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30 Things About My Life With Chronic Daily Headache

This is a reader-submitted story.

1. I have had Chronic Daily Headache (CDH) for: About 7 years. I believe my headaches became chronic about 20 years ago, but they did not occur on a daily basis until approximately the past 7 years.

2. The first headache I remember is: Maybe when I was around 7 or 8 years old while our family was undergoing a lot of stress. I was also seeing some kind of spots and lights that were moving around in my dark room while I was trying to sleep at night. I mentioned them for a long time to my family before I was taken to a doctor. They thought I was just trying to get out of going to school. When I was finally taken to a doctor, I remember him saying he had no idea what they were and that “there were no signs of a brain tumor”. After the brain tumor comment, I never mentioned the headaches again to my family. Either they eventually went away or I just got used to them.

3. After the headache(s) started becoming chronic: It took about 20 years to get a diagnosis. Because I had a lot of pain in the sinus areas of my face, it was thought that I had a lot of sinus infections. But the antibiotics never cleared up the symptoms. Finally my doctor would order a CT scan of my sinuses and they were always clear. This cycle repeated about 3 times over at least 15 years.

4. My pain level fluctuates: It is always there, but fluctuates depending on the types of triggers I’m dealing with at the moment.

5. My typical pain level ranges from: Anywhere from 5 – 8 based on a pain scale of 1 – 10.

6. In addition to pain, my symptoms include: Dizziness, nausea, appetite loss, cognitive dysfunction, talking too much and/or too fast, feeling cold or hot, light sensitivity, sound sensitivity, nasal congestion, difficulty concentrating, difficulty sleeping, and more.

7. Treatments I have tried include: I have tried medications from several different classes, separately and combined with each other. My current and last doctor have both emphasized preventive medications rather than abortive or rescue. I do have a triptan that I can take up to 2 days per week if I get a migraine attack but since I have daily pain it can be hard to know when to take it. I am now using the Cefaly, getting Botox injections, and trying different preventive medications. I also have access to a prescription for a type of ergot medication that I can take one week/month if I am stuck in a bad cycle. I have had acupuncture treatments, been to a chiropractor, tried massage, physical therapy have tried natural supplements, and more.

8. I take 5 medications each day for prevention and can take one or more of 3 different medications when the pain becomes unbearable. I also use the Cefaly device for to reduce the frequency and intensity of the headache pain.

9. When the pain gets bad, I: Normally stay in the house and usually just rest or do some light stretching or housework. Sometimes I have something planned and I do my best to get out and go wherever I need to. I usually wear a heat patch on my back or near my neck to loosen up tight muscles every day. Sometimes I find it necessary to retreat to a dark, quiet room where there is little to no stimulation in order to quiet my brain, which gets overstimulated.

10. The most frustrating part about having CDH is: Feeling like I have let down my family by not being able to participate in things with them. I especially feel guilty about my daughter seeing me in bad shape. I want her to know that I want to be there for her in every way possible, but I can’t always do that and it hurts me because I don’t want her to feel rejected by me. But she is a toddler and can get loud and very active.

11. Because of CDH, I worry about: Mainly the same as #10. I don’t want my 2 year old daughter to think I don’t love and care for her just because I can’t be with her as much as I would like.

12. When I tell someone I have CDH, the response is usually: I only tell people that I feel may need to know. I have a problem with running late to activities because of the pain and some of my medications slow me down. My muscles are also quite deconditioned because of all the resting I have done. I get sidetracked easily too. So I don’t tell everyone, just those that may be affected by my behavior.

13. When I see how little research and information exists on CDH, I feel: Frustrated. I have been around the online migraine community since I was diagnosed and I know some progress has been made, but it’s discouraging to see so little change.

14. Having CDH has affected my work/school life by: Well, my situation is not so clear cut. My husband and I adopted a baby girl in 2013 and I took a leave of absence from my job at that time but I haven’t been able to return since other than to work on part time projects when I have time. In addition, the nature of my former job requires travel, which is difficult while our child is so young. In addition, our child has been sick so often that I think it would be difficult to keep any job since I have had to keep her at home a lot during the fall and winter months. She was hospitalized twice last winter. Now I’m exhausted from dealing with my migraines and my daughter’s health and need to spend some time focusing on getting myself better. However, I would love a part time job.

15. Having CDH has affected my family life by: Making it difficult or impossible to participate in certain activities with my husband and daughter. For example, my husband enjoys eating out in the evenings but I’m just too tired at time of day.

16. The one word that best describes my experience with CDH is: Demoralizing. I have had so many local doctors insinuate that my case is hopeless and there are days when I feel so angry.

17. My best coping tools are: Reading about the experiences of others with similar conditions and continuing to educate myself about this disease. I’m currently working on just simply accepting where I am right now and letting go of trying to fix myself. I am also taking private lessons on the Pilates Reformer to help strengthen certain muscles.

18. I find comfort in: My sweet cat, who always seems to know when I need him. He often sits on my lap when I need comfort.

19. I get angry when people say: Would you have still adopted your daughter if you knew your migraines would become worse afterwards? There is just no way to answer that question. Sure it’s hard, but we manage. She is a very caring little girl now that I’m so proud of. She gives the best hugs. Sometimes when I’m resting she will come up to me and pat me gently on my shoulder or back. She may also want to sit on my lap if I’m sitting down.

20. I like it when people say: Any kind of validation that what I’m going through is real and not made up is good. I don’t want to be treated differently than anyone else.

21. Something kind some has done for me in relation to CDH is: My husband has allowed me to rest while caring for our daughter in the evenings when I’m worn out. He also supports me in doing things to improve my health.

22. The best thing a doctor has ever said to me about CDH is: Anything kind and validating.

23. The hardest thing to accept about having CDH is: This isn’t a disease that will just improve on its own. I must actively work on managing my pain on a daily basis possibly for the rest of my life.

24. Having CDH has taught me: That I can’t just push myself hard and expect my body to do what I want it to do anymore. I used to do that all the time when I worked full time, but may not ever be able to do that again.

25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. For we fix our attention, not on things that are seen, but on things that are unseen.” 2 Corinthians 4:16-18

26. If I could go back to the early days of my diagnosis, I would tell myself: Because I’m not so fond of surprises, I would warn myself to be patient because it may take going to a lot of doctors and trying a lot of treatments before I make any forward progress.

27. The people who support me most are: My husband and daughter. I have a few friends in the migraine community that have been very kind too.

28. The thing I most wish people understood about CDH is: I didn’t bring it on myself and it is a real disease.

29. Migraine and Headache Awareness Month is important to me because: Yes, it’s important. However, there is a difference between people who are open to learning about migraine disease and those that are not open or interested. It’s important to know the difference because to continue trying to educate someone with this type of attitude would be a waste of time and energy. Some people think migraineurs are just drug seekers or people trying to get out of some responsibility. In my experience, the migraineurs I know feel very bad when they have to miss something important due to a migraine. They very much dislike the disabling effects of this disease.

30. One more thing I’d like to say about living with CDH is: There are not enough doctors trained in diagnosing and treating the various types of migraine disorders that exist. CDH is only one type. I have also been diagnosed with Vestibular Migraine and I haven’t found a doctor that knows how to treat this type of headache disorder.

MHAMgiveawayReader-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.

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