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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>

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American Migraine Foundation’s Blog a Day

The American Migraine Foundation (the group behind the 36 Million Migraine campaign) celebrated Migraine and Headache Awareness Month with daily featured posts from five different migraine bloggers. It was a ton of great information and I was honored to be chosen to participate. The other bloggers who participated were Lisa Jacobson from The Daily Migraine, Sarah Hackley from The Migraine Chronicles, Michelle Tracy from The Migraine Warrior, and Anna Eidt from Brain Storm. (Check out their great blogs!) If you didn’t get a chance to see all the posts, they’re worth a look. Here’s the lineup:

  1. Moms and Dads With Migraine (Lisa)
  2. Early Second Trimester Migraines (Sarah)
  3. Dehydration as Migraine Trigger (me)
  4. Chronic Caregiver (Michelle)
  5. On chronic pain and depression (Anna)
  6. Migraine-15 Steps to Create and Environment Conducive to Wellness (Sharron)
  7. When in Doubt, Nap: 64 Inspirational Quotes from Chronic Pain Sufferers (Lisa)
  8. An Open Letter to My Pre-Migraine Self (Sarah)
  9. Migraine Hangover (aka Postdrome) (me)
  10. A Vanilla Cupcake and a Whisper (Michelle)
  11. Cures (Anna)
  12. Migraine: ‘I am a Person, Not a Diagnosis’ (Sharron)
  13. TMJ and Migraine (Lisa)
  14. Coping With Occipital Neuralgia Without Medication (Sarah)
  15. Sleep, Schedules, and Migraine (me)
  16. Chronically in Love: The V-Day Edition (Michelle)
  17. Migraine ≠ Headache (Anna)
  18. Migraine: What’s Stress ‘Let Down’ Got to Do With It? And Did Someone Say Stress-Management (Sharron)
  19. Heat+Glare+Sun=Migraine (Lisa)
  20. no post today
  21. Managing Your Migraines in the E.R. (Lisa)
  22. I’ve Always Depended on the ‘KID’-ness of Strangers — Talking to Children About Chronic Migraine (Michelle)
  23. On Thriving With Chronic Migraine (Anna)
  24. Effective Use of Medications for Migraine Relief — 5 Ways to Overcome Unmet Needs and Improve Our Treatment Outcomes (Sharron)
  25. Are You a ‘Spoonie’? (Lisa)
  26. 32 Bizarre Migraine Treatments (Lisa)
  27. Sunny Weather = Fewer Migraines? The Everlasting Hunt for Triggers (me)
  28. From Migraine to Mygraine (Michelle)
  29. On Pondering Parenthood With Chronic Pain (Anna)
  30. A Role for Integrative (Complementary) Therapies in Preventing the Progression of Episodic to Chronic Migraine, and Remittance (Sharron)

 

 

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30 Things Contest Winner!

Of the 129 contest entries, the randomly chosen winner is: 30 Things About My Headache Disorder. (Winner, check your email for instructions on how to claim your prize!) Thank you all for participating. Reading your responses and getting to know you has been a pleasure during a particularly difficult month for me.

Some responses from the winning entry that caught my attention:

The most frustrating part about having a headache disorder is: There is no cure for me right now. I have to wait for science to catch up. My doctors assure me I’ll be a wonderful, active grandmother.

Having a headache disorder causes me to worry about: Not being a good enough mother, wife, sister, daughter, friend; that my best is not good enough

My best coping tools are: Staying connected to my people. I isolated myself for years. Now I know that loving and being loved is the best medicine. Also, pushing myself to go out and keep my connections alive even when I just want to be safe in bed, very still, watching terrible tv to keep my mind off the pain.

I find comfort in: People that know me, warts and all, and still love me. People that believe me/in me. Fellow sufferers. Doctors that are pissed that they haven’t been able to help me yet and are never going to give up on me.
18. I get angry when people say: Judgemental things about people that have chronic headaches or migraines, or any chronic condition that is hard to understand, and as if they know what that person is going through. I’ve found that chronic pain from cancer is the only pain that people seem to accept as real. But Morrissey said it best: “It’s easy to laugh. It’s easy to hate. It takes guts to be gentle and kind.”

The best thing a doctor has ever said to me about having a headache disorder is: Make an appointment for a hug if you need to. We’ve maxed out what’s available now, but I’ll always have time to comfort and cry with you.

The hardest thing to accept about having a headache disorder is: Mourning the life your thought you would have. Accepting your new limitations. Having to re-evaluate your purpose in life.

Having a headache disorder has taught me: That I don’t know everything. I was quite judgemental before, didn’t realize how much because I thought I wasn’t, about so many things. I had it so physically easy, I couldn’t imagine that having a headache everyday, all day was even possible, that losing weight could be hard, that there are some things doctors can’t fix. I’ve been humbled, thankfully. For this I’m grateful beyond belief.

The thing I most wish people understood about headache disorders is: No one wants it. It’s not fun to not work when you can’t. I may go to the pool or beach, but I force myself every damn time because I can’t let my kids see me in bed all day, which is honestly where I always want to be. It worries them. You will never see me without a headache and if I’m out, it took A LOT to get there. My fellow headpain people push themselves like you wouldn’t believe! We are Sisyphean. Every day, we are pushing that boulder, but for us, we wake up never knowing how big that boulder is going to be.

By

Brianna’s 30 things about chronic daily headache

This is a reader-submitted story.

1. I have had chronic daily headache (CDH) for __16__ years.
2. The first headache I remember is: I was younger than age ten.
3. After the headache started, it took __11 years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates. Level fluctuates, but the pain is always there.
5. My typical pain level ranges from: 3-8
6. In addition to pain, my symptoms include: photosensitivity, phonosensitivity, nausea, racing heartbeat, dilated pupils, insomnia.
7. Treatments I have tried include: massage, chiropractic, homotherapy, many different medications both over the counter and prescription.
8. I take __4__ medications/supplements each day for prevention and __3__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: go to bed, dark room, take meds, try and sleep.
10. The most frustrating part about having CDH is: not knowing if it will be a good or bad day.
11. Because of CDH, I worry about: disappointing those I love.
12. When I tell someone I have CDH, the response is usually: how do you do it?
13. When I see how little research and information exists on CDH, I feel: frustrated and sad.
14. Having CDH has affected my work/school life by: I have had to cut back my work schedule severely.
15. Having CDH has affected by family life by: My husband has had to take over and help with the daily household chores.
16. The one word that best describes my experience with CDH is: altering
17. My best coping tools are: encouragement from family and friends.
18. I find comfort in: fuzzy blankets and soft pillows!
19. I get angry when people say: not really angry, but sad: “I had a headache yesterday, not as bad as yours…” As if they diminish their own pain by comparing it with mine, when pain is such a subjective and personal thing.
20. I like it when people say: I know this is difficult for you, but I’m really happy to see you here anyway.
21. Something kind someone has done for me in relation to CDH is: my best friend is in the process of helping me put together a migraine coping kit, for when I’m not at home and it gets bad.
22. The best thing a doctor has ever said to me about CDH is: you’re not a lost cause, and we can help you feel better.
23. The hardest thing to accept about having CDH is: there is no cure right now, no medications that consistently help.
24. Having CDH has taught me: patience
25. The quotation, motto, mantra, or scripture that helps me cope with CDH is: Isaiah 33:24 – “and no resident will say “i am sick.”
26. If I could go back to the early days of my diagnosis, I would tell myself: this isn’t your fault, and hang in there.
27. The people who support me most are: My husband, my parents, and a few close friends.
28. The thing I most wish people understood about CDH is: it is always there, if I look okay it is because I have my “everything’s fine” mask on.
29. Migraine and Headache Awareness Month is important to me because: if awareness is increased, perhaps we can get more effective management tools.
30. One more thing I’d like to say about living with CDH is: I’m working on dealing with the unreasonable guilt I feel when I have to say no. I want to make everyone happy, but I can’t do that, and take care of myself at the same time. Also, I’m trying to give myself permission to make my health a priority.

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.