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My personal battle with NDPH

This is a reader-submitted story.

1. I have had NDPH for 19 months. The headaches are ALWAYS in my right eye and the back of the right side of my head. Sometimes they’ll wrap around the right side of my head into my ear and neck.
2. They started November 25, 2013. Two days after I returned from a family vacation in Mexico.
3. After the headaches started, it took 18 months to get (what I think) is the correct diagnosis. Original diagnosis was greater occipital neuralgia, then cervicogenic headaches.
4. My pain level fluctuates but is always present. I used to one or two days off a month, but none for the last 6 months.
5. My typical pain level ranges from a rare 3 (if I’m lucky that day) to an 8.
6. In addition to pain, my symptoms include: Light and noise sensitivity, my eye feels as if it’s bulging out of my head, very painful throbbing (to my heart beat), and sharp stabbings. I have trouble ‘finding’ words when I speak. When I type, I mix words up and spell them wrong. Exhaustion. I am tired all the time.
7. Treatments I have tried include: (here we go…)

  • numerous medications
  • cortisone shots x 3
  • acupuncture
  • chiropractor
  • physiotherapist
  • IMS treatments
  • a sleep apnea study
  • massage therapy
  • CT Scan
  • MRI
  • cutting my hair off (maybe the weight was making my headaches worse)
  • the Healing Hand of God (I’m not kidding)
  • marijuana
  • marijuana pills
  • Peppermint Halo Wand
  • peppermint essential oils
  • yoga/exercise/stretching/meditation/relaxation
  • diet (no MSG, no artificial sweeteners, no alcohol, no caffeine, going vegetarian, no wheat)

8. I take __5__ medications/supplements each day for prevention and __1__ medication when the pain becomes unbearable
9. When the pain gets bad, I retreat to my bedroom, close the curtains and sleep. For me, heat at least lifts the tightness in my neck and shoulders. Drugs do little to nothing so I only try them when I’m desperate.
10. The most frustrating part about having NDPH is: that it is very resistant to treatment.
11. Because of NDPH, I worry about: my husband and daughters. Also, my career or what’s left of it.
12. When I tell someone I have NDPH, the response is usually: Oh? Have you tried _____? Yes, yes I have.
13. When I see how little research and information exists on NDPH, I feel: Frustrated. Because it’s a fairly new classification so few people have heard of it and it’s hard to become educated in the diagnosis.
14. Having NDPH has affected my work life by: Forcing me to go on disability while I fought for my diagnosis and now appealing a gradual return to work while I have no income. It makes me so angry.
15. Having NDPH has affected by family life by: Creating a role reversal. My husband is now the cook, cleaner and nurturer because my headaches make me unable to assist most days. I miss our ‘normal’ family.
16. The one word that best describes my experience with NDPH is: debilitating
17. My best coping tools are: sleep, darkness, my heating pad and the patience of my family.
18. I find comfort in: my bed, and from my husband and children.
19. I get angry when people say: How’s your head? It’s the same answer every time and I get asked the question repeatedly by the same people. I realize they’re trying to be supportive but I’m tired of the pity or disbelief.
20. I like it when people say: Why don’t you just go lie down, I’ll take care of this.
21. Something kind someone has done for me in relation to NDPH is: My husband offering to rub my neck and make dinner (all the time).
22. The best thing a doctor has ever said to me about NDPH is: We have options. Don’t give up hope.
23. The hardest thing to accept about having NDPH is: Waking up each morning afraid of how bad the day will be.
24. Having NDPH has taught me: That I’m replaceable at work. It doesn’t matter how many years of heart and soul you put in, in the end you’re just a number and hey don’t care whether you in pain, you just need to get the job done or look elsewhere.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: “Just keep swimming, swimming, swimming.” ~Dory~
26. If I could go back to the early days of my diagnosis, I would tell myself: To start looking for answers sooner. Your body is telling you something is wrong. Don’t ignore the signs hoping it will just go away.
27. The people who support me most are: My husband, daughters and my parents.
28. The thing I most wish people understood about NDPH is: it’s not just a headache. It’s a headache every day, all day, of varying intensity. And as much as you say you empathize, you can’t possible understand what I’m going through.
29. Migraine and Headache Awareness Month is important to me because: I honestly had no idea there was such a thing until today. I’m so happy I found this forum and that I’m not alone.
30. One more thing I’d like to say about living with NDPH is: I am thankful for my amazing support system, and your health is the most important thing. Take care of yourself and don’t give up.

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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What Are YOUR 30 Things About Living With Migraine or a Headache Disorder?

Migraine and headache disorders 30 Things memeYour early response to the 30 Things meme is so exciting! I love learning about how you all cope with migraine, CDH, and NDPH and know that other readers will learn much from you (and hope people with other headache disorders will be represented, too). Some responses have even brought me to tears, like:

“My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.”Take & Give

This reader’s insistence on gaining something from migraine is a wise approach to retaining the upper hand. So often, refusing to give the upper hand is synonymous with barging through life as if in perfect health, which often leads to worsening symptoms. Instead, this reader recognizes the loss and limitation of having migraine, but also what can be learned and gained from it. It is wisdom I try to live by, though I’ve never described it so eloquently.

Be sure to check the 30 Things Meme category and Twitter and Facebook for more insight from readers. To keep you from being overwhelmed by 10 times as many posts as usual, reader submissions are not going out by email, in RSS feeds, or on the homepage of The Daily Headache. I’ll be highlighting comments throughout Migraine and Headache Awareness Month, which starts June 1, but there’s no way I’ll be able to share them all with you.

Will you share your 30 things? Here are the instructions and links to questions: Migraine and Headache Disorders 30 Things Meme. You can tell your story and remain anonymous, if you choose. (You need to put your name and email in the form to post, but I’m the only person who will see them and I won’t send you spam.) It’s a great chance for a short reflection on your life with a headache disorder. And, each story has it’s own URL, so you can send the link to friends and family, if you wish.

P.S. I’m putting together a contest from Migraine and Headache Awareness Month and will draw winners from 30 Things submissions. I’ll share details next week.

 

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Take & Give

This is a reader-submitted story.

1. My diagnosis is: Chronic Daily Migraine
2. My headache frequency is: Daily
3. The first headache I remember was: 9 years old
4. My pain levels range from: 2-8
5. I was diagnosed in: 1996
6. My comorbid conditions include: Asthma, GERD, Menière’s Disease
7. I take __6_ pills each day for prevention and __2__ pills to treat an acute attack
8. In addition to pain, other symptoms I experience include: light, sound, & smell sensitivity; dizziness; aphasia; fatigue
9. Treatments I have tried include: Dozens of preventive & abortive meds, Botox, Therapeutic Massage, Chiropractics, Yoga, Meditation, Auditory Therapy
10. During a severe headache, I: take meds, rest, use heat
11. My headaches get worse when: bright/flashing light, loud noise, stress
12. The most frustrating part about having a headache disorder is: isolation from life
13. Having a headache disorder causes me to worry about: not being able to do all I need to do
14. When I tell someone I have a headache disorder, they usually say: [blank stare]
15. When I see articles about headache disorders, I think: I’m glad they are getting attention & study
16. My best coping tools are: faith/prayer, positive thinking/focusing on blessings, stretching/yoga, hydration, rest, time w family enjoying quiet distractions, pets
17. I find comfort in: faith, family, pets, Netflix, reading, Facebook migraine groups who “get it”
18. I get angry when people say: nothing! When they don’t acknowledge my daily struggle!
19. I like it when people say: How are you? I’m sorry you have to deal with this. How can I help?
20. Something kind a person can do for me during a severe headache is: Just say they care. I can never hear that enough.
21. The best thing a doctor has ever said to me about having a headache disorder is: You’re a strong person.
22. Having a headache disorder has affected my work/school life by: I can’t work outside the home anymore.
23. The hardest thing to accept about having a headache disorder is: The unrelenting PAIN and lack of compassion that you discover in people.
24. Having a headache disorder has taught me: God will sustain me and I’m far more bad-a$$ that I ever imagined!
25. The quotation, motto, mantra, or scripture that gets me through severe pain is: “Life’s challenges are not supposed to paralyze you, they are supposed to help you discover who you are.” -Bernice Johnson Reagon
26. If I could go back to the early days of my diagnosis, I would tell myself: You can handle this. You are stronger than you realize.
27. The people who support me most are: My husband, children, and parents.
28. The thing I most wish people understood about headache disorders is: They are neurological diseases.
29. Migraine and Headache Awareness Month is important to me because: It is an opportunity to educate people about our disorders.
30. One more thing I’d like to say about my headache disorder is: My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

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30 things about my headache disorder

This is a reader-submitted story. 

1. My diagnosis is: chronic migraine
2. My headache frequency is 5 or 6 a week, with about 3 afternoons in bed each week
3. The first headache I remember was in Ireland on a yoga retreat, 7 years ago
4. My pain levels range from:3 – 9
5. I was diagnosed in: 2006
6. My comorbid conditions include:
7. I take anti seizure pills each day for prevention and triptan pills to treat an acute attack
8. In addition to pain, other symptoms I experience include: weakness, nausea, verbal aphasia, light sensitivity
9. Treatments I have tried include: dietary restriction, acupuncture, chinese medicine, biofeedback, cefaly, massage, triptans, beta blockers
10. During a severe headache, I go to bed,draw the curtains call my husband home from work to take care of the kids
11. My headaches get worse when: I’m under stress, lack of sleep, stimulation or intensity of any kind even positive or when I’ve been having a lot of headaches
12. The most frustrating part about having a headache disorder is: not the headaches, it;s the headaches being chronic, never being able to plan or look forward to anything, having to miss out on so much and grieving the things you miss.
13. Having a headache disorder causes me to worry about: the future.
14. When I tell someone I have a headache disorder, they usually say: ‘have you tried acupuncture’, or ‘I used to get migraines’ or’what causes them’?
15. When I see articles about headache disorders, I th ink:
16. My best coping tools are: hugs from my kids, breathingand medication
17. I find comfort in: my children
18. I get angry when people tell me they know what it’s like.
19. I like it when people say: I’m bringing over food.
20. Something kind a person can do for me during a severe headache is: check in with me, i can disappear for weeks and weeks, offer to take care of my kids, bring food.
21. The best thing a doctor has ever said to me about having a headache disorder is:you are a valiant survivor.
22. Having a headache disorder has affected my work/school life by: making it very difficult for me to look after my kids, and to wonder if I will be able to work again.
23. The hardest thing to accept about having a headache disorder is: losing days, and not knowing if it’s ever going to get much better, feeling powerless.
24. Having a headache disorder has taught me: to look for balance, gentleness and to lead a very healthy life
25. The quotation, motto, mantra, or scripture that gets me through severe pain is:abide in me as i abide in you
26. If I could go back to the early days of my diagnosis, I would tell myself: you will surprise yourself at how much difference you can make, but you will also be surprised at how serious this is
27. The people who support me most are:my husband and children, (although they can ironically also be triggers!)
28. The thing I most wish people understood about headache disorders is: the difference between acute and chronic illnesses of all kinds.
29. Migraine and Headache Awareness Month is important to me because: spreading awareness
30. One more thing I’d like to say about my headache disorder is: I wish it would stop.

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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Roni’s Daily Headaches Meme

This is a reader-submitted story. 

1. My diagnosis is: chronic daily migraines
2. My migraine attack frequency is: daily
3. I was diagnosed in: high school
4. My comorbid conditions include: none
5. I take triptans ___ medications/supplements each day for prevention and __abortives__ medications/supplements to treat an acute attack
6. My first migraine attack was: high school
7. My most disabling migraine symptoms are: eye pressure
8. My strangest migraine symptoms are:
9. My biggest migraine triggers are: fluorescent lights
10. I know a migraine attack is coming on when: eye pressure
11. The most frustrating part about having a migraine attack is: nothing helps
12. During a migraine attack, I worry most about: the length of attach
13. When I think about migraine between attacks, I think: it needs to end
14. When I tell someone I have migraine, the response is usually: I feel for you
15. When someone tells me they have migraine, I think: depends on the person
16. When I see commercials about migraine treatments, I think: interesting
17. My best coping tools are: darkness and rest
18. I find comfort in:my room
19. I get angry when people say: it’s just another headache
20. I like it when people say: do u need anything
21. Something kind someone can do for me during a migraine attack is: let me rest
22. The best thing(s) a doctor has ever said to me about migraine is: we will keep trying till we find something that helps you manage these migraines
23. The hardest thing to accept about having migraine is: I was denied fmla
24. Migraine has taught me: patience
25. The quotation, motto, mantra, or scripture that gets me through an attack is: I can do all things through Christ who strengthens me
26. If I could go back to the early days of my diagnosis, I would tell myself: do more research
27. The people who support me most are: my family
28. The thing I most wish people understood about migraine is: it’s not a headache
29. Migraine and Headache Awareness Month is important to me because:brings more attention to what we are going thru
30. One more thing I’d like to say about life with migraine is: it can be debilitating and stressful to all.

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.