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underneath my invisibility cloak lurks…

This is a reader-submitted story.

1. My diagnosis is: Migraine with aura
2. My migraine frequency is: Varies. Depends on what triggers are “triggering”. Like weather or hormones.
3. I was diagnosed in: 1990’s.
4: My comorbid conditions include: Lyme disease
5: I take 0 medications as a preventive and 2 medications as abortive for acute attacks. I do take daily vitamins with focus on the B vitamins and also daily prescription
antacid and prescription digestive enzymes, plus bio-ident hormone.
6. My first migraine attack was: I can’t recall, but I know it was in my teens, though perhaps earlier as all the stomach aches/vomiting I had as a child are now thought to have been “abdominal migraines” because Dr’s feel that as an adult I still am getting this type along with and/or followed by a “traditional” migraine.
7. My most disabling migraine symptoms are: Definitely the pain. Although the myriad of other proteome symptoms get can be just as disabling. Often, I will feel the worst in the prodome/aura stage– just funky, not myself, very weak, ill, fuzzy headed, “on edge”, often with horrible stabbing stomach pain and then once the head pain arrives, I will feel more like myself, centered, stronger with easing off stomach pain. That’s not to say the headache doesn’t effect me, it does in all the classic migraine ways–needing a dark, quiet room, often vomiting, “done for the day”, take my meds and SLEEP, but yet, somehow I am already feeling better.
8. My strangest migraine symptoms are: How they manifest primarily on the left side of my body. I swear I can draw a line down the center and feel perfectly clear, eye able to focus, no fuzzy headed feeling, no Pain anywhere (head, “stomach”/torso), no numbness/tingling on right side and have all of that on the left!
9. My biggest migraine triggers are: weather, hormones, fluorescent lighting, bright sunlight IF I don’t have sunglasses on, gluten, msg and other artificial ingredients.
10: I know a migraine attack is coming on when: I start to feel fatigued/fuzzy around my left eye and also yawning a lot.
11. The most frustrating part about having a migraine is: Having to deal with the symptoms/feeling bad.
12. During a migraine attack, I worry most about: Letting others down/not getting things done/missing out on something I really wanted to do.
13: When I think about migraine between attacks, I think: Really, I don’t think about it. I don’t dwell on it. I just live the day before me.
14: When I tell someone I have migraine, the response usually is: Sympathetic.
15: When someone tells me they have migraine, I think: How sorry I am for them.
16: When I see commercials for migraine treatments, I think: Wow! That’s a lot of scary side effects. (I have avoided taking Triptans or ergots so far. And yes, I DO HAVE MIGRAINES).
17: My best coping tools are: Avoiding triggers as much as possible. Getting enough sleep, eating regular meals/snacks, staying hydrated, avoiding stress. Epsom salt baths, resting in a dark, cool room, ice pack, Vicks salve rubbed into sinus areas of face, taking abortive med’s. PHENERGAN. Also a foot rub and or neck massage can do wonders to help me relax and rest through it. And if all else fails a trip to the ER. Luckily that doesn’t happen too often.
18: I find comfort in: Knowing it’s a migraine. The support of my husband/family. Being able to take my med’s, a bath, rest. Knowing it’s not the end of the world…I’ve been through this many times before, “piece of cake” haha. I have really come to a place of acceptance about this and the symptoms I deal with due to Lyme disease. Is it a struggle? Heck yes! Do I like it? Are you kidding me? No, it sucks!! But, am I going to let it ruin my life? Not if I can help it. ..and so, every day I am determined to keep on keeping on. Sometimes, I falter. I moan and weep and wail and gnash my teeth and ask, “Why me?” But, after I finish my pity party, I pick myself up, dust myself off, shake my fist at it–and decide again to keep on and make the best life I can.
19: I get angry when people say: Anything that belittles what I deal with.
20: I like it when people say: How I am an inspiration/encouragement to them.
21: Something kind someone can do for me during an attack: Tell me to go rest. Take care of whatever I am trying to still do despite being in prodome or full-time migraine stage. Yes, I am that stubborn…I will often try to push through or finish a taks(s) so that I feel like I can stop and rest even though I am only going to end up making myself worse.
22: The best thing a doctor has ever said to me about migraine is: Validation.
23: The hardest thing to accept about having migraine is: Plans won’t always be kept. But then, even people without health issues don’t have this promise either. It’s all in how you view your circumstances. Nothing is cast in stone. We never have total control. Only God does. I can let go and just live.
24: Migraine (and Lyme) has taught me: To be even more flexible than I innately am. To do the best I can under the circumstances/symptoms of any given day and be happy with whatever I am able to do. To not beat myself up, this is nothing I’ve chosen. But, I can choose how I react to it.
25: The quotation, motto, mantra, scripture that gets me through an attack is: “Seek out the happiness within Life’s crappiness”, “Cie la vie and a handbasket!”, “Put one foot in front of the other”, “You are not alone”, ” God will take care of you”, and James 1:2-3.
26: If I could go back to the early days of my diagnosis, I would tell myself: “You’re going to have some really hard, scary symptoms, but you’re going to be ok.”
27: The people who support me most are: My immediate family and my church family.
28: The thing I wish people understood about migraine (And Lyme disease) is: That just because I “look good” or am out and about– doesn’t mean I feel fine. I wish they understood the Herculean effort it often takes for me to be able to present a “pretty appearance” and to be out at the grocery or other event or how “doing things” usually means I pay for it with days of recovery time. How this is something that impacts my life CONSTANTLY.
29: Invisible Illness awareness (which of course includes migraine) is important because the more we educate others to understand these diseases that can not always be seen on the surface, the more support can be given to those that suffer.
30: One more thing I’d like to say about life with Migraine (and Lyme) is: You can still live a good life. It may not be the life you hoped for, but it can still be good and fulfilling. You just have to learn how to accept the change and challenges, adapt your daily activities based on your day’s symptoms, and adjust your perspective of how life “should be”…in fact, throw out the should’s! They only serve to make you feel “less than”. You are not less than! You are more than capable to handle this and you are blessed with strength and grace to do so. You are more than “good enough” XOX.

Reader-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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My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic Migraine both with and without aura
2. My migraine attack frequency is: Four to five per week
3. I was diagnosed in: circa 1990
4. My comorbid conditions include: Reunaud’d syndrome, fibromyalgia, IBS
5. I take five medications/supplements each day for prevention and four medications/supplements to treat an acute attack
6. My first migraine attack was: somewhere around 1983
7. My most disabling migraine symptoms are: sensitivity to light and scents, and pain.
8. My strangest migraine symptoms are: when my hair hurts and when half of my face and head feel hugely swollen (when they aren’t). Oh, and I crave cold food.
9. My biggest migraine triggers are: SUNLIGHT, lack of sleep, barometric pressure changes (usually when it drops, but any change can be a trigger), dehydration, and many smells (onions and perfumes are big ones) and any kind of flashing or strobing lights.
10. I know a migraine attack is coming on when: my vision blurs and I get nauseated.
11. The most frustrating part about having a migraine attack is: how it limits my activities.
12. During a migraine attack, I worry most about: what my husband is having to do for me because I can’t.
13. When I think about migraine between attacks, I think: how hard it is to find a cure because everyone’s migraines are so different.
14. When I tell someone I have migraine, the response is usually: “I get them, too.” I’m amazed at how many people have them.
15. When someone tells me they have migraine, I think: “You poor soul,” and I wonder if there’s anything I can help them with.
16. When I see commercials about migraine treatments, I think: I wonder if it’ll really make a difference. Then I wonder if my insurance will cover the likely high price of the treatment.
17. My best coping tools are: A darkened room, my feather pillow, ice pack, and audiobooks.
18. I find comfort in: my husband, PJs, and my bed.
19. I get angry when people say: You have ANOTHER headache?
20. I like it when people say: They understand.
21. Something kind someone can do for me during a migraine attack is: different things at different times, really. The biggest help is when someone (my husband, usually,) just keeps my glass full for me so I don’t have to leave my dark room.
22. The best thing(s) a doctor has ever said to me about migraine is: I can help you.
23. The hardest thing to accept about having migraine is: how life-limiting they are.
24. Migraine has taught me: to appreciate little things.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I dam not really have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: it’ll get worse before it gets better, and to avoid narcotics whenever possible – in the long run, they don’t help at all.
27. The people who support me most are: my husband and my daughter.
28. The thing I most wish people understood about migraine is: they’re different from “regular” headaches.
29. Migraine and Headache Awareness Month is important to me because: it helps spread the word about migraine.
30. One more thing I’d like to say about life with migraine is: I hope my friends don’t give up on me. One day, I hope to have a life without headaches.

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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Like Being Allergic to Life

This is a reader-submitted story.

1. My diagnosis is: migraine with aura; migraine without aura; migraine variant (abdominal migraine, syncope migraine, confusional migraine, precordial migraine)
2. My migraine attack frequency is: about three a week that are mild and 3 – 4 a month that are intense
3. I was diagnosed in: 2008 at the age of sixty and began a treatment regimen for the first time
4. My comorbid conditions include: Lupus
5. I take __5__ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: possibly in 1955 when I was first hospitalized at the age of 7 and they could find no reasons for my symptoms
7. My most disabling migraine symptoms are: fatigue, cognitive dysfunction, nerve tingling/pain left side of face and left hand, symptoms that mimic a stroke and symptoms that mimic a heart attack
8. My strangest migraine symptoms are: yawning, can’t find the right words to talk, bubbles swarming toward me like bees
9. My biggest migraine triggers are: weather, certain foods, bright lights, being tired, smells, emotions (happy/excitement) . . . it’s like being allergic to life
10. I know a migraine attack is coming on when: the left side of my face starts burning/tingling
11. The most frustrating part about having a migraine attack is: feeling left out of the lives of my family and friends
12. During a migraine attack, I worry most about: how my life is affecting others
13. When I think about migraine between attacks, I think: about how I’m winning because I finally have a diagnosis, a great support team and am making progress
14. When I tell someone I have migraine, the response is usually: “I’m glad you only have migraines. I thought you were really sick.”
15. When someone tells me they have migraine, I think: what has their battle been like
16. When I see commercials about migraine treatments, I think: I’m glad I have a primary doctor and a neurologist that I can trust to guide me through the maze of “treatments”.
17. My best coping tools are: relaxation, massage therapy and distraction
18. I find comfort in: my husband and my faith
19. I get angry when people say: “l have migraines and they don’t stop me.”
20. I like it when people say: “I’m glad you’re able to enjoy today.”
21. Something kind someone can do for me during a migraine attack is: “Don’t correct me or finish my sentences when I’m struggling to talk. I’m just not always able (or willing) to tell you that (for me) it’s a migraine symptom.
22. The best thing(s) a doctor has ever said to me about migraine is: “You have Migraine and I can help you.”
23. The hardest thing to accept about having migraine is: That it’s a neurological storm that is capable of attacking anytime, anywhere.
24. Migraine has taught me: a) I am a strong person and a survivor b) I am able to help others because of my health challenges.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” 2 Cor. 3 – 4
26. If I could go back to the early days of my diagnosis, I would tell myself: “You did it! You survived. Now, you can begin to get help. It’s going to get worse before it gets better, but just be patient and trust them.”
27. The people who support me most are: my primary doctor, neurologist, husband and family
28. The thing I most wish people understood about migraine is: It’s a neurological storm that attacks individuals in different ways and not everyone responds to the same medicine or treatment in the same way. Sometimes it takes lots of trial and error to find the right mixture for a particular person. No two storms are exactly alike or respond in the same way.
29. Migraine and Headache Awareness Month is important to me because: It gives us an opportunity to become more informed about migraine and what is happening in the migraine community.
30. One more thing I’d like to say about life with migraine is: that this neurological disease that has no tests to prove or disprove its existence is a constant battle that requires patience and support from the patient, doctor, family and friends, and strength for those that are gripped in this monster’s tentacles.

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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Crisis, Fear, Heartbreak… and Peace of Mind?

lightning“Hellish” does not sufficiently describe the last couple days. 16 hours after the last infusion ended, I suddenly, shockingly developed a migraine aura. This is disconcerting because I have migraine without aura. The closest I’d come to an aura before Saturday is that I occasionally get faint flashes in my peripheral vision after a migraine attack is already well in progress. These are so minor and indistinct that my diagnosis is still migraine without aura. This time, bright, flashing lights filling my vision marked the start of increasingly severe auras that come on each time I eat. They aren’t just visual. I feel dizzy and like I’m going to faint, I become bereft and irritable, I see gray splotches and flashing lights and have tunnel vision. (Interestingly, of the four times this has happened, the aura has not been followed by other migraine symptoms.)

I know enough about migraine to know this is not an unusual aura (so I wasn’t worried I was having a stroke), but the sudden, dramatic change was scary. More terrifying were the thoughts that this would become my new normal, that the life I knew six months ago will never again be mine, that yet another treatment I tried would worsen my symptoms permanently, that I will never again feel like my migraines are manageable.

With the second aura, Sunday morning, I started methysergide, a migraine preventive my doctor prescribed for me to start after the infusions. Like DHE, methysergide is an ergot. Also like DHE, methysergide cannot be taken with triptans or Midrin. A 24-hour buffer between an ergot and triptans or Midrin is required. I had that because of the DHE infusions, so it seemed like a good time to start.

Things just got worse. I was still testing to see what my food reactions were, so I was eating more than the usual twice a day. Sunday, I had three auras, each with worse mood symptoms than the previous one. Those words are ridiculously insufficient to describe what I felt. The last aura left me sobbing, heartbroken and terrified. I was in some of the most intense grief I have ever endured. I felt like someone dear to me had died. I felt like my life was ending. This was the migraine talking and I knew it, but that didn’t stop the fear. Hart found me crumpled in a heap on the bedroom floor, wailing and keening. He held me until I calmed down enough to fall into an exhausted sleep.

It is Monday afternoon. After some reading, I have cobbled together a biological explanation for the new-to-me aura and mood changes. This has soothed my mind somewhat, but is based primarily on conjecture. I have a call into my doctor. I have an appointment with him in July. I swallowed the last methysergide I will ever take at 10 p.m. last night. I ate for the first time today an hour ago and the aura symptoms seem to be taking longer to develop than yesterday. If a migraine/aura hijacks my mood again, I will listen to podcasts and follow a guided meditation on fear. Tomorrow, I will return to two meals a day followed by Amerge and Midrin. I have a plan.

I am still scared, but am no longer frantic. Loss of the life I’ve come to know no longer feels imminent. I have steps in place to reduce the frequency of migraine attacks that I believe will also reduce their severity. It may or may not work. Instead of worrying, I’m trying to stay with what is, not what might be. While panicking last night, I tried to remind myself that I only know this moment and cannot know the future. This has been a useful practice the last few months, but wasn’t comforting last night. Today it is. To say I am calm is a lie, but I’m experiencing some peace of mind. I am focused, determined, resolute, committed, resilient, present.

I can do this.

Whatever “this” turns out to be.

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My Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Episodic Migraine Without Aura
2. My migraine attack frequency is: 4-10 days/month
3. I was diagnosed in: Early high school
4. My comorbid conditions include: Hypothyroidism, Depression, Cold hands & feet
5. I take __0__ medications/supplements each day for prevention and __1__ medications/supplements to treat an acute attack
6. My first migraine attack was: Don’t remember
7. My most disabling migraine symptoms are: Extreme pain, heavy fatigue, nausea
8. My strangest migraine symptoms are: Food cravings (mainly salt) or forgetting words
9. My biggest migraine triggers are: Weather, hormonal, anything on the back of my neck (I can’t wear turtlenecks or heavy necklaces, for example)
10. I know a migraine attack is coming on when: My neck feels stiff
11. The most frustrating part about having a migraine attack is: Cancelling plans
12. During a migraine attack, I worry most about: When it will end
13. When I think about migraine between attacks, I think: I wish I knew when attacks were going to happen, so I knew when I should or should not make plans. I also wish there was a cure.
14. When I tell someone I have migraine, the response is usually: “So what?” or “My relative XYZ also has those,” followed by treatment advice that usually has nothing to do with Migraine.
15. When someone tells me they have migraine, I think: A sympathy buddy!
16. When I see commercials about migraine treatments, I think: Would it work? What are the side effects? Have I already tried something similar? What was the research this was based on? (many drugs are sold as migraine treatment when they were originally developed for something else)
17. My best coping tools are: Sleep & silence
18. I find comfort in: When I have an attack at home & can actually lay down instead of pushing myself. Also, my kitties who cuddle up with me when I’m feeling bad.
19. I get angry when people say: “It’s just a headache.”
20. I like it when people say: Anything that tells me they know how disabling migraine attacks are. It helps to be understood.
21. Something kind someone can do for me during a migraine attack is: Show me somewhere dark & quiet where I can lie down & not be disturbed. Also bringing me my meds, water, or food (if I am able to eat) so I don’t have to walk. Don’t expect me to make decisions about anything when I can’t think.
22. The best thing(s) a doctor has ever said to me about migraine is: “If that doesn’t work (referring to a treatment), there are plenty of other options we can try!”
23. The hardest thing to accept about having migraine is: There is no cure. It’s not going to go away. 🙁
24. Migraine has taught me: I am capable of pushing through more pain than I thought. It’s helped me in other areas (like a double foot surgery) where I wouldn’t let pain stop me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” (Romans 8:18)
26. If I could go back to the early days of my diagnosis, I would tell myself: Do all the research you can right away, and you can definitely improve things to a point.
27. The people who support me most are: My family
28. The thing I most wish people understood about migraine is: It’s a disabling, genetic neurological condition. It’s NOT caused nor cured by lifestyle changes, food, or positive thinking.
29. Migraine and Headache Awareness Month is important to me because: Stigma and lack of knowledge about Migraine has led to a lot of losses over the years, that may have been avoided if people understood more about this disease.
30. One more thing I’d like to say about life with migraine is: It’s one of the most misunderstood diseases today. Most people don’t understand how disabling it can be, or how much it impacts your life. Please be a friend and take the time to learn and research before making assumptions & suggestions. Thanks everyone!

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.