Sidney’s 30 Things About Living with Chronic Migraines

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 4 years.
2. The first headache I remember is: I started having migraines so early that I can’t remember the first instance. The first painful migraine I can remember happened in 8th grade gym class. We were running laps in the heat and my P.E. teacher was pushing me too hard.
3. After the headache started, it took 2 1/2 years to find a Headache Specialist that could actually help me.
4. My pain level fluctuates.
5. My typical pain level ranges from: 2-3/10; 1 being minor pain and 10 being agony.
6. In addition to pain, my symptoms include: sensitivity to light and sound, nausea, insomnia, hot/cold flashes (I’m 17), exhaustion, body aches, and fluctuating (decreased lately) appetite. That’s all I can think of off the top of my head.
7. Treatments I have tried include: Botox, Topomax, several different triptans, physical therapy, accupuncture, reiki, essential oils, massage therapy, yoga, aquatic therapy, osteopathy etc, etc. You name it, I’ve probably tried it.
8. I take 4 medications/supplements each day for prevention and 5 medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: shut down, before eliminating sensitivies such as light and sound.
10. The most frustrating part about having CDH is: trying to keep it from holding me back from living my life.
11. Because of CDH, I have developed general anxiety disorder, so I really don’t need a reason to worry about something.
12. When I tell someone I have CDH, the response is usually: sympathetic even though they could never understand. Most everyone knows someone who suffers from migraines, but very few people know someone who suffers from chronic migraines.
13. When I see how little research and information exists on CDH, I feel: angry. It is now in the top 20 on the CDC’s list for most rising disabilities worldwide.
14. Having CDH has affected my work/school life by: keeping me behind. I don’t know how many credits I’ll receive this semester and I don’t even know if I’ll be able to finish High School.
15. Having CDH has affected by family life by: making things strained. My parents are always disappointed when I can’t go to school and they wish I could do more around the house.
16. The one word that best describes my experience with CDH is: trying.
17. My best coping tools are: being able to talk to my psychologist who also experiences chronic pain.
18. I find comfort in: many different things and people. Books and electric heating pads are always great, but my Mom is my biggest support.
19. I get angry when people say: “it’s just a headache.” If it were just a f*cking headache, I wouldn’t have so many other problems would I, assh*le!
20. I like it when people say: I understand what you’re going through.
21. Something kind someone has done for me in relation to CDH is: give me a microwavable hot pack for my neck in spite of the fact that they also really needed it for their menstrual cramps. I went home and promptly sent a SUPER grateful thank you card and subsequently won the love of my best friend’s mom.
22. The best thing a doctor has ever said to me about CDH is: “I know how to help you.” Hallelujah!
23. The hardest thing to accept about having CDH is: it may never go away and that I have to learn to live with it for the foreseeable future.
24. Having CDH has taught me: many lessons that would take forever to explain.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “What doesn’t kill you makes you stronger.”
26. If I could go back to the early days of my diagnosis, I would tell myself: do the best I can to help myself, be patient, and have hope.
27. The people who support me most are: my parents and psychologist.
28. The thing I most wish people understood about CDH is: you really can’t TRULY understand until you’ve lived it for at least a year.
29. Migraine and Headache Awareness Month is important to me because: people don’t seem to be aware what a huge problem it is. I’m also hopeful it would help raise funding for research.
30. One more thing I’d like to say about living with CDH is: it’s not “in your head.” It’s an actual diagnosis with real symptoms that can be measured.

Reader-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.