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Oigh – again today…..

This is a reader-submitted story.

1. Chronic Migraine – 33 years into this
2. 25/month average
3. 1994
4. Several kinds of Aura, Temporary blindness, Aphasia, Intense pain on left side, neck ache, hyper active prior to, depression, suicidal, does not respond to painkillers
5. Topomax, imitrex, cipralex, percacet, T3’s, magnesium, VitC
6. When I was about 10 years old
7. Blindness and not being able to think or speak. stroke like symptoms
8. burst of energy just before a big one
9. life
10. energy burst, I am happy
11. it dampens events, stops me from being the most I can be, Isolation from others
12. not being able to make it through the day, having to take too many pain killers
13. I don’t think about them between attacks. I’ve had enough
14. Indifference, cold, ignorance, stereotypes.
15. I test them and if they do, we bond, if they don’t, I call them out gently and educate
16. I get very very angry because it is usually BS stereotype building on a mass scale, then I write letters
17. Distraction, keeping myself extremely busy, dancing, art, socializing
18. Ice packs, my sons and a few close friends knowing the truth, my dogs
19. Stupid herbal remedies. A drop in the bucket. “Have you tried…….” “you won’t know unless you have tried”. I want to scream “have you had a horse kick you in the head and applied a leaf to stop the pain?!”
20. I’m sorry. I understand that that is very painful.
21. Accept me.
22. It’s not my fault. It’s okay to take more pain killers. What I have given you will not harm you. You don’t blame a diabetic for having to take insulin, so don’t blame yourself for what you have to take.
23. Untapped personal potential on a physical level
24. Patience, compassion, perseverance, intellectual stamina, empathy, wisdom, inner strength, spirituality, meditation, humility, acceptance.
25. This always ends. You’ve broken this many times. This monster does not win.
26. It’s not your fault. You do not cause this.
27. My migraine friends. My best friends. My parents now. My sons.
28. It is not a headache. It is a neurological brain disorder. It is IN the brain. Saying you have a migraine when you only have a headache is like saying you have epilepsy when you only have the shivers. Stop using migraine as your sympathy card. It is a hell card.
29. It is one more positive step towards bringing awareness and removing stereotypes. It gives a voice to those who have it.
30. There is no cause and there is no cure. It gets progressively worse for many people, myself included. So many people have been suicidal at some point in their life. There is so little hope in this disease with some 50% chance of cure like there is with other diseases. It is an unwanted marathon with no finish line and no reward. It’s not a headache …….compassion please.

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 My Life With Migraine

This is a reader-submitted story.

What’s it like for you to live with migraine?
I was diagnosed as being chronic, but have recently been re-diagnosed as transformed.
I usually have one migraine a month lasting 7-10 days.
I was diagnosed in 1991.
I usually am sensitive to light, sound, smells and I have tension in my shoulder, my left ear hurts and sometimes my eyes hurt.
I take six different kinds of medications as my preventatives, two different abortives, and I have seven different things I can take during the migraine.
My first migraine attack was while I was pregnant with my son in 1990.
My most disabling symptoms are the light sensativity, when my eyes hurt, smells, and noise.
My most disabling symptom is the light/eyes.
the strangest is my left ear hurts.
My biggest triggers are smells, especially perfume/cologne. When I forget to eat.
I can tell a migraine is coming; I start yawning a lot, I feel tired, I drink more liquids.
The most frustrating part of having a migraine is not having a room dark enough or cool enough or when your medications don’t work.
I worry most about my job, my income, and being able to pay my bills when I have a migraine.
I hope I don’t have another migraine for a long time so I can have a normal pay check.
people usually don’t say to much when I say I get migraines, especially at work. So I usually don’t share.
when someone shares with me they get migraines, I sympathize with them and usually share I do too.
When I see commercials, I get irretated because how they portray the people. They make it seem like migraines are not as debilitating as they are. People lose their jobs, homes, spouses, etc
MY best coping skill is knowing that I’m doing everything that I’m supposed to be doing.
I find comfort in knowing I’m not alone and I’ve made friends on Facebook support group.
I get angry when people suggest to me to just start over with all of my medications. Or when they say I take too much medication.
I like it when people express an interest in wanting to genuinely learn more about migraines.
Something kind someone could do for me when I have migraine is making sure I have food or something to eat.
The best thing my doctor ever said to me was they don’t have to worry about me abusing my pain meds.
The hardest thing to accept about migraine is you never know when they are going to hit you.
Migraines have taught me that having good health is priceless.
Love all, Trust a few, Do wrong to none-Shakespeare
I would tell myself to take care of myself, practice yoga more and meditate more.
I’m not sure how to answer who supports me. I guess it would be the people in the FB support group.
The thing I wish people understood about migraines are; it’s not a choice, they are real, we are not faking it, and there is real pain involved.
Migraine Awareness Month is important because it is our opportunity to bring awareness to the public.
Migraines are not a part of my life that I would have chosen. It seems like they have increased due to major life changes over the last five years. I would give anything to go back five years and have my health back and less stress. I feel I try my best to do what I’m suppose to do; eat right, get enough rest, try to avoid stress, etc. I don’t want to miss work anymore, (I want to be treated the same at work), I want a full paycheck to be able to pay my bills, I don’t want to struggle pay my bills anymore. I want to be able to have enough money to buy groceries. I need new glasses, but how do we get those when we cant pay all the bills or buy groceries. (This is on a single ingle income) These are all my concerns in my vicious circle; so scratch the stress.
This is Living My Life With Migraine

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 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.