What if Your Headache Never Went Away?

what if your headache never went away - ndph

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What if Your Headache Never Went Away?

Panel 1

[Image] A woman sitting on the edge of a bed, holding her head.

[VFX] Lightning marks coming out from her head

[Caption] I woke up with a headache three years ago. It hasn’t gone away.

Panel 2

[Image] Camera, speakers and computer.

[SFX] Bright Lights, Loud Noises, Computer Screens

[Caption] It’s called NDPH and it means that everyday all the time, I have a headache. There’s no cure. Some things make it worse

Panel 3

[Image] The woman, holding a list that says “To Do”

[Caption] In the moments I can cope

Woman: Hold on! It’s not as bad! Now’s my chance!

Panel 4

[Image] Multiple images of the woman merged into one, each doing something different: typing on a compuer, chopping vegetables, hammering a nail, holding a paintbrush, holding a cell phone.

Panel 5

[Image] Woman on the couch with her hand on her forehead. Her hand hangs off the side of the couch holding the To Do List.

[VFX] Lightning marks coming out from her head

[Caption] Then the pain comes back and I spend all my free time collapsed.

Panel 6

[Image] The woman in a chair, seen from the back, holding her head. Some distance in front of her are three nondescript people, standing and smiling, talking to each other.

[Caption] It makes me feel like a failure.

Panel 7

[Image] The woman still sitting in the chair. The three nondescript people have morphed into an angry crowd, one of them holding a sign in protest, all facing the woman.

[Caption] It doesn’t help that some people think it’s a punishment by God. Others just tell me to “suck it up.”

Panel 8

[Caption] Sometimes I wish I had something more serious. It hurts that my pain doesn’t matter to the people around me.

Panel 9

[Image] The woman sitting on a bed, holding her head.

[VFX] Lightning marks coming out from her head

[Caption] This is real

Panel 10

[Image] The woman in front of a computer screen, holding a mouse. She is holding her head with her other hand.

[VFX] Lightning marks coming out from her head

[Caption] This is my life

Panel 11

[Image]  Woman on the couch with her hand on her forehead. Her hand hangs off the side of the couch holding the To Do List.

[VFX] Lightning marks coming out from her head

[Caption] If I could get better, I would. I promise.

I woke up one morning with a headache three years ago. It hasn’t gone away.

I have been diagnosed with a condition called New Daily Persistent Headache (NDPH). This means that every day, all the time, I have a headache to some degree. I’ve seen countless doctors and had tests done and tried countless medications and other solutions, and while I have found a couple of things that significantly help, the headache never completely goes away. There are certain things that make my head hurt even worse than normal, including bright or flickering lights, loud noises, certain foods, physical exertion, and stress. As such, sitting in a classroom with fluorescent lighting is difficult. I cannot go to concerts. When my friends run, I must choose between being left behind or running to catch up and cause my headache to get even worse. Looking at a computer screen for too long is painful. There are so many things I would love to do, but I simply can’t.

My friends and family who know me well know about my condition, but very few truly understand it. I know they are trying and that means the world to me, but it’s hard when I have to either correct/remind them about it, or decide to suffer through something that is difficult for me. Some days, I simply can’t cope with the constant pain.  In the moments I can cope, I feel like I ought to be working and productive, so instead of living my life, I work until the pain comes back, and spend my free time collapsed and not moving. But I cannot live that way, so I feel like a failure. I’m doing the best I can, but it will never be good enough. Sometimes I wish I had something more serious so people would try to tell me how to fix it. No one tells a cancer patient to “just suck it up,” or “take some Advil, you’re fine.” I know they mean well, but it is tiresome. It is not easy living this way, but the combination of others not knowing and trying to help is even more draining. Some people at church pray every week for me, and I have to tell them every Sunday that no, I’m still not better. Others think I am possessed by some sort of demon or am sinning against the Lord so he is withholding healing. It hurts that my pain doesn’t matter and that people I thought I knew believe I am being punished.

This is real. This is my life. I would get better if I could, I promise…

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10 Responses to “What if Your Headache Never Went Away?”

  1. Geertje September 8, 2013 at 12:50 am #

    Looks like someone has written down the story of my life….
    I have ndph for almost 13 years now….

    Twitter = geertje1985

  2. Amy September 30, 2013 at 1:19 pm #

    Story of my life too…8 years into NDPH and starting to feel a little better, but sometimes I want to scream at people for not understanding that this pain is really and constant and although I can sometimes function, it’s only because I’m strong. Like a superhero. But only sometimes. 🙂

  3. Joyce Ross November 1, 2013 at 2:49 am #

    Tonight I discovered the name to what I suffer from. January 10, 2007 is the anniversary of my headache, that never goes away. I would love to have a copy of this cartoon to post on my facebook wall, so that people understand me, if they care to understand or know what I suffer from everyday of my life. Every day I hope that I will be granted time on this earth, once again, without a headache that never goes away. I wish I could scream my story to millions upon billions of people on this earth, that one hit to my head was the beginning of this nightmare I live in called NDPH.

    • Tak November 1, 2013 at 11:44 am #

      Thanks for your heartfelt comment, Joyce. We generally don’t give out copies of the comic – but you’re always welcome to share the link to this page on your Facebook wall.

  4. Miaka May 5, 2014 at 4:12 pm #

    There’s actually a NAME for that? None of the doctors I’ve seen in the past decade or so have even hinted that it might be anything with a name. I get migraines. Sometimes it’s hard to tell if I have a migraine or if it’s just the everyday headache getting worse. I can’t always tell what made it worse, though it definitely doesn’t seem to like when I’m sick. Or on my cycle. Or stressed, over anything.
    Thankfully, I can still manage most normal functions, most of the time, and my husband is quite understanding. I can still go to the mall, take public transit, go see a movie, even attend a concert (ok, maybe I had to psych myself up for that, but I REALLY wanted to go!). I don’t generally run, but there are other reasons for that and my family and friends are well aware of them. I did run to catch a train once, and my body informed me in no uncertain terms that it did NOT appreciate that. (I got on the train, though. However, I think the conductor who held the train long enough for me to catch it was a little annoyed at me, because none of my limitations are particularly visible.)
    Thank you for this. It’s nice to know I’m not alone, and that there’s actually a medical term for the ‘everyday headache’ I’ve lived with since I was 19 (I’m 30 now).

  5. Cheryl June 4, 2014 at 1:40 pm #

    I can totally relate. My headache started in November of 1989 and has never gone away. Nothing helps. I’ve decided to live the best life I can despite the pain, because the alternative is to never get out of bed. It’s not an easy life, and nobody really understands, but God has blessed me in so many other ways, that I make the choice every day to get up and serve Him.

  6. Karen October 2, 2014 at 8:51 am #

    I am just coming up to the one year anniversary of my never ending NDPH headache. Like probably everyone else here, I have had doctors think it was hormonal, physical, neck-related, called occipital neuralgia, and now, finally NDPH. I am on my third neurologist, have had many mri’s (with and without contrast dyes), tried multiple medical approaches, seen physio’s, chiropractors, pain specialists and acupuncturists, and, of course, have still had no real rigorously considered medical advice about how to fix this. So in short, I am very definitely in the NDPH boat.
    Right now I am trying to come to terms with the idea that I am going to have to give up my life as an academic as it is not, as has been noted elsewhere in this feed, possible to give life and work the “all” it needs, in-spite of our superhuman efforts on a daily basis. Even super heroes get to have time of as their “normal” alter egos. Wouldn’t it be nice if we could too?!
    Its great to find a relatively new thread on NDPH as many that I have found are many years out of date.

  7. Varun January 31, 2015 at 6:42 am #

    NDPH has also ruined my life. I can’t complete any of my daily activities and all i can do is sleep and lie down for 12-15 hours a day. Its frustrating and nerve-wracking.

  8. Gehayi September 4, 2015 at 1:27 pm #

    One of my closest friends has this. She’s had meds and operations and nothing makes the pain go away. I hate NDPH. It’s not fair that anyone has to endure this.

  9. jr November 18, 2015 at 10:06 am #

    I developed NDPH at 14, now I am 22 and doing much better. I found after this much time you learn how to deal with it better but it is very hard when family and friends don’t understand. There is hope so don’t give up. I found a lot of help at an NDPH forum on a site called mdjunction. After all these years I finally found medicine that helps so keep trying and hopefully you can find some relief.

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