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30 things about why it’s not just a headache for me….

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

1. My diagnosis is: Chronic Migraine, Chronic Daily Headace
2. My migraine attack or headache frequency is: mild headache every day, migraine intensity headache varies, but when I get them the tend to turn “status” because the last so long.
3. The first migraine attack or headache I remember was: I was 27 years old. The weekend of my Dad’s birthday, we were at Stevie Rays Blues Bar, that headache lasted for 3 weeks
4. My pain levels range from: CDH: 2-3, Migraine: 5-8
5. I was diagnosed in: 2009
6. My comorbid conditions include: psoriasis, IBS, and most recently depression
7. I take __7__ pills each day for prevention and __2__ pills to treat an acute attack; and this doesn’t include injections, infusions, and blocks.
8. In addition to pain, other symptoms I experience include: photophobia, nausea, dizziness, difficulty talking, and sometimes numbers in my arm
9. Treatments I have tried include: medications, injections, blocks, massage, relaxation techniques
10. During a migraine attack or headache, I: a dark cold place
11. My migraine attacks or headaches are triggered or get worse when: my sleep schedule gets out of control (as in my insomnia is in effect), stress gets too high, or just because I’m breathing that day. I don’t have dietary triggers except that I can no longer drink draft beer.
12. The most frustrating part about having migraine or a headache disorder is: everything really. It’s put a strain on all aspects of my life.
13. Having migraine or a headache disorder causes me to worry about: my financial stability.
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: ” I don’t know how you are working” or ” I have a headache but I won’t complain because it’s nothing like yours”
15. When I see ads or articles about migraine or headache disorders, I think: oh just shut up!
16. My best coping tools are: my friends/family help keep me grounded, music when I’m not having sound sensitivity
17. I find comfort in: be alone most of the time. So that I don’t have to explain to people what is wrong.
18. I get angry when people say: when I have to tell people more than once that I don’t feel up to doing something, like they don’t believe me.
19. I like it when people say: Your brain is a bastard! Because I agree.
20. Something kind a person can do for me during a migraine attack or headache is: make sure I’m stocked up on ginger ale and crackers, my staples.
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: I will not give up on you.
22. Having migraine or a headache disorder has affected my work/school life by: it’s made it hard to fulfill my duties at time and I often feel like I’ve let my co-workers down
23. The hardest thing to accept about having migraine or a headache disorder is: they don’t define me, they are just a part of me. Something I struggle with daily.
24. Having migraine or a headache disorder has taught me: to take help when it is offered
25. The quotation, motto, mantra, or scripture that gets me through hard days is: fake it until you make it and this to shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: some days are totally going to suck, don’t dwell on those. Learn how to take your own advice.
27. The people who support me most are: some family and a couple of my “people”
28. The thing I most wish people understood about migraine or headache disorders is:it’s not just a headache.
29. Migraine and Headache Awareness Month is important to me because: Brain pains are bad. Awareness is good!!
30. One more thing I’d like to say about migraine or my headache disorder is: I could use a few could days here soon.

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

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30 Things About My Migraines

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

1. My diagnosis is: migraines
2. My migraine attack frequency is: monthly
3. I was diagnosed in: I can’t remember but I was very young.
4. My comorbid conditions include: ???
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack I used to take Topamax as a preventative but stopped because of the side effects. Now I take Maxalt when I feel a migraine coming on.
6. My first migraine attack was: maybe I was 10 or so?
7. My most disabling migraine symptoms are: the pain around my eyes, sensitivity to light and sound.
8. My strangest migraine symptoms are: don’t know, mine aren’t really strange.
9. My biggest migraine triggers are: stress and hormones
10. I know a migraine attack is coming on when: my eyes start to water
11. The most frustrating part about having a migraine attack is: people think you are faking.
12. During a migraine attack, I worry most about: getting my work done.
13. When I think about migraine between attacks, I think: I try not to think about them!
14. When I tell someone I have migraine, the response is usually: oh, I have headaches all the time–migraine isn’t just a headache, people!
15. When someone tells me they have migraine, I think: you poor thing…go lay down!
16. When I see commercials about migraine treatments, I think: oh boy, here we go again!
17. My best coping tools are: a dark room, my ice pack and my lavender eye pillow.
18. I find comfort in: sleep
19. I get angry when people say: Can’t you just take a pill?
20. I like it when people say: go to bed!
21. Something kind someone can do for me during a migraine attack is: leave me alone
22. The best thing(s) a doctor has ever said to me about migraine is: this shot will make you feel better!
23. The hardest thing to accept about having migraine is: how debilitating it can be.
24. Migraine has taught me: to catch it early
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too, shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: don’t know this one.
27. The people who support me most are: my hubby, my sons, and my BFF
28. The thing I most wish people understood about migraine is: it’s not just a headache.
29. Migraine and Headache Awareness Month is important to me because: I suffer.
30. One more thing I’d like to say about life with migraine is: It’s hard.

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

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30 Things About Shar’s Life With Chronic Daily Headache

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

1. My diagnosis is:
Chronic Daily Headache
Migraine with Aura

2. My migraine attack or headache frequency is:
I have some migraine symptoms about 20 days per month

3. The first migraine attack or headache I remember was:
I was 16 and was talking about a weird, terrible headache I was having to a guest from out of town. She said it sounded like a migraine. I have no idea when they first started

4. My pain levels range from:
My migraine frequency and pain levels have changed a lot in the past couple of years. Right now my pain ranges from 1-5, with very infrequent spikes to 6 or 7.

5. I was diagnosed in:
Approximately 1999

6. My comorbid conditions include:
Anxiety and depression

7. I take __7__ pills each day for prevention and __0__ pills to treat an acute attack
Amerge worked well for me in aborting acute attacks but I had a stress related heart attack last year and my cardiologist and neurologist both told me that I shouldn’t take triptans. I occasionally try Advil and Coke as an abortive if I notice a migraine coming on suddenly. Every once in a while this combo will help.

8. In addition to pain, other symptoms I experience include:
Nausea, light, sound and small sensitivity, dizziness, vomiting, diarrhea, trouble speaking, fatigue, confusion, drooping eye, and to go along with my neck pain, I know have pain that feels like TMJ

9. Treatments I have tried include:
Tricyclic antidrpressants
Beta blockers
Verapamil
Imitrex
Maxalt
Amerge
fioricet
Accupuncture and traditional chinese medicine
Massage
Food trigger avoidance
I’m currently trying 600 mg of magnesium and 400 mg of riboflavin
I’m sure I’m forgetting some things

10. During a migraine attack or headache, I:
lay down in a quiet dark room and cover my eyes with a cold pack. Try to meditate and rest.

11. My migraine attacks or headaches are triggered or get worse when:
I’m stressed
Around my period
I’m not sleeping or eating regularly

12. The most frustrating part about having migraine or a headache disorder is:
Having no control
Not being able to plan anything
Missing out on things I’d like to do because I know they’ll cause a migraine
Feeling like my husband is cheated out of a full life by being with me

13. Having migraine or a headache disorder causes me to worry about:
Losing my job
Migraines getting worse
My life passing while I’m in bed waiting to feel better

14. When I tell someone I have migraine or a headache disorder, they usually assume or say:
That it’s just a bad headache
That I can find a solution if I just try hard enough

15. When I see ads or articles about migraine or headache disorders, I think:
I already knew that
That’s misleading
I remember when ______ worked for me
I hope that helps someone!

16. My best coping tools are:
Rest
Meditation

17. I find comfort in:
My husband
The knowledge that I’ve gotten through years of difficult times and that I have the tools to get through this as well

18. I get angry when people say:
I get angry when family members ask me to do or eat something that I’ve explained many, many times before I can’t do/eat.

19. I like it when people say:
I’m sorry you have to deal with that

20. Something kind a person can do for me during a migraine attack or headache is:
At work, tell me to take it easy and do what I need to do for myself
At home, help me prepare the bed, cold pack, glass of water and keep me company if I ask

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is:
Migraine is fascinating
Everyone’s triggers are different
I’ve never heard of that, but I believe you

22. Having migraine or a headache disorder has affected my work/school life by:
Reducing my productivity
I don’t pursue promotion or jobs that involve travel because I know I can’t tolerate the stress or upsetting my routine

23. The hardest thing to accept about having migraine or a headache disorder is:
It’s not going to go away
Almost no one understands how bad it is
That there are debilitating symptoms besides the pain
For years I thought it was going to get better with menopause, but I’m starting to doubt

24. Having migraine or a headache disorder has taught me:
That I have to live with the reality of my life – not my life as I’d like it to be, but my actual life

25. The quotation, motto, mantra, or scripture that gets me through hard days is:
I’m going to be ok

26. If I could go back to the early days of my diagnosis, I would tell myself:
Learn as much as you can
Find doctors who listen

27. The people who support me most are:
My husband
My sister

28. The thing I most wish people understood about migraine or headache disorders is:
How it pervades every aspect of your life.
The constant anxiety

29. Migraine and Headache Awareness Month is important to me because:
Awareness has gotten so much better. I appreciate all the information that is available now

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

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30 Things About Amy’s Life With Chronic Daily Headache

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

1. My diagnosis is: new onset persistent headache that is migraneous

2. My migraine attack or headache frequency is: I live every day with constant, dull pain. With a better management plan, I now only have attacks about 1-2 times a week.

3. The first migraine attack or headache I remember was: Fall 2014.

4. My pain levels range from: 3-9. I live at a 3-4; attacks are 5-8; I’ve experienced a 9/10 once.

5. I was diagnosed in: 2015

6. My comorbid conditions include: chronic colitis, depression

7. I take __7__ pills each day for prevention and __2__ pills to treat an acute attack

8. In addition to pain, other symptoms I experience include: numbness/tingling in arms, legs and face; extreme fatigue; cognitive dysfunction; nausea; photophobia; phonophobia; vertigo

9. Treatments I have tried include: 8 different preventatives; 2 other acute medicines; billoptical nerve blocks; Botox; dietary changes; massages; ice packs; yoga; daith piercing

10. During a migraine attack or headache, I: need to get to a quiet, dark room where I can lay down with ice packs wrapped around my head as soon as possible.

11. My migraine attacks or headaches are triggered or get worse when: I’m under increased stress; barometric pressure changes; food triggers (gluten, tapioca, active yeast, honey, caffeine, alcohol, etc.); if I wear glasses, headband or anything that puts pressure behind my ears; when I continue to push instead of stopping to rest; just because the migraine minions decide to…

12. The most frustrating part about having migraine or a headache disorder is: feeling robbed of a life I once knew by an uninvited guest and feeling unreliable when I have to cancel plans.

13. Having migraine or a headache disorder causes me to worry about: people I’m cancelling plans on; job security

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m so sorry.” or “I had a migraine once. It’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: I honestly just laugh. I suppose I’m a bit cynical when I see an ad.

16. My best coping tools are: My faith that one day Jesus will restore all of creation including my body; prayer/meditation; yoga; playing volleyball

17. I find comfort in: Scripture; my bed; ice packs; encouraging words from loved ones

18. I get angry when people say: “Well at least it’s not something worse.”

19. I like it when people say: “I’m here for you, I care about you even when you’re not able to get together as much as I know you’d like.”

20. Something kind a person can do for me during a migraine attack or headache is: cook me food for the next couple of days; send me encouraging text messages; give me space; let me jump back in once I’m able without making it a big deal

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “What you’re experiencing is unacceptable. It may take awhile to find the right combination of meds but we will find it.”

22. Having migraine or a headache disorder has affected my work/school life by: making me realize my worth is not in my performance, productivity or contributions to an effort. I have worth because I have been claimed as a child of God. Nothing I do or don’t do can change the way God loves me and ultimately, that’s all that matters. This has been one of the biggest and hardest lessons for me to learn as I’ve had to take off the last year of graduate school and missed a LOT of work. I’m thankful for an accommodating employer and being able to work from home or during non-traditional work hours.

23. The hardest thing to accept about having migraine or a headache disorder is: I am not in control. At all.

24. Having migraine or a headache disorder has taught me: There’s always more going on in someone’s life than what meets the eye. As I’m learning what it looks like to live life in chronic pain, I’ve become more sensitive to the unseen pains of others. It may not be chronic migraine or some other physical illness, but it seems like most people have SOMEthing that’s a major burden to them. I’ve learned to care for others as I would like someone to care for me in this fragile state. Often times that means honestly giving people the benefit of the doubt, being flexible with no strings attached, offering to make other arrangements when they’re in a bind, and recognizing there are more important things in life than presentations and deadlines.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: Lamentations 3:19-32; Isaiah 43:1-2; “Just for today”

26. If I could go back to the early days of my diagnosis, I would tell myself: I was offered Botox early on in my diagnosis but was skeptical and unsure. Among other things I was still in a stage of processing/accepting tat I actually had chronic migraine. For someone who never experienced a headache or migraine until a couple years ago, it all seemed so foreign. Now, 2 years later, I understand that Botox is the most effective preventative available for me. I’m hopeful I’ll continue to see improvement using it.

27. The people who support me most are: my parents. Wow. They’ve gone above and beyond. I am indebted forever.

28. The thing I most wish people understood about migraine or headache disorders is: they are debilitating and life-changing. They affect your mind, body and spirit – everything about you.

29. Migraine and Headache Awareness Month is important to me because: for as many people who say they have experienced a headache or migraine there seems to be a real lack of knowledge, perspective and empathy for what a migraine/headache disorder can entail and how to support those going through it.

30. One more thing I’d like to say about migraine or my headache disorder is: Let’s remain hopeful. I often feel hopeless and just stuck. Let’s choose to remain hopeful for an increasingly better quality of life, the ability to fulfill our dreams and dare I say, even find a cure.

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

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30 Things About my Life with Chronic Migraines

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

1. My diagnosis is: Chronic migraine with intractable pain, being treated for cluster headaches
2. My migraine attack or headache frequency is: all day, every day. Several peaks of increased pain during the course of the day. Cluster headaches come in phases.
3. The first migraine attack or headache I remember was: in high school, missing several days and laying in bed wondering if I was ever going to be back to normal.
4. My pain levels range from: 5-9, with a 10 once every few weeks. I hate classifying anything as a 10. Most of my daily life is spent at a 7/8.
5. I was diagnosed in: 1990, episodic. 2011, chronic. 2015, cluster headaches.
6. My comorbid conditions include: depression, anxiety, fibromyalgia, pre-diabetes, neck pain
7. I take __8__ pills each day for prevention and __0__ pills to treat an acute attack. I rarely medicate acutely due to ineffectiveness and side effects of meds. I have a potent nasal spray that sometimes is effective.
8. In addition to pain, other symptoms I experience include: sensitivity to my environment, nausea, diarrhea, irritability, fatigue, difficulty concentrating, flushed cheeks, droopy eye, tooth & ear pain, vision problems, neck pain, phantom smells
9. Treatments I have tried include: over 2 dozen preventative and abortive medications, hospitalizations, DHE, Lidocaine and Ketamine infusions, supplements, nerve blocks, biofeedback, dietary changes, massage, chiropractic, therapy, exercise/yoga, various birth controls.
10. During a migraine attack or headache, I: am really disabled, cranky, and sensitive, and am trying to figure out how to reduce my pain
11. My migraine attacks or headaches are triggered or get worse when: the weather is bad, I’m stressed, I’ve eaten something, I’m in certain phases of my menstrual cycle, it’s too hot, I get too little sleep, I go too long without eating, I drink alcohol.
12. The most frustrating part about having migraine or a headache disorder is: not functioning at the level I know I’m capable of, missing events, and not being the mom my kids deserve.
13. Having migraine or a headache disorder causes me to worry about: my family, my bills, my long term health, my social security, my lost career, my future.
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “Feel better”, “Oh that stinks”, or assume it can’t be that bad because I look fine.
15. When I see ads or articles about migraine or headache disorders, I think: most people are misinformed and don’t know the challenging truth.
16. My best coping tools are: The Office, my comfy sofa spot, my sunglasses, rest, and my cold face mask.
17. I find comfort in: knowing I am not alone, my husband and kids, peanut butter
18. I get angry when people say: “Have you tried…”, “I get headaches, too”, “So you still get headaches?”
19. I like it when people say: “Let me know how I can help”, “I’m sorry you’re still suffering”
20. Something kind a person can do for me during a migraine attack or headache is: help take care of my kids, help get my medication and get me settled, let me rest
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “You’ve been having a hard time, let’s step back and re-evaluate”
22. Having migraine or a headache disorder has affected my work/school life by: causing me to leave my career
23. The hardest thing to accept about having migraine or a headache disorder is: that my life may be like this forever, and that I have not been pain-free for over 5 years.
24. Having migraine or a headache disorder has taught me: patience, acceptance, the strength of community, not to judge a book by its cover, disabilities look different
25. The quotation, motto, mantra, or scripture that gets me through hard days is: This too shall pass
26. If I could go back to the early days of my diagnosis, I would tell myself: be patient, and be prepared to fight for yourself and for a long time.
27. The people who support me most are: my husband, my kids, my close family, my migraine community
28. The thing I most wish people understood about migraine or headache disorders is: it’s more than just head pain, but the head pain can be horrendous. And just because I look fine does not mean anything.
29. Migraine and Headache Awareness Month is important to me because: it’s my opportunity to share my story and educate those in my life.
30. One more thing I’d like to say about migraine or my headache disorder is: it has made me the strongest and most resilient I’ve ever been in my life.

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