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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 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.

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My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine both with and without aura
2. My migraine attack frequency is: Four to five per week
3. I was diagnosed in: circa 1990
4. My comorbid conditions include: Reunaud’d syndrome, fibromyalgia, IBS
5. I take five medications/supplements each day for prevention and four medications/supplements to treat an acute attack
6. My first migraine attack was: somewhere around 1983
7. My most disabling migraine symptoms are: sensitivity to light and scents, and pain.
8. My strangest migraine symptoms are: when my hair hurts and when half of my face and head feel hugely swollen (when they aren’t). Oh, and I crave cold food.
9. My biggest migraine triggers are: SUNLIGHT, lack of sleep, barometric pressure changes (usually when it drops, but any change can be a trigger), dehydration, and many smells (onions and perfumes are big ones) and any kind of flashing or strobing lights.
10. I know a migraine attack is coming on when: my vision blurs and I get nauseated.
11. The most frustrating part about having a migraine attack is: how it limits my activities.
12. During a migraine attack, I worry most about: what my husband is having to do for me because I can’t.
13. When I think about migraine between attacks, I think: how hard it is to find a cure because everyone’s migraines are so different.
14. When I tell someone I have migraine, the response is usually: “I get them, too.” I’m amazed at how many people have them.
15. When someone tells me they have migraine, I think: “You poor soul,” and I wonder if there’s anything I can help them with.
16. When I see commercials about migraine treatments, I think: I wonder if it’ll really make a difference. Then I wonder if my insurance will cover the likely high price of the treatment.
17. My best coping tools are: A darkened room, my feather pillow, ice pack, and audiobooks.
18. I find comfort in: my husband, PJs, and my bed.
19. I get angry when people say: You have ANOTHER headache?
20. I like it when people say: They understand.
21. Something kind someone can do for me during a migraine attack is: different things at different times, really. The biggest help is when someone (my husband, usually,) just keeps my glass full for me so I don’t have to leave my dark room.
22. The best thing(s) a doctor has ever said to me about migraine is: I can help you.
23. The hardest thing to accept about having migraine is: how life-limiting they are.
24. Migraine has taught me: to appreciate little things.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I dam not really have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: it’ll get worse before it gets better, and to avoid narcotics whenever possible – in the long run, they don’t help at all.
27. The people who support me most are: my husband and my daughter.
28. The thing I most wish people understood about migraine is: they’re different from “regular” headaches.
29. Migraine and Headache Awareness Month is important to me because: it helps spread the word about migraine.
30. One more thing I’d like to say about life with migraine is: I hope my friends don’t give up on me. One day, I hope to have a life without headaches.

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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Migraine & Headache Bloggers’ 30 Things

Bloggers who have shared their 30 Things About Life With Migraine on their own blogs:

Fellow Migraine.com writers who have shared their 30 things:

Did I miss someone? Please leave a comment with the URL and I’ll add it to the list! (These are links to responses posted on other websites. If you’ve submitted your response on The Daily Headache, you can find it here.)

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30 Things meme

This is a reader-submitted story.

1.My diagnosis is: Intractable chronic migraines.
2.My migraine frequency: 3-4 days every week.
3. Was diagnosed in: Officially sometime in 1997.
4. My co-morbid conditions include: Hydrocephalus, with multiple shunt revisions, the last surgery was in 2004, when shunt was removed.
5.I take 5 medications/supplements each day for prevention and 9 medications/supplements to treat an acute attack.
6.My first migraine attack was: Can’t remember the exact date, but it was several years before the official diagnosis. Maybe 1993, 1994.
7.My most disabling migraine symptoms are: pain, nausea, light sensitivity, sensitive to smells and noise.
I feel like if I move I could vomit. Nurses don’t understand the light “sensitivity”. I Hate that terminology. It’s more like photophobia.
8.My strangest migraine symptoms are: I feel like every nerve in my body is exposed. I try to explain that it’s more than just a headache. But nobody believes me.
9.My biggest migraine triggers are: My migraines started after my first shunt revision in 1993, before that no headaches. Other triggers, weather changes is the big one. A strange one that I just recently noticed is onions cooking on the stove. The smell is too strong.
10. I know a migraine attack is coming on when: I don’t get aura’s. I usually always have some sort of mild headache pain, but when the nausea kicks in I know I better start with my anti nausea meds or its all over. I can go from a pain of 2-3, to 9-10, in 30 minutes at times . Other times I can have a mild headache for days that I’m treating at home before I have to go in for injectons, or for my infusion protocol.
11.The most frustrating part about having a migraine attack is: Wondering if this one will last 2-3 days, or if it’s going to last 2-3 weeks. Wondering what comments the nurses are going to make when I get to the infusion center.
12.During a migraine attack, I worry most about: Just praying that the meds work, so that the pain will at least be bearable, and I won’t vomit, and maybe I can at least get something on my stomache to stop the spiraling.
13 When I think about migraine between attacks, I think: Thankful that I don’t have one today. Each day is a gift, it’s up to you how you use it. I don’t dwell on my migraines when I don’t have them. Yes, they are a part of my life, but they don’t control my life
14.When I tell someone I have a migraine, the response is usually: Oh I’m so sorry, make sure you drink plenty of water. Call if you need something.( and then I usually don’t hear from them until my headache is over.) It’s like I have the plague or something.
15.When someone tells me they have a migraine, I think: Oh, I am so sorry! What can I do for you? My heart truly aches for them.
16.When I see commercials about migraine treatments, I think: I wish that would work for me.
17.My best coping tools are: Strong support system, faith, I like to go in a dark room, I do use a headset with piano music when I go in for infusions to drown out the noise of the IV, Nurses etc. Believe it or not, when I don’t have a headache, I don’t talk about them, and even when I have mild headaches I choose to not too about it. To not give it power, the more you talk about it, the more you become focused on the pain. I’m not saying to never talk about it. I m just selective.
18.I find comfort in: dark rooms, quiet rooms, warm blankets, soothing music ,(depending on pain level).
19.I get angry when people say: it’s just a headache.
You were in yesterday? Didn’t the meds help? Do you plan on coming in tomorrow too?
Why are you crying? Why do you need the lights off , you sat out in the waiting room for 45 minutes and the lights were on out there?
You have 30 seconds left before I can give you your med. I have every right to give you your med late if I want to.
20.I like it when people say: I can’t imagine living in the amount of pain you do every day.
Every time I see you you always have a smile on your face , and you never complain.
21.Something kind someone can do for me during an attack is: A friend once drove 2 hours just to sit with me during an attack that lasted 2 weeks. She brought soup, took me to an appt. Etc. Was nice to just have someone there.
22.The best thing a doctor has ever said to me about migraines: I believe you!!
23.The hardest thing to accept about having migraines: I had to go on disability, worked as a nurse for 10+ years. Loved my job. Miss my job.
24.Migraine has taught me: Perseverance.
25.The quotation,motto, mantra, or scripture that gets me through an attack: This too shall pass.
26.If I could go back to the early days of my diagnosis, I would tell myself: Hang in there. You are strong enough. You can do this. God has a plan for your life.
27.The people who support me most are: My best friends, Karen, LeAnn, Sheila, friends from church, my primary physician, family.
28.The thing I wish most people understood about migraine: Its so much more than just a headache, and what works for your headaches doesn’t necessarily work on mine.
29.Migraine and Headache Awareness Month is important because: So many people don’t understand and have misconceptions about migraines.
30.One more thing I would like to say about life with migraine is: As bad as some days get, the saying ” That which does not kill you makes you stronger” is true. Hoping for a cue, but have accepted them as a part of my life.

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.