about it, missing out on important life events, feeling like you are constantly letting people down.
12. During a migraine attack, I worry most about my husband having to pick up all of my slack.
13. When I think about migraine between attacks, I think “No migraine? There must be ABSOLUTELY NOTHING important going on today”
14. When I tell someone I have migraine, the response is usually some “magic” thing that they think will get rid of migraines… it won’t.
15. When someone tells me they have migraine, I think that if I talk to them for a minute or two I can figure out if they REALLY have migraines or if they get they occasional tension headache.
16. When I see commercials about migraine treatments, I think “Well here is another treatment that will be overpriced, highly metered by the insurance companies, and I won’t be able to take anyway because of the type of headaches that I have.”
17. My best coping tools are knowing that I have a primary care physician who will always be willing to break a headache if it won’t go away. I rarely have to go to the ER anymore.
18. I find comfort in knowing that my husband understands what I’m dealing with.
19. I get angry when people say “oh well if you would just do X (whatever supplement/juice/thing-they-say-on-TV) your migraines would go away
20. I like it when people say “I understand that you can’t be there. It’s ok.”
21. Something kind someone can do for me during a migraine attack is just leave me alone.
22. The best thing(s) a doctor has ever said to me about migraine is that they are willing to keep trying things until something works.
23. The hardest thing to accept about having migraine is that it doesn’t go away.
24. Migraine has taught me I can’t control everything.
25. The quotation, motto, mantra, or scripture that gets me through an attack is “nothing lasts forever”
26. If I could go back to the early days of my diagnosis, I would tell myself to prepare to deal with this for the rest of your life.
27. The people who support me most are my husband and my dogs (don’t tell me they aren’t people!)
28. The thing I most wish people understood about migraine is it can’t be fixed with a magic potion.
29. Migraine and Headache Awareness Month is important to me because it let’s people here real stories from real people
30. One more thing I’d like to say about life with migraine is although it’s difficult, it’s not beyond hope.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.

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Thank you for Reminding Me That I am Not Alone! 30 things about my migraine life

This is a reader-submitted post.

1. My diagnosis is: Chronic Migraine

2. My migraine attack frequency is: I have head pain almost daily, approximately 20-25 day’s per month. The severity and symptoms vary daily. Botox is beginning to show me some relief though, for about 6 weeks between injections!

3. I was diagnosed in: 2004 and initially I was episodic, the last few years I have been in an Intractable state.

4. My comorbid conditions include: History of TIA, Congenital Heart Defect. May be related, the Migraines started after the TIA and an Atrial Implant.

5. I have Botox injections every 90 day’s currently, supplemental daily and abortive medications.
I could not possible remember all of the deifferent medications that I have tried. The most effective form of treatment for me was Nerve Blocks. They provided relief for approximately 3 weeks and then I would slide right back in to the same chronic state though.

6. My first migraine attack was: In 2004. I thought that I was dying, having a stroke. I started initially having what I would refer to as a 10,000.00 headache (emergency room visit and the complete work up) just a couple of times per year!

7. My most disabling migraine symptoms are: Numbness, tingling, weakness (stroke like), Constant Vertigo and Head Pain. My right temple hurts constantly. Just varying degrees of pain…forgetfulness, cognitive abilities and reasoning skills and simply communicating.

8. My strangest migraine symptoms are: Constant Yawning. Cognitive impairment, trouble speaking and comprehending. Phantom smells. Last week I was in the hospital, I started to brush my teeth with blistex! The really sad thing was that I just acknowledged with the Nurse that Blistex was a great thing to give out, since you get so dehydrated in the hospital. And then, I started to brush my teeth with it!
9. My biggest migraine triggers are: Lights (fluorescent mostly), smells, noise. Weird, random, unexplained, and varying. Certain stores, hardware stores, plastics, fertilizers, exhaust fumes etc.,

10. I know a migraine attack is coming on when: The Back of my Neck starts getting stiff. This is usually but not always the first sign.

11. The most frustrating part about having a migraine attack is: I can not accurately predict it or control it. The only thing that seems to help is doing as little as possible…It is extremely difficult to work, concentrate, think clearly and/or do anything at all.

12. During a migraine attack, I worry most about: all of the symptoms, could this be more than a migraine…what if I am having a stroke?

13. When I think about migraine between attacks, I think: Wow, I feel half decent today 🙂

14. When I tell someone I have migraine, the response is usually: Oh, yea, I hate headaches etc.

15. When someone tells me they have migraine, I think: Oh, I am so sorry, how can I help you?

16. When I see commercials about migraine treatments, I think: Yea, whatever! Very frustrating to see all of the so called cures/guarantees for migraine sufferers. “Dr. Oz said” yea, yeah, yea…

17. My best coping tools are: Quiet and Rest.

18. I find comfort in: My doctor’s understanding of Migraines and my personal support system, my spouse and my family members that understand.

19. I get angry when people say: Did you have another headache?

20. I like it when people say: I can’t imagine what that is like and/or I hope that you can find relief soon.

21. Something kind someone can do for me during a migraine attack is: Be understanding that I am not myself, physically, cognitively and/or emotionally. Try not to ask me a lot of questions or try to engage in conversation. It is just too difficult to think, let alone communicate effectively.

22. The best thing(s) a doctor has ever said to me about migraine is: You are not alone. There so many people just like you, in chronic pain. We will keep trying 🙂

23. The hardest thing to accept about having migraine is: It is unpredictable and only slightly manageable.

24. Migraine has taught me: To embrace my good hour’s and occasional day’s to the fullest. Get as much accomplished as possible while I feel decent!

25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass 🙂

26. If I could go back to the early days of my diagnosis, I would tell myself: You ain’t seen nothing yet, yikes!

27. The people who support me most are: My husband and my Neurologist.

28. The thing I most wish people understood about migraine is: It is not just a bad headache and each of us have our own array of triggers, symptoms and solutions. Caffeine does not bother me even though it may trigger others. Icing my forehead does not help me either, it makes me feel worse. Yes, I get plenty of rest, I eat well, I take pretty darn good care of myself!

And as soon as my head stops hurting and the constant state of dizziness lets up for a little while, I will begin to exercise more too 🙂

29. Migraine and Headache Awareness Month is important to me because: Unless you have experienced a migraine, you couldn’t possibly understand all of the complex neurological side effects that go along with the headache.

30. One more thing I’d like to say about life with migraine is: Challenging, enjoy your good day’s to the fullest 🙂

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.

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My migraine life!

This is a reader-submitted post.

1. My diagnosis is: Migraines
2. My migraine attack frequency is: 5-7 times/mo +
3. I was diagnosed in: 1985
4. My comorbid conditions include: Diabetes, Arthritis, High cholesterol
5. I take Metformin + many sup.____ medications/supplements each day for prevention and sumatriptan____ medications/supplements to treat an acute attack
6. My first migraine attack was: ?
7. My most disabling migraine symptoms are: Nausea and flu like feeling
8. My strangest migraine symptoms are: My nosebone gets very heavy like I have heavy glasses on
9. My biggest migraine triggers are: Weather
10. I know a migraine attack is coming on when: The bridge of my nose gets heavy, my eyes get congested, my ears clog up like being under water and then my head starts hurting
11. The most frustrating part about having a migraine attack is: Not being able to think straight
12. During a migraine attack, I worry most about: Being present in life with work and home and taking too much medicine
13. When I think about migraine between attacks, I think: I try to enjoy not having one and NOT think about it and then I think WHAT can I try to get rid of them!
14. When I tell someone I have migraine, the response is usually: Oh that’s awful
15. When someone tells me they have migraine, I think: Oh that’s awful, I can relate
16. When I see commercials about migraine treatments, I think: MAINSTREAM meds!
17. My best coping tools are: Ice and Sumatriptan
18. I find comfort in: Knowing that the Sumatriptan still helps
19. I get angry when people say: After you go thru menopause they’ll go away
20. I like it when people say: You poor girl
21. Something kind someone can do for me during a migraine attack is: Don’t talk to me
22. The best thing(s) a doctor has ever said to me about migraine is: The allergist told me to go see a neurologist
23. The hardest thing to accept about having migraine is: That it probably will be a life long problem
24. Migraine has taught me: To live in the moment and revel in the days migraine free
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Hang in there
26. If I could go back to the early days of my diagnosis, I would tell myself: At least now I know what is going on
27. The people who support me most are: My family
28. The thing I most wish people understood about migraine is: How disrupting and unmanageable it can be
29. Migraine and Headache Awareness Month is important to me because: It brings attention to the disease
30. One more thing I’d like to say about life with migraine is: It sucks!

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.