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24/7 Migraines

This is a reader-submitted story. 

Let me begin by telling you that my NDPH are Migraines. I toiled with which section I should be completing. I chose this section so that you would know that it is possible to have a migraine everyday of your life. I have been told that this is very rare but it dose happen. So, this is “my story.”

1. I have had NDPH for _5___ years.
2. It started after: (Or just when it started if you didn’t have a precipitating event) I suffered with sporadic migraines for approx.30 years. On April 4th 2010 I woke up with a beast of a migraine that never went away.
3. After the headache started, it took _years____ [weeks/months/years] to get a diagnosis.
4. My pain level is steady/fluctuates: Fluctuates slightly
5. My typical pain level ranges from: 8 to 10
6. In addition to pain, my symptoms include: Sensitivity to light, sound, smell and heat
7. Treatments I have tried include: close to a hundred medications, a check for a PFO, 3 day hospital stay for timed injections of DHE, A TENS Unit, numerous nerve blocks with and without Radio Frequency, a Cefaly unit ($450 out of pocket) and Botox.
8. I take __0__ medications/supplements each day for prevention ( because I have tried everything they can think, including medications not intended for migraine prevention, ie. For Alzheimer’s, seizures etc.) and __2__ medications/supplements when the pain becomes unbearable
9. When the pain gets bad, I: which is all the time, I take Dilaudid 8 mg.
10. The most frustrating part about having NDPH is: I have no life. I only leave the house to go to the doctor. I can’t plan anything because I don’t know if the pain will only be an 8 and maybe a Dilaudid and 2 Tylenol will allow me to shower and dry my hair.
11. Because of NDPH, I worry about: reaching my mental and emotional limit and hurting myself to worry and take my mind off the pain.m
12. When I tell someone I have NDPH, the response is usually: come on, it’s only a headache.
13. When I see how little research and information exists on NDPH, I feel: Hopeless
14. Having NDPH has affected my work/school life by: not allowing me to do anything. If I do go out or have someone over, the extra external stimuli makes the following days a 10 on the pain scale. I had to medically retire only 5 years from full retirement (and over triple the wage).
15. Having NDPH has affected by family life by: relying on my husband for everything and I do mean everything. He even has to drive me to all my Dr appts. because I am afraid to drive because of my pain medication. Not only that, I cannot provide him any pleasure or excitement or even companionship.
16. The one word that best describes my experience with NDPH is: Loneliness.
17. My best coping tools are: my psychiatrist, antidepressents and sleep.
18. I find comfort in: seclusion
19. I get angry when people say: Take a couple Tylenol and get over it.
20. I like it when people say: I am so sorry. I don’t know you do it.
21. Something kind someone has done for me in relation to NDPH is: A friend drove 30 miles one way to have lunch with me after a Dr. appt When I am up and showered, teeth brushed and dressed (and she plans to do it again in a few weeks after another Dr. appt.)
22. The best thing a doctor has ever said to me about NDPH is: “Never give up hope.”
23. The hardest thing to accept about having NDPH is: having no life
24. Having NDPH has taught me: to know that even with my pain, there are others worse off than I.
25. The quotation, motto, mantra, or scripture that helps me cope with NDPH is: God never gives you more than you can handle.
26. If I could go back to the early days of my diagnosis, I would tell myself: “Keep your chin up.”
27. The people who support me most are: my husband, parents and best friend.
28. The thing I most wish people understood about NDPH is: it can be a living hell.
29. Migraine and Headache Awareness Month is important to me because: it draws attention to some of the things I am going through.
30. One more thing I’d like to say about living with NDPH is: Crying only makes it hurt worse.

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.

3 Responses to 24/7 Migraines

  1. Becky C says:

    I’m going through this right now. I’m at the 6 month mark of a migraine everyday 24 hours a day for the last 6 months. My neurologist just told me yesterday that he’s tried everything he can and has washed his hands of me. It made me cry which made my migraine worse (which was already at a 9). I feel your pain and the need/want to give up. But we can’t! We must get through this!

    • Becky, I’m so sorry you’re going through this, but am so glad to hear you’re not giving up! Please remember that your neurologist saying he’s tried everything only means that _he’s_ out of ideas, not that you are untreatable. I recommend seeing a headache specialist—-not all neurologists have adequate training in headache medicine. Here’s a list of certified specialists in the US: http://www.migraineresearchfoundation.org/diplomates.html. I hope you find relief soon.

      Take care,
      Kerrie

  2. Melinda Bradley says:

    My daughter is in her 12th month of this, trying to fight through her senior year of high school as a member of national honor society, a dancer, and choir member she was diagnosed with Lyme disease after 4 years of specialists and having her gallbladder removed because of constant stomach pain. Right now we’re contemplating going to ER to get an IV treatment because she’s been at an 8 for 3 days and we did have it under control at a 5-6. Her high school years have been stolen from her and she’s done nothing but work hard to go to college and now that stands in jeopardy we thought her Lyme specialist who has treated hundreds of thousands would have this almost gone by now but gets just won’t go away.

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