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30 Things About My Migraine Experience

1. My diagnosis is: Migraine with visual aura

2. My migraine attack or headache frequency is: Every other day, lasting for a couple of days with postdrome lasting up to 2 or 3 weeks.

3. The first migraine attack or headache I remember was: I got a visual aura while working and thought I was going blind.

4. My pain levels range from: Mild to severe (6-10 out of 10)

5. I was diagnosed in: 2010

6. My comorbid conditions include: Depression

7. I take 1 pill each day for prevention (it works somewhat) and 1-4 pills to treat an acute attack

8. In addition to pain, other symptoms I experience include: Nausea, sensitivity to touch, noise, smell and light, fatigue, confusion, lightheadedness, irritability, moodiness, tooth- and earache.

9. Treatments I have tried include: Triptans, preventatives, stress relievers, muscle relaxants, NSAID’s, cannabis, dark room rest, cool air, sleep.

10. During a migraine attack or headache, I: Try to hide it, relax and drink lots of water. Sleep usually works best, but it’s not possible while I’m at work.

11. My migraine attacks or headaches are triggered or get worse when: it’s warm outside and when I move or do exercise, stress and eat sugar or MSG.

12. The most frustrating part about having migraine or a headache disorder is: the effect it has on my husband and not being able to do or eat most things.

13. Having migraine or a headache disorder causes me to worry about: my general and mental health.

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “okay” and look confused or feel sorry for me, or they tell me about their or someone else’s migraine story and we share helpful tips.

15. When I see ads or articles about migraine or headache disorders, I think: Maybe they can help me understand more about my condition.

16. My best coping tools are: sleeping or staying busy, depending on how fatigued I feel.

17. I find comfort in: knowing that there are so many people that experience what I do, and that my pain could’ve been way worse.

18. I get angry when people say: That I shouldn’t take a sick day for “just a headache”.

19. I like it when people say: That they understand or can imagine the pain, even if they don’t, because they’re at least trying to.

20. Something kind a person can do for me during a migraine attack or headache is: To not talk to or touch me and to make as little noise as possible.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: That he’ll help me find a treatment that works.

22. Having migraine or a headache disorder has affected my work life by: disabling me some days and slowing me down other days.

23. The hardest thing to accept about having migraine or a headache disorder is: that I can’t eat ice cream or enjoy the heat of the summer anymore without expecting a migraine.

24. Having migraine or a headache disorder has taught me: How to push through despite how I feel.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: “Throw glitter in today’s face.” Just having something that makes me smile helps me cope a little better.

26. If I could go back to the early days of my diagnosis, I would tell myself: To stop eating sugar altogether.

27. The people who support me most are: My husband and my parents.

28. The thing I most wish people understood about migraine or headache disorders is: That it’s more than just a headache or a “muscle thing” (yes, a pharmacist once said to me, sounding somewhat unsure, that it’s just a muscle thing)

29. Migraine and Headache Awareness Month is important to me because: It educates people about something most of us have a misconception about.

30. One more thing I’d like to say about migraine or my headache disorder is: That I hope they will find the cause(s) and a cure some day, and that people will take it as seriously as any other disabling diseases.

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30 Things

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. I have had chronic daily headache (CDH) for 38 years.
2. The first headache I remember is: that it came out of the blue while I was cleaning our new apartment. I was 28 years old and had never suffered from any kind of headaches before that.
3. After the headache started, my husband took me to the ER that night, and that was the first of many different times I was diagnosed.
4. My pain level fluctuates from mild to moderate to severe.
5. My typical pain level ranges from: 5 to horrific.
6. In addition to pain, my symptoms include: extreme tiredness, hyperactivity, irritability, stiff neck and shoulders, nausea, vomiting, cramps and diarrhea, vertigo, aphasia, AIWS, faintness, scintillating scotoma, imbalance, depression and anxiety, night terrors.
7. Treatments I have tried include: natural remedies, since I refuse to take the medications they prescribe, which rarely work and have terrible side effects and sometimes cause permanent neurological deficits. I have been offered opiates but don’t take them either because I am afraid of additions. I have had several CAT scans, MRI’s and MRA’s to rule out stroke or other neurological disease.
8. I use prayer and meditation and try to stay as positive as I can.
9. When the pain gets bad, I still do as much as I can, but rest when I have to.
10. The most frustrating part about having CDH is: Not being able to participate in normal life and losing friends because of it.
11. Because of CDH, I am prevented from being the person I was before I became disabled with migraine.
12. When I tell someone I have CDH, they don’t understand unless they also suffer from it.
13. When I see how little research and information exists on CDH, I wonder why there are so many awareness programs and funding programs for just about everything else BUT chronic migraine.
14. Having CDH has affected my entire life by taking away any hope for actually having one again.
15. Having CDH has affected by family life by: putting making my family sad.
16. The one word that best describes my experience with CDH is grief and hopelessness.
17. My best coping tools are: meditation and prayer.
18. I find comfort in my faith.
19. I get angry when people offer ridiculous remedies as if I haven’t tried everything in the book the last 30 plus years!
20. I like it when people say: I’m sorry you have to suffer like this; is there anything I can do to help?
21. Something kind someone has done for me in relation to CDH is to be patient with my limitations or wanted to be with me in spite of them.
22. The best thing a doctor has ever said to me about CDH is: “There is no cure for migraine; we aren’t even sure what causes it yet”. At least he was honest.
23. The hardest thing to accept about having CDH is that t has taken away my joy.
24. Having CDH has taught me just how strong and brave I can be.
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is “Do the best you can and leave the rest to God.”
26. If I could go back to the early days of my diagnosis, there is nothing I could have done differently.
27. The people who support me most are: My husband and daughter.
28. The thing I most wish people understood is that chronic complicated migraine is not just a headache, but an intense neurological storm that is accompanied by an excruciating headache.
29. Migraine and Headache Awareness Month is important to me because I still hold out hope that someone will pay attention.
30. One more thing I’d like to say about CDH is to the people that don’t suffer from it: If someone you love suffers like this, please be kind, helpful and do everything you can to educate yourself and everyone else about the disease.

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 About My Life With Migraines

This is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. My diagnosis is: chronic migraines
2. My migraine attack frequency is: Pretty much everyday I have some form of migraine symptoms – the severity varies from day to day.
3. I was diagnosed in: 2002
4. My comorbid conditions include: Bipolar type II, panic disorder w/o agoraphobia, anxiety, PTSD, C-PTSD, and thyroid hormone imbalance due to thyroid cancer/lobectomy of right lobe.
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack: I have been on a few prophylactic meds including Topamax and am currently testing out the efficacy of Effexor. I currently have prescriptions for 9 different medications used to treat acute attacks.
6. My first migraine attack was: 4/24/99
7. My most disabling migraine symptoms are: Severe nausea, vertigo, dizziness, disabling pain and muscle weakness.
8. My strangest migraine symptoms are: Aphasia, hypomania, Alice In Wonderland syndrome, food cravings, and chronic tinnitus in my left ear.
9. My biggest migraine triggers are: Marijuana smoke, emotional stress/trauma/stress-letdown, tannins, physical stress/trauma, insomnia, altitude changes, changes in barometric pressure, and temperature changes.
10. I know a migraine attack is coming on when: The Left Eye Twitch of Doom, an increase in sensitivity to smell, taste, sound, light, touch and temperature changes.
11. The most frustrating part about having a migraine attack is: I’ve had a moderate/severe migraine headache most days in the last 3 years – most of the time when they become intense the meds I have either don’t work or make me feel worse. Also having to go to the ER in an acute attack with intense symptoms and they aren’t able to give me any relief aside from rehydration via IV fluids.
12. During a migraine attack, I worry most about: Throwing up because it makes the pain and other symptoms 10x worse.
13. When I think about migraine between attacks, I think: When is the next one coming and how can I get to the ER without anyone to give me a ride.
14. When I tell someone I have migraine, the response is usually: Sympathy, apathy or skepticism.
15. When someone tells me they have migraine, I think: I’m so sorry that someone else experiences this disabling disease.
16. When I see commercials about migraine treatments, I think: Yeah, right, that’ll work. Not.
17. My best coping tools are: Cold packs, noise canceling headphones, dark and cool room, and antinausea meds.
18. I find comfort in: My horse and music
19. I get angry when people say: “Sorry you’re having a bit of a headache” or “It’s just a headache” or “You just need to do more cardio/eliminate gluten/corn/wheat, etc.” And my all time favorite: “Again?? That’s four days in a row!”
20. I like it when people say: “Let me turn the lights off for you and bring you some cold packs.”
21. Something kind someone can do for me during a migraine attack is: Understand that it’s not just head pain – nausea and dizziness are often more disabling for me.
22. The best thing(s) a doctor has ever said to me about migraine is: “You’re doing everything right.”
23. The hardest thing to accept about having migraine is: that I can’t depend on myself; I can’t support myself because I can’t work and I almost invariably let people down.
24. Migraine has taught me: not all pain is visible and everyone’s experience is different.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I have yet to find one. *Edit* “It’s the guilt of what reality has given me. Making sense of all mistakes and my stupidity, and when you’re sick you seem to think you’ve failed eternally.” ~ Blue October “Overweight”
26. If I could go back to the early days of my diagnosis, I would tell myself: Fight and advocate for yourself!
27. The people who support me most are: A few close friends and my horse.
28. The thing I most wish people understood about migraine is: I have no control over when the symptoms will become disabling – I may have just enough energy to do a couple of things in a day but then just completely crash afterwards.
29. Migraine and Headache Awareness Month is important to me because: It gives louder volume to fighting the stigma of living with migraine and let’s other sufferers know they aren’t alone.
30. One more thing I’d like to say about life with migraine is: Search for and take joy in the small things. Creating a small but meaningful life is the best thing for me. I’d also like to say that it is fucking exhausting trying to convince doctors of how much pain I’m in.

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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My migraine journey

Share your story! 30 Things Migraine and Headache Awareness MemeThis is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1. My diagnosis is: Chronic, Complex Migraine with TIA
2. My migraine attack frequency is: pretty much daily with at least 3-4 a week that keep me from normal activity
3. I was diagnosed in: 2005 officially. I have had headaches my entire life though
4. My comorbid conditions include: knife stabbing pains in base of head by neck, throbbing intense pain on top of head, Nausea , blind spots in vision, irritability, numbness on right side of body
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack: daily- blood pressure, anti anxiety , anti depressants and triptipans. To treat an attack- fioracette
6. My first migraine attack was: I believe in my teen years
7. My most disabling migraine symptoms are: unable to put words together and pain
8. My strangest migraine symptoms are: before major attacks hit I tend to yawn a rediculous amount and experience euphoria
9. My biggest migraine triggers are: barometric change and heat
10. I know a migraine attack is coming on when: Vision gets blurry, then blind spots, feel anxiety
11. The most frustrating part about having a migraine attack is: that I feel like a nuisance to my loved ones. Even though they are incredibly supportive to me, the guilt kills me! I think non migraine people do tend to not understand the severity of the pain and symptoms. Which in turn makes me feel the need to try to “push” through an attack to keep plans.
12. During a migraine attack, I worry most about: letting people down.
13. When I think about migraine between attacks, I think: I need to get as much as possible done between attacks to try to have some kind of life. I often push myself to hard which leads to another attack. Horrible cycle. My wonderful hubby gets to keep me from over doing it but it’s hard not to.
14. When I tell someone I have migraine, the response is usually: a look of “oh really, you mean headaches?”
15. When someone tells me they have migraine, I think: God bless them and their family
16. When I see commercials about migraine treatments, I think: they are a joke! They are part of the reason society doesn’t understand how TRUELY debilitating they are.
17. My best coping tools are:the love of my family and friends
18. I find comfort in: my dark, cold quiet room with lots of pillows and quilts!
19. I get angry when people say: ” just take some Advil and drink water, you’ll be fine”
20. I like it when people say: ” get some rest and we will take care of everything else”
21. Something kind someone can do for me during a migraine attack is: just to be understanding. To not get upset if I don’t answer calls or texts for a few days while I am dealing with it.
22. The best thing(s) a doctor has ever said to me about migraine is: I will stick with it until we get the right combo of MEDS and lifestyle to help you
23. The hardest thing to accept about having migraine is: the depression that goes with it and constant feeling of letting people down.
24. Migraine has taught me: I am not in complete control of my life.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: the serenity prayer… God grant me the serenity to accept the things I can not change, courage to change
The things I can and the strength to know the difference.
26. If I could go back to the early days of my diagnosis, I would tell myself: Relax, it’s gonna be a long journey.
27. The people who support me most are: my mom, husband, children and best friend
28. The thing I most wish people understood about migraine is: They are not predictable. They always seem to come at then worst time and no two migraines are ever the same.
29. Migraine and Headache Awareness Month is important to me because: I wish there was more research done to help people
30. One more thing I’d like to say about life with migraine is: As much as it appears to be exaggerated or convenient or a cry for attention: everyone suffers differently. Each person has their own ways of dealing with them and I can promise each person feels guilt with them. I wish society in general was better educated on them

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

Share your story! 30 Things Migraine and Headache Awareness MemeThis is a reader-submitted story. Want to share your 30 Things? Here’s how: Migraine & Headache Disorders 30 Things Meme

1) Chronic Migraine
2) menstrual migraines: about 7-10 days of 8/10 pain around the time of my cycle and sporadic migraines and tension headaches scattered throughout the rest of the month at 3-6 out of 10
3) age 5- the smell of cherry Hubba Bubba gum
4) 0-9
5) around 2012- a Family physician who was filling in for my regular physician dx me with migraines versus ongoing unexplainable “sinus pain/infections” that I was told was viral and all I could do was sleep it off.
6) Bipolar, ADHD, IBS, chronic fatigue and significant muscle soreness
7) 4 pills for preventative and 3 pills for acute attack
8) nausea, vomiting, vertigo, poor motor coordination, aphasia, confusion, sensory overload and integration issues, extreme fatigue, muscle soreness, sometimes aura such as partial blindness, not sure the term but my visual perception is skewed ex. The left side of a person’s face, sticks out and is
seen as lower than the right side of the person’s face,
it smells like something is burning, ongoing thoughts
of worry and obsessing over being powerless and
fears of not being able to come to the rescue..for ex/
if my 12yr old daughter breaks her arm at school
9) treatments tried: Reiki, prayer, Mindfulness, Japanese mint oil, listening to binaural/bilateral beats with headphones, electroconvulsive therapy for depression, later realizing the depression was secondary to the chronic migraines, with improving the effectiveness of preventative medication…with the significant decrease in chronic daily pain, the depressive symptoms were significantly decreased to the point of almost being eliminated
10) cold cloth, cool dark room, no noise, trying deep breathing, Triptan, 1000mg Naproxen
11) triggers: hormones/menstruation, smell/odours, foods, weather, stress, loud noises, fluorescent lights
12) worst part: feeling powerless at the time with not
being able to put to words, or explain what is going
on when I have an attack
13) biggest challenges: meeting family’s needs ex/making meals, housecleaning, a decrease and/or loss of income. I feel bad having to reschedule my clients on short notice (not as reliable and dependable as I’d like to be
14)”Drink more water”.
15)migraine commercials: “maybe there is hope”
16) setting realistic expectations of myself, acceptance of being human and flawed 🙂
17. Comforts: my dog being by me, my soft blanket with Aromatherapy fabric softener in it, my bamboo pillow, ceiling fan above me, windows open, Coconut juice on my night table
18) “stop being so lazy.” It’s all in your head.”
19) when I have to cancel and they are okay with it.
They tell me to “take care” and to call them when I
feel better
20) for them to bring me a cold wet cloth, glass of
water and to let me have my quiet in a cold dark room
21) best thing Doctor said, “it’s not a sinus problem; it’s a migraine
22) being compassionate towards myself, and keeping my goals realistic depending how I’m feeling
23) accept I have limits and that “I can not be everything to everyone”.
24) you have a neurological disorder- explain it to significant others who want to know more versus quietly suffering in pain
25) thank God the symptoms go through phases and are reversible (to the best of our knowledge)
26) accepting that presently migraines are not curable, but depends on fine tuning your lifestyle with preventative and abortive measures
27) supportive people in my life: those who have also experienced chronic pain
28) migraine is a neurological problem not a choice
29) headache awareness month- not only helps to educate myself but the community and society as a whole
30) migraine disorder has provided me with the opportunity to accept my “shadow” or “flawed” side and integrate it as one of many parts of my true/whole self

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