Tag: chronic daily headache

30 Things Meme

Brianna’s 30 things about chronic daily headache

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This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for __16__ years.
2. The first headache I remember is: I was younger than age ten.
3. After the headache started, it took __11 years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates. Level fluctuates, but the pain is always there.
5. My typical pain level ranges from: 3-8
6. In addition to pain, my symptoms include: photosensitivity, phonosensitivity, nausea, racing heartbeat, dilated pupils, insomnia.
7. Treatments I have tried include: massage, chiropractic, homotherapy, many different medications both over the counter and prescription.
8. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: go to bed, dark room, take meds, try and sleep.
10. The most frustrating part about having CDH is: not knowing if it will be a good or bad day.
11. Because of CDH, I worry about: disappointing those I love.
12. When I tell someone I have CDH, the response is usually: how do you do it?
13. When I see how little research and information exists on CDH, I feel: frustrated and sad.
14. Having CDH has affected my work/school life by: I have had to cut back my work schedule severely.
15. Having CDH has affected by family life by: My husband has had to take over and help with the daily household chores.
16. The one word that best describes my experience with CDH is: altering
17. My best coping tools are: encouragement from family and friends.
18. I find comfort in: fuzzy blankets and soft pillows!
19. I get angry when people say: not really angry, but sad: “I had a headache yesterday, not as bad as yours…” As if they diminish their own pain by comparing it with mine, when pain is such a subjective and personal thing.
20. I like it when people say: I know this is difficult for you, but I’m really happy to see you here anyway.
21. Something kind someone has done for me in relation to CDH is: my best friend is in the process of helping me put together a migraine coping kit, for when I’m not at home and it gets bad.
22. The best thing a doctor has ever said to me about CDH is: you’re not a lost cause, and we can help you feel better.
23. The hardest thing to accept about having CDH is: there is no cure right now, no medications that consistently help.
24. Having CDH has taught me: patience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Isaiah 33:24 – “and no resident will say “i am sick.”
26. If I could go back to the early days of my diagnosis, I would tell myself: this isn’t your fault, and hang in there.
27. The people who support me most are: My husband, my parents, and a few close friends.
28. The thing I most wish people understood about CDH is: it is always there, if I look okay it is because I have my “everything’s fine” mask on.
29. Migraine and Headache Awareness Month is important to me because: if awareness is increased, perhaps we can get more effective management tools.
30. One more thing I’d like to say about living with CDH is: I’m working on dealing with the unreasonable guilt I feel when I have to say no. I want to make everyone happy, but I can’t do that, and take care of myself at the same time. Also, I’m trying to give myself permission to make my health a priority.

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.

30 Things Meme

30 Things About My Life With Chronic Daily Headache

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This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 5 years.
2. The first headache I remember is: I was nine years old, and it was around Christmastime. My third grade teacher was making gingerbread men ornaments for us to take home, and the smell of the spices was so strong it triggered my very first migraine.
3. After my first headache, it took 5 years to get a diagnosis of migraine headache. At that point, I began taking daily preventatives. My migraines were episodic at the time; they transformed into chronic daily type in 2011.
4. My pain level fluctuates.
5. My typical pain level ranges from a 6 to a 10, but normally hovers around a 7.
6. In addition to pain, my symptoms include: dizziness, nausea, vomiting, confusion, aphasia, mood swings, ringing in my ears, blurred vision, depersonalization, neck spasms, sensitivity to light and sound, allodynia on my face and scalp, and irritation to my trigeminal nerve (I also have trigeminal neuralgia).
7. Treatments I have tried include: everything, basically, but to break it down, I’ve tried beta blockers, calcium channel blockers, anti-epileptic agents, gabapentin/lyrica, oral contraceptive, SSRIs and SNRIs, Botox, occipital nerve blocks, DHE infusions, deacon infusions, methergine, massage, acupuncture, and cognitive therapy. I’ve tried others, I’m sure, but that’s what I remember from the top of my head.
8. I take too many medications/supplements each day for prevention and not the right medications/supplements when the pain becomes unbearable. My go-tos for prevention are nadolol, methergine, Savella, magnesium, clonazepam, topamax, iron, and oral contraceptive. My abortives are indocin, migranal, tizanidine, vicodin, promethazine, zofran, and compazine.
9. When the pain gets bad, I usually wind up stuck in bed for days/weeks on end and inevitably I wind up admitted into the hospital for inpatient treatment.
10. The most frustrating part about having CDH is my loss of autonomy.
11. Because of CDH, I worry about not being able to provide for myself and not being able to be a productive member of society; my mother and my grandmother need my help, specifically, and with me being this sick, I can’t do anything for them at all, even though I desperately want to.
12. When I tell someone I have CDH, the response is usually a mixture of lack of understanding and a shallow “oh I hope you get better soon” which, really, is the same thing.
13. When I see how little research and information exists on CDH, I feel invalidated. Billions of dollars can go towards obesity, for example, which in most cases can be completely prevented, and yet migraine is left out in the cold.
14. Having CDH has affected my work/school life so negatively that I can no longer enroll in classes. I should have graduated with my diploma in 2011. It’s now 2015 and I still have almost 2 years left before I’ll be done.
15. Having CDH has affected by family life in the sense that it has fractured my relationships with everybody. Not being able to handle phone calls and not being able to drive places to meet with people, or not being able to handle looking at my cell phone to FaceTime relatives has been horrific because I have essentially been cut off from my family.
16. The one word that best describes my experience with CDH is chthonic.
17. My best coping tools are sleeping, praying, sleeping, and spending time with my mom. And sleeping.
18. I find comfort in knowing that I am not alone. I am not the only person suffering from CDH, and that gives me more comfort than words can say.
19. I get angry when people say it’s just a headache, because it really isn’t.
20. I like it when people say that my pain is real and that I am allowed to have my moments of remorse over my situation.
21. Something kind someone has done for me in relation to CDH? One time my mom rubbed cream into my feet for four hours while I was vomiting and sobbing my eyes out from pain on Christmas Day in the ER of all places when my migraines had just started to transform to chronic daily. I will never forget that. Ever.
22. The best thing a doctor has ever said to me about CDH is that he believes my pain is real. By contrast, the worst thing a doctor has ever done was prescribe two Tylenol pills to swallow while I was actively vomiting while admitted inpatient to treat 10/10 pain.
23. The hardest thing to accept about having CDH is knowing that at the age of 26, I might never live to see a pain-free day for the rest of my life.
24. Having CDH has taught me patience. It has taught me to be patient with other people (like doctors and nurses and strangers when I’m not feeling well), but most importantly, it has taught me to be patient with myself. I can’t rush myself to the point of pain, to the point where I lose my sanity or my health. My well-being has to be a priority, and I am the only person capable of ensuring it remains that way.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH comes from a Catholic saint who was a nun back in the 1600s. St. Teresa of Ávila suffered from chronic daily headaches and everybody basically thought she was crazy until some of her writings were corroborated by writings that were being made in convents in other locations at the time, so basically, she was vindicated. She lived every single day in excruciating pain, and yet she had the peace of mind to write these words:
“Let nothing disturb you,
Let nothing frighten you,
All things are changing:
God alone is changeless.
Patience obtains all things.
Whoever has God lacks nothing;
God alone suffices.”
26. If I could go back to the early days of my diagnosis, I would tell myself to buckle up because it’s gonna get bumpy, but DON’T GIVE UP. Also, ginger really helps with nausea so buck up and ignore the taste.
27. The people who support me most are my mom, my step-dad, and my grandma. If my dogs counted as people, I would include them as well.
28. The thing I most wish people understood about CDH is that it is a DAILY headache. It’s not a cop-out excuse. I sort-of hate the word “headache” in the official terminology because at least for me, it’s not a daily “headache” – it’s a daily “want-to-vomit-oh-god-the-room-is-spinning-the-sun-is-too-bright-why-is-everything-so-freaking-loud” migraine. And maybe that’s what I wish people would understand most about CDH. It’s so much more than daily head pain. It’s a complex syndrome of neurological symptoms that actively impedes daily activities and interferes – quite painfully, at that – with every attempt to eke out an actual “quality-of-life” existence in spite of the pain.
29. Migraine and Headache Awareness Month is important to me because it provides the opportunity for a common condition to receive the recognition and visibility it so deserves. Migraine is not just a head pain. It is a neurological condition that has a widespread effect on a person’s body, within a person’s family unit, and upon a person’s community. Advocacy for research for treatments and, hopefully a cure, will hopefully allow millions of people to live a life free of pain and other symptoms. It will let people like me return to living a normal life.
30. One more thing I’d like to say about living with CDH is: It’s hard. It’s hard to wake up every morning and have that split-second where you think that your head might not hurt that day until you blink and realize that the pain is still there. It’s hard when you sneeze and a lightning bolt shoots from the base of your neck towards the back of your eyes. It’s hard when your favorite foods become fodder for the toilet. It’s hard when you see your social circle slowly begin to dwindle and, eventually, disappear altogether. Living with chronic illness like CDH is not easy. It is not something a person wishes upon oneself. It’s not something you can say “it gets better” to or “just don’t give up” and magically feel better about it. However, there will be glimmers, sunny days and smiles and laughter and reminders of who you were before this disease consumed your life. And when you’re reminded of who you were, cling to that memory. Underneath the pain and confusion and hurt and trauma of being invisibly ill, you’re still you. And you are beautiful. And you will survive.

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.

30 Things Meme, Reader Stories

Living with Chronic Daily Headache

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This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 9 months, but have had severe headaches since my car accident
2. The first headache I remember is: After my car accident 6.5 years ago
3. After the headache started, it took 5 months to get a diagnosis.
4. My pain level fluctuates
5. My typical pain level ranges from: 6 – 8
6. In addition to pain, my symptoms include: sensitivity to light and sound, chronic fatigue, irritability, memory issues, lack of energy, need for constant rest
7. Treatments I have tried include: Medications (Amitriptyline 10mg, Topomax 100 mg, Axert, Maxalt), massage, cupping, chiropractor, essential oils: lavender, stress away, thieves), craniosacral therapist, naturopath, doctor of natural medicine, liver cleanse, nerve blocks, trigger point injections, subcutaneous needling, acupuncture, homeopathy, peat bath, tens unit, heat + ice, hydrotherapy, psychotherapist, vitamins and supplements, yoga, daily stretching and ball rolling, elimination diets + healthy foods, the list goes on.
8. I take magnesium, omega 3, vitamin D, curcumin and stress B-complex each day for prevention and nothing when the pain becomes unbearable. I haven’t found anything yet that relieves my pain when it’s unbearable.
9. When the pain gets bad, I: Lay down in a dark room with no noise and ice on my head.
10. The most frustrating part about having CDH is: Not having a normal life. I can’t do the simplest daily activities that I used to be able to do. Also, not being able to find any treatments that help me cope with the pain. Hopefully one day I find what works for me, but it’s a very long process.
11. Because of CDH, I worry about: My future. I worry that I won’t be able to find a partner in life that will want to deal with my headaches and accept me for the way I am. I also worry if I’ll ever be able to handle having kids.
12. When I tell someone I have CDH, the response is usually: “make sure you drink enough water” or “I don’t understand how a headache can last that long”
13. When I see how little research and information exists on CDH, I feel: upset and frustrated. It makes me want to feel better so I can help donate or volunteer.
14. Having CDH has affected my work/school life by: I have had to quit my job and will be moving back in with my parents next month. It has put my career on hold or maybe even permanently.
15. Having CDH has affected my family life by: I don’t have a husband or kids, but it has severely affected my social life. I don’t make plans with my friends to go out and if I do see them I can only handle one person at a time. They will come to my house and sit in the dark with me. But I can’t go out in a group anymore or be in public.
16. The one word that best describes my experience with CDH is: debilitating
17. My best coping tools are: my family/friends, my doctors, ice, sleep, stretching
18. I find comfort in: the fact that I’m not alone. Before this happened I didn’t realize how many people suffered from CDH, migraines etc. I do not wish this on anyone, but it’s nice to know there are people out there who understand what I’m going through and can relate to me on a level that my friends and family can’t.
19. I get angry when people say: they’ve had headaches too and know what it’s like.
20. I like it when people say: they’re praying for me or thinking about me. Even though I can’t be there physically, it’s nice to know I’m still in their thoughts.
21. Something kind someone has done for me in relation to CDH is: My mom and my nanny both drive me to all my appointments and help clean and cook my meals.
22. The best thing a doctor has ever said to me about CDH is: that I’m young and even though it will take some time he knows I will get better. And that there are a lot of options and treatments left to try. To spend time focusing on myself and get back in touch with my body since I had been neglecting it for so long.
23. The hardest thing to accept about having CDH is: that I may have to deal with this pain the rest of my life. That I probably won’t ever have the same lifestyle I used to. But I’m trying to look at that as a positive thing. That going forward I have and will continue to make changes in my life in order to lead the most authentic life possible.
24. Having CDH has taught me: to slow down. To spend more time evaluating my life and not be complacent. It’s also taught me to appreciate little things and be grateful for what and who I have in my life.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: “For what it’s worth: it’s never too late to be whoever you want to be. I hope you live a life you’re proud of, and if you find that you’re not, I hope you have the strength to start over.” F Scott Fitzgerald
26. If I could go back to the early days of my diagnosis, I would tell myself: not to stress and worry so much.
27. The people who support me most are: My mom and nanny
28. The thing I most wish people understood about CDH is: that it’s real and very debilitating.
29. Migraine and Headache Awareness Month is important to me because: it brings together a community of people who support and understand each other. And it allows us to slowly change the way the rest of world views us and help them understand.
30. One more thing I’d like to say about living with CDH is: I would not wish this on anyone, but without this happening to me I wouldn’t have learned some very important life lessons. As a young 26 year old, I have been given an opportunity to make changes in my life and learn lessons that most people never learn. I try to be as optimistic as possible about my situation and for everyone else out there remember how important gratitude is. Even in the darkest of days, remembering what you do have in your life can help you get through the day.

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.

30 Things Meme

30 Things About My Life With Chronic Daily Headache

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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.

30 Things Meme

30 things about Kacey’s daily headaches

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This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for __25__ years.
2. The first headache I remember is: I never had headaches until a car accident with a concussion.
3. After the headache started, it took ___2 years___ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates fluctuates
5. My typical pain level ranges from:5-6 daily
6. In addition to pain, my symptoms include: watery eyes, nausea, digestive issues, fatigue, cognitive difficulties, blurred vision, skin sensitivity, dry mouth, irritability, mood swings and frequent urination.
7. Treatments I have tried include: massage, chiropractic, acupuncture, bio feedback, preventative medication, abortive medication, Botox
8. I take _3___ medications/supplements each day for prevention and _3___ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: lay down in dark quiet room with an ice pack.
10. The most frustrating part about having CDH is:they are unpredictable and cause me to constantly change my plans or have to miss work or miss out on a lot of activities. It’s frustrating because most people don’t understand and don’t know the level of pain I function with every day.
11. Because of CDH, I worry about: when the pain will end and let me function.
12. When I tell someone I have CDH, the response is usually: they don’t know what causes them or what to do about them?
13. When I see how little research and information exists on CDH, I feel:hopeless
14. Having CDH has affected my work/school life by: when I am able to have a full time job I miss Amit of work and most days function at a lower level because of pain. I have gone through periods of time where my headaches are so bad I can’t work at all.
15. Having CDH has affected by family life by: I feel bad that I have to cancel a lot of plans with family. I also can’t help with a lot of household duties because of headaches. I feel that they worry too much about me.
16. The one word that best describes my experience with CDH is: tough
17. My best coping tools are: prayer
18. I find comfort in: pain free days
19. I get angry when people say: don’t they know what causes those? Why don’t you do…!
20. I like it when people say: I’m sorry you have to go through this.
21. Something kind someone has done for me in relation to CDH is: bring me soup and swap out my ice packs when I can’t get up.
22. The best thing a doctor has ever said to me about CDH is: we will keep trying different things til we get you some relief
23. The hardest thing to accept about having CDH is: this is a disease without a cure or known set treatment.
24. Having CDH has taught me:patience and endurance
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is:this too shall pass
26. If I could go back to the early days of my diagnosis, I would tell myself: be strong Kacey a long road is ahead
27. The people who support me most are:husband and parents
28. The thing I most wish people understood about CDH is: this is a disease and I’m in pain most everyday.
29. Migraine and Headache Awareness Month is important to me because: so others won’t feel alone, raise awareness and educate public
30. One more thing I’d like to say about living with CDH is: I go through usually 5 out of 7 days a week with a pain level of 5-6. I consider this “not a headache” because that’s my life. Some days I feel really hopeless and then a headache free day will come and I feel FREE!

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.