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30 Things About Your Life With Migraine

This is a reader-submitted story.

1. chronic migraine
2. 10 a month (thanks to botox)
3. when I was 12
4. depression, anxiety, nerve pain
5. 3 supplements, 1 medication prevention and 1 medication for an attack
6. scary
7. dizziness, tunnel vision, blindness, fatigue, confusion
8. smelling things that aren’t there
9. weather, alcohol
10. I yawn excessively or feel super hyper.
11. The unbearable pain
12. Making it through the day
13. I hope I have enough medication to get me through the month
14. “I’m sorry. You should try…”
15. I’m so sorry ☹
16. Pppht – that is NOT anything like a real migraine
17. Medication & coca-cola during/French fries for nausea. Friends for support
18. The migraine community. Friends. Dogs
19. Oh, I get headaches too.
20. I get migraines, too. I don’t know how you can handle so many in a month.
21. Anything kind is always appreciated
22. Still looking for a good neurologist – most of the time, I have to educate them.
23. That there’s no cure – I could have them for the rest of my life.
24. My limitations
25. Just for today, I can do something for 12 hours that would appall me if I felt I had to keep it up for a lifetime
26. I wouldn’t want to tell my 12 year old self that she was in for a lifetime of pain.
27. Friends and my mom.
28. It’s like pouring water on a circuit board – my whole brain just fizzles out – the pain is just one part.
29. We need more $$ for research!!!!
30. It’s harder than you can imagine. I am affected with crippling exhaustion and scrambled brain the day before and the day after the attack – so take the 10 days a month of actual pain days and triple it to get the real number of sucky days a month.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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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Migraine and Me; 30 Things

This is a reader-submitted story.

1. My diagnosis is: Migraine, Migraine with Aura, Chronic Migraine
2. My migraine attack frequency is: Daily
3. I was diagnosed in: 2012
4. My comorbid conditions include: Depressive Disorder
5. I take _0_ medications/supplements each day for prevention and _3_medications/supplements to treat an acute attack
6. My first migraine attack was: about age 16/17
7. My most disabling migraine symptoms are: pain, allodynia, aura, fatigue
8. My strangest migraine symptoms are: numbness/tingling
9. My biggest migraine triggers are: weather changes, just living
10. I know a migraine attack is coming on when: They’re 24/7. I’m never without one.
11. The most frustrating part about having a migraine attack is: missing out on life.
12. During a migraine attack, I worry most about: the things I need to be doing.
13. When I think about migraine between attacks, I think: On low pain days, I’m constantly waiting for the other shoe to drop.
14. When I tell someone I have migraine, the response is usually: “Have you tried….?”
15. When someone tells me they have migraine, I think: I wouldn’t wish this on anyone.
16. When I see commercials about migraine treatments, I think: I wish that worked for me or that I could afford that.
17. My best coping tools are: Reading, writing poetry, and humor.
18. I find comfort in: My supportive family.
19. I get angry when people say: “It’s just a headache.”
20. I like it when people say: “How are you doing?”…and mean it.
21. Something kind someone can do for me during a migraine attack is: Not touch me! Allodynia hurts!
22. The best thing(s) a doctor has ever said to me about migraine is: “We’ll keep trying. Don’t give up.”
23. The hardest thing to accept about having migraine is: Missing out on time with family.
24. Migraine has taught me: To appreciate the things that really matter and to treasure the good moments.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “It’s okay to not be okay.” ~my sister.
26. If I could go back to the early days of my diagnosis, I would tell myself: “You don’t have to try to be so tough all the time.”
27. The people who support me most are: My sister and my son.
28. The thing I most wish people understood about migraine is: It varies so much from person to person; don’t judge a migraineur based on what yours are like.
29. Migraine and Headache Awareness Month is important to me because: It affects so many people, yet is among the most under researched disorder in the world.
30. One more thing I’d like to say about life with migraine is: It’s the hardest thing I’ve ever lived with/done in my life.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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 Constant Migraine

This is a reader-submitted story.

1. My diagnosis is: Complicated Migraine with Aura … A) Intractable/Constant Migraine – this one for 2 years now; B) Thunderclap Episodes – typically about 2-3 a day; C) Ocular Migraines, both eyes; left worse than right.

2. My migraine attack frequency is: 24/7 for 2 years now for this one particular migraine.

3. I was diagnosed in: At this level started with the first hospitalization with a stroke-like Complicated Migraine Neurological Event on 10/2010.

4. My comorbid conditions include: The one that keeps me from medication help = Erythema Multiforme type of allergic reaction to just about anything (even vitamins and supplements), including migraine interruptive and preventative medicines (and Botox for Migraine).

5. I take zero medications/supplements each day for prevention and zero medications/supplements to treat an acute attack = See Answer #4.

6. My first migraine attack was: As a child.

7. My most disabling migraine symptoms are: My whole body system is affected after all this time. The most discouraging is that I can’t go into any place that echoes or where there is a lot of lights, noise, or people activity — to the point that I even have a short window where I can be in a grocery store/Walmart (on a functional day) before I start getting disoriented/shutting down. This keeps me from anything from group social activities to even being in a staircase area.

8. My strangest migraine symptoms are: It just gets me now how little of the lights, noise, people activity, echoing effect, smells, flashing lights, etc., it takes for me to start to get disoriented/shutting down at this point.

9. My biggest migraine triggers are: Lights, noise, people activity, echoing effect, smells, flashing lights, some food items, along with other environmental items.

10. I know a migraine attack is coming on when: [N/A since it never stops.]

11. The most frustrating part about having a migraine attack is: Such a constrictive lifestyle along with the pain, the 24/7 aura, and the darkened and blurry vision with the ocular migraines; also the instant sledge-hammer pain and super nausea and weakness caused by the Thunderclap Episodes which happen day or night without warning.

12. During a migraine attack, I worry most about: Vomiting or crying – which doesn’t help at all and, at least for me, certainly makes things worse because once I start, I can’t stop. Also that I’ll go into one of the Complicated Migraine neurological events.

13. When I think about migraine between attacks, I think: [N/A – there is no such thing as an in-between attacks for me.]

14. When I tell someone I have migraine, the response is usually: “I know my aunt’s brother’s sister’s co-worker’s neighbor who was cured by __________. I know if you did it, you would be cured instantly as well.”

15. When someone tells me they have migraine, I think: Oh, that poor thing; Lord help them.

16. When I see commercials about migraine treatments, I think: I wish.

17. My best coping tools are: My faith in a good and sovereign God, and my trust that Jesus is in charge of me –not the pain and migraine disorders, not all the risk factors they like to tell us.

18. I find comfort in: See #17. Also my family and friends. When I can see well enough, my enjoyable activities for distracting and occupying myself.

19. I get angry when people say: See #14. And then when they won’t drop it, even when I say that after 5 years at this level, I have tried everything that I could afford or insurance would cover, then when I don’t jump on their suggestion, and they look and me and say, “Don’t you want the pain to go away?” Really??!!!

20. I like it when people say: “I’m praying for you.” Or, “I just wish you didn’t have that awful stuff” (lovely concern and thoughtfulness). Or my sister saying, “Let me come and get you and we’ll get out and about some today (knowing that our outing will completely wrap around migraine issues).

21. Something kind someone can do for me during a migraine attack is: Just look at my eyes to make sure I’m functioning at a level I should be, or if not, talk with me on what to do, or take me by the hand and unobtrusively get me to a safe and quiet place and just wait with me until I’m back. My family pays for me to have Netflix so that I don’t have all those flashing commercials; and a friend bought me ChromeCast so that I can watch it on my TV.

22. The best thing(s) a doctor has ever said to me about migraine is: After trying everything that insurance will cover, my neurologist researched natural supplements, and went himself to the health food store and purchased for me a bottle of supplements to try… Now that’s a concerned and involved healthcare professional!

23. The hardest thing to accept about having migraine is: AURA — 24/7 aura, Alice in Wonderland aura, multiple aura sizes, shapes, moving, undulating, flashing, electrical effects constantly going on all at the same time, trying to sleep through aura, and trying to see through aura.

Besides the aura, the pain, lack of functionality, and loss of decent eyesight.

At this level I don’t have much of a life, and even when I try to, I am so limited in what I can try/do; and there are only a couple of people who can take being with someone who may or may not start getting disoriented and/or shutting down when out and about, or willing to exit at a moment’s notice if I find myself strongly reacting to something.

24. Migraine has taught me: Everyone has something; or if it’s not them, it’s someone they love – people are struggling everywhere. Mine happens to be excessive migraine-related issues.

Today I’ll just do what I can and flow with what is, and try to add whatever bit of life to my life that I can.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: The Lord’s mercies are new every morning; great is HIS faithfulness.

Jesus is my Good Shepherd — and He calls His own sheep by name… I’m not in this alone in this.

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says, ‘I’ll try again

26. If I could go back to the early days of my diagnosis, I would tell myself: Stress makes things worse – be much more gentle and accepting of myself as I am, not as I “should be.”

27. The people who support me most are:

28. The thing I most wish people understood about migraine is: It’s as similar to a headache as a destroyer is to a fishing boat. It is a neurological disorder and its affects are systemic; calling me “one of those loony tunes” is so not helpful. It is good for me to laugh or do something fun even with head pain and not seeing well – my heart needs it!!

29. Migraine and Headache Awareness Month is important to me because: Like any other disorder or disease, trying to obtain awareness/understanding and research for helpful medical discoveries is so very important.

30. One more thing I’d like to say about life with migraine is: Yes, of course, I do realize that it is scary looking when I get a bit disoriented or start to shut down, I am certainly not insensitive to that; but within a few minutes of being out of that particular trigger environment, I’m functional enough to decide the next move. It is do-able and I would be so grateful not to be so isolated.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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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My Migraine Life

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine
2. My migraine attack frequency is: 3-4 per month lasting 5 days to 2 weeks
3. I was diagnosed in: 1984
4. My comorbid conditions include: Diabetes
5. I take _5___ medications/supplements each day for prevention and _2___ medications/supplements to treat an acute attack
6. My first migraine attack was: When I was 9 years old
7. My most disabling migraine symptoms are: The inability to function mentally, vomiting
8. My strangest migraine symptoms are: Smelling and hearing things that aren’t there
9. My biggest migraine triggers are: Lack of sleep, hormones, and stress let-down
10. I know a migraine attack is coming on when: I get a tingling sensation in the back of my neck, I get confused easily, or I start getting visual interference
11. The most frustrating part about having a migraine attack is: Not being able to be a part of my friends or families lives, having to have my Husband pick up all my slack
12. During a migraine attack, I worry most about: What it’s going to take to get rid of this one, i.e. medication, money, strength, how long is it going to last, and what am I going to miss
13. When I think about migraine between attacks, I think: What can I do to not get another one, what part of my life will it disrupt, and how bad will the next one be
14. When I tell someone I have migraine, the response is usually: I’m sorry, then either crickets or stories about another person and how they successfully treated them
15. When someone tells me they have migraine, I think: I’m so, so sorry, how can I help, how can I make them not feel alone, what’s your protocol, who’s your doctor, and how long have you had them
16. When I see commercials about migraine treatments, I think: I wished you’d just stop. You make it look too easy and give those who don’t have them a false understanding of them. People then think that you are not trying hard enough because if you were, this would help and you’d be fine or it can’t be that bad, look at the people on TV. If there is a new treatment out there, my doctor will inform me or I’ll find it while researching on the internet.
17. My best coping tools are: Finding good doctors, knowing it won’t last forever (I’ve got to die someday), and hugs from my Hubby.
18. I find comfort in: Knowing the suffering isn’t in vain, understanding when I’m unable to be a part of family life, and kindness from others
19. I get angry when people say: It’s just a headache, if you had a healthier lifestyle, you wouldn’t get those, I know exactly what you are going through, you bring it upon yourself by not *insert vague notion of the latest pill, food, smoothie, remedy, treatment fad here*
20. I like it when people say: What can I do to understand what you are going through better, Is there anything I can do to help, and We’re sorry you can’t be with us for this special time, but we understand, hopefully next time will be better
21. Something kind someone can do for me during a migraine attack is: Understand that the reason I’m not with them isn’t because I don’t want to be, but because I can’t be, don’t take it personally
22. The best thing(s) a doctor has ever said to me about migraine is: I believe you and will do everything I can to help alleviate the problem, call me night or day
23. The hardest thing to accept about having migraine is: Losing any modicum of control over my life, having to have others take on my burden, having things fall apart around me (i.e. my job, my home, friendships) and not be able to do anything about it
24. Migraine has taught me: to have empathy for others who suffer, humility
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Life doesn’t last forever and it could be worse
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t try to have so much control over your life, relax and enjoy things more
27. The people who support me most are: My Husband
28. The thing I most wish people understood about migraine is: It’s a debilitating disease, not just a headache and there is no one answer for everyone, the resulting actions (or lack thereof) are neither personal nor simply not wanting to do something
29. Migraine and Headache Awareness Month is important to me because: It will help put the word out for those who are unaware and may trigger help in the department of research
30. One more thing I’d like to say about life with migraine is: I’m sorry migraine is my life right now and it takes everything out of me with little to nothing left for anyone else, I didn’t choose it, and please know that if I could do it (whatever it might be), I would

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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
2. My migraine attack frequency is: Daily
3. I was diagnosed in: 1977
4. My comorbid conditions include: Tension Headaches, Fibromyalgia, Trigeminal Neuralgia, and TMJD
5. I take 3 different medications/supplements each day for prevention and treatment. Also 3 different medications/supplements to treat an acute attack
6. My first migraine attack was: My mother and I both believe was at age 18 months
7. My most disabling migraine symptoms are: Sensitivity to sound/ Light, Extreme Pain, and Nausea
8. My strangest migraine symptoms are: Phantom Smells, vertigo
9. My biggest migraine triggers are: Weather, Loud noises and bright lights
10. I know a migraine attack is coming on when: I have frequent Yawning, visual disturbances, and or phantom smells
11. The most frustrating part about having a migraine attack is: Feeling helpless or lazy
12. During a migraine attack, I worry most about: Missing out on life
13. When I think about migraine between attacks, I think: Knock on Wood!
14. When I tell someone I have migraine, the response is usually: Judgement, Disbelief, or just disinterest
15. When someone tells me they have migraine, I think: Depends on if I Know them. If I KNOW they truly have Migraines, Sincere Empathy. otherwise, I sometimes think THEY don’t really understand what a Migraine is
16. When I see commercials about migraine treatments, I think: Pftt. I wish that worked!
17. My best coping tools are: essential oils, self relaxation, being quite, and lastly, mostly as a last resort, medicating
18. I find comfort in: online support groups
19. I get angry when people say: Have you tried Goody powders? or Excedrin, or the Green smoothie?
20. I like it when people say: That sucks. Feel better
21. Something kind someone can do for me during a migraine attack is: Acknowledge that I am NOT faking or looking for attention. Fix me a drink (soda), or bring my meds or coping tools to me.
22. The best thing(s) a doctor has ever said to me about migraine is: Wow! You really have tried it all! Lets see what we can do to help you
23. The hardest thing to accept about having migraine is: There will Always be people that do NOT understand, or do not believe me.
24. Migraine has taught me: Life isn’t Fair
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Breathe! Just Keep Breathing.
26. If I could go back to the early days of my diagnosis, I would tell myself: This is a real Dx, You did Not ask for this, and you are NOT a burden
27. The people who support me most are: My Partner and online friends
28. The thing I most wish people understood about migraine is: It is so much more than just a Headache, even a Bad Headache
29. Migraine and Headache Awareness Month is important to me because: I suffer and so do a LOT of my friends. Many just do NOT get it.
30. One more thing I’d like to say about life with migraine is: If you LOVE me, then you have to accept that whether I like it or not (and I do NOT), I have Chronic Migraines. I only want acceptance.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.