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30 things about Kacey’s daily headaches

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.

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Migraine Awareness Month/30 Things

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: Daily, 24/7. Every. Day.
3. I was diagnosed in: I started getting migraines when I was in middle school; they increased in strength and duration as I got older; diagnosed as having migraines by my primary care doctor in high school; turned daily in 2007 after my son was born; diagnosed in 2009 as “chronic migraine” by my amazing headache doctor
4. My comorbid conditions include: depression, anxiety
5. I take 6 medications/supplements each day for prevention and varying combinations of 7 medications to treat an acute attack
6. My first migraine attack was: In middle school sometime. I don’t remember the specific incident. They’ve just kind of always been a part of me. Knowing what I now know about migraines, I know that I was getting abdominal migraines often as a child, too.
7. My most disabling migraine symptoms are: Excruciating pain that feels like it’s ripping my head into pieces. Visual auras that takeover my whole field of vision.
8. My strangest migraine symptoms are: Sometimes it looks like the walls of the room are all closed in on me, like they’re all right next to me. Then it reverses and it seems like the walls and my hands are a mile away. It’s called Alice in Wonderland syndrome, and it’s freaky. I also get bad alloydnia, which basically means my nerves are firing crazy and *everything* hurts. My hair hurts my scalp, my clothes hurt. The visual auras are almost pretty sometimes, before the pain sets in. I see sparkling glittering shapes that grow and move. They’re there if my eyes are open or closed. “Glittering castles in the sky” is my favorite analogy I’ve heard. The shapes glitter and spread until my peripheral vision starts to go dark. The dark spreads over my whole vision and then it just stops and it all goes away. Sometimes I get colors covering my vision, like kaleidoscopes.
9. My biggest migraine triggers are: Bright lights especially if they’re flickering, skipping meals, stress but not usually during the stressful situation directly after.
10. I know a migraine attack is coming on when: A lot of times I don’t. Sometimes I get the visual aura, which is a sign that pain is about to hit hard. My face flushes at the beginning of an attack sometimes. Sometimes I realize I’m in a really bad brain fog like I’m swimming through mud trying to think straight. Or I realize that I’m miserably cranky for no reason. Then once the pain starts, I put two and two together and realize I should have known it was coming.
11. The most frustrating part about having a migraine attack is: Having no control over them. Not knowing when it’s going to get bad, not knowing if I can make plans for next week or even the next day. How it all runs together, the premigraine (prodrome) stage, the actual migraine, and the after (postdrome) hungover stage.
12. During a migraine attack, I worry most about: Things that I “should” be doing. What I’m missing. Whether I’m being a good mother.
13. When I think about migraine between attacks, I think: There’s no “between attacks”, just different numbers on the pain scale.
14. When I tell someone I have migraine, the response is usually: “You should try this thing I saw on Dr Oz….” I probably already have. Trust me.
15. When someone tells me they have migraine, I think: About whether or not I can help
16. When I see commercials about migraine treatments, I think: Excedrin commercials are assholes.
17. My best coping tools are: Laughter, makes the best of a crappy situation. (Family trait) Also, mindfulness and breathing techniques to relax.
18. I find comfort in: My family. My puppies.
19. I get angry when people say: “it’s just a headache.” or “You look fine.”
20. I like it when people say: “Want me to turn these light off for you?”
21. Something kind someone can do for me during a migraine attack is: Rub my head gently. Draw up a shot of my medicine. Be quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: A lot of people with migraine disease are really smart. It’s almost like your brain is firing on all cylinders all the time. Of course, sarcastically “best”, there was a time a doctor told me that I’m “medication resistant” and that’s part of why treating me is so difficult. Oh! Or this other doctor who told me that if I could just stop stressing about the migraines then I wouldn’t have them. I hated that guy.
23. The hardest thing to accept about having migraine is: The unpredictability of it all. Having to miss out on things. Feeling like I’m letting people down. The guilt that comes with it.
24. Migraine has taught me: To always keep going, keep fighting. I realized I’m stronger than a lot of people (including myself) think. To be able to do lots for myself even when I think I can’t.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Not necessarily one quote, but I like the book A Brain Wider Than The Sky by Andrew Levy. It’s his struggle with migraine interwoven with information about migraines and famous people with migraines all through history. Makes me feel a lot less alone in the world.
26. If I could go back to the early days of my diagnosis, I would tell myself: Hang in. There’s tough days ahead, but you’re tougher.
27. The people who support me most are: My husband and my son. I also am lucky enough to have found some amazing doctors.
28. The thing I most wish people understood about migraine is: Its so much more than pain in your head. It’s all encompassing. It effects every part of you. Vision, balance, energy level, digestion, mood…. Everything. And it’s different for every person with the disease.
29. Migraine and Headache Awareness Month is important to me because: The National Institute of Health allots only .012% of its research funding to migraine/headache. That’s equal to about $.36 in research funds for every person with migraine. In comparison, diabetes research gets about $49.38 per person and asthma receives about $12.25 per person. The last treatment specifically for migraine was created in 1991 and is still basically the only medication created for migraine. Most other drugs used to treat migraine are off label or help migraine as a side effect. There’s things in the works, but nothing FDA approved yet. Awareness is hopefully the first step to funding and help.
30. One more thing I’d like to say about life with migraine is: If you’re fighting it, you’re not alone. Find someone to talk to. A friend, a stranger online, a doctor. Talk. It can seem never ending and hopeless. If you have a friend with migraines, be that person to them. Just ask how they are and don’t judge.

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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The Good, The Bad & The Ugly

This is a reader-submitted story.

1. My diagnosis is: Chronic Complex Daily Migraines
2. My migraine attack frequency is: Daily
3. I was diagnosed in: Early 2000’s
4. My comorbid conditions include: Depression
5. I take __3__ medications/supplements each day for prevention and __1__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 5 or 6 years old I believe
7. My most disabling migraine symptoms are: Severe Nausea and aversion to light
8. My strangest migraine symptoms are: hallucinating the smell of Gas or Cigarette Smoke, yawning, the numbness or loss of sensation in limbs and brain fog!
9. My biggest migraine triggers are: Strawberries – I love them but they hate me. We broke up 15 years ago
10. I know a migraine attack is coming on when: The nausea kicks in full belt and all I want to do is sleep
11. The most frustrating part about having a migraine attack is: They never end. As I recover from one I am hit with another then another and then another. They just keep coming
12. During a migraine attack, I worry most about: My future. What does it hold for me if the severity of my migraines continue along the same trajectory
13. When I think about migraine between attacks, I think: They’ve robbed me of me and OMG I am exhausted!
14. When I tell someone I have migraine, the response is usually: Have you tried… or My friends, mums best friend gets them
15. When someone tells me they have migraine, I think: How can I help?
16. When I see commercials about migraine treatments, I think: I wish it was that easy and head pain is only the tip of the iceberg
17. My best coping tools are: A dark room and plenty of fluid
18. I find comfort in: the cinema (weird I know)
19. I get angry when people say: You need to be more positive
20. I like it when people say: If you need anything let me know
21. Something kind someone can do for me during a migraine attack is: Let me put my health above everything
22. The best thing(s) a doctor has ever said to me about migraine is: You are not making these up. They are real and I will do my best to help you or find someone or something to help you
23. The hardest thing to accept about having migraine is: The feeling that my body is betraying me and robbing me of my life. I’m not able to do the things that ‘normal’ 20-30 year olds do.
24. Migraine has taught me: To take life one day at a time and cherish the good days
25. The quotation, motto, mantra, or scripture that gets me through an attack is: You are stronger than the migraines. You will survive this attack.
26. If I could go back to the early days of my diagnosis, I would tell myself: Cherish the days when you are able to function ‘normally’ as they might not last
27. The people who support me most are: My amazing mum who can spot when I am becoming exhausted before I can
28. The thing I most wish people understood about migraine is: It is not just a headache. It is incurable and It is an all out assault on my body
29. Migraine and Headache Awareness Month is important to me because: The more people understand the impact of migraines and headache conditions the more we can do to help future generations
30. One more thing I’d like to say about life with migraine is: I am learning to make the most of it when I can. I have learned to listen to my body better than anyone else I know. That is a positive to me

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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30 Things About My Migraine

This is a reader-submitted post.

My 30 Things

1. My diagnosis is: chronic migraine with post-traumatic headache (the trauma was hitting my head on pavement and then a car accident) and cervicogenic headache
2. My migraine attack frequency is: every day. It used to be episodic, but became chronic in May 2014.
3. I was diagnosed in: 2007
4. My comorbid conditions include: I’m really lucky not to have anything except the occasional bout of restless leg syndrome.
5. For daily prevention, I take: mexiletine, baclofen, magnesium, Vitamin D, Botox injections, and greater occipital nerve blocks. To treat an acute attack, I take: Promethazine, Migranal, Imitrex, and Toradol injections (not all at once). I’m really proud that I’ve worked my way down to this lower number of pills.
6. My first migraine attack was: in 7th grade. I had aura and tunnel vision and had no idea what was happening.
7. My most disabling migraine symptoms are: crippling nausea (as in, blinking makes it worse). Photophobia is also very disabling because it prevents me from going anywhere. Oh, and the head pain isn’t fun.
8. My strangest migraine symptoms are: numbness on my right side, forgetting simple words, and inability to put sentences together
9. My biggest migraine triggers are: bad weather above all. Also light (especially fluorescent and the computer screen), sound, smell, and concentrating too hard on anything (including being around other people/being social). Just start imagining all the things that keeps me from doing.
10. I know a migraine attack is coming on when: I start to feel really dizzy and nauseous. I get really weak and giddy.
11. The most frustrating part about having a migraine attack is: not being able to participate in daily life. And I don’t just mean going to the movies and hanging out with friends in public. I mean washing the dishes and doing laundry, too. It’s also frustrating to know that my disease affects other people negatively, and there’s nothing I can do about it.
12. During a migraine attack, I worry most about: Am I ever going to feel better? What if I never get better and I’m stuck like this for the rest of my life??
13. When I think about migraine between attacks, I think: I can beat this motherf$&@er!!!
14. When I tell someone I have migraine, the response is usually: I don’t like telling people because I’m afraid they’ll think I’m looking for pity. I’m not. Just understanding and acceptance.
15. When someone tells me they have migraine, I think: I understand. Do you want to talk about it? I would love to talk about it with someone.
16. When I see commercials about migraine treatments, I think: Don’t ever take Lyrica, that stuff is from hell!!
17. My best coping tools are: deep breathing and visualization (of all the things I’ll do when I’m better)
18. I find comfort in: spending time with my mom. Puppies help, too.
19. I get angry when people say: I don’t believe you can be in that much pain all the time.
20. I like it when people say: I believe you.
21. Something kind someone can do for me during a migraine attack is: remind me that I’m going to get better and bring me occasional drinks or snacks. My mom does all of this and I am so lucky.
22. The best thing(s) a doctor has ever said to me about migraine is: I believe you. Let’s try something else. Also, think about what you’ll do when you’re better.
23. The hardest thing to accept about having migraine is: It’s keeping me from living the life I want. If I were better, I’d have finished a graduate degree and be working for some kick-ass feminist advocacy group by now.
24. Migraine has taught me: that I’m strong. I’ve also learned to respect my limits, and that what I thought was a 10 on the pain scale before I had migraine registers now as simple annoyance.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Pain is inevitable. Suffering is optional.
26. If I could go back to the early days of my diagnosis, I would tell myself: Go to the Jefferson Headache Center in Philly. They know what they’re doing and a lidocaine drip works miracles.
27. The people who support me most are: my family and best friends, who visit me in the hospital and give me amazing pep talks (you know who you are)
28. The thing I most wish people understood about migraine is: it’s more than just a headache. It’s a major, disabling neurological brain disorder. I would give pretty much anything to be normal again.
29. Migraine and Headache Awareness Month is important to me because: it reminds me that I’m not alone.
30. One more thing I’d like to say about life with migraine is: it sucks. Don’t do it. Drive safely and don’t let boys drop you on your head.

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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Living with chronic migraines

This is a reader-submitted post.

1. My diagnosis is: Chronic intractable migraines
2. My migraine attack frequency is: almost daily
3. I was diagnosed in: 1997 with episodic migraines, 2010 with chronic migraines
4. My comorbid conditions include: depression, anxiety
5. I take __10__ medications/supplements each day for prevention and _3___ medications/supplements to treat an acute attack
6. My first migraine attack was: my last year of college, walking home from the metro; pain like I had never felt before, I was incapable of walking and had to call for help to get me home.
7. My most disabling migraine symptoms are: nausea, inability to talk without making the migraine much worse
8. My strangest migraine symptoms are: difficulties locating words
9. My biggest migraine triggers are: a lot of talking, a lot of activity
10. I know a migraine attack is coming on when: the pain increases, I can’t think clearly
11. The most frustrating part about having a migraine attack is: Being incapable of being productive/getting anything done, being alone so much
12. During a migraine attack, I worry most about: everything that needs to get done that isn’t getting done (outside of managing the pain itself)
13. When I think about migraine between attacks, I think: worry for what activities I’ll have to miss or cancel during the next attack
14. When I tell someone I have migraine, the response is usually: concern
15. When someone tells me they have migraine, I think: yes, there are SO many of us
16. When I see commercials about migraine treatments, I think: thank God for those for whom they work, I hope one day they’ll create a medicine that works for me
17. My best coping tools are: ice packs for treating pain, quiet room, medication
18. I find comfort in: my immediately family’s empathy
19. I get angry when people say: “but if you would only try ****, you’ll be okay, just like my friend/family member/neighbor” (it’s the result of behavior/inaction/food habits/etc and therefore something preventable; it’s not a disease)
20. I like it when people say: I’m sorry, that must be very difficult to live with
21. Something kind someone can do for me during a migraine attack is: take my kids out for activity (since activity leads to migraines for me, I feel like a bad parent for being unable to help my kids be more active)
22. The best thing(s) a doctor has ever said to me about migraine is: lets see what we can to to try and better MANAGE the migraines that you have; I understand that coping with depression along with migraines is difficult, and I will not *blame* you for struggling to document your migraines when you’re experiencing depression
23. The hardest thing to accept about having migraine is: restricted activity, reduced productivity, loss of a challenging/fulfilling career
24. Migraine has taught me: how to accept limits and have patience with limits
25. The quotation, motto, mantra, or scripture that gets me through an attack is: it’s okay, you’re okay
26. If I could go back to the early days of my diagnosis, I would tell myself: to have seen a migraine specialist immediately (not a neurologist); seek more comprehensive treatment early on, and consistently, to prevent the transformation to chronic migraines
27. The people who support me most are: my husband
28. The thing I most wish people understood about migraine is: it’s a disease that has to be managed (for some quite easily, for others almost impossible); there is, therefore, no cure and all people have very different reactions/success/failure with different types of treatment (one one size fits all)
29. Migraine and Headache Awareness Month is important to me because: it leads to increased knowledge in the larger community (less judgement)
30. One more thing I’d like to say about life with migraine is: it’s incredibly difficult to try and find purpose/PRIDE in a life that is so constricted, especially if it comes after you have forged (and lost) a successful, hard-won career/education

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.