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30 Things about My Migraine

Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. My diagnosis is: Transformed Migraine, Chronic Migraine and a bunch of other Migraine Types
2. My migraine attack frequency is: Every single minute of every single day, although it varies in intensity
3. I was diagnosed in: 2005
4. My comorbid conditions include: depression
5. I take 1____ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was a teenager, but I didn’t know I had migraines
7. My most disabling migraine symptoms are: the intense pain, the slowness of thought, and the nausea
8. My strangest migraine symptoms are: I can’t find the right words and often misspeak
9. My biggest migraine triggers are: Weather and odors
10. I know a migraine attack is coming on when: My eyes start to hurt and I have a problem finding words
11. The most frustrating part about having a migraine attack is: staying in bed and missing life
12. During a migraine attack, I worry most about: getting fired
13. When I think about migraine between attacks, I think: how long will this last
14. When I tell someone I have migraine, the response is usually: Oh, so do I or so does so and so.
15. When someone tells me they have migraine, I think: I’m sorry
16. When I see commercials about migraine treatments, I think: another thing to try, maybe this one is the key to a solution
17. My best coping tools are: just willing myself to get through whatever situation I am in when the pain gets intense
18. I find comfort in: finding activities and hobbies I can still do, I have taken up scrapbooking and genealogy since the migraines have been bad
19. I get angry when people say: Why don’t you go out on disability? (like it’s that easy)
20. I like it when people say: Are you feeling better?
21. Something kind someone can do for me during a migraine attack is: Not make me feel guilty if I have to cancel plans.
22. The best thing(s) a doctor has ever said to me about migraine is: Everything I know about treating migraines I learned by treating you. (BTW, he’s a general neurologist but he has helped me more than some of the best known headache specialists on the East Coast)
23. The hardest thing to accept about having migraine is: I can’t do the things I want to do.
24. Migraine has taught me: to be more sympathetic to others
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Cast your cares on the Lord and He will sustain you.
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a new doctor, now.
27. The people who support me most are: my doctor and my family.
28. The thing I most wish people understood about migraine is: there is a difference between daily migraine and a migraine that happens a few times a year. I know. I used to have just a few a year–it’s still difficult, but more manageable than a daily migraine.
29. Migraine and Headache Awareness Month is important to me because: people who want to be informed can be.
30. One more thing I’d like to say about life with migraine is: I still have hope that a treatment will be found that will change my life back to what it once was.

This is a reader-submitted story. 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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What doesn’t kill you only makes you stronger: My Life and the Reality of Chronic Severe Migraine Disease

Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. My diagnosis is: Chronic Severe Migraine with Episodic Hemiplegic Migraine
2. My migraine attack frequency is: lately about 3 times a week (with episodes usually lasting more than 24 hours)
3. I was diagnosed in: 2004
4. My comorbid conditions include: Depression; no other health challenges or issues
5. I take __3__ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: in 2ng grade; but I didn’t know it was a migraine until decades later, when describing the experience to my Neurologist at our first appointment, and he told me it was a migraine that in the 70’s they almost never diagnosed children with migraine. (My primary dr kept sending my for eye exams, thinking it was eye strain and I needed glasses. Finally, the optometrist said “he has 20/20 vision; stop bringing him here!”
7. My most disabling migraine symptoms are: Extreme fatigue; cognitive dysfunction and ultra sensitivity to smells
8. My strangest migraine symptoms are: constant cravings of certain foods like chocolate; and more chocolate!
9. My biggest migraine triggers are: cigarette smoke; flourescent lighting; strong colognes or perfumes;
10. I know a migraine attack is coming on when:
11. The most frustrating part about having a migraine attack is: it completely details my day, and often whatever was planned for the next day or so
12. During a migraine attack, I worry most about: how far behind I’ll fall yet again in my writing or other important tasks
13. When I think about migraine between attacks, I think: let me get done as much as I can before the next one comes along
14. When I tell someone I have migraine, the response is usually: Awww; I hope you feel better; try to get some rest.
15. When someone tells me they have migraine, I think: “you just don’t get it!”
16. When I see commercials about migraine treatments, I think: been there, done that!
17. My best coping tools are: just solitude and peace and quiet
18. I find comfort in: knowing that I’ve accomplished a lot in spite of the challenges migraine continues to present
19. I get angry when people say: “do you think it’s just stress?”
20. I like it when people say: I wish there was something I could do; let me know if you need anything
21. Something kind someone can do for me during a migraine attack is: just be understanding when I need to detach and just “be”
22. The best thing(s) a doctor has ever said to me about migraine is: regretfully, I can’t share anything good that a doctor has said to me
23. The hardest thing to accept about having migraine is: that despite how much I strive to manage it, I have NO real control over migraine disease.
24. Migraine has taught me: to maximize productivity and enjoy each day that I can
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “What doesn’t kill you only serves to make you stronger.”
26. If I could go back to the early days of my diagnosis, I would tell myself: buckle up and get prepared!
27. The people who support me most are: those few in my family that really get it and understand with empathy
28. The thing I most wish people understood about migraine is: it’s not just a bad headache; and its not going anywhere. It’s a reality in my life.
29. Migraine and Headache Awareness Month is important to me because: we need to raise awareness and bring attention to this as a real thing, not something to joke about in commercials, like one I just saw: “act like you have a mgraine”. Ugh!
30. One more thing I’d like to say about life with migraine is: It’s been life changing, in so many ways….but I’ve risen above self-pity and strive to remain focused on being the best I can be, as often and for as long as I can.

This is a reader-submitted story. 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 for Migraine and Headache Awareness: Share Your Story!

Share your story! 30 Things Migraine and Headache Awareness MemeRaise migraine and headache awareness by sharing your 30 Things! Here’s how: Instructions and Submission Form for 30 Things for Migraine and Headache Awareness

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

 

 

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30 Things About My Life With Migraine

Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

1. My diagnosis is: no true diagnosis, just intermittent migraines.
2. My migraine attack frequency is: 1-2/month (now much less than years ago–on great preventative treatment!)
3. I was diagnosed in: 2002 (7 years old)
4. My comorbid conditions include: —
5. I take __0__ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: when I was 7
7. My most disabling migraine symptoms are: stabbing, blinding pain behind one eye, unilateral aura
8. My strangest migraine symptoms are: numbness and tingling of fingers and tongue, aphasia (confusion and difficulty speaking)
9. My biggest migraine triggers are: cafeine, lack of sleep, skipping a meal, bright lights, pressure changes (weather/flying), nitrites/highly processed foods, hormones
10. I know a migraine attack is coming on when: visual aura for about 30mins, then the pain comes.
11. The most frustrating part about having a migraine attack is: it takes me out of work, school, and time with my family and friends.
12. During a migraine attack, I worry most about: making up for the responsibilities I’m missing out on
13. When I think about migraine between attacks, I think: I wonder when the next one will hit, and I hope it’s not today.
14. When I tell someone I have migraine, the response is usually: “oh wow I’ve never had a migraine before, what’s it like?” Or, if from my fiance, “what can I get for you to make this better?”
15. When someone tells me they have migraine, I think: I’m not alone, and when someone tells me they get aura symptoms, I feel encouraged to dive into what their aura presents as.
16. When I see commercials about migraine treatments, I think: wow, I wish my meds kicked in that fast. And, I with I could actually get back to real life on days with a migraine.
17. My best coping tools are: dark rooms, cool rags, sleep
18. I find comfort in: knowing that my family and friends support me in whatever it takes to manage this disorder
19. I get angry when people say: “it’s just a headache”
20. I like it when people say: “what can I do to help you feel better?” And “I get migraines too, I know what you’re going through”
21. Something kind someone can do for me during a migraine attack is: speak quietly, get me a tall glass of water, check on me periodically
22. The best thing(s) a doctor has ever said to me about migraine is: I am here for you and I want us to make this work.
23. The hardest thing to accept about having migraine is: there is something in my brain that I cannot control, even with all my effort in to control it.
24. Migraine has taught me: life isn’t always fair, but to embrace what you have and to feel grateful for the good days
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “it can’t last forever, right?”
26. If I could go back to the early days of my diagnosis, I would tell myself: we will figure out what your triggers are and we will make this work.
27. The people who support me most are: my family and my fiance
28. The thing I most wish people understood about migraine is: it isn’t just a headache and I can’t just “not think about it”
29. Migraine and Headache Awareness Month is important to me because: there aren’t a plethora of sufferers in this world, so for those of us who do suffer, it’s important for the rest of the world to have a grasp on what we’re going through when our days are shattered by this mind numbing disorder
30. One more thing I’d like to say about life with migraine is: it’s no fun to have to tell your best friends and family that you have to cancel plans or have to call into work. And just know that whenever we do have to do those things, we’re not faking and it hurts us far more than it hurts you, i promise.

This is a reader-submitted story. 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 Meme

Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme.

30 Things About My Life With Migraine

1. My diagnosis is: migraine without aura, chronic (i.e. daily)
2. My migraine attack frequency is: 6 – 7 times a week
3. I was diagnosed in: 2000-ish with migraines maybe twice a month
4. My comorbid conditions include: a) POTS / neurocardiogenic syncope / orthostatic hypotension (aka when I stand, my blood pressure falls and my heart races, resulting in fainting because of a screwy autonomic nervous system)
b) reflux/GERD
c) hypothyroidism
5. For prevention I’m trying Botox, plus one daily medication, plus one supplement (CoQ10.) I use 3 triptan medications to treat acute attacks although these only work 60% of the time.
6. My first migraine attack was: on a plane flying back from Ireland in 2000. In June 2015 my migraines worsened and by December 2015 they were daily.
7. My most disabling migraine symptoms are: severe nausea, vomiting, extreme pain in temples, painful sensitivity to noises, inability to think (brain fog)
8. My strangest migraine symptoms are: anything touching my skin hurts like rough sandpaper rubbing against me
9. My biggest migraine triggers are: bad weather and disrupted sleep
10. I know a migraine attack is coming on when: I have a sudden, extreme drop in energy.
11. The most frustrating part about having a migraine attack is: not being able to make my brain work – it interferes with everything I try to do on a practical level, but also my identity is tied to my intelligence & creativity which are often inaccessible.
12. During a migraine attack, I worry most about: being an imposition, letting others down, and not getting ill in public.
13. When I think about migraine between attacks, I think: I have to find something to prevent my being sick so often so I can resume my life – be a partner to Michelle, have fun with friends, dance, write, get a job to continue making a difference in the world, etc.
14. When I tell someone I have migraine, the response is usually: crickets in the awkward silence – most folks don’t seem to know what to say.
15. When someone tells me they have migraine, I think: ‘Oh NO!’
16. When I see commercials about migraine treatments, I think: I wish that worked for me…
17. My best coping tools are: Quiet (thank goodness for ear plugs), ice pack on head, lying down on something soft, cool air, sleeping.
18. I find comfort in: empathy from others, affection, understanding of loved ones, kindness
19. I get angry when people say: “You need to do better at getting a handle on this.”
20. I like it when people say: words of understanding & empathy or sympathy, even ‘you poor thing’ is better than silence.
21. Something kind someone can do for me during a migraine attack is: keep things quiet, cool, and bring me an ice pack.
22. The best thing(s) a doctor has ever said to me about migraine is: I know this is horrible for you.
23. The hardest thing to accept about having migraine is: it sucks there is no cure… I would do anything to end this.
24. Migraine has taught me: to take advantage of energy when I have it and be grateful when I’m not so ill I have to lie flat.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I know this will ease up eventually.
26. If I could go back to the early days of my diagnosis, I would tell myself: save more money!
27. The people who support me most are: My wife Michelle & and my best friend Robin
28. The thing I most wish people understood about migraine is: there is very little you can do about it, it is not in your control.
29. Migraine and Headache Awareness Month is important to me because: maybe awareness will bring funding which will bring a cure
30. One more thing I’d like to say about life with migraine is: Every time I have an actual good day, without a migraine, I hope that somehow I’m healed and can return to life… only to be crushed with disappointment. Being so sick every single day is one of the hardest things I’ve ever endured.

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