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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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30 things about Penne’s life with migraines!

This is a reader-submitted story.

1. My diagnosis is: Chronic Complex Migraine without aura. I was first diagnosed in my 30’s. I would get a migraine once in awhile. When I did have a migraine it would put me in bed for a day or two. In 2011, specifically January 26, 2011, I got one of the worst migraines I have ever had. Since then I’ve been fighting on a nearly daily basis.
2. My migraine attack frequency is: Right now I’m still getting almost daily migraine attacks. They let up to about 2-3 a month during 2012, but have returned with a vengeance.
3. I was diagnosed in: The first time I was diagnosed was about 20 years ago.
4. My comorbid conditions include: I have some strange ones, like, excessive yawning, sleep disorders, depression, anxiety, moodiness, obsessive/ compulsive, etc.
5. I take ____ medications/supplements each day for prevention and ____ medications/supplements to treat an acute attack. Currently I don’t take any meds for prevention, although we have tried a myriad of meds. I take butorphonol and a triptan nasal spray for use when I first feel a migraine coming on. I have also had one botox treatment.
6. My first migraine attack was: When I was in my early 30’s.
7. My most disabling migraine symptoms are: Light sensitivity, pain, nausea, and the fear of not knowing when the next headache will come.
8. My strangest migraine symptoms are: Extreme fatigue and/or excessive amount of energy, brain fog, memory loss, food cravings, frequent yawning, sweating, and runny nose.
9. My biggest migraine triggers are: The only trigger I have been able to identify is the changing of the barometric pressure. I haven’t found any foods that trigger a migraine.
10. I know a migraine attack is coming on when: I start to feel a little dazed and I become clumsy. Many times my husband can tell before I can. He says I get a certain look in my eyes.
11. The most frustrating part about having a migraine attack is: It puts an immediate stop to anything I might be doing and it doesn’t allow me to make plans with any certainty. Many people have stopped inviting us to functions because we have had to cancel so many times. Migraine life is very lonely.
12. During a migraine attack, I worry most about: The pain and how long it will last.
13. When I think about migraine between attacks, I think: I find myself worrying about the next one, where will I be when it hits.
14. When I tell someone I have migraine, the response is usually: It depends on who I’m talking to. If it’s someone who knows about migraines they are empathic, but, if I’m talking to someone who has never had a migraine or simply doesn’t know what a migraine really is, they usually give me a look of dumbfoundedness. To many people who are not educated about migraines they think a migraine is “just a headache”.
15. When someone tells me they have migraine, I think: I feel bad for them, ask if there is anything they need, and make our visit short so they can get some rest.
16. When I see commercials about migraine treatments, I think: I used to wonder if the treatment would work for me. However, after years of trying so many I now don’t even pay attention to the commercials any more.
17. My best coping tools are: My rescue meds, laying down in a quiet room, ice packs, and listening to a book on my phone.
18. I find comfort in: My husband. He has been my rock throughout this whole time. I also find comfort in the idea of a cure and more education for the public.
19. I get angry when people say: Have you tried (insert one of a variety of home remedies)? It helps my headaches. Especially when someone suggests that I should try Excedrin Migraine.
20. I like it when people say: I understand, do you need anything?
21. Something kind someone can do for me during a migraine attack is: Get my meds, ice pack, water, eye mask, and just leave me in a quiet room.
22. The best thing(s) a doctor has ever said to me about migraine is: When I was given the diagnosis of chronic migraine, it felt like ok, now I have a name for this. Now, let’s get to work on how to minimize the impact of the migraines on my life.
23. The hardest thing to accept about having migraine is: There is no cure and I am not in control of my life.
24. Migraine has taught me: To make the most of the good days and to appreciate those that have remained a strong support to me.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: Don’t push yourself, you are not wonder woman, there will be bad days ahead but there will be good days too. Don’t give up!
27. The people who support me most are: My husband, and my niece who is really more like a sister.
28. The thing I most wish people understood about migraine is: There is so much more to migraines than the pain in your head, and that they can last for days.
29. Migraine and Headache Awareness Month is important to me because: Actually I just recently found out that June is migraine awareness month. I’m glad that there is something out there trying to bring awareness to the public. I believe education is the key to understanding.
30. One more thing I’d like to say about life with migraine is: It’s very unpredictable. Life is still wonderful and full of happy moments. I’m thankful for my diagnosis because there are so many people who don’t have the privilege of having a good day every now and again.

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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Farm Wife, Nana

This is a reader-submitted story.

1. My diagnosis is: chronic migraine without aura
2. My migraine attack frequency is: 3 -6 month
3. I was diagnosed in: 1980
4. My comorbid conditions include: depression, arthritis
5. I take __2__ medications/supplements each day for prevention and ___4_ medications/supplements to treat an acute attack (not all at once)
6. My first migraine attack was: when I was pregnant at 19
7. My most disabling migraine symptoms are: pain
8. My strangest migraine symptoms are: fatigue
9. My biggest migraine triggers are: MSG, bright sunlight, extreme heat or cold.
10. I know a migraine attack is coming on when:
11. The most frustrating part about having a migraine attack is: missing out on fun with family
12. During a migraine attack, I worry most about: how long it will last and if the medication will work.
13. When I think about migraine between attacks, I think: when will the next one be? How can I plan?
14. When I tell someone I have migraine, the response is usually: sympathy…
15. When someone tells me they have migraine, I think: how horrible for you!
16. When I see commercials about migraine treatments, I think: should I ask my dr about this or is it a hoax?
17. My best coping tools are: prayer, sleep, darkness, quiet
18. I find comfort in: a soft blanket, scripture
19. I get angry when people say: you just need to drink more water
20. I like it when people say: you must be a strong person to have raised. 6 children while suffering migraines .
21. Something kind someone can do for me during a migraine attack is: massage my neck.
22. The best thing(s) a doctor has ever said to me about migraine is: we just have to try different things until we find what works for you. But we Will help you.
23. The hardest thing to accept about having migraine is: it is unpredictable.
24. Migraine has taught me: life cannot be planned 100%
25. The quotation, motto, mantra, or scripture that gets me through an attack is: “Bless The Lord, O My Soul, and all that is with in me praise His Holy name”
26. If I could go back to the early days of my diagnosis, I would tell myself: this will be a journey
27. The people who support me most are: my husband!
28. The thing I most wish people understood about migraine is: just how painful it is
29. Migraine and Headache Awareness Month is important to me because: it recognizes the importance of my condition .
30. One more thing I’d like to say about life with migraine is: it is much better because of preventative medication. I hoped they would stop after hysterectomy but didn’t. So I may always have them?

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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Author, Public Speaker and Migraine Warrior

This is a reader-submitted story.

1. My diagnosis is: Chronic Severe Migraine with Aura and Episodic Hemiplegic Migraine

2. My migraine attack frequency is: I have migraine almost daily, either via a new episode or an extended one that stretches over a 48-72 hour period

3. I was diagnosed in: 1996 I was diagnosed by my primary physician; however, it wasn’t until summer 2003 that I had my first hemiplegic episode and the following year, 2004, one of the top neurologists in the US diagnosed me as “Chronic Severe” and told me that the bad headaches I experienced off and on as a child for a few years in the early 1970’s (I used to sometimes get headaches so bad that I could barely function; and the Dr kept saying maybe I needed glasses! after a 2nd visit, the eye dr said “he has 20/20 vision; stop bringing him here wasting your money!) were actually migraines; but in those days, he said Drs rarely ever diagnosed children with migraines.

4. My comorbid conditions include: Depression. It gets really bad!

5. I take _3___ medications/supplements each day for prevention and __2__ medications/supplements to treat an acute attack. Over the course of the past 11 years of my migraine journey, I’ve tried 7 different prevention meds and 6 different treatment meds. Some worked for a while then stopped; and some never worked at all.

6. My first migraine attack was: as I explained above, it was actually around age 6, in 1970

7. My most disabling migraine symptoms are: Head pain and throbbing; neck stiffness; tingling/numbness; extreme fatigue; nausea; very sensitive to lights and smells; and over the past year, I’ve begun experiencing Vertigo, I also find my concentration and focus is severely diminished

8. My strangest migraine symptoms are: Cravings and more cravings; constantly thirsty!

9. My biggest migraine triggers are: certain lighting; ANY trace of cigarette smoke; smells certain cooked foods (esp. eggs and hot coffee); that’s just for starters; not to mention stress and aggravation

10. I know a migraine attack is coming on when: the back of my neck begins to stiffen, and the back of my neck at the base just below/in the indentation of my head begins to pulsate; at that point, I know its ON! often times this will occur before an aura.

11. The most frustrating part about having a migraine attack is: having to completely alter a day; either thru decreased productivity or total shutdown

12. During a migraine attack, I worry most about: how much further I’m falling behind; and how I have to cancel something planned with my children and/or family

13. When I think about migraine between attacks, I think: I’m grateful for a pain-free moment or day; lets play catch up!

14. When I tell someone I have migraine, the response is usually: I’m sorry to hear that.

15. When someone tells me they have migraine, I think: I only hear this from a few people who call a “bad headache” a migraine; so I try to be empathetic, but knowing almost for certain that they have NEVER had a migraine. They have no clue.

16. When I see commercials about migraine treatments, I think: Been there, done that; next?!

17. My best coping tools are: rest, quiet, more rest and just disconnecting from people and things as much as possible

18. I find comfort in: some of my family members and a few close friends that get it! also, knowing that I’ve always found a way to bounce back, even from the worst episodes, ER visits, hospitalizations, etc.

19. I get angry when people say: Oh, I get bad headaches sometimes too. Or when they want to suggest every “Grandmas remedy” or other “cure”, (oils, foods, sleep techniques, clothing!…………..) most all of which I’ve already tried at some point.

20. I like it when people say: “I can’t imagine what you’re going through; if there’s anything I can do, let me know.” I always appreciate that.

21. Something kind someone can do for me during a migraine attack is: Allow me space to just “be”, and not take it personal if I seem aloof or detached.

22. The best thing(s) a doctor has ever said to me about migraine is:We’ll keep trying til we find some relief for you.

23. The hardest thing to accept about having migraine is: its the ONLY health challenge I have, yet, its disrupted much of my adult life and has impacted me financially.

24. Migraine has taught me: the value of being appreciative and accepting what I can’t control; and most importantly, the value of time!! Be as productive as you can be, on the good days, as they are not promised.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: It hasn’t killed me yet, so truly I am stronger. I don’t “suffer” from migraines; I am a “migraine warrior”,

26. If I could go back to the early days of my diagnosis, I would tell myself: prepare for this to get worse before it gets any better

27. The people who support me most are: my family members, including my best friend and confidant who is not a “blood relative”

28. The thing I most wish people understood about migraine is: It’s not “just a bad headache”, and I truly have no control of it, and migraine disease has no rhyme or reason. The brain is beyond complex!

29. Migraine and Headache Awareness Month is important to me because: It raises awareness and moves us closer towards a public conversation and acceptance of migraine disease as a “thing” within the mainstream society.

30. One more thing I’d like to say about life with migraine is: Be grateful to the Creator for each pain-free day you have, each family member and friend who gets it, and certainly for each employer,director/ manager/supervisor, teacher, business associate, etc., who also gets it. Sad reality is, they are few and far between

 
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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Debbie’s Migraine Life

<em>This is a reader-submitted story.</em>

1. My diagnosis is: Chronic migraine

2. My migraine attack frequency is: Often daily, sometimes 15-20 migraine days per month

3. I was diagnosed in: My early 20’s I am in my late 40’s now

4. My comorbid conditions include: Neck and back pain

5. I take 2-3 medications/supplements each day for prevention and 2-3 medications/supplements to treat an acute attack

6. My first migraine attack was: Twenty some years ago due to hormonal fluctuations

7. My most disabling migraine symptoms are: Confusion, head and neck pain, pain, blurred vision, nausea

8. My strangest migraine symptoms are: Blurred vision, somewhat of an aura of nauseating blechhh feeling before any headache symptoms.

9. My biggest migraine triggers are: Wine, food, sleep, heat, certain smells, pulled back hairstyles, certain bras

10. I know a migraine attack is coming on when: A wave of nausea comes over me, followed a while later by sharp pain behind my eye

11. The most frustrating part about having a migraine attack is: Not being able to participate fully, missing work or trying to participate with work or family activities while feeling awful.

12. During a migraine attack, I worry most about: Disappointing my family

13. When I think about migraine between attacks, I think: About how much I appreciate feeling well.

14. When I tell someone I have migraine, the response is usually: Some recommendation of OTC medicine to try.

15. When someone tells me they have migraine, I think: I respond with compassion and empathy.

16. When I see commercials about migraine treatments: I usually have tried it already! Also, while I like the idea of not missing out on things, rest is still important during a migraine flare. The commercials will have you think that you will be running through a field of daisies with your children without missing a beat.

17. My best coping tools are: Abortive meds.

18. I find comfort in: Pajamas, some quiet couch time.

19. I get angry when people say: You really need to figure out about these headaches. Ummm.. ok!

20. I like it when people say: I am so sorry, can I get you anything?

21. Something kind someone can do for me during a migraine attack is: Offer to fix something quick to eat so that I can keep my meds down.

22. The best thing(s) a doctor has ever said to me about migraine is: There are a lot of things we can try. Also, that many women get better after menopause.

23. The hardest thing to accept about having migraine is: That I need to take a break from whatever is going on, and include rest in my treatment along with the abortive meds. I tend to just keep on going.

24. Migraine has taught me: To be compassionate towards others with chronic illnesses. Also, that today may be a bad day, but tomorrow will be better.

25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass.

26. If I could go back to the early days of my diagnosis, I would tell myself: Find a neurologist who is a headache specialist and start trying different treatments.

27. The people who support me most are: My husband, kids and dogs.

28. The thing I most wish people understood about migraine is: Migraine is a chronic neurological illness that affects the entire body.

29. Migraine and Headache Awareness Month is important to me because: It reminds me that I am not alone in this.

30. One more thing I’d like to say about life with migraine is: Chronic migraine affects the entire body. Sometimes it feels like something horrible is really wrong, like a stroke or worse. I am trying to accept this as a chronic illness, and learn my limitations, and how to handle my bad days so that maybe I will be back to my good days faster. One thing that is very frustrating is dealing with the insurance company in getting the proper amount of medication to treat the amount of migraines that I have. If I could schedule fewer headaches per month, I certainly would but the thought of having one without medication is just awful. While I am on daily preventatives, I haven’t had great luck with them. I hope that new and better medicines are developed.

<em><a href=”http://www.thedailyheadache.com/wp-content/uploads/2015/06/MHAMgiveaway.png”><img class=”alignright wp-image-8336″ src=”http://www.thedailyheadache.com/wp-content/uploads/2015/06/MHAMgiveaway-300×234.png” alt=”MHAMgiveaway” width=”205″ height=”160″ /></a>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 <a title=”Migraine &amp; Headache Disorders 30 Things Meme” href=”http://www.thedailyheadache.com/30things”>share YOUR 30 Things</a> about living with a headache disorder.</em>