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30 Shades of Pain

This is a reader-submitted story.

1. My diagnosis is: Chronic migraine
2. My migraine attack frequency is: Right now, daily
3. I was diagnosed in: my 20’s, almost 30 years ago
4. My comorbid conditions include: Anxiety, neck and back pain
5. I take __2__ medications/supplements each day for prevention and _2___ medications/supplements to treat an acute attack
6. My first migraine attack was: In my 20’s attributed to hormone fluctuations.
7. My most disabling migraine symptoms are: Nausea, confusion, pain
8. My strangest migraine symptoms are: Blurred vision
9. My biggest migraine triggers are: Hormonal fluctuations, sleeping, eating, wine, sweets, heat, strong smells.
10. I know a migraine attack is coming on when: I feel waves of nausea.
11. The most frustrating part about having a migraine attack is: They are never at convenient times, life is too busy to lay down for three hours while medication kicks in. One abortive works, but it makes me feel even worse, and exhausted for a couple of hours after I take it.
12. During a migraine attack, I worry most about: Will the meds work, staying awake, disappointing my children, husband, co workers.
13. When I think about migraine between attacks, I think: Thank goodness I feel good right now.. I wonder if I could drink just one glass of wine and not have an attack. 🙂
14. When I tell someone I have migraine, the response is usually: I try to keep it to myself… it’s just so frequent, I don’t want to be a buzzkill.
15. When someone tells me they have migraine, I think: I am very sympathetic. I used to be a teacher, and I knew who the migraine kids were in school. When I saw them laying down I would always stop and make sure the lights were down, that their parent had been called and that they had taken whatever meds they were allowed to take at school… and I tried to offer some empathetic words.
16. When I see commercials about migraine treatments, I think: That probably won’t work for me.
17. My best coping tools are: Abortive meds.
18. I find comfort in: Quiet couch time.
19. I get angry when people say: Try Excederin Migraine.. I know they mean well though, so try to take it in stride.
20. I like it when people say: I have a co worker who asks me upon arrival every day how I am feeling. I don’t usually offer up my daily condition.. I just quietly endure my migraine, 3-hours of yuck before abortive kicks in cycle.
21. Something kind someone can do for me during a migraine attack is: Be sympathetic and caring.
22. The best thing(s) a doctor has ever said to me about migraine is: Your MRI looks good. I truly thought I must be having strokes, or have a tumor or something.
23. The hardest thing to accept about having migraine is: I keep thinking that I have some undiagnosed medical condition that nobody has taken the time to figure out. I hate that I can’t fully participate a lot of times.
24. Migraine has taught me: to keep on going even when feel absolutely horrible.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Not sure. My all time favorite verse is Jeremiah 29:11 so maybe that applies here too: For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
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 family
28. The thing I most wish people understood about migraine is: How much it upsets me and makes me sad. How sick I feel so much of the time.
29. Migraine and Headache Awareness Month is important to me because: I think this should be treated as more of a chronic illness. It is more serious and debilitating than people think.
30. One more thing I’d like to say about life with migraine is: I wish there were better preventatives. I tried Topamax and felt awful. Now I take Zonisamide. It make slightly take the edge off, but doesn’t really help. They keep trying to put me on Effexor, which makes me feel so weird after a few days that I can’t continue. The daily remedies haven’t really helped. I would like to learn more about others’ experiences with preventatives.

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.

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30 Things About Melanie’s Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: with preventives: 4 times a month; without preventives: constant
3. I was diagnosed in: ??? Good question. I think I diagnosed myself in my early 20’s.
4. My co-morbid conditions include: Anxiety, Depression, Reynaud’s Syndrome, Motion Sickness
5. I take __8__ different medications/supplements each day for prevention and up to _4_ medications/supplements to treat an acute attack
6. My first migraine attack was: around age 5.
7. My most disabling migraine symptoms are: nausea, vomiting, dizziness, inability to concentrate
8. My strangest migraine symptoms are: temporary deafness, word salad
9. My biggest migraine triggers are: hormone imbalance, heat, wine, beer, sweet desserts
10. I know a migraine attack is coming on when: I start to get sinus and ear congestion on one side
11. The most frustrating part about having a migraine attack is: having to lay still so I don’t feel worse and not being able to do much ’cause I can’t think straight
12. During a migraine attack, I worry most about: Am I going to vomit?
13. When I think about migraine between attacks, I think: Please don’t come back!
14. When I tell someone I have migraine, the response is usually: Pretty compassionate
15. When someone tells me they have migraine, I think: Oh you poor sod; I am so sorry!
16. When I see commercials about migraine treatments, I think: If only!
17. My best coping tools are: Laying still; taking my meds early enough
18. I find comfort in: Hot baths
19. I get angry when people say: Most headaches are due to dehydration; have you tried drinking more water?
20. I like it when people say: Why don’t you lay down? I’ll take care of it.
21. Something kind someone can do for me during a migraine attack is: Cook dinner
22. The best thing(s) a doctor has ever said to me about migraine is: I was just the cheerleader; you figured this out yourself!
23. The hardest thing to accept about having migraine is: There is no cure.
24. Migraine has taught me: Compassion for others and how to forgive myself
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I am not my body
26. If I could go back to the early days of my diagnosis, I would tell myself: You have to advocate for yourself; no one else will do it.
27. The people who support me most are: my daughter, my therapist
28. The thing I most wish people understood about migraine is: It’s a full-body neurological attack with a range of symptoms that can last several days and are completely debilitating
29. Migraine and Headache Awareness Month is important to me because: We need more awareness, better treatments and more doctors to train as migraine specialists!
30. One more thing I’d like to say about life with migraine is: Life would be better without it.

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.

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30 Things About My Headache Disorder

This is a reader-submitted story.

1. My diagnosis is: I fit under “other” headache disorders. I have a combination of chronic daily headache, cluster headaches (rare), chronic daily migraine, and atypical facial pain. I have a “perfect storm” for a headache disorder, as my headache doctor says, of structural, genetic, and hormonal factors.
2. My headache frequency is: Daily (see above)
3. The first headache I remember was: Had them since middle school, but we called them “sinus headaches”
4. My pain levels range from: On a 1-10 scale? 6-9
5. I was diagnosed in: 2005
6. My comorbid conditions include: Many, due to uncontrolled chronic pain– it really breaks down your body
7. I take __1__ pills each day for prevention and ___6_ pills to treat an acute attack
8. In addition to pain, other symptoms I experience include: Inability to focus, depression, anxiety, loneliness
9. Treatments I have tried include: Every nerve block available in the US, over 50 preventative and acute medications, a Motor Cortex Stimulator Implant, chiropractic, massage, personalized yoga work, intensive 2 week meditation retreat, in-patient drug trials, the Cefaly, trying to cure myself through mind/body work, prayer
10. During a severe headache, I: cannot function. You will not see me.
11. My headaches get worse when: My heart rate goes up, stress– even normal stress– my body takes normal stress and my hormones say “We are going to react like being late is going to literally kill you”, loudness, light, vibrations, weather changes, cold, any physical pressure to my head
12. 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.
13. 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
14. When I tell someone I have a headache disorder, they usually say: I don’t know. I don’t normally tell anyone except new doctors. They usually don’t believe me, unless I’m seeing a specialist that deals with out-of-the-box patients
15. When I see articles about headache disorders, I think: Please give up-to-date accurate information
16. 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.
17. 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.”
19. I like it when people say: I love you, anyway.
20. Something kind a person can do for me during a severe headache is: Believe that I want to be anywhere but stuck in bed
21. 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.
22. Having a headache disorder has affected my work/school life by: Ending it.
23. 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.
24. 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.
25. The quotation, motto, mantra, or scripture that gets me through severe pain is: This can’t last forever.
26. If I could go back to the early days of my diagnosis, I would tell myself: Intractable pain is real. You are not crazy. This is real.
27. The people who support me most are: My family, friends, sisters and brothers in the trenches, and very smart, hard-working, compassionate doctors
28. 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.
29. Migraine and Headache Awareness Month is important to me because: I’m tired of some of the people I love being ashamed of not being to participate in life the way they want to and the way they feel they are supposed to; of them feeling like failures and being treated like failures; of my people that work harder to show up in life than anyone I know, then being treated like they are lazy, thoughtless, and selfish instead of cheered on and loved for trying so hard.
30. One more thing I’d like to say about my headache disorder is: If I didn’t have it, I would be changing the world. One day, I’ll be cured and you better hold onto your hats because it is going to be ON.

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.

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30 Questions

This is a reader-submitted story.

1. My diagnosis is: I have been diagnosed with migraine with aura, chronic migraine, and just recently cluster headaches.
2. My migraine attack frequency is: It use to be daily but is now about 2 times per week [depends] but without any treatment i use to get over 10+ migraines per month and at least 8 cluster headaches per month at the moment it seems cluster headaches are in remission
3. I was diagnosed in: My ‘formal’ diagnoses was in 1982 and the cluster headache in 2014
4. My comorbid conditions include: I have several comorbid conditions I have fibromyaliga, restless leg syndrome and depression I also suffer with chronic pain due to an accident in 2000 Light sensitivity that never seems to go away and I cant stand loud noises
5. I take a mixture of pain meds that help with the attacks I have 1 tablet I take each morning to stop the cluster headache [seems to work so far] I have an abortive system to take to try and stop the migraine from starting
6. My first migraine attack was: When I was 4 years old I can’t remember but i do remember them in early childhood i use to hold my head and scream i know now that would have only made them worse My mother was told i was only seeking attention Yet i do remember them so well even when so young all my mother could do was give me disprin as I got older they got worse and i missed so much school
7. My most disabling migraine symptoms are: Light sensitivity, and the Throbbing in my head I also cannot think and I lose sight in my right eye I try to keep going in the early stages but when the pain really sets in i go to my dark room and close out the world sometimes for days at a time
8. My strangest migraine symptoms are: Pins and needles in my face and my head feels so heavy i often need a neck brace as I feel i cannot hold it up I cant think nor speak simple instructions are impossible to understand
9. My biggest migraine triggers are: Lack of sleep, sweet sickly smells and loud constant noises
10. I know a migraine attack is coming on when: I get very moody and cry at the drop of a hat
11. The most frustrating part about having a migraine attack is: No body believes me and It’s hard to wait for the right time to take abortive medicine when I know what’s coming. Too soon and it won’t work at all Too late and it won’t work either. And is it a migraine or a cluster not knowing which makes it hard to now what meds to take
12. During a migraine attack, I worry most about: What needs to be done, being so useless to anyone including myself
13. When I think about migraine between attacks, I think: When is the next one going to start how much can i get done between attacks to try and get ahead [doesn’t work but i try]
14. When I tell someone I have migraine, the response is usually:“Yeah, I get those, too,” It’s makes me so angry because most of the time the person has no idea They say oh try this or that and it works for me but Ive been there tried that doesn’t work for me
15. When someone tells me they have migraine, I think: Really i asked a few simple questions and realize they don’t have a clue what a migraine really is But if they actually have migraine attacks i listen with interest to what they have to say
16. When I see commercials about migraine treatments, I think: You make it seem so simple to manage….. no wonder people think migraine is just another headache I switch channels its such dribble
17. My best coping tools are: Just giving up and going to bed with my heat packs ice packs and meds
18. I find comfort in: My bed My backup plan and my pre-pack bag of comfort items
19. I get angry when people say: its just another headache Your lazy you just enjoy staying in bed and scoffing off the government No I hate having to stay in bed I hate not being able to wake up refreshed each day Not wondering if ‘this’ is the day another will start I hate not being able to function like everyone seems to be able to do and I hate having to constantly having to cancel my plans
20. I like it when people say: It’s ok I’m there for you… [but they do live to far away to really be of help] but its a comfort to know someone really cares about you and doesn’t pity you and is willing to really listen and drive such a long way to be with you
21. Something kind someone can do for me during a migraine attack is: Leave me alone and let me recover but be there anyway {I realize that sounds confusing]
22. The best thing(s) a doctor has ever said to me about migraine is: They have not said anything to help me deal with this
23. The hardest thing to accept about having migraine is: How debilitating it is and the stigma that is attached to it There is no cure and Ill never know when another attack will start but i know it will sometime soon
24. Migraine has taught me: i am stronger than i think I must slow down I must take things easy and don’t fill my plate to full with to many things that need doing how I must pace myself
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This to will pass
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t just accept one doc’s diagnosis keep trying till you get the correct diagnosis and treatment which is hard in a rural town and the city is a long way away
27. The people who support me most are: Myself only……. I lost all my friends when migraine became chronic My friends now live in my computer
28. The thing I most wish people understood about migraine is: it is a real disease It has no cure Its lifelong I’m not someone who is on the pension cause I want to be i want to be normal without pain day in day out without the side effects and yes it can take me a couple of days to get over an attack then usually another starts its a cycle i cant get off
29. Migraine and Headache Awareness Month is important to me because: Finally people can see its real As some one else said For most of my life I’ve felt the stigma of migraine. I felt alone and misunderstood, as though somehow I brought this misery on myself. I don’t want one more person to ever feel that way again. I cant say it any better than that
30. One more thing I’d like to say about life with migraine is: Find the right treatment After 50 years of having migraine and not finding any treatment for almost 40 of those years I say get the right treatment find the right doctor who really believes in you and wants to help you Its hard in a rural town I dread having to travel for treatment but if it needs to be so be it

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.

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30 things about Hannah’s life with migraine

This is a reader-submitted story.

1. My diagnosis is: chronic migraine and tension headache
2. My migraine attack frequency is: Daily. I have had one day without a headache in the last 15 years.
3. I was diagnosed in: 1988, aged 9
4. My comorbid conditions include: arthritis/gout, depression
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: aged 9 – I had a long journey back to a holiday home lying in the boot of the car in absolute agony thinking I was going to die. I spent the next few days in bed with a hot water bottle and ice packs and a very patient mum who immediately recognised the migraine.
7. My most disabling migraine symptoms are: gastrointestinal issues, ‘head daggers’, eyes losing ability to focus and aura which mean I split my time between the bathroom, the bedroom and that weird headspace when I’m not certain who I am let alone where I am!
8. My strangest migraine symptoms are: salt and sugar cravings – salt and vinegar crisps followed by milk chocolate!
9. My biggest migraine triggers are: completely depends on the day – often a combination of triggers. Perfume/aerosols, egg, peppers and stress are the most common
10. I know a migraine attack is coming on when: my shoulders become tense leading up the neck, and my eyes ache
11. The most frustrating part about having a migraine attack is: not knowing if the medication will be able to control it this time
12. During a migraine attack, I worry most about: letting down my fiancée or friends, work I am missing
13. When I think about migraine between attacks, I think: I’m lucky as it used to be a whole lot worse
14. When I tell someone I have migraine, the response is usually: oh, I had a headache the other day too
15. When someone tells me they have migraine, I think: how I could help them, if there is something I’ve tried that could work wonders for them
16. When I see commercials about migraine treatments, I think: I wish it was that easy!
17. My best coping tools are: having a migraine pack ready at hand at all times (pills, water, crisps, chocolate, heat pack, tiger balm)
18. I find comfort in: my fiancée and surrogate daughter knowing to bring salt/water/sugar but leave me for a day or so to sleep, and my dog who snuggles as tight as possible and watches over me as I sleep
19. I get angry when people say: is it a really bad headache?
20. I like it when people say: I can see the migraine coming in your eyes, why don’t we meet up another day
21. Something kind someone can do for me during a migraine attack is: quietly bring me crisps and chocolate
22. The best thing(s) a doctor has ever said to me about migraine is: there are several types of migraine, and you have least 5!
23. The hardest thing to accept about having migraine is: there may be phases of relief but there is no cure
24. Migraine has taught me: pain can be invisible so appreciate other people and allow them to have off days – you never know the pain they may be in
25. The quotation, motto, mantra, or scripture that gets me through an attack is: get through the pain and the rain will come! (The sensation of rain falling on my head is a side effect I get when my attack pills are working, meaning there is light at the end of the tunnel)
26. If I could go back to the early days of my diagnosis, I would tell myself: don’t apply for every medical trial or new treatment
27. The people who support me most are: my fiancée and my surrogate daughter, and my parents during my childhood/teenage years
28. The thing I most wish people understood about migraine is: the headache is only a small element in migraine
29. Migraine and Headache Awareness Month is important to me because: I want more people to be aware of migraine
30. One more thing I’d like to say about life with migraine is: it can get easier when you accept you have a long term disease that needs management rather than constant searching for a cure

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.