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My Migraine Life

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 3-4 per month lasting 5 days to 2 weeks
3. I was diagnosed in: 1984
4. My comorbid conditions include: Diabetes
5. I take _5___ medications/supplements each day for prevention and _2___ medications/supplements to treat an acute attack
6. My first migraine attack was: When I was 9 years old
7. My most disabling migraine symptoms are: The inability to function mentally, vomiting
8. My strangest migraine symptoms are: Smelling and hearing things that aren’t there
9. My biggest migraine triggers are: Lack of sleep, hormones, and stress let-down
10. I know a migraine attack is coming on when: I get a tingling sensation in the back of my neck, I get confused easily, or I start getting visual interference
11. The most frustrating part about having a migraine attack is: Not being able to be a part of my friends or families lives, having to have my Husband pick up all my slack
12. During a migraine attack, I worry most about: What it’s going to take to get rid of this one, i.e. medication, money, strength, how long is it going to last, and what am I going to miss
13. When I think about migraine between attacks, I think: What can I do to not get another one, what part of my life will it disrupt, and how bad will the next one be
14. When I tell someone I have migraine, the response is usually: I’m sorry, then either crickets or stories about another person and how they successfully treated them
15. When someone tells me they have migraine, I think: I’m so, so sorry, how can I help, how can I make them not feel alone, what’s your protocol, who’s your doctor, and how long have you had them
16. When I see commercials about migraine treatments, I think: I wished you’d just stop. You make it look too easy and give those who don’t have them a false understanding of them. People then think that you are not trying hard enough because if you were, this would help and you’d be fine or it can’t be that bad, look at the people on TV. If there is a new treatment out there, my doctor will inform me or I’ll find it while researching on the internet.
17. My best coping tools are: Finding good doctors, knowing it won’t last forever (I’ve got to die someday), and hugs from my Hubby.
18. I find comfort in: Knowing the suffering isn’t in vain, understanding when I’m unable to be a part of family life, and kindness from others
19. I get angry when people say: It’s just a headache, if you had a healthier lifestyle, you wouldn’t get those, I know exactly what you are going through, you bring it upon yourself by not *insert vague notion of the latest pill, food, smoothie, remedy, treatment fad here*
20. I like it when people say: What can I do to understand what you are going through better, Is there anything I can do to help, and We’re sorry you can’t be with us for this special time, but we understand, hopefully next time will be better
21. Something kind someone can do for me during a migraine attack is: Understand that the reason I’m not with them isn’t because I don’t want to be, but because I can’t be, don’t take it personally
22. The best thing(s) a doctor has ever said to me about migraine is: I believe you and will do everything I can to help alleviate the problem, call me night or day
23. The hardest thing to accept about having migraine is: Losing any modicum of control over my life, having to have others take on my burden, having things fall apart around me (i.e. my job, my home, friendships) and not be able to do anything about it
24. Migraine has taught me: to have empathy for others who suffer, humility
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Life doesn’t last forever and it could be worse
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t try to have so much control over your life, relax and enjoy things more
27. The people who support me most are: My Husband
28. The thing I most wish people understood about migraine is: It’s a debilitating disease, not just a headache and there is no one answer for everyone, the resulting actions (or lack thereof) are neither personal nor simply not wanting to do something
29. Migraine and Headache Awareness Month is important to me because: It will help put the word out for those who are unaware and may trigger help in the department of research
30. One more thing I’d like to say about life with migraine is: I’m sorry migraine is my life right now and it takes everything out of me with little to nothing left for anyone else, I didn’t choose it, and please know that if I could do it (whatever it might be), I would

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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30 things about My life with Migraine.

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: Daily
3. I was diagnosed in: 1977
4. My comorbid conditions include: Tension Headaches, Fibromyalgia, Trigeminal Neuralgia, and TMJD
5. I take 3 different medications/supplements each day for prevention and treatment. Also 3 different medications/supplements to treat an acute attack
6. My first migraine attack was: My mother and I both believe was at age 18 months
7. My most disabling migraine symptoms are: Sensitivity to sound/ Light, Extreme Pain, and Nausea
8. My strangest migraine symptoms are: Phantom Smells, vertigo
9. My biggest migraine triggers are: Weather, Loud noises and bright lights
10. I know a migraine attack is coming on when: I have frequent Yawning, visual disturbances, and or phantom smells
11. The most frustrating part about having a migraine attack is: Feeling helpless or lazy
12. During a migraine attack, I worry most about: Missing out on life
13. When I think about migraine between attacks, I think: Knock on Wood!
14. When I tell someone I have migraine, the response is usually: Judgement, Disbelief, or just disinterest
15. When someone tells me they have migraine, I think: Depends on if I Know them. If I KNOW they truly have Migraines, Sincere Empathy. otherwise, I sometimes think THEY don’t really understand what a Migraine is
16. When I see commercials about migraine treatments, I think: Pftt. I wish that worked!
17. My best coping tools are: essential oils, self relaxation, being quite, and lastly, mostly as a last resort, medicating
18. I find comfort in: online support groups
19. I get angry when people say: Have you tried Goody powders? or Excedrin, or the Green smoothie?
20. I like it when people say: That sucks. Feel better
21. Something kind someone can do for me during a migraine attack is: Acknowledge that I am NOT faking or looking for attention. Fix me a drink (soda), or bring my meds or coping tools to me.
22. The best thing(s) a doctor has ever said to me about migraine is: Wow! You really have tried it all! Lets see what we can do to help you
23. The hardest thing to accept about having migraine is: There will Always be people that do NOT understand, or do not believe me.
24. Migraine has taught me: Life isn’t Fair
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Breathe! Just Keep Breathing.
26. If I could go back to the early days of my diagnosis, I would tell myself: This is a real Dx, You did Not ask for this, and you are NOT a burden
27. The people who support me most are: My Partner and online friends
28. The thing I most wish people understood about migraine is: It is so much more than just a Headache, even a Bad Headache
29. Migraine and Headache Awareness Month is important to me because: I suffer and so do a LOT of my friends. Many just do NOT get it.
30. One more thing I’d like to say about life with migraine is: If you LOVE me, then you have to accept that whether I like it or not (and I do NOT), I have Chronic Migraines. I only want acceptance.

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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Professor

This is a reader-submitted story.

1. My diagnosis is: chronic migraine
2. My migraine attack frequency is: 6-18 per month until recently (medical botox is working for me!)
3. I was diagnosed in: 1990’s
4. My comorbid conditions include: degenerative disc disease and osteoarthritis
5. I take __8__ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack
6. My first migraine attack was:1972
7. My most disabling migraine symptoms are: debilitating pain
8. My strangest migraine symptoms are: aura; brain fog; difficulty thinking and talking
9. My biggest migraine triggers are: heat; over-exertion; stress; blinking light
10. I know a migraine attack is coming on when: I get a “grainy” feeling in my head and pain in the back of my neck and skull; I also feel tired and out-of-sorts
11. The most frustrating part about having a migraine attack is: loss of valuable time and daily life
12. During a migraine attack, I worry most about: the duration of the pain
13. When I think about migraine between attacks, I hope I will not have a migraine for awhile
14. When I tell someone I have migraine, the response is usually: pity or compassion or silence
15. When someone tells me they have migraine, I think: What do you need?
16. When I see commercials about migraine treatments, I think: Right, an excedrin . . . get real!
17. My best coping tools are: massage; ice cream; the couch and tv
18. I find comfort in: ice cream and tv
19. I get angry when people say: Have you tried . . .
20. I like it when people say: I’m sorry to hear that . . .
21. Something kind someone can do for me during a migraine attack is: allow me to take care of myself
22. The best thing(s) a doctor has ever said to me about migraine is: “You are a candidate for medical botox.”
23. The hardest thing to accept about having migraine is: That the more migraines I have, the more I am likely to have
24. Migraine has taught me: compassion for others; to protect myself from ignorance
25. The quotation, motto, mantra, or scripture that gets me through an attack is: n/a
26. If I could go back to the early days of my diagnosis, I would tell myself: learn more about diet and exercise and take it seriously
27. The people who support me most are: My dear, dear husband!
28. The thing I most wish people understood about migraine is: it’s not a headache and that, yes, most migraineurs have tried everything
29. Migraine and Headache Awareness Month is important to me because: educating myself and, hopefully, the general public
30. One more thing I’d like to say about life with migraine is: I forgive all the people who have judged, doubted, criticized, and hurt me because of their own ignorance.

thanks Kerry –you are terrific! xovm

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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15 Years in the Dark

This is a reader-submitted story.

1. My diagnosis is:
Migraine, cluster, and tension headaches.
2. My migraine attack frequency is:
Completely unpredictable. I went two years with only half a dozen bad migraine days. Twice I’ve had an intractable migraine last for 5+ months. There’s no way to know when they’ll come or how long they’ll stay.
3. I was diagnosed in:
March 1, 2000. You never forget your first!
4. My comorbid conditions include:
Hashimoto’s thyroid disease.
5. I take 9 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack.
6. My first migraine attack was:
In the shower when I was getting ready for work. I blacked out from the pain and woke up in the hospital, where my mother stayed with me in the Peds ICU for nearly 2 weeks. I was 18 years old.
7. My most disabling migraine symptoms are:
Losing vision in my left eye, losing hearing in my right ear, dizziness, nausea, motion sickness, and feeling like Alice in Wonderland when she gets SO tall.
8. My strangest migraine symptoms are:
Seeing purple lava lamp like blobs dancing around. I call them the amoebas.
9. My biggest migraine triggers are:
Thunderstorms, wind, snow, and other major weather changes. Stress, not sleeping, not eating, and not drinking enough water.
10. I know a migraine attack is coming on when:
It hits me in the face. I have always described it as a pool ball smack to the left temple. I don’t have any other warning.
11. The most frustrating part about having a migraine attack is:
Whatever plans I had that day are out the window.
12. During a migraine attack, I worry most about:
How long will it last? Am I going to be ok in 4 hours? 4 days? 4 weeks? 4 months?
13. When I think about migraine between attacks, I think:
How lucky I am to have my mom who’s never left my side. How grateful I am to marry a man who’s completely willing to carry the torch forward. He’s gone to great lengths to understand my disease and learn how to take good care of me. I couldn’t survive these attacks without their love and support.
14. When I tell someone I have migraine, the response is usually:
“Oh you poor thing. I hope you feel better soon.” Then they get anxious as to why I’m not feeling better as soon as they would like me to.
15. When someone tells me they have migraine, I think:
“There’s a 98% chance they have no idea what they’re talking about.”
16. When I see commercials about migraine treatments, I think:
“Been there. Tried that. Didn’t work. Next!”
17. My best coping tools are:
Distraction, aromatherapy, sleep.
18. I find comfort in:
My faith. It helps knowing I’m not alone even in my darkest hours. When I don’t have the strength to fight my own battles, I simply ask God to carry me through and He always does.
19. I get angry when people say:
“Oh I get migraines too! I take two excedrin and lay down with a cold compress for half an hour. Then I feel much better!”
20. I like it when people say:
“I’m here if you need anything” and mean it.
21. Something kind someone can do for me during a migraine attack is:
Text me. Please don’t call! Texting lets me know you’re thinking of me and you care enough to reach out without making me answer the phone.
22. The best thing(s) a doctor has ever said to me about migraine is:
I’m willing to fight on your side for as long as it takes. We’re gonna get you through this together.
23. The hardest thing to accept about having migraine is:
I am not in control.
24. Migraine has taught me:
To be flexible. To let go. To forgive myself the times I can’t get out of bed and make the most of the times I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
“There may be pain in the night but joy comes in the morning.”
26. If I could go back to the early days of my diagnosis, I would tell myself:
Know when to say enough is enough.
27. The people who support me most are:
My mom and my fiancé.
28. The thing I most wish people understood about migraine is:
I’m not ignoring your calls, texts, emails, etc. If I haven’t hung out with you in a while, it’s not because I don’t like you. It’s because I’m in pain beyond reasonable comprehension. Let me know you haven’t forgotten me and I will treasure our friendship all the days of my life!
29. Migraine and Headache Awareness Month is important to me because:
Migraineurs feel alone, abandoned, left behind when we can’t attend birthday parties, dinners, holidays, shopping trips, vacations. If everyone understood a little more about what it’s like to live in the dark, afraid of light and noise and smells, perhaps they’d be more gentle with those who suffer.
30. One more thing I’d like to say about life with migraine is:
It’s dark in here. It’s scary. It’s painful. It’s quiet. If a migraineur shares their story with you, please know that’s sacred. It’s means we trust you and probably love you. So thank you for listening.

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 rant?

This is a reader-submitted story.

1. My diagnosis is: Chronic migraine
2. My migraine attack frequency is: more than 15 days a month
3. I was diagnosed in: 2009, I think
4. My comorbid conditions include: not sure, maybe depression and anger (crankiness)
5. I take __0__ medications/supplements each day for prevention and _2___ medications/supplements to treat an acute attack
6. My first migraine attack was: as a child
7. My most disabling migraine symptoms are: pain and fatigue
8. My strangest migraine symptoms are: sore scalp (or I say sore hair)
9. My biggest migraine triggers are: lowering barometric pressure, stress, bright lights doing strange things
10. I know a migraine attack is coming on when: my head starts to hurt or my neck gets stiff, or my eyes don’t like all the stuff the lights are doing
11. The most frustrating part about having a migraine attack is: the aphasia, dizzyness, fatigue, sadness, frustration
12. During a migraine attack, I worry most about: the drugs not working or I’m taking too much
13. When I think about migraine between attacks, I think: I don’t have them and all is good
14. When I tell someone I have migraine, the response is usually: Oh I get those too.
15. When someone tells me they have migraine, I think: What drugs do you take that help you? Or how do you work having migraines
16. When I see commercials about migraine treatments, I think: What are the side effects?
17. My best coping tools are: taking the drugs at the right point
18. I find comfort in: Everybody has troubles, so do I. Maybe I can help them at some point.
19. I get angry when people say: The most angry I ever got was when I read an article about somebody with a hangover saying they told their boss they had a migraine and suggesting that other do that too.
20. I like it when people say: “it’s o.k. that the drugs cause aphasia. I’ll just wait until you blurt out what you are trying to say.” No one ever says that, because they don’t know about the aphasia part of the migraine or the drugs.
21. Something kind someone can do for me during a migraine attack is: Help me when I can’t remember words
22. The best thing(s) a doctor has ever said to me about migraine is: If chocolate is a trigger, eat it everyday, instead of just occasionally.
23. The hardest thing to accept about having migraine is: It doesn’t seem like my life will ever overcome them.
24. Migraine has taught me: Help others and be gentle, because you don’t really know how much pain people are in for whatever reasons.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Get up! Take the Axert! (instead of going back to sleep.)
26. If I could go back to the early days of my diagnosis, I would tell myself: Your need to see a headache specialist
27. The people who support me most are: My family
28. The thing I most wish people understood about migraine is: I gotta work and support my family even though I don’t have a chronic disease.
29. Migraine and Headache Awareness Month is important to me because: It’s a way to tell others about migraine as a chronic disease
30. One more thing I’d like to say about life with migraine is: There needs to be more research money for this disease. There are so many people who have it, a lot of them women and it’s debilitating if you don’t have the right drugs and general doctors don’t really treat it correctly, especially pediatricians.

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.