What if your headache never went away?

Helping people in your life understand what you are experiencing with NDPH can be difficult and frustrating. Is there a way to help them truly empathize?

A contributor to the site Empathize This came up with a comic strip about New Daily Persistent Headache that does a great job of illustrating what life is like with a constant, relentless headache.

They have given me permission to share it with you here.

ndph comicI think the ending really nails it. If I could get better I would. It addresses an issue that comes up for some of us – the implication that we are lazy, exaggerating or seeking attention.

To read the short story that goes with it, check out Empathize This.

What do you think? Maybe it needs to printed out in a brochure form so we can hand it out to the random people who suggest we try Imitrex because it works for their niece’s migraines or drink more water because it helps their brother with his tension headaches!

Oh, would that be rude?

Maybe we could just smile and say “it’s not a migraine, but thanks for the suggestion” and hand them a copy?


Comments

What if your headache never went away? — 17 Comments

  1. I literally laughed out loud at the immitrex comment. I hadn’t heard the water one but that was funny too. My personal favorite is lead toxicity in my fillings. Next up is have you ever tried stopping all the drugs? And from the head of neurology at Temple – “maybe you should change careers”

    Thanks for the laugh. It was the one time today I felt good.

    • Glad to make you laugh Bob! If I had a dollar for every time someone suggested I give Imitrex a try I would be a rich woman! 🙂 I have definitely gotten the “maybe it’s all from stress” comment also, but as a mom of three, I always wonder what EXACTLY they suggest I do to take it easy?!

  2. How about the one I got when I went to the hospital emergency PRIOR to knowing it was NDPH. The headache was at about 6 months then, and the Emergency Admitting nurse suggested that perhaps I take a Tylenol!

    Now I listen and when people say “oh, I know so and so that have migraines too.” I nod and just say this is not a migraine.

    I think the name New Daily Persistent Headache doesn’t inspire credibility either, does it. Do you find you have to qualify the name?

    • I still – after 8 years – get the tylenol suggestion from people who know me and should know better by now!
      I agree that the name is kind of pointless, being that most people don’t seem to understand the words “daily persistent headache.” Maybe it’s because it seems impossible or unbelievable? I always have to explain, because I get the “look” that they have no idea what I just said.

  3. Amy, thanks for posting this, it really nails so many of the issues. I’ve always thought that ‘comics’, graphic ideas, sequential graphics (whichever term you prefer)are very powerful and they’ve done a good job here. There’s just something so unmistakeable about a lightning bolt in the head!

    I’m passing this along to my son, who is the one who has suffered with his head pain for nearly 12 years and, as I write this, I realize that it is now coming to a point where he’s had the headache for a longer period in his young life than he was without it. He’s 23.

    Thank you for keeping this blog going, I know it can’t be easy to do all that you do.

    • Thanks Nancy. I hope that your son will find relief soon or is able to manage the pain. It seems even more unfair when young people suffer from this, and 12 years is such a long time to be in pain like this.

  4. Accurate for me with the exception of the “some things make it worse.” Is this true for most people with NDPH? I’ve always associated noise, light and computer screens with migraine suffers. There are certainly things that make it worse, bathroom cleaning products or a good fight with the boyfriend will get it screaming worse, but the others I have never had a problem with.

    • I think it’s different for some of us. Bright sunlight would make my headache worse, and really loud noises (but only sometimes), but beyond that, nothing else would have a huge impact good or bad. Sometimes trying to relax -like laying on the couch – makes it worse.

    • Amy, thanks for your comment. At this point, he is taking pain medication and it has helped with the managing the pain…not a great long term solution, but he was at the point of not being able to cope.

      Leah, I think you have a good point, at least from my son’s experience. Due to neuro Lyme, he has had problems with loud noises, bright lights, etc. at times, but that’s not been a constant part of the headache scenario.

      Sometimes the pain is somewhat better or worse, though, but try as he might, he cannot link it to anything that he/we are aware of in terms of external conditions, diet or exercise. So extremely frustrating.

  5. Poem …

    The doctor says he doesn’t know wathe problem is.
    He has no name for the pain, he says it isn’t real.
    But you know it is, you feel it everyday .
    Some people have this problem too u know, this pain without a name.
    You cringe when u remember, the day your life was altered.
    You have no reason why or how u got this pain.
    Then suddenly one day you receive this pain without a name.
    Your life will never be the same again, but you learn to live with it.
    You go to doctors all the time, to see if they can help you, but they have no name for this pain.
    The pain is always there, and with it internal sadness, with the fact that life is full of uncertainty.

    my daughter wrote this in the 5th grade, when asked to write a poem. I cry every time that I read this, and I do not cry.

    The pain I may find a way to deal with, but the impact onmy family and my ability to leave the house are devastating.

    I am completing year 5 in March.

  6. Yes, it should be printed and available.
    My 20 year old daughter has been dealing with what MAY be NDPH (she is as yet undiagnosed) for the last 11 months, and we have become very aware of how people are treated when they have something wrong that no one can see or understand.
    She is doing her best to get through this, has good days and bad days, and has been through more attempts at treatment than most people (but probably not you) can imagine. We’ve had to type up a list of all the treatments that have been tried so that it’s easier to communicate with each new doctor, or the ER. And yes, she has been sent home and told to take ibuprofen or tylenol- when she is already taking hydrocodone and tramadol!! Hello, people. She has also had a provider refuse to treat her symptoms from side effects of new medications (severe dehydration and electrolyte imbalance), assuming she is “drug seeking” and/or “faking.” They have no idea how much she wants to be using NO drugs.
    We just came across your blog today (it was linked in an article). I’ll be reading through everything. Thank you.

    • Linda, I am so sorry to hear of what your daughter has been going through. It’s not surprising to most readers here, but it’s still awful. Your daughter is very lucky to have you on her side. It is so helpful to have someone believe you when you are in this situation and stand beside you in the search for help. Seeing the doubt and questioning on a loved ones face is worse than the head pain, in my opinion.
      Keep supporting her. She needs you! I hope you can find relief for her soon. 🙂

  7. My wife has suffered from ndph for almost 20 years now with no relief. It started at seventeen and has never let up. Glad you have some relief!

  8. I make chroinc pain vids to educate people.

    My latest video is for those who suffer from New Daily Persistent Headache, prompted by an email from one of my viewers.

    http://youtu.be/T4i7isJO8Ic

    Thanks for letting me share here with you. If you feel that any of my videos might help you to educate people in your life about chronic pain, please feel free to share them.

    Ken

  9. My current doctor says I have NDPH. I don’t think I do. My headache doesn’t resemble a migraine at all. But, it is daily and it is persistent. In fact, I haven’t had a headache-free day since I was 18. That was nearly 35 years ago. Medicine doesn’t help at all. I recently had Botox injections but that made it worse. I think the headache is cervicogenic in nature. I have a bulging disc in my neck. None of the neurologists/pain management specialists seem to think the pain has anything to do with the bulging disc. This is so frustrating.

    • Perry, it sounds like you do have ndph. It is not like a migraine, and doesn’t respond to treatment easily. If you look at some of the stories here on the blog and in the comments I think you will be able to relate to a lot them. It’s rare to find a medication that helps long term, but it’s worth the effort to keep trying.

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