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30 things about Dave’s headache

This is a reader-submitted story. 

My diagnosis is: Migraine with aura.
2. My migraine attack frequency is: varies from 2 a month to 15 a month.
3. I was diagnosed in: 1952
4. My comorbid conditions include: tiredness
5. I take _no___ medications/supplements each day for prevention and _no___ medications/supplements to treat an acute attack
6. My first migraine attack was: in the winter of 1952
7. My most disabling migraine symptoms are: losing vision
8. My strangest migraine symptoms are: losing vision since it doesn’t happen often
9. My biggest migraine triggers are: sometimes stress, but that’s a toughie to figure out
10. I know a migraine attack is coming on when: when the dark spot occurs
11. The most frustrating part about having a migraine attack is: the time it takes to get over it
12. During a migraine attack, I worry most about: nothing. I can stop them.
13. When I think about migraine between attacks, I think: I hope I don’t get another one.
14. When I tell someone I have migraine, the response is usually: Go take care of it.
15. When someone tells me they have migraine, I think: I wonder what kind it is.
16. When I see commercials about migraine treatments, I think: Poor folks have to take them.
17. My best coping tools are: My own technique. Never get headaches anymore.
18. I find comfort in: that I know I’ll never have migraine pain again.
19. I get angry when people say: Take aspirin or Tylenol. If those stop a migraine–it’s a mild one
20. I like it when people say: You’re lucky you can avoid the pain.
21. Something kind someone can do for me during a migraine attack is: let me take 30 minutes to get rid of it.
22. The best thing(s) a doctor has ever said to me about migraine is: nothing we can do (years ago)
23. The hardest thing to accept about having migraine is: People don’t realize how bad they are if they’ve never had one.
24. Migraine has taught me: how to stop them. I am very fortunate.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Don’t have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: You can stop these.
27. The people who support me most are: My wife and other migraineurs.
28. The thing I most wish people understood about migraine is: MWA can be stopped.
29. Migraine and Headache Awareness Month is important to me because: I love to read about it…more written then.
30. One more thing I’d like to say about life with migraine is: It was bad before I learned to stop them.

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 Anna’s (sometimes) Amazing Life With Migraine

This is a reader-submitted story. 

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 10-15 attacks per month
3. I was diagnosed in: 2012
4. My comorbid conditions include: IBS, Depression
5. I take __9_ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: at the onset of chronic migraine! 3 years ago (ish)
7. My most disabling migraine symptoms are: Muscle burn, fatigue, and nausea
8. My strangest migraine symptoms are: Word discombobulation
9. My biggest migraine triggers are: Lack of sleep, loud noise, perfume
10. I know a migraine attack is coming on when: My neck starts to hurt and I have a sudden drop in energy.
11. The most frustrating part about having a migraine attack is: having to push through the pain at work knowing that by doing so, the pain is progressing more aggressively.
12. During a migraine attack, I worry most about: being a burden; losing my old ways.
13. When I think about migraine between attacks, I think: what a limiting beast.
14. When I tell someone I have migraine, the response is usually: oh, me too. But not as bad as you… I can’t imagine that.
15. When someone tells me they have migraine, I think: I’m sorry to hear that. Why do so many of us deal with this pain yet it’s overlooked in medical training and research?
16. When I see commercials about migraine treatments, I think: wow, nice make-up, tall white female model. I do not look at all like that when I’m in pain (or ever)!
17. My best coping tools are: food, water, rest, relaxation techniques, and writing.
18. I find comfort in: sweets and good books.
19. I get angry when people say: must be nice to have time off! (It’s sick leave actually, not “time off”)
20. I like it when people say: what can I do to help?
21. Something kind someone can do for me during a migraine attack is: bring me ice, and tea, and then let me be.
22. The best thing(s) a doctor has ever said to me about migraine is: this is a real, disabling condition, and we are going to work with you until your pain has been reduced by at least 50%.
23. The hardest thing to accept about having migraine is: not being able to teach music anymore.
24. Migraine has taught me: to value my abilities, however small, and cherish the people I love, giving to them however I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
26. If I could go back to the early days of my diagnosis, I would tell myself:
27. The people who support me most are: my family, my partner.
28. The thing I most wish people understood about migraine is: it is disabling for many. If you have had a migraine, that doesn’t mean you understand how others experience it.
29. Migraine and Headache Awareness Month is important to me because: people are generally unaware, yet know someone whose life is seriously affected by a migraine and headache disorder. We need to do better in so many ways to support sufferers.
30. One more thing I’d like to say about life with migraine is: a good life with chronic migraine can be had. By re-adjusting my definition of success, and reaching out to others, I have found ways to re-create meaning in my life.

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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24/7 Migraines

This is a reader-submitted story. 

Let me begin by telling you that my NDPH are Migraines. I toiled with which section I should be completing. I chose this section so that you would know that it is possible to have a migraine everyday of your life. I have been told that this is very rare but it dose happen. So, this is “my story.”

1. I have had NDPH for _5___ years.
2. It started after: (Or just when it started if you didn’t have a precipitating event) I suffered with sporadic migraines for approx.30 years. On April 4th 2010 I woke up with a beast of a migraine that never went away.
3. After the headache started, it took _years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates: Fluctuates slightly
5. My typical pain level ranges from: 8 to 10
6. In addition to pain, my symptoms include: Sensitivity to light, sound, smell and heat
7. Treatments I have tried include: close to a hundred medications, a check for a PFO, 3 day hospital stay for timed injections of DHE, A TENS Unit, numerous nerve blocks with and without Radio Frequency, a Cefaly unit ($450 out of pocket) and Botox.
8. I take __0__ medications/supplements each day for prevention ( because I have tried everything they can think, including medications not intended for migraine prevention, ie. For Alzheimer’s, seizures etc.) and __2__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: which is all the time, I take Dilaudid 8 mg.
10. The most frustrating part about having NDPH is: I have no life. I only leave the house to go to the doctor. I can’t plan anything because I don’t know if the pain will only be an 8 and maybe a Dilaudid and 2 Tylenol will allow me to shower and dry my hair.
11. Because of NDPH, I worry about: reaching my mental and emotional limit and hurting myself to worry and take my mind off the pain.m
12. When I tell someone I have NDPH, the response is usually: come on, it’s only a headache.
13. When I see how little research and information exists on NDPH, I feel: Hopeless
14. Having NDPH has affected my work/school life by: not allowing me to do anything. If I do go out or have someone over, the extra external stimuli makes the following days a 10 on the pain scale. I had to medically retire only 5 years from full retirement (and over triple the wage).
15. Having NDPH has affected by family life by: relying on my husband for everything and I do mean everything. He even has to drive me to all my Dr appts. because I am afraid to drive because of my pain medication. Not only that, I cannot provide him any pleasure or excitement or even companionship.
16. The one word that best describes my experience with NDPH is: Loneliness.
17. My best coping tools are: my psychiatrist, antidepressents and sleep.
18. I find comfort in: seclusion
19. I get angry when people say: Take a couple Tylenol and get over it.
20. I like it when people say: I am so sorry. I don’t know you do it.
21. Something kind someone has done for me in relation to NDPH is: A friend drove 30 miles one way to have lunch with me after a Dr. appt When I am up and showered, teeth brushed and dressed (and she plans to do it again in a few weeks after another Dr. appt.)
22. The best thing a doctor has ever said to me about NDPH is: “Never give up hope.”
23. The hardest thing to accept about having NDPH is: having no life
24. Having NDPH has taught me: to know that even with my pain, there are others worse off than I.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: God never gives you more than you can handle.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Keep your chin up.”
27. The people who support me most are: my husband, parents and best friend.
28. The thing I most wish people understood about NDPH is: it can be a living hell.
29. Migraine and Headache Awareness Month is important to me because: it draws attention to some of the things I am going through.
30. One more thing I’d like to say about living with NDPH is: Crying only makes it hurt worse.

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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Migraines Suck

This is a reader-submitted story.

1. My diagnosis is: chronic daily migraines
2. My migraine attack frequency is: daily
3. I was diagnosed in: high school
4. My comorbid conditions include: none
5. I take triptans ___ medications/supplements each day for prevention and __abortives__ medications/supplements to treat an acute attack
6. My first migraine attack was: high school
7. My most disabling migraine symptoms are: eye pressure
8. My strangest migraine symptoms are:
9. My biggest migraine triggers are: fluorescent lights
10. I know a migraine attack is coming on when: eye pressure
11. The most frustrating part about having a migraine attack is: nothing helps
12. During a migraine attack, I worry most about: the length of attach
13. When I think about migraine between attacks, I think: it needs to end
14. When I tell someone I have migraine, the response is usually: I feel for you
15. When someone tells me they have migraine, I think: depends on the person
16. When I see commercials about migraine treatments, I think: interesting
17. My best coping tools are: darkness and rest
18. I find comfort in:my room
19. I get angry when people say: it’s just another headache
20. I like it when people say: do u need anything
21. Something kind someone can do for me during a migraine attack is: let me rest
22. The best thing(s) a doctor has ever said to me about migraine is: we will keep trying till we find something that helps you manage these migraines
23. The hardest thing to accept about having migraine is: I was denied fmla
24. Migraine has taught me: patience
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I can do all things through Christ who strengthens me
26. If I could go back to the early days of my diagnosis, I would tell myself: do more research
27. The people who support me most are: my family
28. The thing I most wish people understood about migraine is: it’s not a headache
29. Migraine and Headache Awareness Month is important to me because:brings more attention to what we are going thru
30. One more thing I’d like to say about life with migraine is: it can be debilitating and stressful to all.

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.