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My Migraine Mini-Story

This is a reader-submitted story.

1. My diagnosis is: chronic migraine, intractable migraine, cervicogenic headaches, myalgia
2. My migraine attack frequency is: 1-7 days a week; I am always in some sort of pain, but it is not always a full-blown migraine attack
3. I was diagnosed in: 2008, but I have had episodic migraines since I was 5 years old
4. My comorbid conditions include: insomnia, depression, fibromyalgia, TMJ
5. I take 4 medications/supplements each day for prevention and 6 (not all together) medications/supplements to treat an acute attack
6. My first migraine attack was: the first one I remember having is when I was five years old at my uncle’s wedding reception. I had eaten a lot of green icing off the cake, and when I got hit with the migraine, I threw the icing up everywhere and had to go home with some cousins to lie down
7. My most disabling migraine symptoms are: the pain itself, lack of concentration and inability to speak from the pain being so severe. I used to get the tunnel vision aura and couldn’t see out of my peripheral vision.
8. My strangest migraine symptoms are: I wouldn’t say any of them are strange or unusual… I crave salty snacks if I am not too nauseous to eat, and I can’t close my eyes because they hurt too badly to use those muscles
9. My biggest migraine triggers are: change in the barometric pressure, oranges/orange juice, lack of sleep or too much sleep…hormones are also a big one
10. I know a migraine attack is coming on when: I used to get tunnel vision, but ever since they became chronic, I usually just wake up with the migraine I’m going to have that day. You don’t get a warning aura when the pain is constantly there.
11. the most frustrating part about having a migraine attack is: the inability to function or sit still or rest
12. During a migraine attack, I worry most about: what people think about me just lying there, and I also worry about when the pain is going to stop or diminish at all. “Is it ever going to stop?”
13. When I think about migraine between attacks, I think: pain and despair and fear
14. When I tell someone I have migraine, the response is usually: “Oh I had a migraine once, it was terrible. I can’t imagine having them all the time.” Or “My uncle has migraines, they suck.” Or “Oh I’m so sorry!” or just “That sucks.”
15. When someone tells me they have migraine, I think: At first, I think, “Yeah, right, you’ve had a bad headache a few times and want to call it migraine.” But I ask them about it and if they truly do have migraines, I’m deeply saddened for them
16. When I see commercials about migraine treatments, I think: Been there, done that. If only it were that easy.
17. My best coping tools are: prayer, distraction with electronics, thinking about my daughter
18. I find comfort in: knowing that God is holding me and that there’s a reason for my pain
19. I get angry when people say: I used to get angry when people told me it was going to get better….like how can you possibly know that? I do get irritated with people who do not have migraines but like to make their occasional bad headache seem like a big deal. If you can’t relate, don’t try.
20. I like it when people say: that I must be a very strong individual and that they could never imagine having to live like this (of course my strength comes from God, but it is always reassuring to hear my efforts to function in the world are being noticed)
21. Something kind someone can do for me during a migraine attack is: RUB MY HEAD! Or any part of my body…having a “fingernail massage” is so relaxing and helps me to focus on how good that feels instead of how awful the migraine feels
22. The best thing(s) a doctor has ever said to me about migraine is: HA! Like I’ve ever heard a good thing from doctors…I always hear that I’m a difficult patient and get pawned off onto other doctors.
23. The hardest thing to accept about having migraine is: My limitations…I have a very active personality and I like to stay busy and accomplish a lot, but it is impossible to be as much that way as I want to be with chronic migraines.
24. Migraine has taught me: Easy does it. Rely on God, He is enough. There are more important things in life than achieving status. I am still learning how to ask for help…that does not come easy to me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Help me, Jesus
26. If I could go back to the early days of my diagnosis, I would tell myself: this is going to get hard…you’re going to want to give up many, many times. But don’t get angry at God and turn away from Him, because it will leave you more depressed than you can imagine. And make sure you rely on God, not narcotics.
27. The people who support me most are: My grandparents, my parents, and my brother Ben. Many people in my family know what migraines and chronic migraines feel like. My two year old daughter even rubs on me sometimes, which is her way of helping and supporting me  and I have a wonderful Facebook support group for patients with chronic migraines and headaches of any kind
28. The thing I most wish people understood about migraine is: it’s NOT just a headache. I think everyone should have to get at least one migraine in their lives so they could have just a tiny inkling of what it feels like to be that miserable on a daily basis. They would appreciate chronic migraneurs so much more instead of judging them. Just because we are able to smile and fake it a lot of the time doesn’t mean we’re not wishing we could writhe on the ground screaming and crying like you would be doing if you had this pain just once.
29. Migraine and Headache Awareness Month is important to me because: I want migraines and chronic daily headaches to be taken seriously. People need to know how prevalent they are and how debilitating they can be.
30. One more thing I’d like to say about life with migraine is: It is hard to keep up a social life because we have to cancel plans many, many times. Talking on the phone is difficult when we are in pain. But if you have a friend with migraines, please don’t give up on them. They need good friends in their lives, even if they are unable to be what you consider a good friend back to you. Be patient with them; it is not their fault. Have compassion, not pity.

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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My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Episodic Migraine Without Aura
2. My migraine attack frequency is: 4-10 days/month
3. I was diagnosed in: Early high school
4. My comorbid conditions include: Hypothyroidism, Depression, Cold hands & feet
5. I take __0__ medications/supplements each day for prevention and __1__ medications/supplements to treat an acute attack
6. My first migraine attack was: Don’t remember
7. My most disabling migraine symptoms are: Extreme pain, heavy fatigue, nausea
8. My strangest migraine symptoms are: Food cravings (mainly salt) or forgetting words
9. My biggest migraine triggers are: Weather, hormonal, anything on the back of my neck (I can’t wear turtlenecks or heavy necklaces, for example)
10. I know a migraine attack is coming on when: My neck feels stiff
11. The most frustrating part about having a migraine attack is: Cancelling plans
12. During a migraine attack, I worry most about: When it will end
13. When I think about migraine between attacks, I think: I wish I knew when attacks were going to happen, so I knew when I should or should not make plans. I also wish there was a cure.
14. When I tell someone I have migraine, the response is usually: “So what?” or “My relative XYZ also has those,” followed by treatment advice that usually has nothing to do with Migraine.
15. When someone tells me they have migraine, I think: A sympathy buddy!
16. When I see commercials about migraine treatments, I think: Would it work? What are the side effects? Have I already tried something similar? What was the research this was based on? (many drugs are sold as migraine treatment when they were originally developed for something else)
17. My best coping tools are: Sleep & silence
18. I find comfort in: When I have an attack at home & can actually lay down instead of pushing myself. Also, my kitties who cuddle up with me when I’m feeling bad.
19. I get angry when people say: “It’s just a headache.”
20. I like it when people say: Anything that tells me they know how disabling migraine attacks are. It helps to be understood.
21. Something kind someone can do for me during a migraine attack is: Show me somewhere dark & quiet where I can lie down & not be disturbed. Also bringing me my meds, water, or food (if I am able to eat) so I don’t have to walk. Don’t expect me to make decisions about anything when I can’t think.
22. The best thing(s) a doctor has ever said to me about migraine is: “If that doesn’t work (referring to a treatment), there are plenty of other options we can try!”
23. The hardest thing to accept about having migraine is: There is no cure. It’s not going to go away. 🙁
24. Migraine has taught me: I am capable of pushing through more pain than I thought. It’s helped me in other areas (like a double foot surgery) where I wouldn’t let pain stop me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” (Romans 8:18)
26. If I could go back to the early days of my diagnosis, I would tell myself: Do all the research you can right away, and you can definitely improve things to a point.
27. The people who support me most are: My family
28. The thing I most wish people understood about migraine is: It’s a disabling, genetic neurological condition. It’s NOT caused nor cured by lifestyle changes, food, or positive thinking.
29. Migraine and Headache Awareness Month is important to me because: Stigma and lack of knowledge about Migraine has led to a lot of losses over the years, that may have been avoided if people understood more about this disease.
30. One more thing I’d like to say about life with migraine is: It’s one of the most misunderstood diseases today. Most people don’t understand how disabling it can be, or how much it impacts your life. Please be a friend and take the time to learn and research before making assumptions & suggestions. Thanks everyone!

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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Associate Professor of English and Humanities

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for 14 years.
2. The first headache I remember is: I went to New York City as a child, maybe 8 or 10 years old, and when I got home I had the worst headache ever. It kept me in bed all day.
3. After the headache started, it took 20 years to get a diagnosis.
4. My pain level fluctuates from none (very rarely) to very severe. It’s usually moderate, but it’s exhausting to teach even with a moderate headache.
5. My typical pain level ranges from: moderate-severe.
6. In addition to pain, my symptoms include: light sensitivity, sound sensitivity, depression, anxiety, exhaustion, insomnia, polyneuropathy (drop foot), and overweight (I can’t exercise). My medications have also caused gastritis, asthma, hair loss, and kidney stones (not including side effects of ones I went off).
7. Treatments I have tried include: all possible medications, including prednisone; Botox; yoga; biofeedback; acupuncture; hypnosis; six top headache specialists; two weeks as an inpatient at Michigan’s head pain hospital; Cefaly; and heat and ice. Yoga (for relaxation and special conditions) has helped most.
8. I take 8 medications/supplements each day for prevention and 0-1 medications/supplements when the pain becomes unbearable. Nothing helps the pain except maybe ice and rest.
9. When the pain gets bad, I lie down with ice or heat on my head.
10. The most frustrating part about having CDH is having to work/teach with a terrible migraine, and no one can tell I’m unwell.
11. Because of CDH, I worry about getting headaches, not working as well as I would like, missing numerous events, and not worrying family.
12. When I tell someone I have CDH, the response is usually: How can you teach with a migraine?
13. When I see how little research and information exists on CDH, I feel: I have to give money and I wish I could help advocate.
14. Having CDH has affected my work/school life by severely reducing my production in terms of publishing and destroyed my dream, encouraged by my advisor, of being a great scholar at a research university.
15. Having CDH has affected by family life: my mother worries all the time, too much, and my husband has depression and panic attacks. I have to cancel plans often.
16. The one word that best describes my experience with CDH is: pain.
17. My best coping tools are: not giving in to headaches, as my psychotherapist used to caution repeatedly. He said it is not the headaches you will remember, but the work you accomplish despite them.
18. I find comfort in: my pet rabbit, stuffed animals, my students, movies, and my husband.
19. I get angry when people say: just take an aspirin.
20. I like it when people say: it must be really hard for you.
21. Something kind someone has done for me in relation to CDH is: it’s not your fault.
22. The best thing a doctor has ever said to me about CDH is: don’t let your headaches take over; do as much as you can in spite of them. And don’t get upset or angry when you can’t get up, because it will only make it worse.
23. The hardest thing to accept about having CDH is: why me? And that I didn’t do anything wrong.
24. Having CDH has taught me: to be kinder in general, especially to my students who have chronic pain.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Iyengar yoga (OM).
26. If I could go back to the early days of my diagnosis, I would tell myself: taking one preventative pill is no big deal…just wait until you’re taking 8.
27. The people who support me most are: my husband.
28. The thing I most wish people understood about CDH is: one can work and act normal even when one is in severe pain. And I don’t miss events other than teaching just because I’m lazy.
29. Migraine and Headache Awareness Month is important to me because: I like reading the blogs of other sufferers.
30. One more thing I’d like to say about living with CDH is: I want to reach out to others, especially students.

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 Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 2-3 a week
3. I was diagnosed in: 1997 or 1998
4. My comorbid conditions include: depression/anxiety
5. I take _2_ medications/supplements each day for prevention and _3 medications/supplements to treat an acute attack
6. My first migraine attack was: first I vividly remember was 1994, but may have had one before that
7. My most disabling migraine symptoms are: light sensitivity/nauseaa
8. My strangest migraine symptoms are: increased smell sensitivity, strange cravings for spicy food
9. My biggest migraine triggers are: sleep deprivation, skipping meals, weather changes
10. I know a migraine attack is coming on when:I get a pain behind my right eye
11. The most frustrating part about having a migraine attack is: I have to just “drop out” of life
12. During a migraine attack, I worry most about: having a brain tumor
13. When I think about migraine between attacks, I think: how tired I am of always having to tell my husband I have another one
14. When I tell someone I have migraine, the response is usually: So, you have a headache, whatev…
15. When someone tells me they have migraine, I think: You have my sympathy…let’s talk drugs-what works for you (in the hopes that they might have a treatment I haven’t tried yet)
16. When I see commercials about migraine treatments, I think: Damn, already tried that…
17. My best coping tools are: Netflix (sometimes), drugs (for about 30 mins.), box fan
18. I find comfort in: Knowing there are a lot of us-there is research being done, and (sorry it is selfish) knowing others have it worse.
19. I get angry when people say: I recently found out my daughters talked between themselves about how I was exaggerating.
20. I like it when people say: I’m just happy when I don’t get questioned about it. Like if I say I have to go home or can’t come in or whatever, and they just say, ok, hope you feel better.
21. Something kind someone can do for me during a migraine attack is: don’t open the bedroom door-it makes the dogs bark-keep it dark and quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: just naming it and beginning to prescribe “real” meds for it.
23. The hardest thing to accept about having migraine is: that I know I’m going to have another one…
24. Migraine has taught me: my ex-husband was an asshole. My second husband is a saint.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “It’s not a tumor” from Kindergarten Cop
26. If I could go back to the early days of my diagnosis, I would tell myself: Take your rescue meds earlier-it’s not going to go away.
27. The people who support me most are: My husband-he mostly leaves me alone and lets me rest-but checks on me every couple of hours or so to see if I need anything. He never complains, even though it has got to frustrate him to have to deal with me having headaches so often.
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 want people to realize what we are dealing with and I want them to figure out how to “cure” us…
30. One more thing I’d like to say about life with migraine is: Thank god we don’t have to keep ice picks in the house anymore–I’d have already used it to stab myself in the eye by now. Sorry I didn’t put some inspirational quote, but this crap is miserable.

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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Jorie’s 30 Things About Living With Migraine

This is a reader-submitted story.

June is National Migraine and Headache Awareness month. I am not very candid about my struggle with migraine outside the realm of my close friends and family, but because this illness is so raw and affecting to me, I am choosing to join in on the “30 Things” challenge. Thank you to The Daily Headache Blog and Kerrie to being a constant support to me, even if I am usually a quiet, anonymous reader. You are such a strong, inspiring person. I constantly relate to you in terms of migraines, so thank you for your words and for launching this project.

1. My diagnosis is Chronic and Menstrual/Hormonal Migraine.
2. My migraine attack frequency is very sporadic, 100% of the time occurring around the time of my ovulation, menstruation, or any time I have any change in hormonal balance. So several times per month, and otherwise, it’s unpredictable outside of my known triggers.
3. I was diagnosed in 2005, at the age of 12.
4. My comorbid conditions include Generalized Anxiety Disorder, Menorrhagia, and a general unknown hormone imbalance
5. I take 4 medications/supplements each day for prevention and up to 6 medications/supplements to treat an acute attack.
6. My first migraine attack was around age 10 or 11.
7. My most disabling migraine symptoms are first, the excruciating, throbbing pain in my skull focused at my temples; second, the nausea and vomiting to the point of passing out; and third, the fact that I become incoherent and cannot make sense of my surroundings. I become tongue-twisted, lethargic, and eventually sleeping for 12+ hours is the only remedy I can resort to.
8. My strangest migraine symptoms are my pain patterns. For example, the pain predictably switches from one side of my head to the other. Also, I used to experience migraine with aura when I was younger, but my visual auras no longer occur, making it much more difficult to predict an oncoming attack.
9. My biggest migraine triggers are hormone imbalances (whatever the cause may be), odors (cigarette smoke, some candles, vehicle exhaust, gas fumes, strong perfumes, the list goes on…), extreme stress/anxiety (most notably being in a situation where I am “stuck” with a crowd of people, also known as agoraphobia), overheated body temperature (such as a long workout or being outside on a hot day), and very loud noises. There are others, but surprisingly I have never seemed to pinpoint any food triggers.
10. I know a migraine attack is coming on when I experience excessive yawning, accompanied by smelling a faint scent of something burnt, like matchsticks. I consider this to be my “new aura,” and my neurologist refers to this sensation as parosmia, or basically the medical term for olfactory hallucinations.
11. The most frustrating part about having a migraine attack is generally just missing out on life, cancelling plans, calling out of work, or spending anywhere from hours to a few days in bed. Oh, and I can’t forget about the “pill limit” placed by insurance companies. That’s a real bugger.
12. During a migraine attack, I worry most about: “Do I have enough medicine to take?” “I wonder how long this is going to last?” “Do I have enough sick time to use if I need to miss work for this?”
13. When I think about migraine between attacks, I think: “Is today a migraine day?” “When can I fill my next prescription?”
14. When I tell someone I have migraine, the response is usually: “Oh, my –insert relative here– gets those.”
15. When someone tells me they have migraine, I think: SOUL. MATE. Haha, but really, it’s really nice to have someone to relate to. I enjoy the “migraine talk.”
16. When I see commercials about migraine treatments, I think: “Please tell me more about those life threatening side effects.”
17. My best coping tool is a metal clothing hanger. I’m actually not joking about that. Anyone with migraine can probably tell you that they have tried the most far-out, crazy home-remedies to get rid of pain…and this is mine. Other than my hanger trick, a cold compress, lavender-menthol rub, and a comfortable bed are nice too.
18. I find comfort in someone believing me and empathizing with me. I’m not asking for a miracle, but realize that migraine is more than “just a headache.” Realize that I am truly disabled, and I am not able to be 100% there during an attack. To those who understand these facts, I am comforted by your presence in my life and I thank you to the moon and back.
19. I get angry when people say: “It’s just a headache. Why don’t you take some aspirin?” Or the ever popular, “I wish I could stay home all day and do nothing like you do.” Oh and I couldn’t forget the old adage, “You’re too young to be feeling like that!”
20. I like it when people say: “Just take it easy, I hope you feel better soon.” “It’s okay that you missed –insert event here–”
21. Something kind someone can do for me during a migraine attack is honestly, just leave me alone until I’m feeling better. I can’t handle someone constantly checking in, even if they mean well. Those close to me understand that if I have been cooped up in bed for 10 hours, I’m still fine, I’m just getting the rest that my body requires. Peep your head in to make sure I’m still breathing, quietly bring me a glass of water, and leave. That’s the best protocol.
22. The best thing a doctor has ever said to me about migraine is: “We will find a medication that works for you, and I am always just a phone call away.” And we did find a great medication! However, it’s still important to realize that I still struggle with migraines many days out of the month—this medication helps me attack a migraine when it begins (referred to as an abortive drug).
23. The hardest thing to accept about having migraine is that so much of my life has been taken from me. Living with this illness has wasted a huge part of my time, energy, and patience. It has destroyed friendships and opportunities. It has depressed me, guilt-tripped me, and hurt me emotionally. Migraine lives on after the recovery, because around every corner, it’s continues to lurk; you don’t know when it may jump out.
24. Migraine has taught me: 1. that no one understands you more than yourself. 2. Through pain there is growth, you will learn about yourself more and more through each attack. 3. Migraine is NOT who you are, it does not define you, you are more than your pain. 4. Never let a migraine make you feel guilty, nor blame yourself for your illness—it is not your fault, regardless of what anyone says. 5. Hold close those few individuals who really “get” what migraine is; don’t let those people go, because those are the people you will need when the going gets tough and it seems there is NO ONE on this planet who knows what a migraine is.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” This is a Buddhist proverb that I have always identified with, because I feel that, even though migraine is such a terrible, disabling illness, it might just be a blessing in disguise. There is a balance to everything in life; we must find the good in the bad. I have profoundly become more tolerant because of my battle withmigraine migraine—and I feel that this is good. I can endure, I am steadfast, I have a thirst for life. I will never give up.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Hang on, kid, it’s going to be a bumpy ride. But you’re going to get through it.”
27. The people who support me most are my mom and boyfriend, absolutely. Mom suffered migraines at my age, and never really overcame the disease until after pregnancy. My family and friends as a whole are mostly supportive and try their best to understand. It is difficult to understand what you have never experienced. My boyfriend has slowly, over the years, seen my illness in its gruesome details, I am thankful that he is there in my darkest hours.
28. The thing I most wish people understood about migraine is that migraine is truly debilitating. It’s not just a headache, and I am not “faking” my illness or my pain to get out of work, or an event, or a family gathering. Migraine has ruined many aspects of my life. Truthfully, I avoid the topic of migraine as much as I can. There is a stigma that surrounds migraine, which is why I’m joining the movement this month to bring awareness to migraines. People who live with this illness are humiliated, misunderstood, and pushed to by the side far too often. I’m writing this because I, too, am one of those misjudged, suffering wallflowers. But I have a voice, and it is important that I share it in hopes that others may identify and that I may educate.
29. Migraine and Headache Awareness Month is important to me because it raises a wonderful awareness to everyone else of something that I am intensely aware of every day of my life.
30. One more thing I’d like to say about life with migraine is: I don’t know what life is like without migraine; it affects every move I make. There is such a cause and effect that occurs while living with migraine, but ultimately, while the negative impact far outweighs the positive, I strive each day to find something good in my suffering, to see that little glimmer of good and be the best version of me that I can be, even through the pain. And it is my hope that other migraine or chronic pain sufferers can find that spark of good in life as well. Life is a beautiful blessing, and living in pain certainly blurs that beauty, but its still there. Sometimes its even clearer to us because we must fight to see it.

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.