30 Things Meme

Associate Professor of English and Humanities

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 14 years.
2. The first headache I remember is: I went to New York City as a child, maybe 8 or 10 years old, and when I got home I had the worst headache ever. It kept me in bed all day.
3. After the headache started, it took 20 years to get a diagnosis.
4. My pain level fluctuates from none (very rarely) to very severe. It’s usually moderate, but it’s exhausting to teach even with a moderate headache.
5. My typical pain level ranges from: moderate-severe.
6. In addition to pain, my symptoms include: light sensitivity, sound sensitivity, depression, anxiety, exhaustion, insomnia, polyneuropathy (drop foot), and overweight (I can’t exercise). My medications have also caused gastritis, asthma, hair loss, and kidney stones (not including side effects of ones I went off).
7. Treatments I have tried include: all possible medications, including prednisone; Botox; yoga; biofeedback; acupuncture; hypnosis; six top headache specialists; two weeks as an inpatient at Michigan’s head pain hospital; Cefaly; and heat and ice. Yoga (for relaxation and special conditions) has helped most.
8. I take 8 medications/supplements each day for prevention and 0-1 medications/supplements when the pain becomes unbearable. Nothing helps the pain except maybe ice and rest.
9. When the pain gets bad, I lie down with ice or heat on my head.
10. The most frustrating part about having CDH is having to work/teach with a terrible migraine, and no one can tell I’m unwell.
11. Because of CDH, I worry about getting headaches, not working as well as I would like, missing numerous events, and not worrying family.
12. When I tell someone I have CDH, the response is usually: How can you teach with a migraine?
13. When I see how little research and information exists on CDH, I feel: I have to give money and I wish I could help advocate.
14. Having CDH has affected my work/school life by severely reducing my production in terms of publishing and destroyed my dream, encouraged by my advisor, of being a great scholar at a research university.
15. Having CDH has affected by family life: my mother worries all the time, too much, and my husband has depression and panic attacks. I have to cancel plans often.
16. The one word that best describes my experience with CDH is: pain.
17. My best coping tools are: not giving in to headaches, as my psychotherapist used to caution repeatedly. He said it is not the headaches you will remember, but the work you accomplish despite them.
18. I find comfort in: my pet rabbit, stuffed animals, my students, movies, and my husband.
19. I get angry when people say: just take an aspirin.
20. I like it when people say: it must be really hard for you.
21. Something kind someone has done for me in relation to CDH is: it’s not your fault.
22. The best thing a doctor has ever said to me about CDH is: don’t let your headaches take over; do as much as you can in spite of them. And don’t get upset or angry when you can’t get up, because it will only make it worse.
23. The hardest thing to accept about having CDH is: why me? And that I didn’t do anything wrong.
24. Having CDH has taught me: to be kinder in general, especially to my students who have chronic pain.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Iyengar yoga (OM).
26. If I could go back to the early days of my diagnosis, I would tell myself: taking one preventative pill is no big deal…just wait until you’re taking 8.
27. The people who support me most are: my husband.
28. The thing I most wish people understood about CDH is: one can work and act normal even when one is in severe pain. And I don’t miss events other than teaching just because I’m lazy.
29. Migraine and Headache Awareness Month is important to me because: I like reading the blogs of other sufferers.
30. One more thing I’d like to say about living with CDH is: I want to reach out to others, especially students.

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.

30 Things Meme

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: 2-3 a week
3. I was diagnosed in: 1997 or 1998
4. My comorbid conditions include: depression/anxiety
5. I take _2_ medications/supplements each day for prevention and _3 medications/supplements to treat an acute attack
6. My first migraine attack was: first I vividly remember was 1994, but may have had one before that
7. My most disabling migraine symptoms are: light sensitivity/nauseaa
8. My strangest migraine symptoms are: increased smell sensitivity, strange cravings for spicy food
9. My biggest migraine triggers are: sleep deprivation, skipping meals, weather changes
10. I know a migraine attack is coming on when:I get a pain behind my right eye
11. The most frustrating part about having a migraine attack is: I have to just “drop out” of life
12. During a migraine attack, I worry most about: having a brain tumor
13. When I think about migraine between attacks, I think: how tired I am of always having to tell my husband I have another one
14. When I tell someone I have migraine, the response is usually: So, you have a headache, whatev…
15. When someone tells me they have migraine, I think: You have my sympathy…let’s talk drugs-what works for you (in the hopes that they might have a treatment I haven’t tried yet)
16. When I see commercials about migraine treatments, I think: Damn, already tried that…
17. My best coping tools are: Netflix (sometimes), drugs (for about 30 mins.), box fan
18. I find comfort in: Knowing there are a lot of us-there is research being done, and (sorry it is selfish) knowing others have it worse.
19. I get angry when people say: I recently found out my daughters talked between themselves about how I was exaggerating.
20. I like it when people say: I’m just happy when I don’t get questioned about it. Like if I say I have to go home or can’t come in or whatever, and they just say, ok, hope you feel better.
21. Something kind someone can do for me during a migraine attack is: don’t open the bedroom door-it makes the dogs bark-keep it dark and quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: just naming it and beginning to prescribe “real” meds for it.
23. The hardest thing to accept about having migraine is: that I know I’m going to have another one…
24. Migraine has taught me: my ex-husband was an asshole. My second husband is a saint.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “It’s not a tumor” from Kindergarten Cop
26. If I could go back to the early days of my diagnosis, I would tell myself: Take your rescue meds earlier-it’s not going to go away.
27. The people who support me most are: My husband-he mostly leaves me alone and lets me rest-but checks on me every couple of hours or so to see if I need anything. He never complains, even though it has got to frustrate him to have to deal with me having headaches so often.
28. The thing I most wish people understood about migraine is: it’s not “just a headache!!!!!”
29. Migraine and Headache Awareness Month is important to me because: I want people to realize what we are dealing with and I want them to figure out how to “cure” us…
30. One more thing I’d like to say about life with migraine is: Thank god we don’t have to keep ice picks in the house anymore–I’d have already used it to stab myself in the eye by now. Sorry I didn’t put some inspirational quote, but this crap is miserable.

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.

30 Things Meme

30 Things About Your Life With Migraine

This is a reader-submitted story.

1. chronic migraine
2. 10 a month (thanks to botox)
3. when I was 12
4. depression, anxiety, nerve pain
5. 3 supplements, 1 medication prevention and 1 medication for an attack
6. scary
7. dizziness, tunnel vision, blindness, fatigue, confusion
8. smelling things that aren’t there
9. weather, alcohol
10. I yawn excessively or feel super hyper.
11. The unbearable pain
12. Making it through the day
13. I hope I have enough medication to get me through the month
14. “I’m sorry. You should try…”
15. I’m so sorry ☹
16. Pppht – that is NOT anything like a real migraine
17. Medication & coca-cola during/French fries for nausea. Friends for support
18. The migraine community. Friends. Dogs
19. Oh, I get headaches too.
20. I get migraines, too. I don’t know how you can handle so many in a month.
21. Anything kind is always appreciated
22. Still looking for a good neurologist – most of the time, I have to educate them.
23. That there’s no cure – I could have them for the rest of my life.
24. My limitations
25. Just for today, I can do something for 12 hours that would appall me if I felt I had to keep it up for a lifetime
26. I wouldn’t want to tell my 12 year old self that she was in for a lifetime of pain.
27. Friends and my mom.
28. It’s like pouring water on a circuit board – my whole brain just fizzles out – the pain is just one part.
29. We need more $$ for research!!!!
30. It’s harder than you can imagine. I am affected with crippling exhaustion and scrambled brain the day before and the day after the attack – so take the 10 days a month of actual pain days and triple it to get the real number of sucky days a month.

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.