Tag: reader stories

30 Things Meme

30 Things Contest Winner!

Kerrie Smyres

Of the 129 contest entries, the randomly chosen winner is: 30 Things About My Headache Disorder. (Winner, check your email for instructions on how to claim your prize!) Thank you all for participating. Reading your responses and getting to know you has been a pleasure during a particularly difficult month for me.

Some responses from the winning entry that caught my attention:

The most frustrating part about having a headache disorder is: There is no cure for me right now. I have to wait for science to catch up. My doctors assure me I’ll be a wonderful, active grandmother.

Having a headache disorder causes me to worry about: Not being a good enough mother, wife, sister, daughter, friend; that my best is not good enough

My best coping tools are: Staying connected to my people. I isolated myself for years. Now I know that loving and being loved is the best medicine. Also, pushing myself to go out and keep my connections alive even when I just want to be safe in bed, very still, watching terrible tv to keep my mind off the pain.

I find comfort in: People that know me, warts and all, and still love me. People that believe me/in me. Fellow sufferers. Doctors that are pissed that they haven’t been able to help me yet and are never going to give up on me.
18. I get angry when people say: Judgemental things about people that have chronic headaches or migraines, or any chronic condition that is hard to understand, and as if they know what that person is going through. I’ve found that chronic pain from cancer is the only pain that people seem to accept as real. But Morrissey said it best: “It’s easy to laugh. It’s easy to hate. It takes guts to be gentle and kind.”

The best thing a doctor has ever said to me about having a headache disorder is: Make an appointment for a hug if you need to. We’ve maxed out what’s available now, but I’ll always have time to comfort and cry with you.

The hardest thing to accept about having a headache disorder is: Mourning the life your thought you would have. Accepting your new limitations. Having to re-evaluate your purpose in life.

Having a headache disorder has taught me: That I don’t know everything. I was quite judgemental before, didn’t realize how much because I thought I wasn’t, about so many things. I had it so physically easy, I couldn’t imagine that having a headache everyday, all day was even possible, that losing weight could be hard, that there are some things doctors can’t fix. I’ve been humbled, thankfully. For this I’m grateful beyond belief.

The thing I most wish people understood about headache disorders is: No one wants it. It’s not fun to not work when you can’t. I may go to the pool or beach, but I force myself every damn time because I can’t let my kids see me in bed all day, which is honestly where I always want to be. It worries them. You will never see me without a headache and if I’m out, it took A LOT to get there. My fellow headpain people push themselves like you wouldn’t believe! We are Sisyphean. Every day, we are pushing that boulder, but for us, we wake up never knowing how big that boulder is going to be.

30 Things Meme

Brianna’s 30 things about chronic daily headache

reader

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for __16__ years.
2. The first headache I remember is: I was younger than age ten.
3. After the headache started, it took __11 years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates. Level fluctuates, but the pain is always there.
5. My typical pain level ranges from: 3-8
6. In addition to pain, my symptoms include: photosensitivity, phonosensitivity, nausea, racing heartbeat, dilated pupils, insomnia.
7. Treatments I have tried include: massage, chiropractic, homotherapy, many different medications both over the counter and prescription.
8. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: go to bed, dark room, take meds, try and sleep.
10. The most frustrating part about having CDH is: not knowing if it will be a good or bad day.
11. Because of CDH, I worry about: disappointing those I love.
12. When I tell someone I have CDH, the response is usually: how do you do it?
13. When I see how little research and information exists on CDH, I feel: frustrated and sad.
14. Having CDH has affected my work/school life by: I have had to cut back my work schedule severely.
15. Having CDH has affected by family life by: My husband has had to take over and help with the daily household chores.
16. The one word that best describes my experience with CDH is: altering
17. My best coping tools are: encouragement from family and friends.
18. I find comfort in: fuzzy blankets and soft pillows!
19. I get angry when people say: not really angry, but sad: “I had a headache yesterday, not as bad as yours…” As if they diminish their own pain by comparing it with mine, when pain is such a subjective and personal thing.
20. I like it when people say: I know this is difficult for you, but I’m really happy to see you here anyway.
21. Something kind someone has done for me in relation to CDH is: my best friend is in the process of helping me put together a migraine coping kit, for when I’m not at home and it gets bad.
22. The best thing a doctor has ever said to me about CDH is: you’re not a lost cause, and we can help you feel better.
23. The hardest thing to accept about having CDH is: there is no cure right now, no medications that consistently help.
24. Having CDH has taught me: patience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Isaiah 33:24 – “and no resident will say “i am sick.”
26. If I could go back to the early days of my diagnosis, I would tell myself: this isn’t your fault, and hang in there.
27. The people who support me most are: My husband, my parents, and a few close friends.
28. The thing I most wish people understood about CDH is: it is always there, if I look okay it is because I have my “everything’s fine” mask on.
29. Migraine and Headache Awareness Month is important to me because: if awareness is increased, perhaps we can get more effective management tools.
30. One more thing I’d like to say about living with CDH is: I’m working on dealing with the unreasonable guilt I feel when I have to say no. I want to make everyone happy, but I can’t do that, and take care of myself at the same time. Also, I’m trying to give myself permission to make my health a priority.

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.

30 Things Meme

My Inheritance

reader

This is a reader-submitted story.

1. My diagnosis is: chronic migraine with aura
2. My migraine attack frequency is: daily
3. I was diagnosed in: around 2000
4. My comorbid conditions include: fibromyalgia, anxiety, depression,
unindifferentiated auto-immune disorder, IBS, foot pain (standing more than 30 is very painful)
5. I take __1__ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack
6. My first migraine attack was: I can’t remember. I think I’ve had problems since high school but didn’t know what they were.
7. My most disabling migraine symptoms are: pain, nausea, photophobia, sounds, jaw pain
8. My strangest migraine symptoms are: don’t like to smell food cooking and the opposite side of my face will turn red (if it’s on one side)
9. My biggest migraine triggers are: being hungry, singing, stress, loud noise, standing on my feet to long, allergies, heat
10. I know a migraine attack is coming on when: I get a dull pain at the base of my head and neck, jaw, or face.
11. The most frustrating part about having a migraine attack is: I can’t sing, I’ve gained 40 lbs in a month due to medication, waking up not knowing when or if it’s going to start and what will trigger it, not being able to work/even being discriminated against.
12. During a migraine attack, I worry most about: how to treat it
13. When I think about migraine between attacks, I think: When is the next one coming? How can I keep from having one?
14. When I tell someone I have migraine, the response is usually: you need to drink more water and take a walk!
15. When someone tells me they have migraine, I think: I’m so sorry! I wish I could take your kids, make a meal for you, clean and do laundry!
16. When I see commercials about migraine treatments, I think: THAT’S ME!!!
17. My best coping tools are: MY BED, pain meds in moderation, relaxing mentally and physically-like meditating, getting a treat sometimes, a little caffeine helps
18. I find comfort in: BED!, my husband, participating in community theatre
19. I get angry when people say: drink more water and take a walk, they know what’s causing it, you need to concentrate on being a pastor’s wife
20. I like it when people say: Can I make a meal for you? I’m so sorry! Can I help? Nothing and hug me.
21. Something kind someone can do for me during a migraine attack is: bring me a sweet tea without ice from McDonalds, make a meal, make a care package
22. The best thing(s) a doctor has ever said to me about migraine is: I have them too.
23. The hardest thing to accept about having migraine is: All the things I can’t do: sing, dance, and work. In MI our summers are short and I miss a lot of it! – It’s a grieving process.
24. Migraine has taught me: how to relax my body and mind, God loves me even though He doesn’t heal me. As a matter of fact, He uses me to understand others.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: The story of Job
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t doubt yourself! If you have to take OTC’s more than twice a week, get on a preventative!!!
27. The people who support me most are: my husband, a few friends
28. The thing I most wish people understood about migraine is: I am disabled by them completely even though I look normal! When you see me doing theatre, it’s because it brings me joy. I work through as much pain as I can to do it.
29. Migraine and Headache Awareness Month is important to me because: I feel we are overlooked! This is a way to inform other people AND MYSELF!
30. One more thing I’d like to say about life with migraine is: I feel lost in a vicious cycle! I went back to college with migraines and was discriminated against during my internships. This is a painful life emotionally as well. Keep persevering!

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.

30 Things Meme

30 Things About My Life With Migraine

reader

This is a reader-submitted story.

My diagnosis is: chronic migraine with and without aura.
My migraine attack frequency is: I have some level of head pain daily.
I was diagnosed in: 2002 with migraine, becoming chronic in 2008.
My comorbid conditions include: depression, anxiety, fibromyalgia.
I take one medications/supplements each day for prevention and four medications/supplements to treat an acute attack.
My first migraine attack was: I’m not sure. The more I learn about migraines, the more I believe that I’ve dealt with them since childhood.
My most disabling migraine symptoms are: pain, fatigue, cognitive difficulties, aphasia, sensory sensitivities (to light, sound, smell, taste, touch).
My strangest migraine symptoms are: olfactory hallucinations.
My biggest migraine triggers are: weather changes, lights (especially bright and/or flashing), odors / fragrance / smoke, foods / food additives (bananas, artificial sweeteners, nitrates / nitrites, MSG).
I know a migraine attack is coming on when: I have difficulty controlling body temperature and moods, my ears feel hot and achy, increasing visual disturbance, certain cravings, aphasia, inability to focus.
The most frustrating part about having a migraine attack is: being suddenly unable to function well, and not knowing when one will hit or how long it will last.
During a migraine attack, I worry most about: how well my migraine treatment will work, and how long I’m going to be out of commission.
When I think about migraine between attacks, I think: please don’t worsen today.
When I tell someone I have migraine, the response is usually: kind, but often indicative of the lack of public awareness of what migraine truly is.
When someone tells me they have migraine, I think: that migraine is so much more common than most people think. I also think about how I might be able to help them cope with migraine.
When I see commercials about migraine treatments, I think: how far we have to go (and how important it really is that we do so, every chance we get) to inform and raise awareness of migraine and the potentially debilitating affects this disease.
My best coping tools are: my faith, distraction (often involving Netflix).
I find comfort in: my husband, my dog, my house, my support system (family and friends, both in person and online).
I get angry when people say: “It’s just a headache,” which is sometimes followed by,”Just take a pill and keep going / move on” and/or “It can’t be that bad.”
I like it when people say: a sincere, “You’re in my thoughts and prayers.”
Something kind someone can do for me during a migraine attack is: allow me to escape to a dark, quiet place. Ask if I need anything (water, food, blanket, pillow, to be alone, etc) to help make me more comfortable. Be patient with me, as it can be difficult for me to think, speak, and move.
The best thing(s) a doctor has ever said to me about migraine is: “I won’t give up on you.”
The hardest thing to accept about having migraine is: that it is unpredictable.
Migraine has taught me: to recognize the strength that I DO have. It is teaching me to have more patience, and to trust God more.
The quotation, motto, mantra, or scripture that gets me through an attack is: “Be still, and know that I am God” (Psalm 46:10).
If I could go back to the early days of my diagnosis, I would tell myself: to prepare for things to be beyond difficult, but to never give up hope.
The people who support me most are: my husband, my support system (family and friends, both in person and online).
The thing I most wish people understood about migraine is: it’s a genetic neurological disease for which, there is currently NO cure.
Migraine and Headache Awareness Month is important to me because: I feel that we need to speak up/out to raise awareness, increase research, and help correct misinformation.
One more thing I’d like to say about life with migraine is: that it’s hard, but find yourself a support system and be your own best advocate to getting the care and treatment you need to live the best life possible.

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.

30 Things Meme

30 Things About Skylar’s Life With Chronic Migraine

reader

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: AT LEAST once per week
3. I was diagnosed in: 1995 with Migraine but developed chronic migraine in my early 20s
4. My comorbid conditions include: None that I’ve been diagnosed as having
5. I take magnesium, Saw Palmetto each day for prevention and over the counter PM pain killers to help me sleep through an acute attack. I’ve tried relpax, avamigraine, tonopan, depakote, imitrex, nortriptilene and the list goes on with no success. I’m getting ready to meet with a new neurologist. The last did all he could but the prescription meds did nothing to help me – story of my life.
6. My first migraine attack was: 1995 (15 years old)
7. My most disabling migraine symptoms are: Excruciating Headache, Nausea, Blurred Vision, Depression, Light Sensitivity
8. My strangest migraine symptoms are: Frequent Urination which I experience prior to an attack and sometimes during one.
9. My biggest known migraine triggers are: bananas, not eating on time, physical exertion, sunlight
10. I know a migraine attack is coming on when: I see twinkling lights, a black circle blocks out the field of vision in one of my eyes, I feel Euphoric, I feel depressed, I smell citrus when there’s no citrus present,
11. The most frustrating part about having a migraine attack is: My life has to be put on hold.
12. During a migraine attack, I worry most about: If it’s a whammy the pains too much for me to worry. If it’s not, I worry about being a burden and I worry about everything that needs to be done but I can’t do. Sometimes I worry about dying.
13. When I think about migraine between attacks, I think: Is this it? Have I finally struck upon something that works? or Take your time, don’t over do it, you don’t want to trigger a migraine. N.B. I’m very rarely migraine free.
14. When I tell someone I have migraine, the response is usually: Oh I’m so sorry/I have them too.
15. When someone tells me they have migraine, I think: Honestly – I wonder if they really know what a migraine is. Then I think aww… not another sufferer.
16. When I see commercials about migraine treatments, I think: LIARS!
17. My best coping tools are: My religious beliefs and the support of my family.
18. I find comfort in: reading and mediating on the Bible; praying; attending congregation meetings; low key nights with my hubby; family gatherings – when I can attend; blogging and assisting in volunteer work when I can.
19. I get angry when people say: I have headaches too. You just need to get out more. You need to exercise more.
20. I like it when people say: Tell me what your life with migraine is like. Not for pity, I just want to be understood.
21. Something kind someone can do for me during a migraine attack is: Phone to find out if I need something to eat.
22. The best thing(s) a doctor has ever said to me about migraine is: You have chronic migraine. We need to break the cycle. I never knew that the majority of my headaches (which never stop – literally), were migrainous. My husband and I were on the search for what was wrong with me. That neurologist finally answered our question.
23. The hardest thing to accept about having migraine is: You must work within your limitations.
24. Migraine has taught me: To be empathetic towards others.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: 1 Corinthians 10:13: No temptation has come upon you except what is common to men. But God is faithful, and he will not let you be tempted beyond what you can bear, but along with the temptation he will also make the way out so that you may be able to endure it. and Isaiah 41:10, 13: 10. Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.’ 13. For I, Jehovah your God, am grasping your right hand, The One saying to you, ‘Do not be afraid. I will help you.’
26. If I could go back to the early days of my diagnosis, I would tell myself: Find a headache specialist.
27. The people who support me most are: My husband, parents and sister-in-law.
28. The thing I most wish people understood about migraine is: It’s not just a headache. It’s disabling neurological disease.
29. Migraine and Headache Awareness Month is important to me because: Because we need to be understood and we need better treatment plans across the board. Not just one or two patients who happen to strike upon the right doctor.
30. One more thing I’d like to say about life with migraine is: This neurological disease takes so much away from you. It takes your life, your freedom, your self-esteem, your passion and so much more.
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.