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30 Things About My Migraines

June 15, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: Chronic Daily Headache, Chronic Migraine, cervical dystonia.
2. My migraine attack frequency is: 1-2 times a week.
3. I was diagnosed in: 2002
4. My comorbid conditions include: Depression, IBS, GERD
5. I take 4 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack
6. My first migraine attack was: I was 12.
7. My most disabling migraine symptoms are: The pain, the light sensitivity, the inability to think clearly, to know how to fix it, to function, to do anything but cover my face in the dark.
8. My strangest migraine symptoms are: Olfactory hallucinations, smoke specifically, feeling like my hair hurts.
9. My biggest migraine triggers are: hormones, barometric pressure, strong smells – specifically mulch and men’s after shave.
10. I know a migraine attack is coming on when: The pain feels a certain way behind one of my eyes.
11. The most frustrating part about having a migraine attack is: Losing an entire day – or two, or three…
12. During a migraine attack, I worry most about: Being lazy and unlovable. Losing my job. Never being healthy again.
13. When I think about migraine between attacks, I think: HURRY UP and do all the things you want to do and live and create and laugh before the beast returns.
14. When I tell someone I have migraine, the response is usually: Quite sympathetic, fortunately. Many say they can’t imagine what it’s like, unfortunately some have also experienced migraine as well.
15. When someone tells me they have migraine, I think: I feel deflated. I really hate that other people have to go through this.
16. When I see commercials about migraine treatments, I think: HA! HAHAHAHAHA! Then I throw my computer out the window.
17. My best coping tools are: My partner, my sense of humor, ice packs, tv on my laptop, dark rooms, my dog.
18. I find comfort in: knowing the migraine is subsiding when I feel well enough to embroider again!
19. I get angry when people say: “So your head hurts?”
20. I like it when people say: “would you like me to turn off the light?”
21. Something kind someone can do for me during a migraine attack is: Swap out my ice pack, not get sick of me!
22. The best thing(s) a doctor has ever said to me about migraine is: “Let’s try to keep you out of the ER.”
23. The hardest thing to accept about having migraine is: I’m no longer dependable.
24. Migraine has taught me: A little bit of self-forgiveness.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: No punishing thoughts.
26. If I could go back to the early days of my diagnosis, I would tell myself: You need more patience, girl.
27. The people who support me most are: My wonderful partner.
28. The thing I most wish people understood about migraine is: It’s not just a headache, it’s not an excuse, and it’s not something you can grit your teeth and work through. I can smile and fake my way through a great deal of pain, but I am not “lucky” for having a day off from a migraine, or “flying-high” from ER drugs. I’m exhausted, nauseous, hung-over, and worried about being fired.
29. Migraine and Headache Awareness Month is important to me because: The most important thing is right there in the title – Headache AND Migraine – just spreading the knowledge that headaches and migraine are two different things is so important!
30. One more thing I’d like to say about life with migraine is: I am always thankful and never forget for a moment how lucky I am to have so much care and support in my life.

Reader-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.

30 Things Meme

Turning a corner?

June 1, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: Chronic migraine
2. My migraine attack frequency is: decreasing
3. I was diagnosed in: 2002 (with chronic. I’ve had migraines for as long as I can remember)
4. My comorbid conditions include: Supraventricular Tachycardia, Poor circulation, Kidney stones
5. I take __2_ medications/supplements each day for prevention and __3_ medications/supplements to treat an acute attack
6. My first migraine attack was: If I could remember, I would tell you.
7. My most disabling migraine symptoms are: Head pain, nausea, sensitivity to light, metallic sounds in ears
8. My strangest migraine symptoms are: Metallic sound in ears. Itchiness.
9. My biggest migraine triggers are: Weather, hormones, MSG
10. I know a migraine attack is coming on when: I start to get tunnel vision and my auditory system is off. And there’s a certain achiness in my neck to start.
11. The most frustrating part about having a migraine attack is: Not being able to concentrate on anything.
12. During a migraine attack, I worry most about: What I’ve missed that day at school/work/in life
13. When I think about migraine between attacks, I think: “The worst. I just want to live.”
14. When I tell someone I have migraine, the response is usually: Either “Oh I get headaches too” or “I can’t even imagine”
15. When someone tells me they have migraine, I think: “Explain it to me. Is it really a migraine? Or do you just get a bad headache?”
16. When I see commercials about migraine treatments, I think: “Oh, that’s hilarious.”
17. My best coping tools are: Hot shower. Icepack. Darkness. Fuzzy socks. Big sweatshirt. Gatorade.
18. I find comfort in: A giant sweatshirt. The dark. The fact that I’m not alone.
19. I get angry when people say: “have you tried Excedrin migraine? I’ve heard that gets rid of migraines in like, 30 minutes”
20. I like it when people say: “I can’t even imagine what you’re going through. Can I do anything to help you?”
21. Something kind someone can do for me during a migraine attack is: Do anything for me that I would normally have to get out of bed to do myself. I.e. refilling water, getting an icepack
22. The best thing(s) a doctor has ever said to me about migraine is: We can try all different things instead of upping your medication. Whatever you’re comfortable with. The are a lot more options out there than there used to be.
23. The hardest thing to accept about having migraine is: That there are some variables I can’t control, and there will be times where despite my best efforts, I’m still going to have a migraine.
24. Migraine has taught me: How to self advocate and push through. But also when I need to give myself a rest.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Just keep swimming.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t just take another pill. Look for different treatments and different ways to help yourself feel better.
27. The people who support me most are: My mother. My best friends.
28. The thing I most wish people understood about migraine is: Every migraine is different. Sometimes I can push through the pain and do work and pretend to be normal, but some days, I’m just so disabled by the pain that there’s nothing I can do except curl up into a ball and try to freeze my head.
29. Migraine and Headache Awareness Month is important to me because: Too many people don’t understand the difference between a migraine and a bad headache.
30. One more thing I’d like to say about life with migraine is: As painful as it’s been, having migraine has formed me into the person I am today. And I’ve only become stronger because of it.

30 Things Meme

My life with Migraine

June 1, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is:
Migraine

2. My migraine attack frequency is:
approximately 2-10 days per month

3. I was diagnosed in:
I can’t remember. I’ve had migraines since my mid teens and have been officially diagnosed for at least ten years.

4. My comorbid conditions include:
depression, anxiety, fatigue

5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack
I am not currently taking any preventative medication or supplements for prevention although I have tried many in the past. All the preventative medication’s side effects were too debilitating for the current frequency of my migraines. I have not had much success with supplements but I still give new things a try occasionally when I read about them.

6. My first migraine attack was:
The first one I remember was at 16 but I suspect there were earlier instances since I was considered a “sickly” kid and was in bed fairly frequently with sort of mysterious symptoms.

7. My most disabling migraine symptoms are:
pain in the eye socket and back of the neck, nausea, dizziness, mild aphasia, trouble thinking clearly, extreme sensitivity to light, noise and smells

8. My strangest migraine symptoms are:
extremely pale with dark circles under my eyes with one eye drooping half closed. Trouble thinking of and selected the right words. shaking, dizziness, frequent urination, desire to eat salty foods – boiled egg whites, Lay’s potato chips and a coke are my go to post migraine meal.

9. My biggest migraine triggers are:
menstrual cycle, weather changes, sleep disruptions, stress, bright or flashing lights, exertion, smoke or fragrances, foods – caffeine, alcohol, artificial sweeteners, yogurt, oranges, legumes, processed meats or foods like top ramen

10. I know a migraine attack is coming on when:
lights seem too bright, trouble finding the right word, stuffy nose, stiff neck, a buzzy “migrainey” feeling that is hard to describe, inexplicable grouchy/snappiness or exceptionally emotional feeling for no reason

11. The most frustrating part about having a migraine attack is:
not knowing how long it will last, worrying about whether the drugs will work, worry about missing work, guilt for not being able to whatever was planned that day, guilt that I’m not being a good wife, friend, etc., shame that I somehow didn’t manage things well and caused the attach to happen.

12. During a migraine attack, I worry most about:
Being fired from my job, extreme worry that my increasing number of migraines, and their increasing duration, means I may develop chronic daily headache.

13. When I think about migraine between attacks, I think:
I try to think very positive between attacks so I think about my migraine management techniques working. For the past few years I’ve been thinking about the hope that menopause will decrease my migraines and my day to day life won’t be so impacted. I think about being a better wife during the pain free days to make up for the days when I am in pain and not as tuned in or physically or emotionally available.

14. When I tell someone I have migraine, the response is usually:
“I’m sorry to hear that.” “I have a _____ who has migraines.” “Have you tried______?”

15. When someone tells me they have migraine, I think:
I hope that they really have headaches and have never had to deal with a real migraine. For most of my life I have tried to keep my migraines a secret because I was embarrassed, felt weak, was worried about people’s reactions so now, I think that the more we’re out of the closet about migraines and the more we take the opportunity to talk to people and educate when asked, the better for all of us.

16. When I see commercials about migraine treatments, I think:
I wish that product had worked for me. This gives people the mistaken impression that if I’d just take that pill, everything would be fine. I’m glad there is increased awareness about migraines and am happy that pharmaceutical companies have realized there is money to be made in treating migraines and so are doing R&D.

17. My best coping tools are:
a warm bed in a dark, quiet room, an ice pack for my eyes, breathing and meditation techniques to manage the emotions, my dogs lying quietly in the room with me until I feel better

18. I find comfort in:
My husband’s understanding of how bad it is, his support and willingness to lay down quietly next to me at times when I can tolerate the closeness, massage when I can tolerate it (my husband is a massage therapist), my dogs, knowing that many years of migraine have given me the experience to weather the storm and the coping techniques that help me

19. I get angry when people say:
You should just “power through it.” If you just _____, you’ll quit having these headaches.”

20. I like it when people say:
I’m so sorry you have to deal with that. What/where can you eat that will work for you? I’m really impressed with how well you handle this.

21. Something kind someone can do for me during a migraine attack is:
Be quiet or lower the lights without acting irritated. When I’m ready to eat, bring me the food I ask for even if it’s quirky or they have to go to the store. If I have a low-level migraine that’s lingering, be will to sit and talk quietly with me about pleasant things.

22. The best thing(s) a doctor has ever said to me about migraine is:
Migraine is very interesting. I have a lot of patients with migraine so I keep up to date with the research. You don’t need to put on a brave face/be tough. Do you need something for the pain right now? Everyone’s migraine symptoms and triggers are different.

23. The hardest thing to accept about having migraine is:
That it never goes away and even perfect trigger management won’t make me migraine free. The worry of escalation or chronic daily headache. The worry that menopause won’t help and I’ll be feeling this bad forever – I’ve had a substantial increase in migraines as I’ve gotten older. The fact that there is no answer, no comprehensive list of things to do/not do. The worst is the limitations in every part of my life, even though all that constant vigilance doesn’t end migraines.

24. Migraine has taught me:
To take charge of my own health and my own healthcare. To appreciate what I have while I have it. To do the best I can and try to not worry about the rest. To rely on the people who love me and to try to be reliable in return when I can.

25. The quotation, motto, mantra, or scripture that gets me through an attack is:
Migraine is fascinating. Thinking of my triggers, symptoms, coping strategies as endlessly fascinating and complex has helped me manage the fear, shame and depression I used to feel so strongly.

26. If I could go back to the early days of my diagnosis, I would tell myself:
To start managing my lifestyle and triggers earlier. To learn everything I could. To not be ashamed. To keep looking until I found a doctor who was educated on the subject AND who I clicked with .

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

28. The thing I most wish people understood about migraine is:
That is not just a headache. That it is a chronic, neurological condition that I have to manage every day. That I’m not being “difficult” when I say I can’t eat something or go somewhere. That just because I ate something or when somewhere one day doesn’t mean I can do it all the time. That just because I look ok doesn’t mean I feel ok.

29. Migraine and Headache Awareness Month is important to me because:
Because it reminds me I’m not alone. Because it reminds me that there is so much more awareness and research than there was 30 years ago when I was alone in the dark not know what to do.

30. One more thing I’d like to say about life with migraine is:
It’s my life and I try to live it every day.

30 Things Meme

My life with Chronic Daily Headache

May 31, 2015May 10, 2016 reader

This is a reader-submitted post.

1. I have had chronic daily headache (CDH) for _17___ years.
2. The first headache I remember is: from a concussion when I was 8, but I believe migraine started when I was 6.
3. After the headache started, it took ___1 year from the time they became daily___ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates Fluctuates
5. My typical pain level ranges from: 5-7
6. In addition to pain, my symptoms include: photophobia, neck pain, nausea, tooth pain
7. Treatments I have tried include: Way too many to list (75+ preventative, abortive, and alternative treatments)
8. I take _5___ medications/supplements each day for prevention and __2__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: try to lay down with an ice pack when possible.
10. The most frustrating part about having CDH is: the unpredictability of when the pain will be severe and when it will be tolerable.
11. Because of CDH, I worry about: being able to get things done that have to be done and not letting others down.
12. When I tell someone I have CDH, the response is usually: disbelief that I can have a headache EVERY day.
13. When I see how little research and information exists on CDH, I feel: frustrated that not more is being done to find treatments for such a debilitating disorder.
14. Having CDH has affected my work/school life by: not allowing me to do everything that I want to with my students.
15. Having CDH has affected by family life by: not being able to attend all family functions
16. The one word that best describes my experience with CDH is: all-encompassing (no single part of my life has not been touched and affected by CDH.)
17. My best coping tools are: acceptance of the situation
18. I find comfort in: music and time alone
19. I get angry when people say: Oh, I get headaches all the time, too. After a couple of Tylenol I’m good to go.
20. I like it when people say: Let me do it. You rest.
21. Something kind someone has done for me in relation to CDH is: treated me with respect and kindness
22. The best thing a doctor has ever said to me about CDH is: We will do this together.
23. The hardest thing to accept about having CDH is: Knowing when I have to say no and slow down to take care of myself.
24. Having CDH has taught me: self-reliance and resilience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Don’t think of all the misery, but of all the beauty that remains. – Anne Frank
26. If I could go back to the early days of my diagnosis, I would tell myself: It is okay and necessary to grieve for all I have lost, but to also rejoice and celebrate all that you can accomplish that you didn’t know was possible.
27. The people who support me most are: family
28. The thing I most wish people understood about CDH is: I can’t control how I feel.
29. Migraine and Headache Awareness Month is important to me because: more people need to know the scope disability caused by migraine and other headache disorders.
30. One more thing I’d like to say about living with CDH is: Everyone’s experience with CDH is different. Respect each individual’s story as their truth.

30 Things Meme

Never give up, never surrender.

May 28, 2015May 10, 2016 reader

This is a reader-submitted story.

1. My diagnosis is: chronic daily headache with migraine
2. My migraine attack frequency is: 40+ per month
3. I was diagnosed in: 2002
4. My comorbid conditions include: anxiety, PTSD (rape survivor!), and depression.
5. I take anti-seizure medication daily and abortive medication 2-3 times a week.
6. My first migraine attack was: 2001
7. My most disabling migraine symptoms are: the preventative lifestyle. I am always responding to the way I feel, adapting my routine, re-planning, strategizing.
8. My strangest migraine symptoms are: clumsiness and spaciness. I become inept, the migraine comes, I realize “oh, that’s why…”
9. My biggest migraine triggers are: weather, sleep, stress.
10. I know a migraine attack is coming on when: I get an earache, extra light sensitive, extremely sleepy, or I realize I’ve been behaving in a confused/bizarre manner. Sometimes the pain comes on and the first thing I truly realize is that I’ve become frustrated, snippy, or hard on myself…and THEN that I’ve been pushing aside thoughts of pain for the past hour.
11. The most frustrating part about having a migraine attack is: it can wipe out entire days, with our without medication. (I often go without imitrex as an abortive because of the hit or miss nature of my dose–I still try to tune my pain out to the point that I often miss taking medication early enough–and because it renders me fairly weak and exhausted for up to 48 hours.)
12. During a migraine attack, I worry most about: the things I should be doing while I am dealing with pain and whether I am an incredible, unpleasant burden on my loved ones for being in such raw agony all the time.
13. When I think about migraine between attacks, I think: Exploit every single pain-free second to the maximum.
14. When I tell someone I have migraine, the response is usually: Oh no!
15. When someone tells me they have migraine, I think: Do you realize that this is the equivalent of someone with a splinter talking about their experience with trauma to someone with a pole sticking out of their head? Is it really so hard to do a quick google and make a few lifestyle adjustments? Shouldn’t you be telling this to a doctor? What makes you think I want to talk about pain when I’m trying to get away from pain?
16. When I see commercials about migraine treatments, I think: Here’s another money-hungry drug company.
17. My best coping tools are: medication, meditation, physical activity and creativity.
18. I find comfort in: confiding in my loved ones and writing.
19. I get angry when people say: “have you tried xyz?”
20. I like it when people say: “Thank you for sharing that with me.” Or, “How are you feeling lately?”
21. Something kind someone can do for me during a migraine attack is: tell me it’s okay to be in pain and offer options.
22. The best thing(s) a doctor has ever said to me about migraine is: “You will live with this condition for the rest of your life.”
23. The hardest thing to accept about having migraine is: You cannot truly control it. If you try to, it will control you.
24. Migraine has taught me: “Give yourself three hours, then try again.”
25. The quotation, motto, mantra, or scripture that gets me through an attack is: The entirety of Buffy.
26. If I could go back to the early days of my diagnosis, I would tell myself: This is your new reality. Never let other people dictate how you feel about your pain. Pursue every avenue of support you need and never apologize for it.
27. The people who support me most are: my boyfriend, my best friend, and my parents.
28. The thing I most wish people understood about migraine is: the pain is severe, sure, but it’s far harder to deal with the constancy and unpredictability in planning the day-to-day and beyond.
29. Migraine and Headache Awareness Month is important to me because: Support from friends and family can make a HUGE difference in the life of someone with chronic pain.
30. One more thing I’d like to say about life with migraine is: Migraines are an unpredictable variable that can turn the most tried and true formula into utter nonsense. Unless you’ve done the math yourself, you can never really hope to understand–and that’s okay. I still love you.