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My life with Chronic Daily Headache

This is a reader-submitted post.

1. I have had chronic daily headache (CDH) for _17___ years.
2. The first headache I remember is: from a concussion when I was 8, but I believe migraine started when I was 6.
3. After the headache started, it took ___1 year from the time they became daily___ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates Fluctuates
5. My typical pain level ranges from: 5-7
6. In addition to pain, my symptoms include: photophobia, neck pain, nausea, tooth pain
7. Treatments I have tried include: Way too many to list (75+ preventative, abortive, and alternative treatments)
8. I take _5___ medications/supplements each day for prevention and __2__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: try to lay down with an ice pack when possible.
10. The most frustrating part about having CDH is: the unpredictability of when the pain will be severe and when it will be tolerable.
11. Because of CDH, I worry about: being able to get things done that have to be done and not letting others down.
12. When I tell someone I have CDH, the response is usually: disbelief that I can have a headache EVERY day.
13. When I see how little research and information exists on CDH, I feel: frustrated that not more is being done to find treatments for such a debilitating disorder.
14. Having CDH has affected my work/school life by: not allowing me to do everything that I want to with my students.
15. Having CDH has affected by family life by: not being able to attend all family functions
16. The one word that best describes my experience with CDH is: all-encompassing (no single part of my life has not been touched and affected by CDH.)
17. My best coping tools are: acceptance of the situation
18. I find comfort in: music and time alone
19. I get angry when people say: Oh, I get headaches all the time, too. After a couple of Tylenol I’m good to go.
20. I like it when people say: Let me do it. You rest.
21. Something kind someone has done for me in relation to CDH is: treated me with respect and kindness
22. The best thing a doctor has ever said to me about CDH is: We will do this together.
23. The hardest thing to accept about having CDH is: Knowing when I have to say no and slow down to take care of myself.
24. Having CDH has taught me: self-reliance and resilience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Don’t think of all the misery, but of all the beauty that remains. – Anne Frank
26. If I could go back to the early days of my diagnosis, I would tell myself: It is okay and necessary to grieve for all I have lost, but to also rejoice and celebrate all that you can accomplish that you didn’t know was possible.
27. The people who support me most are: family
28. The thing I most wish people understood about CDH is: I can’t control how I feel.
29. Migraine and Headache Awareness Month is important to me because: more people need to know the scope disability caused by migraine and other headache disorders.
30. One more thing I’d like to say about living with CDH is: Everyone’s experience with CDH is different. Respect each individual’s story as their truth.

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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Clarissa’s 30 Things about CDH

This is a reader-submitted post.

1. I have had chronic daily headache (CDH) for the past 2 years and episodic migraines for at least 8 years.
2. The first headache I remember was either freshman or sophomore year in high school. I remember having the worst headache of my life, one that lasted all day.
3. After the headache started, it took 1-2 years to get a diagnosis. Technically, I spent at least a year struggling with the pain, not realizing that there was anything doctors could do for me. I figured it was kind of normal, once I realized that what I was going through was not normal I went to my PCP and spent at least a year trying to convince them that the migraines were real.
4. My pain level fluctuates from day to day, and even during a migraine.
5. My typical pain level ranges: Well lately, because the Botox seems to be working, I’m averaging about a 2-4 daily pain, and 6 or more only a couple times a week.
6. In addition to pain, my symptoms include: Cognitive dysfunction (“brain fog”- I’m unable to focus; it can be difficult to carry on a conversation, and confusion.) I also experience weakness, neck pain, tingling sensations in my arms and legs, and in the last year the aura and vision changes have increased to almost every migraine attack.
7. Treatments I have tried include: massage therapy, acupuncture, physical therapy on my neck and back, and a very long list of supplements and prescription medications (too long to write out)
8. I take 5 medications/supplements each day for prevention and 2 medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I first take my abortive medications, then try to rest (though this can be very difficult when my head feels like it will explode).
10. The most frustrating part about having CDH is: how much control the migraines have over me and those that are closest to me.
11. Because of CDH, I worry about: everything!!! I worry about losing my job because of absences, I worry about disappointing people (even though I know that my family and friends are very understanding). I worry about making mistakes when I’m not thinking clearly. I worry about taking the risk of driving while in pain and getting into an accident (I’ve been taking a lot more precautions to avoid driving when I’m feeling even a little bit bad). I worry about this being a lifetime struggle. I could go on and on…
12. When I tell someone I have CDH, the response is usually either “I know someone who has/had migraines, have you tried…?” or “I get bad headaches too!”
13. When I see how little research and information exists on CDH, I feel: disappointed, with so many people that CDH affects you would think that there would be more of an emphasis put on researching this illness.
14. Having CDH has affected my work/school life by: forcing me to take a break from school, which I thought would only last a few months, but it’s been a year now and I’m still not sure when I’m going to be able to start again. With work, CDH has almost caused me to lose my job. Once my boss approached me and tried to convince me to switch to a part time employee (their way of being able to fire me eventually) I asked my doctor for FMLA paperwork to protect my job.
15. Having CDH has affected by family life by: switching up our roles at home. I went from being the one who cooks, cleans and keeps track of everything to being the one who needed taking care of. Luckily I have a partner who has been very supportive and is willing to pick up the slack.
16. The one word that best describes my experience with CDH is: Roller coaster.
17. My best coping tools are: crying (sometimes a good cry will help! It might not fix the pain and can actually make it worse, but it helps me get my frustrations out in the open) I’ve also found that being outdoors, just sitting or an easy walk can really help me get out of the emotional funk that I sometimes find myself in when I’ve been dealing with a string of migraines.
18. I find comfort in: reading other people’s experiences and stories. It reminds me that even though I don’t personally know anyone who has CDH, I am not alone.
19. I get angry when people say: “It’s probably just stress.” First of all, how could anyone eliminate all the stress in their life? People don’t realize that we can’t control this pain, we can try to treat it, but even that isn’t always successful. Second, stress might be a factor, but there are a lot of other triggers that can be blamed too. I read something online once called “The 3 C’s: ‘I didn’t cause it, I can’t control it, and I can’t cure it.’” It reminds me to not blame myself for this.
20. I like it when people say: I’m here for you. I don’t need anything else but understanding and someone who will let me vent about my migraines without getting after me about not taking care of myself or trying to “fix me” or telling me a story about how they get “migraines” when they drink or stay up too late.
21. Something kind someone has done for me in relation to CDH was: When my boyfriend’s mother found out that I was having a hard time, she brought groceries, and helped clean my house while I was gone. Not a lot of people realize how much this disrupts your daily life. In the midst of a migraine, no one is doing their chores, laundry and dishes pile up, and the house begins to look like a disaster.
22. The best thing a doctor has ever said to me about CDH is: Not to get discouraged, even though we’ve tried what seems like a million different treatments, he said we still have a long list of things to try.
23. The hardest thing to accept about having CDH is: not being able to do all of the things that I used to be able to do. I have always been a very motivated person, always on the go, and I’ve had to give up some of that “go get ‘em” attitude, just because I’m so exhausted or physically unable to even get out of bed.
24. Having CDH has taught me: That I am stronger than I give myself credit for. It has also taught me compassion for others. You never know what battles people are fighting, just because you can’t see anything wrong with someone doesn’t mean that they aren’t struggling.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “Everyday courage has few witnesses. But yours is no less noble because no drum beats for you and no crowds shout your name.” ~Robert Louis Stevenson
26. If I could go back to the early days of my diagnosis, I would tell myself: to stand up for yourself! Especially when I was being told that there was nothing wrong with me by my PCP, I mean, eventually I went and sought a second opinion but I should have right off the bat.
27. The people who support me most are: My immediate family. They are the ones who believe me, the ones who support me and even though they don’t understand what it is really like, they understand that I’m struggling and that is enough.
28. The thing I most wish people understood about CDH is: that this is more serious than just a headache. We’re not only struggling with pain on a daily basis, but are dealing with so many side effects that come along with trying to treat this illness.
29. Migraine and Headache Awareness Month is important to me because: it is our opportunity to bring this invisible illness out into the open, to educate people, to push for research to hopefully one day find a cure.
30. One more thing I’d like to say about living with CDH is: Even though it has taken a lot away from me, it has given me one really important thing: strength. I am stronger than I have ever believed and I have the courage to face this every day.

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.