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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 My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine with Cluster Headaches, Nummular Headache
2. My migraine attack frequency is: More than 15 days a month lasting days, weeks or months
3. I was diagnosed in: 2009
4. My comorbid conditions include: lupus and/or Sjorgrens, Chronic Kidney Disease Stage 3, Hypoglycemia, elevated pancreatic lipase and amylase enzymes, cataracts and others
5. I take __2__ medications/supplements each day for prevention and __6__ medications/supplements to treat an acute attack
6. My first migraine attack was: in my 20’s
7. My most disabling migraine symptoms are: throbbing pain, chronic nausea
8. My strangest migraine symptoms are: decline in verbal skills, word recall, memory lapses
9. My biggest migraine triggers are: Exercise, Strenuous Activity, Skipping Meals, Eratic Glucose Levels, Anxiety, some muscle relaxers like Flexeral
10. I know a migraine attack is coming on when: I become sensitive to noise and light. A spot on the right side of my head begins to hurt.
11. The most frustrating part about having a migraine attack is: Not participating in my own life, not being able to do anything except lay down in the dark in pain, boredom, not being able to eat due to nausea. I miss being able to enjoy food, being fit and feeling healthy.
12. During a migraine attack, I worry most about: important things like paying bills, messy house, communicating less with my daughter, leaving my husband alone to cope with everything and the stress he experiences as a result
13. When I think about migraine between attacks, I think: Maybe I can have a “normal” day today. How much can I get done before the next attack?
14. When I tell someone I have migraine, the response is usually: Advice that I’ve already researched or tried, “you can’t be sick as often as you say you are”, or “I hope you feel better soon”, “I understand”.
15. When someone tells me they have migraine, I think: I hope it doesn’t last long, and that the pain isn’t unbearable. I wonder if there’s anything I can do, and how much does he or she know about their condition.
16. When I see commercials about migraine treatments, I think: I’d like to try that. If it’s an over the counter treatment, I get angry because I got my first medication overuse headache from Excedrine for migraine.
17. My best coping tools are: meditation, taking abortives when migraine symptoms begin
18. I find comfort in: my husband’s unwavering support
19. I get angry when people say: migraines are some type of mental health condition.
20. I like it when people say: It must be difficult for you. I understand that it can be a debilitating illness. Is there anything I can do to help? I will say “no”, but I will feel appreciative of the offer.
21. Something kind someone can do for me during a migraine attack is: Ease my guilt by showing empathy and understanding.
22. The best thing(s) a doctor has ever said to me about migraine is: We’re going to try Botox because you meet insurance requirements.
23. The hardest thing to accept about having migraine is: Feeling generally unhealthy and losing the ability to workout enough to stay physically fit. I miss traveling as much as before chronic migraine hit. Taking so many meds when I have Chronic Kidney Disease.
24. Migraine has taught me: To appreciate my pain free days, my migraines do not define me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Let go of what I can’t control.
26. If I could go back to the early days of my diagnosis, I would tell myself: Enjoy the days without migraine, treat them quickly, follow OTC labels regarding number of days to use medication, and get medical advice immediately following the last dose if I’m still experiencing pain.
27. The people who support me most are: My husband, my mother-in-law and my sister-in-law.
28. The thing I most wish people understood about migraine is: It is a neurological disease.
29. Migraine and Headache Awareness Month is important to me because: I hope it will stimulate research and better treatments. Also, I hope that my family will be willing to learn more about migraine which could lead to understanding.
30. One more thing I’d like to say about life with migraine is: my migraines became chronic in 2009, and completely changed my life. I’ve had to give up all physical activities that I enjoyed so much. My medications, doctor appointments , Emergency Room visits alternative treatments and hospital stay have eaten up our savings. It is an expensive disability for the patient and healthcare industry. An effective treatment specifically for migraine is critical and beneficial for the country as well as the Migraineur, the families and friends touched by migraine disease.

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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Migraines: A blessing and a curse

This is a reader-submitted story.

1. My diagnosis is:
Chronic migraine, migraine with aura, Cluster Headaches
2. My migraine attack frequency is:
This varies. In the city at least 20 migraine days per month.. Away from the city 8 days, or less per month. I moved to a different climate to see whether a more suitable environment would help and it has. If I visit the city, I’m back to the same pattern.
3. I was diagnosed in: 1998, but I have had migraines since I was 8 and was told I was being dramatic, or lying.
4. My comorbid conditions include: Multiple Chemical Sensitivity, Cluster Headaches
5. I take ___6_ medications/supplements each day for prevention and ___3_ medications/supplements to treat an acute attack.
6. My first migraine attack was:
Age 8
7. My most disabling migraine symptoms are: Aura, Light sensitivity, Smells feel like they’re attacking me.
8. My strangest migraine symptoms are:
Not being able to explain what us happening, because words make no sense.
9. My biggest migraine triggers are:
Artificial fragrances, smell of fish, falling atmospheric pressure with rising humidity.
10. I know a migraine attack is coming on when:
I feel euphoric, or bitchy for no reason
11. The most frustrating part about having a migraine attack is:
Missing out on fun activities, people judging and blaming me for something I can’t control, people giving me ridiculous advice and then being angry when I don’t follow it.
12. During a migraine attack, I worry most about:
I don’t really worry about anything, but I wish it would just stop.
13. When I think about migraine between attacks, I think:
How much can I get done while I am pain free, I find ways to enjoy every moment of pain free time. I wish life was always this simple.
14. When I tell someone I have migraine, the response is usually:
I usually only talk about migraines to people who get them too. I can’t help being furious with people’s judgments and negative feedback, so I try to fake my way out of the situation.
15. When someone tells me they have migraine, I think:
When people tell me they have migraine, I feel like I have found a kindred spirit.
16. When I see commercials about migraine treatments, I think:
I never pay attention to commercials about anything
17. My best coping tools are:
Solitude, cool places, medical marijuana, silence, wearing sunglasses indoors, avoiding contact with people who lack compassion, avoiding all chemical exposure.
18. I find comfort in:
Knowing that there are other people out there who also deal with this.
19. I get angry when people say:
“Just drink salt water, or lemon juice” or some other substance that 40 years of migraines have proved useless.
20. I like it when people say:
“is there anything I can do to makes things easier for you” Usually the answer is no, but just having people ask the question makes me feel they care.
21. Something kind someone can do for me during a migraine attack is:
Usually there are no people around, but if there are, I prefer them to do their own thing. If I need something I will ask. Neck and shoulder massages or fire cuppng do helpl
22. The best thing(s) a doctor has ever said to me about migraine is:
I really can’t help you. Honesty. Acknowledging that nothing has made a difference and giving me a prescription for medical marijuana.
23. The hardest thing to accept about having migraine is:
Everything: Housing (I have to live where people don’t use fragrances), Employment – I have to be self-employed, so that I can avoid exposure to toxins, money – I am just getting by, social relationships – I come across as weird, especially around this fragrance issue, friends – not many, people don’t get it. I try not to let people know I have a migraine, but sometimes I just have to get out of the situation to somewhere safe fast.
24. Migraine has taught me:
Compassion. endurance, the art of doing things by feel, determination, to love the dark, research skills, Pharmacogenetics, neurochemistry, herbalism, how to make my own medicines, thinking outside the box, rebellion, a healthier lifestyle, living in the moment.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
” What doesn’t kill me makes me stronger”
26. If I could go back to the early days of my diagnosis, I would tell myself:
“Look for older, more obscure research”
27. The people who support me most are:
Online community.
28. The thing I most wish people understood about migraine is:
No one chooses migraines. We haven’t done something wrong, or not done something right. We really don’t want pop culture advice. Just because it worked for one person, doesn’t mean it works for everyone, we’re all biochemically unique.
29. Migraine and Headache Awareness Month is important to me because:
There are so many myths about migraine out there. Education is key.
30. One more thing I’d like to say about life with migraine is:
The positive things about migraine for me are:: I have done a lot of research and educated myself. I understand migraine really well. I have a deeper sense of compassion for the suffering of others, I have looked at so many options and all this searching has made m e a better, more self-aware human being. My understanding of the limitations of modern medicines has allowed me to take my own path and find my own solutions. I have let go of the hope that people will support me. I have to walk my own path, and always choose health before anything else. This knowing that I am on my own, inspired me to get rid of everything move to a different climate on a shoestring budget. This move has decreased the frequency and duration of my migraines. I can avoid a lot more triggers here. I have learned about rural living, small communities, organic gardening and herbal medicine.

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 Life with Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Basilar-Type Migraine with episodic Cluster Headache
2. My migraine attack frequency is: 15-17 days per month
3. I was diagnosed in: June 2010
4. My comorbid conditions include: None
5. I take __3__ medications/supplements each day for prevention and up to 5 medications/supplements to treat an acute attack
6. My first migraine attack was: April 2010
7. My most disabling migraine symptoms are: blindness during aura, loss of motor control during aura, vomiting
8. My strangest migraine symptoms are: forgetting how to do common things–walk, talk, drive, etc.
9. My biggest migraine triggers are: weather, not sleeping
10. I know a migraine attack is coming on when: I get the munchies, visual aura
11. The most frustrating part about having a migraine attack is: not being able to do what I want when I want. Fear of getting stranded somewhere because it’s not safe for me to drive during an attack. Having to leave a job I love and take disability because I could not consistently show up for work.
12. During a migraine attack, I worry most about: being able to take care of my dogs and my family
13. When I think about migraine between attacks, I think:What did I do? Why is this happening–I was 48 when this all started, am 52 now.
14. When I tell someone I have migraine, the response is usually: falls into 2 camps: sympathy or eye-rolling
15. When someone tells me they have migraine, I think: i am sorry you are having this, is there anything I can do to help you.
16. When I see commercials about migraine treatments, I think: I wish it were that easy. Botox has taken me down from daily migraines to 15-17 per month and I am grateful for those good days.
17. My best coping tools are: knowing that I will have a good day at some point during the month
18. I find comfort in: my dogs and my neurologist.
19. I get angry when people say: My family member/friend uses XYZ drug, why don’t you? Like I haven’t tried it or can’t take it because of my migraine type
20. I like it when people say: Can I call someone for you or drive you home
21. Something kind someone can do for me during a migraine attack is: let me know they will make sure my dogs are fed if I am down for more than a few hours
22. The best thing(s) a doctor has ever said to me about migraine is: This sucks and I am sorry it happened to you. Let’s try to get your quality of life back.
23. The hardest thing to accept about having migraine is:
24. Migraine has taught me: To value every good day but not to overdo it.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: You will have a good day this month, just hold on.
26. If I could go back to the early days of my diagnosis, I would tell myself: Take the disability retirement now, don’t wait. I tried to work full-time for 4 years when missing more than 1/2 a month of work on a regular basis. I took 3 rounds of leave under FMLA and relocated before I realized I just couldn’t keep up any more. This was the most frustrating part of this whole thing, having to leave a job I loved because I could not do it consistently anymore.
27. The people who support me most are: my family.
28. The thing I most wish people understood about migraine is: How frustrated I get because I can’t follow through and plan like I used to.
29. Migraine and Headache Awareness Month is important to me because: I hope it gets more money into research for medications that might work 1/2 as well as advertised (LOL).
30. One more thing I’d like to say about life with migraine is: Don’t give up. It may take a while to find the right doctor and the right “cocktail” to manage your symptoms. Be your own advocate; keep up with research, new drugs, trials, etc. Don’t forget to enjoy the good days!!

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.