30 Things Meme

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.

30 Things Meme

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.

30 Things Meme

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.

30 Things Meme

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.

30 Things Meme

My life with Migraine

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

1. My diagnosis is: chronic headache and chronic migraine
2. My migraine attack frequency is: daily in some form, my head is always hurting. Whether it’s just a little bit of pain to a full on crippling migraine.
3. I was diagnosed in: 2012
4. My comorbid conditions include: anxiety, ADD, and depression
5. I take 0 medications/supplements each day for prevention and 2 medications/supplements to treat an acute attack. I don’t have daily medication because I get 31 botox injections every 3 months.
6. My first migraine attack was: I’ve had migraines for as long as I can remember.
7. My most disabling migraine symptoms are: Unbearable pain, light and sounds, heat intolerance, fatigue, and nausea.
8. My strangest migraine symptoms are: heat intolerance
9. My biggest migraine triggers are: lights and sounds, smells, stress, lack of sleep, and certain foods
10. I know a migraine attack is coming on when: the inside of my ears start throbbing and hurting.
11. The most frustrating part about having a migraine attack is: not being able to function as a normal person and not being able to do fun things in my life with my friends.
12. During a migraine attack, I worry most about: why does this happen to me and can a migraine attack kill someone (I feel like my head is being crushed by lots of bricks)
13. When I think about migraine between attacks, I think: I’m probably going to get one because I thought about it. I’ll probably get one at the most inconvenient time.
14. When I tell someone I have migraine, the response is usually: Just take some Advil or ibuprofen. (those types of medicines do absolutely nothing for me)
15. When someone tells me they have migraine, I think: Is it really a migraine? I’m sorry you feel this way and I hope you don’t have them again.
16. When I see commercials about migraine treatments, I think: Those don’t work.
17. My best coping tools are: my little kitty cat, Chloe. Water, my ice cap, maxalt (medication).
18. I find comfort in: My cat, my bed, cool air, my camera, and wildlife.
19. I get angry when people say: it’s just a headache, you’ll be okay.
20. I like it when people say: Relax and lay down. You don’t need to come with us but we would like you too. I hope you feel better soon.
21. Something kind someone can do for me during a migraine attack is: be concerned but not too concerned. Get me water, understand that loud noises, smells and lights are extremely painful
22. The best thing(s) a doctor has ever said to me about migraine is: There are other options, we’ll figure this out.
23. The hardest thing to accept about having migraine is: there is no cure and no guarantee that they will ever go away.
24. Migraine has taught me: to hide my pain, to understand that even though it’s not a life threatening disease, it is still a disease and controls someones life.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I tend not to think about anything other than the pain I’m in.
26. If I could go back to the early days of my diagnosis, I would tell myself: Keep trying, keep surviving, keep going.
27. The people who support me most are: my mommy, my friends, and my cat
28. The thing I most wish people understood about migraine is: how debilitating it is and how painful it can be. How it controls my life.
29. Migraine and Headache Awareness Month is important to me because: it can educate others without migraine what migraines are all about. What it’s really like to have one and how it’s extremely hard to live a normal life when you have an attack.
30. One more thing I’d like to say about life with migraine is: when someone says they have a migraine, please don’t just think it’s just a headache. If they are truly having a migraine, respect that and honor their wishes, help them feel better, and try to help them relax. Once you know about migraines, try to help others become educated about migraines as well.

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.