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My 30 Things

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: nearly every day
3. I was diagnosed in: 2012
4. My comorbid conditions include: Ehlers-Danlos Syndrome, which has also led to dysautonomia, GERD, IBS, panic disorder, and body-wide joint issues
5. I take propranolol, verapamil, B2, CoQ10, Prozac, & Magnesium each day for prevention, and Frova, Zofran, Antivert, & Xanax to treat an acute attack
6. My first migraine attack was: as a young child, we now think I had abdominal migraines nearly from birth.
7. My most disabling migraine symptoms are: vertigo & brain fog
8. My strangest migraine symptoms are: olfactory hallucinations
9. My biggest migraine triggers are: lights — bright, fluorescent, or blinking
10. I know a migraine attack is coming on when: my vision gets wonky
11. The most frustrating part about having a migraine attack is: never knowing when they’re going to happen
12. During a migraine attack, I worry most about: not freaking out my kids
13. When I think about migraine between attacks, I think: um… is there a between attacks?
14. When I tell someone I have migraine, the response is usually: 50% some idiotic suggestion for drinking vinegar or some other ‘cure,’ 25% sympathy/empathy, 25% suck-it-up
15. When someone tells me they have migraine, I think: Oh you poor thing!
16. When I see commercials about migraine treatments, I think: Right. Treatments work that well without nasty side effects. NOT.
17. My best coping tools are: distraction, Netflix, cuddles, ice packs
18. I find comfort in: soft dark fuzzy
19. I get angry when people say: If only you would…
20. I like it when people say: What’s that like for you?
21. Something kind someone can do for me during a migraine attack is: point out that I should grab an ice pack & take some meds
22. The best thing(s) a doctor has ever said to me about migraine is: I will not give up on you.
23. The hardest thing to accept about having migraine is: there is no cure
24. Migraine has taught me: not to make plans that I can’t unmake in a hurry
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I don’t really have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: Go see a decent doctor in your 20’s you idiot!
27. The people who support me most are: my husband and my kids
28. The thing I most wish people understood about migraine is: it can steal your life, and there is no cure
29. Migraine and Headache Awareness Month is important to me because: I don’t think enough people understand how nasty this disease is and how many people it impacts
30. One more thing I’d like to say about life with migraine is: Migraine doesn’t just affect those of us with the disorder, it also has profound impacts on our family members, friends, and other caregivers

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 Things About Vicki’s Migraines

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: It varies; 12-20 days a month; sometimes more, but never less
3. I was diagnosed in: Junior high school; onset of menses
4. My comorbid conditions include: Prediabetes and hypoglycemia
5. I take ___zero_ medications/supplements each day for prevention and ____one medications/supplements to treat an acute attack
6. My first migraine attack was: Over 30 years ago
7. My most disabling migraine symptoms are: Pain; nausea and visual disturbances
8. My strangest migraine symptoms are: Numbness and tingling in my extremities
9. My biggest migraine triggers are: Monthly menstruation; lack of sleep and bright lights and loud noises 10. I know a migraine attack is coming on when: My neck is sore, a dull ache begins in my head or my extremities begin to feel numb and, without exception, every month before my period begins
11. The most frustrating part about having a migraine attack is: My inability to stop it and how it limits my ability to participate in daily life
12. During a migraine attack, I worry most about: How bad the pain will be and how long it will last
13. When I think about migraine between attacks, I think: How long before the next one
14. When I tell someone I have migraine, the response is usually: Understanding and concern
15. When someone tells me they have migraine, I think: Do you really?
16. When I see commercials about migraine treatments, I think: Will they benefit me? I am having my first Botox treatment for migraine tomorrow morning!
17. My best coping tools are: Rest, a dark room and Maxalt!
18. I find comfort in: Maxalt! And knowing that no matter how bad the pain is, my head is not, like I used to think, just going to explode and I will die!
19. I get angry when people say: Again, really?
20. I like it when people say: Can I do anything to help? and Go lay down, I’ll take care of everything
21. Something kind someone can do for me during a migraine attack is: Just let me do what I need to do to get through it
22. The best thing(s) a doctor has ever said to me about migraine is: Your MRI is clear, you do not have MS like I first suspected
23. The hardest thing to accept about having migraine is: The feeling of helplessness and no definitive reason why
24. Migraine has taught me: I am very lucky, my condition is manageable
25. The quotation, motto, mantra, or scripture that gets me through an attack is: That which does not kill us makes us stronger
26. If I could go back to the early days of my diagnosis, I would tell myself: This is going to be one of many crosses to bear, be grateful you are still around to bear them all
27. The people who support me most are: My husband, children and my best friend
28. The thing I most wish people understood about migraine is: YES, it hurts that bad!
29. Migraine and Headache Awareness Month is important to me because: It helps me feel validated about my condition; it is an important and REAL condition
30. One more thing I’d like to say about life with migraine is: It is a very emotional condition. It can take its toll mentally and rob you of everyday moments. But, as frustrated and helpless as I sometimes feel, I never stop looking for ways to improve my quality of life, reduce my number of headache days per month, or express gratitude that my condition is not life threatening or terminal. So many people face tragedy and life changing diagnoses on a daily basis.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 Things About My Life With Chronic Migraines

This is a reader-submitted story.

My diagnosis is: Chronic Migraine

My migraine attack frequency is: 18 per month on average.

I was diagnosed with migraines in 1986 and chronic migraines in 2006

My comorbid conditions include: fibromyalgia

I take 2 medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack. Currently.

My first migraine attack was: as an 8 year old girl.

My most disabling migraine symptoms are: the pain, the nausea, the fatigue and aphasia.

My strangest migraine symptoms are: my teeth will hurt and I can’t seem to focus my eyes on anything.

My biggest migraine triggers are: strong odors or tobacco smoke, bright lights, lack of sleep and loud noise.

I know a migraine attack is coming on when: I get super cranky.

The most frustrating part about having a migraine attack is: how it takes over my entire body, forcing me to put everything else on hold and there is very little I can do about it.

During a migraine attack, I worry most about: the pain. I know it will eventually let up but I don’t know if that will be a few hours, a few days, or a couple weeks. Still, part of me still worries that one day it will start and never end.

When I think about migraines between attacks, I think: I sure hope it doesn’t happen today.

When I tell someone I have migraines, the response is usually: sympathetic.

When someone tells me they have migraines, I think: Yes, so then you know. Then I start wondering about the details: how frequent, triggers, do they have a good doc, how do they treat, etc.

When I see commercials about migraine treatments, I think: they make it sound much easier and more dependable than it actually is.

My best coping tools are: distractions and laughter.

I find comfort in: my hubby, my pets, my home, my loved ones, my fellow migraineurs.

I get angry when people say: you just need to (fill in the blank with crazy random suggestions).

I like it when people say: just let me know if you need anything.

Something kind someone can do for me during a migraine attack is: be patient as I struggle to speak and bring me food.

The best thing(s) a doctor has said to me about migraine is: well it was what was done, or not done – I’ve never had a doctor tell me there is nothing more they could do for me.

The hardest thing to accept about having migraines is: how much it has limited what I can do.

Migraines have taught me: to be more aware of what my body is telling me.

The quotation, motto, mantra or scripture that gets me through an attack is: breathe, breathe, breathe.

If I could get back to the early days of my diagnosis, I would tell myself: to find a migraine specialist NOW.

The people who support me most are: my hubby and my mom.

The thing I wish most people understood about migraine is: that they are extremely complex AND chronic migraine is different than episodic migraine.

Migraine and Headache Awareness Month is important to me because: many people assume they know about migraines because it is so common. But there is a lot of misinformation out there along with a general lack of understanding of the complexity and severity of the disease. Knowledge is power.

One thing I’d like to say about life with migraine is: that it’s doable. It’s horrible but it’s doable.

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 things

This is a reader-submitted story.

1. My diagnosis is: migraine.
2. My migraine attack frequency is:1-5 times a week. They have been every day, and have had months without one.
3. I was diagnosed in: around 2004
4. My comorbid conditions include: nothing diagnosed. Have joint problems, suspected hernia, tender trigger points, muscle cramps, crushed nerve damage on left shin from a fall, acid reflux.
5. I take __0__ medications/supplements each day for prevention and __2 otc__ medications/supplements to treat an acute attack
6. My first migraine attack was: I was around 21
7. My most disabling migraine symptoms are: pain, nausea, light sensitivity, brain fog.
8. My strangest migraine symptoms are: burning muscles during an acid reflux migraine.
9. My biggest migraine triggers are: stress, smells, sounds, lights
10. I know a migraine attack is coming on when: I can’t concentrate or get anything done.
11. The most frustrating part about having a migraine attack is: loss of productivity. It’s like my life is leaking away and I can’t stop it.
12. During a migraine attack, I worry most about: my job and future
13. When I think about migraine between attacks, I think: if I eat good enough and do everything right maybe I won’t have another one.
14. When I tell someone I have migraine, the response is usually: Too much sympathy. I hate people feeling sorry for me. I just don’t want them to feel like they are being ignored.
15. When someone tells me they have migraine, I think: bummer! Hate those!
16. When I see commercials about migraine treatments, I think: I don’t watch tv, but can imagine I would be skeptical and hear the disclaimers louder than the promise.
17. My best coping tools are: ice/heat, sunglasses, ear plugs (can’t always use them), sleeping when can, isolation.
18. I find comfort in: my bed with all lights shut out.
19. I get angry when people say: n/a: I can’t afford anger.
20. I like it when people say: n/a
21. Something kind someone can do for me during a migraine attack is: leave me alone, and please no strong odors or loud noises.
22. The best thing(s) a doctor has ever said to me about migraine is: n/a. Don’t go to doctors much.
23. The hardest thing to accept about having migraine is: loss of my time
24. Migraine has taught me: anger has no positive contribution.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:I will get better. I will beat this.
26. If I could go back to the early days of my diagnosis, I would tell myself: look closely at the food manufacturing process.
27. The people who support me most are: my sup and my friend.
28. The thing I most wish people understood about migraine is: they can vary a lot between people and even time to time for the same person.
29. Migraine and Headache Awareness Month is important to me because: some people are becoming aware and more considerate about scents.
30. One more thing I’d like to say about life with migraine is: somehow, some way I will beat this!

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 things meme

This is a reader-submitted story.

1. My diagnosis is: Chronic Intractable Migraine, New Daily Persistent Headache
2. My migraine attack frequency is:I have some level of headache daily
3. I was diagnosed in: 1997
4. My comorbid conditions include: dysautonomia
5. I take __3__ medications/supplements each day for prevention and _5___ medications/supplements to treat an acute attack
6. My first migraine attack was: In 1993, became chronic on 10/28/1997
7. My most disabling migraine symptoms are: Pain and inability to speak= aphasia
8. My strangest migraine symptoms are: hallucinations
9. My biggest migraine triggers are: Loud Noises, flashing lights, and eating anything with Nitrites.
10. I know a migraine attack is coming on when: I start of see a lot of spots
11. The most frustrating part about having a migraine attack is: I never know how I will feel from day to day.
12. During a migraine attack, I worry most about: not being able to fix it or letting others down
13. When I think about migraine between attacks, I think: I really don’t like this
14. When I tell someone I have migraine, the response is usually: Mixed- some are supportive and understanding, some are not. I also hate it when they ask me if I have tried such and such.
15. When someone tells me they have migraine, I think: I’m sorry
16. When I see commercials about migraine treatments, I think: Really, if only it were that easy to get rid of it.
17. My best coping tools are: faith, distraction, reading, talking or curling up with my dog.
18. I find comfort in: knpwing I am not alone
19. I get angry when people say: “Have you tried X, it cured my cousin’s migraines.” Just pray
20. I like it when people say: I know it is rough, but you can make it through.
21. Something kind someone can do for me during a migraine attack is: Distract me and just be with me
22. The best thing(s) a doctor has ever said to me about migraine is: We are going to keep trying until we find something to break the bad migraines.
23. The hardest thing to accept about having migraine is: Mine are chronic and I never know how I will feel from one day to the next. I hate having to cancel plans at the last minute.
24. Migraine has taught me: Never to give up.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “it is ok, you can make it. “Come unto me all who labor and are heavy laden, for my yoke is easy and my burden is light and you will find rest for your soul”
26. If I could go back to the early days of my diagnosis, I would tell myself: Things will get better!
27. The people who support me most are: My family and friends
28. The thing I most wish people understood about migraine is: This is a disease. It is not “just a headache/” I am not making it up. I am doing my best
29. Migraine and Headache Awareness Month is important to me because: it gives me hope
30. One more thing I’d like to say about life with migraine is:.It is never dull

MHAMgiveawayReader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.