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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: 2-3 a week
3. I was diagnosed in: 1997 or 1998
4. My comorbid conditions include: depression/anxiety
5. I take _2_ medications/supplements each day for prevention and _3 medications/supplements to treat an acute attack
6. My first migraine attack was: first I vividly remember was 1994, but may have had one before that
7. My most disabling migraine symptoms are: light sensitivity/nauseaa
8. My strangest migraine symptoms are: increased smell sensitivity, strange cravings for spicy food
9. My biggest migraine triggers are: sleep deprivation, skipping meals, weather changes
10. I know a migraine attack is coming on when:I get a pain behind my right eye
11. The most frustrating part about having a migraine attack is: I have to just “drop out” of life
12. During a migraine attack, I worry most about: having a brain tumor
13. When I think about migraine between attacks, I think: how tired I am of always having to tell my husband I have another one
14. When I tell someone I have migraine, the response is usually: So, you have a headache, whatev…
15. When someone tells me they have migraine, I think: You have my sympathy…let’s talk drugs-what works for you (in the hopes that they might have a treatment I haven’t tried yet)
16. When I see commercials about migraine treatments, I think: Damn, already tried that…
17. My best coping tools are: Netflix (sometimes), drugs (for about 30 mins.), box fan
18. I find comfort in: Knowing there are a lot of us-there is research being done, and (sorry it is selfish) knowing others have it worse.
19. I get angry when people say: I recently found out my daughters talked between themselves about how I was exaggerating.
20. I like it when people say: I’m just happy when I don’t get questioned about it. Like if I say I have to go home or can’t come in or whatever, and they just say, ok, hope you feel better.
21. Something kind someone can do for me during a migraine attack is: don’t open the bedroom door-it makes the dogs bark-keep it dark and quiet.
22. The best thing(s) a doctor has ever said to me about migraine is: just naming it and beginning to prescribe “real” meds for it.
23. The hardest thing to accept about having migraine is: that I know I’m going to have another one…
24. Migraine has taught me: my ex-husband was an asshole. My second husband is a saint.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “It’s not a tumor” from Kindergarten Cop
26. If I could go back to the early days of my diagnosis, I would tell myself: Take your rescue meds earlier-it’s not going to go away.
27. The people who support me most are: My husband-he mostly leaves me alone and lets me rest-but checks on me every couple of hours or so to see if I need anything. He never complains, even though it has got to frustrate him to have to deal with me having headaches so often.
28. The thing I most wish people understood about migraine is: it’s not “just a headache!!!!!”
29. Migraine and Headache Awareness Month is important to me because: I want people to realize what we are dealing with and I want them to figure out how to “cure” us…
30. One more thing I’d like to say about life with migraine is: Thank god we don’t have to keep ice picks in the house anymore–I’d have already used it to stab myself in the eye by now. Sorry I didn’t put some inspirational quote, but this crap is miserable.

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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Jorie’s 30 Things About Living With Migraine

This is a reader-submitted story.

June is National Migraine and Headache Awareness month. I am not very candid about my struggle with migraine outside the realm of my close friends and family, but because this illness is so raw and affecting to me, I am choosing to join in on the “30 Things” challenge. Thank you to The Daily Headache Blog and Kerrie to being a constant support to me, even if I am usually a quiet, anonymous reader. You are such a strong, inspiring person. I constantly relate to you in terms of migraines, so thank you for your words and for launching this project.

1. My diagnosis is Chronic and Menstrual/Hormonal Migraine.
2. My migraine attack frequency is very sporadic, 100% of the time occurring around the time of my ovulation, menstruation, or any time I have any change in hormonal balance. So several times per month, and otherwise, it’s unpredictable outside of my known triggers.
3. I was diagnosed in 2005, at the age of 12.
4. My comorbid conditions include Generalized Anxiety Disorder, Menorrhagia, and a general unknown hormone imbalance
5. I take 4 medications/supplements each day for prevention and up to 6 medications/supplements to treat an acute attack.
6. My first migraine attack was around age 10 or 11.
7. My most disabling migraine symptoms are first, the excruciating, throbbing pain in my skull focused at my temples; second, the nausea and vomiting to the point of passing out; and third, the fact that I become incoherent and cannot make sense of my surroundings. I become tongue-twisted, lethargic, and eventually sleeping for 12+ hours is the only remedy I can resort to.
8. My strangest migraine symptoms are my pain patterns. For example, the pain predictably switches from one side of my head to the other. Also, I used to experience migraine with aura when I was younger, but my visual auras no longer occur, making it much more difficult to predict an oncoming attack.
9. My biggest migraine triggers are hormone imbalances (whatever the cause may be), odors (cigarette smoke, some candles, vehicle exhaust, gas fumes, strong perfumes, the list goes on…), extreme stress/anxiety (most notably being in a situation where I am “stuck” with a crowd of people, also known as agoraphobia), overheated body temperature (such as a long workout or being outside on a hot day), and very loud noises. There are others, but surprisingly I have never seemed to pinpoint any food triggers.
10. I know a migraine attack is coming on when I experience excessive yawning, accompanied by smelling a faint scent of something burnt, like matchsticks. I consider this to be my “new aura,” and my neurologist refers to this sensation as parosmia, or basically the medical term for olfactory hallucinations.
11. The most frustrating part about having a migraine attack is generally just missing out on life, cancelling plans, calling out of work, or spending anywhere from hours to a few days in bed. Oh, and I can’t forget about the “pill limit” placed by insurance companies. That’s a real bugger.
12. During a migraine attack, I worry most about: “Do I have enough medicine to take?” “I wonder how long this is going to last?” “Do I have enough sick time to use if I need to miss work for this?”
13. When I think about migraine between attacks, I think: “Is today a migraine day?” “When can I fill my next prescription?”
14. When I tell someone I have migraine, the response is usually: “Oh, my –insert relative here– gets those.”
15. When someone tells me they have migraine, I think: SOUL. MATE. Haha, but really, it’s really nice to have someone to relate to. I enjoy the “migraine talk.”
16. When I see commercials about migraine treatments, I think: “Please tell me more about those life threatening side effects.”
17. My best coping tool is a metal clothing hanger. I’m actually not joking about that. Anyone with migraine can probably tell you that they have tried the most far-out, crazy home-remedies to get rid of pain…and this is mine. Other than my hanger trick, a cold compress, lavender-menthol rub, and a comfortable bed are nice too.
18. I find comfort in someone believing me and empathizing with me. I’m not asking for a miracle, but realize that migraine is more than “just a headache.” Realize that I am truly disabled, and I am not able to be 100% there during an attack. To those who understand these facts, I am comforted by your presence in my life and I thank you to the moon and back.
19. I get angry when people say: “It’s just a headache. Why don’t you take some aspirin?” Or the ever popular, “I wish I could stay home all day and do nothing like you do.” Oh and I couldn’t forget the old adage, “You’re too young to be feeling like that!”
20. I like it when people say: “Just take it easy, I hope you feel better soon.” “It’s okay that you missed –insert event here–”
21. Something kind someone can do for me during a migraine attack is honestly, just leave me alone until I’m feeling better. I can’t handle someone constantly checking in, even if they mean well. Those close to me understand that if I have been cooped up in bed for 10 hours, I’m still fine, I’m just getting the rest that my body requires. Peep your head in to make sure I’m still breathing, quietly bring me a glass of water, and leave. That’s the best protocol.
22. The best thing a doctor has ever said to me about migraine is: “We will find a medication that works for you, and I am always just a phone call away.” And we did find a great medication! However, it’s still important to realize that I still struggle with migraines many days out of the month—this medication helps me attack a migraine when it begins (referred to as an abortive drug).
23. The hardest thing to accept about having migraine is that so much of my life has been taken from me. Living with this illness has wasted a huge part of my time, energy, and patience. It has destroyed friendships and opportunities. It has depressed me, guilt-tripped me, and hurt me emotionally. Migraine lives on after the recovery, because around every corner, it’s continues to lurk; you don’t know when it may jump out.
24. Migraine has taught me: 1. that no one understands you more than yourself. 2. Through pain there is growth, you will learn about yourself more and more through each attack. 3. Migraine is NOT who you are, it does not define you, you are more than your pain. 4. Never let a migraine make you feel guilty, nor blame yourself for your illness—it is not your fault, regardless of what anyone says. 5. Hold close those few individuals who really “get” what migraine is; don’t let those people go, because those are the people you will need when the going gets tough and it seems there is NO ONE on this planet who knows what a migraine is.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Every experience, no matter how bad it seems, holds within it a blessing of some kind. The goal is to find it.” This is a Buddhist proverb that I have always identified with, because I feel that, even though migraine is such a terrible, disabling illness, it might just be a blessing in disguise. There is a balance to everything in life; we must find the good in the bad. I have profoundly become more tolerant because of my battle withmigraine migraine—and I feel that this is good. I can endure, I am steadfast, I have a thirst for life. I will never give up.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Hang on, kid, it’s going to be a bumpy ride. But you’re going to get through it.”
27. The people who support me most are my mom and boyfriend, absolutely. Mom suffered migraines at my age, and never really overcame the disease until after pregnancy. My family and friends as a whole are mostly supportive and try their best to understand. It is difficult to understand what you have never experienced. My boyfriend has slowly, over the years, seen my illness in its gruesome details, I am thankful that he is there in my darkest hours.
28. The thing I most wish people understood about migraine is that migraine is truly debilitating. It’s not just a headache, and I am not “faking” my illness or my pain to get out of work, or an event, or a family gathering. Migraine has ruined many aspects of my life. Truthfully, I avoid the topic of migraine as much as I can. There is a stigma that surrounds migraine, which is why I’m joining the movement this month to bring awareness to migraines. People who live with this illness are humiliated, misunderstood, and pushed to by the side far too often. I’m writing this because I, too, am one of those misjudged, suffering wallflowers. But I have a voice, and it is important that I share it in hopes that others may identify and that I may educate.
29. Migraine and Headache Awareness Month is important to me because it raises a wonderful awareness to everyone else of something that I am intensely aware of every day of my life.
30. One more thing I’d like to say about life with migraine is: I don’t know what life is like without migraine; it affects every move I make. There is such a cause and effect that occurs while living with migraine, but ultimately, while the negative impact far outweighs the positive, I strive each day to find something good in my suffering, to see that little glimmer of good and be the best version of me that I can be, even through the pain. And it is my hope that other migraine or chronic pain sufferers can find that spark of good in life as well. Life is a beautiful blessing, and living in pain certainly blurs that beauty, but its still there. Sometimes its even clearer to us because we must fight to see it.

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 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.