30 Things

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme. 

1. I have had chronic daily headache (CDH) for 38 years.
2. The first headache I remember is: that it came out of the blue while I was cleaning our new apartment. I was 28 years old and had never suffered from any kind of headaches before that.
3. After the headache started, my husband took me to the ER that night, and that was the first of many different times I was diagnosed.
4. My pain level fluctuates from mild to moderate to severe.
5. My typical pain level ranges from: 5 to horrific.
6. In addition to pain, my symptoms include: extreme tiredness, hyperactivity, irritability, stiff neck and shoulders, nausea, vomiting, cramps and diarrhea, vertigo, aphasia, AIWS, faintness, scintillating scotoma, imbalance, depression and anxiety, night terrors.
7. Treatments I have tried include: natural remedies, since I refuse to take the medications they prescribe, which rarely work and have terrible side effects and sometimes cause permanent neurological deficits. I have been offered opiates but don’t take them either because I am afraid of additions. I have had several CAT scans, MRI’s and MRA’s to rule out stroke or other neurological disease.
8. I use prayer and meditation and try to stay as positive as I can.
9. When the pain gets bad, I still do as much as I can, but rest when I have to.
10. The most frustrating part about having CDH is: Not being able to participate in normal life and losing friends because of it.
11. Because of CDH, I am prevented from being the person I was before I became disabled with migraine.
12. When I tell someone I have CDH, they don’t understand unless they also suffer from it.
13. When I see how little research and information exists on CDH, I wonder why there are so many awareness programs and funding programs for just about everything else BUT chronic migraine.
14. Having CDH has affected my entire life by taking away any hope for actually having one again.
15. Having CDH has affected by family life by: putting making my family sad.
16. The one word that best describes my experience with CDH is grief and hopelessness.
17. My best coping tools are: meditation and prayer.
18. I find comfort in my faith.
19. I get angry when people offer ridiculous remedies as if I haven’t tried everything in the book the last 30 plus years!
20. I like it when people say: I’m sorry you have to suffer like this; is there anything I can do to help?
21. Something kind someone has done for me in relation to CDH is to be patient with my limitations or wanted to be with me in spite of them.
22. The best thing a doctor has ever said to me about CDH is: “There is no cure for migraine; we aren’t even sure what causes it yet”. At least he was honest.
23. The hardest thing to accept about having CDH is that t has taken away my joy.
24. Having CDH has taught me just how strong and brave I can be.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is “Do the best you can and leave the rest to God.”
26. If I could go back to the early days of my diagnosis, there is nothing I could have done differently.
27. The people who support me most are: My husband and daughter.
28. The thing I most wish people understood is that chronic complicated migraine is not just a headache, but an intense neurological storm that is accompanied by an excruciating headache.
29. Migraine and Headache Awareness Month is important to me because I still hold out hope that someone will pay attention.
30. One more thing I’d like to say about CDH is to the people that don’t suffer from it: If someone you love suffers like this, please be kind, helpful and do everything you can to educate yourself and everyone else about the disease.

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