What is NDPH?

New Daily Persistent Headache or NDPH is characterised by a 24/7 often migraine quality headache that is unremitting from the day of onset. For some people the pain can build up over 2-3 days and on the third becomes unremitting. Most NDPH patients remember the exact day of onset, many the time and what they were doing when it started.   I certainly do.

In the beginning you just think it’s a really bad normal headache, so you take some ibruprofen or paracetamol, and maybe go and try to sleep it off. But you wake and it’s still there. And it’s there all day, its there when you go to sleep and again when you wake. This repeats day after day, month after month. At some point you seek medical treatment, but there isn’t much anyone can do every test comes back normal, yet you still have this raging headache all the time.

You try medication after medication, procedure after procedure, alternative treatments. None of which help much if at all, but you try anything and everything to ease the pain. NDPH is resistant to most treatments, some say it is the most resistant form of headache to have.

NDPH is like a light dimmer switch, then pain goes up and down but never fully off. I can never predict when I am going to have a bad day or a bad couple of days and have to spend it all in bed because I can’t do anything because my head hurts so much I can’t move.. My headache has a mind of it’s own, fluctuating when it wants.

In most cases it wrecks havoc on your life, causing people to have to drop out of school/college or leave their job because they can’t cope. As time goes on many people get more and more depressed due to being in pain 24/7. Many friends and family don’t understand your pain and it makes you feel alone and helpless.

I want you to imagine having the worst headache you’ve ever had. How do you feel? I bet you feel horrible right? I bet all you want to do is curl up in a ball and sleep the pain away. Now imagine if that headache never went away. Close your eyes , it’s still there, strong as ever. How would you feel. I bet you would feel pretty damn miserable right. Imagine feeling like that all the time. Imagine being in pain all the time. That’s what my life is like every minute of the day, every day.

 

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28 thoughts on “What is NDPH?

  1. I’ve got a friend who suffers from this, and as a migraine girl myself, I can (somewhat) relate. I’ve had migraines last for over two weeks, at a constant of about 8, and no one gets it unless they’ve been there.

  2. You’re right…chronic pain sucks. Luckily, I don’t have migraines but I do have chronic pain. I often have to ask people if they’ve ever had heart attacks and if so to imagine how it felt. Then to imagine feeling like that every day, better or worse. It never goes away and is rather persistent in stopping common daily activities. Chest is only my worst pain, but it is bodily. Kudos to you for continuing on the (quasi) functioning train!

  3. I’m have NDPH for 2 years now. Tried everything, does anybody know a way to ease the pain just a bit? Only for a day is good. Just want a day without or with les headache!
    Sorry for the spelling I’m from Holland.

    • I don’t know anything sorry nothing has ever helped me. I too would like some relief if only for a hour or so but I’ve had no luck in my search for relief. Sorry to hear you are suffering too!

  4. I have suffered from persistent daily migraines for 18 straight years. I am now in the midst of finding medical treatment, but none of the drugs they have given me have had any effect, only adding side-effects that are not worth the treatment. I am lucky however, to live in a medicinal marijuana state which has proven to be the only relief for this pain so far. Even though this only numbs the pain, it is so far the only treatment that has had any positive effect and without the side-effects of antidepressants such as amytriptyline and the entire triptin family. The other pharmaceutical solutions listed only served to make me sleep for fifteen straight hours without any change in pain when I awoke. From the above forum, NDPH may in fact be my diagnoses as these are my symptoms: persistent feeling of being hit in the head by a ball bat (24/7), nausia, and clouding of vision during severe noughts.

    • Sorry to hear you have been suffering for so long, it truly is horrible. But that’s good you have something to at least give you a bit of relief. I’ve tried marijuana (not illegally though, it’s not legal in the UK) I found it helped the pain but it gave me a horrible seizure, I have a heart and blood pressure condition which causes black outs a seizures and it seemed to make that a lot worse, so I haven’t tried it again since that as I don’t want to repeat that horrible experience to be honest. Definitely sounds like from what you are saying that it’s NDPH.

  5. I have no idea if you’ve tried this, but I saw an advertisement for it, so I thought I’d put the information out there. The advertisement was about using a botox injection once every three months for persistent headaches and migraines. I have migraines on a daily basis. I’m on amitriptyline, but when the air pressure changes, it eats right through it. If the air pressure stays relatively steady, I’m alright on those days. I’ve just learned to live with it, because I can’t afford to move out of this awful state, to one where the air pressure doesn’t change more than five times a day. I might consider the botox, but some of the side effects don’t sound very appealing.

    • Thanks, I’ve had Botox twice actually but it did nothing to help me, on the up side I didn’t get any side effects. Sorry to hear you suffer from migraines, definitely give Botox a go if you can, I know a lot of people with NDPH and chronic migraine that it has helped.

  6. I was recently diagnosed with this yet I’m not convinced I have it. My pain levels fluctuate during the day and so does the location of the pain. At one point, I will have it behind the eyes, an hour later it will be in the back of my skull. I’m not finding a lot of research on this or a lot of people who suffer from it. I have been on numerous medications and to numerous doctors, but this is the only thing they are giving me. I’m frustrated and beginning to get depressed as well. What do you think of your diagnosis? Do you think this is the neuros go to when they don’t know what the hell is wrong or do you think there is some truth to it.

    • My pain levels fluctuate a lot too, between a 5/10 to 10/10 on the pain scale never lower than a 5 though. But the location never really changes much when it’s bad though the pain covers a larger bit of my head but it always stays at the front. I think that NDPH is just basically a diagnosis of they don’t know why the hell you have a headache all the time other than the fact you just do. Not much is known about it which leads me to believe it’s just a name for a constant headache. Saying that though i fit the exact criteria for it, but it still is hard to believe that there isn’t a reason for my pain and that it just happened and no one knows why. I spent 4 years trying to find a reason why I always have a headache and trying so many medications and treatments which didn’t work and didn’t do me any good. I’ve now stopped my search and am working on accepting my condition which has done me a lot of good however I’m still in a lot of pain (especially today, it’s really bad and I’m in bed). I’m sorry you are suffering from a constant headache too and that you are starting to get depressed. If you ever fancy some good support there is a closed Facebook group for people with NDPH and it’s really helpful and supportive, has done me a lot of good.

  7. I noticed you stopped by my blog today. and say me say..NO headache…I want you to know, when I say that, it doesn’t include my chronic daily headaches….or as you call them NDPH. I have had them since I was 11. They stay about a 2-3 now, I’m used to it so much now I say I “send it to the back”…I just send it to the back of my consciousness. some days it nags me enough that I can’t, it screams at me and makes me notice it. I know it’s not a migraine, sometimes it tricks me and I think it is and I take my migraine medicine and it does not work.

    The mindfulness studies I do help a lot, I didn’t realize that I was kind of doing that a lot all along, that’s what I was doing when I pushed it to the back. I’m aware of my pain, I’m in the moment with it, but I control it. I don’t know how I learned to do it. I just did.
    Now I do it more easily. Mindfulness Based Stress Reduction has helped me with a lot of my chronic illness, and I’m learning more and more….it’s a life time of learning and it’s the best thing I’ve ever done for me.

    I hate you have to live with this. You aren’t alone. I don’t even mention it as a headache anymore. No one wants to listen. My pain management doctor knows when I say no headache, or give my pain scale, I’m not including it…so we are good. Sometimes she’ll ask specifically about it. She has them too, so she understands. she’s an amazing woman. We have to be don’t we?

    • Ah okay, well I’m pleased anyway that you have less pain now!

      On good days mine hovers around a 5-6 on bad days I can get up to a 9. But I’ve recently learnt to live my life despite it, been in pain management therapy for it, that and my severe depression because of the pain. But I learnt acceptance of my pain also with the use of mindfulness also which I agree really helps. On good days now I find I’m not even thinking about the pain, sure it’s still there but it”s now at the back of my mind, which is probably helped a lot by the fact I’m no longer depressed. Learning acceptance was the best thing for me I feel more myself than I have since I got sick. Sure on bad days it’s bad but I no longer fall into a deep dark pit of depression anymore because of the pain. It’s definitely not easy, acceptance but it’s totally worth it.

      You doctor sounds good! And I’m very glad you are experiencing lower pain levels and I hope it stays that way for you!

  8. Pingback: Final months of a PhD…& finding out you’ve NDPH | MidnightThesis

  9. Dear Sian, I remember the date and the morning. I was in excruciating pain. I went to a chiropractor and he wouldn’t adjust me. Instead, he ordered the MRI for my neck. And my GP ordered the MRA for my head. Found a herniated disc. So I had ACDF C6-C7 surgery. Did not resolve my headache. Apparently one had nothing to do with the other. After seeing many doctors, it was the third neurologist that put a name to my pain. Like you, I don’t have a clue what keeps me going. Grace from above I guess. I just can’t imagine living the rest of my life this way. Not much matters!!

    • Hi Brian,
      Sorry to hear of your pain too, it’s not easy to deal with at all. I too struggle to imagine how I’m going to cope for the rest of my life like this too. You’re not alone!

  10. Hi my name is Martin I have had this for 4 years like most I can put it down to a exact day (and hour) I had a minor op the rest is history 2 days ago I went and saw Dr Duncan at Aberdean hospital I had written 2 dairies of 2 weeks of pain (alot of paper) within 2 mins he had told me what it was!! Here are some thoughts. Every time I have flown to aberdeen I have been put into A&E for a week with all the tests you can think of, it would seem that Different Air Pressure set it off. Like most l live with the pain and over time l manage to put most of the pain to the back of my head .I try not to bend over (to tie laces up) as this tends to start it off , light too has that effect .
    The other which is different from the norm is when I have a BAD one my whole body goes limp I cannot lift any limbs or speak when I had this for the first time they sent me to hos
    pital by ambulance they kept me in for 24hrs, i was sent home and the local doctor sent me in again the next day, again they kept me in for 24 hrs and then sent home again (I live in one of the islands of Orkney north of Scotland) Well thats my rant!
    I will leave with a thought from my younger days TO BE DEFEATED IS ONLY TEMPORARY TO GIVE UP MAKES IT PERMANENT I hope this will help someone
    Martin

    • Hi Martin. Sorry to hear you suffer from ndph too. I too remember the exact date and hour mine started, not uncommon for ndph patients.
      Sorry to hear you have such trouble with air pressure, I don’t have that problem.
      Feel free to rant.
      Thanks for the thought it’s a good quote!
      Wishing you a low pain day.
      Sian

  11. Hi again , Now that I have had a few days in bed, from getting back from Aberdeen hospital I have collected my thoughts ! I can only work up to a couple hours a day at gardening (sitting on a ride on mower), or hobbies, and then I have to call it a day ( it took me 3 months to build a shed , better times it would have taken me 3 days) but I built it. The dogs nag me to take them out which I and my wife do. I have to stop and call it a day at midday, but their is nothing wrong with my brain , which I try and use to it’s full, it not easy to do , l know my limits and if push it any longer I end up in bed and yes i get angry with myself but tomorrow is a new day so I make the most of it . I leave you with a thought there is always someone worse off than you
    Have a good day Martin

  12. I’ve been researching for months about this headache I got during my English class in school 10 months ago. I could never come up with anything, I saw multiple doctors, did many tests and scans including MRI to rule out anything bad. Everything came back clear and I just couldn’t understand. No one seems to understand that it is not just a regular reoccurring headache, it is never ending. What you’ve written here is exactly what happened to me. But I have not been diagnosed with NDPH, I haven’t been diagnosed with anything. I found out about NDPH a few months ago and it is the only thing that would make sense while not making any sense at the same time. I tried to ask my school for a little bit of help so that instead of doing sport I catch up on school I’ve missed out one due to the many appointments and also just because the amount of effort it takes to do things with this headache is unreal. None of my doctors have heard of NDPH and it makes me feel even more alone. I’m going insane. I’m nearly 17 and in my senior year of school, literally killing me.

    • Hi Sophie. Sorry to hear you’ve been suffering with a never ending headache too. It is very poorly understood and many doctors have never heard of it. I had difficulty in the beginning too. Have your school allowed you some time to catch up on work? I know how difficult it is with school, mine started when I was 15 and I never managed to complete school had to drop out unfortunately. Feel free to send me an email if you want to chat about anything. X

      • Hi Sian, sorry I just saw that you replied months ago. Thank you so much for replying by the way. I actually just found a neurologist in Australia who knew exactly what I was talking about and diagnosed me with NDPH pretty much straight away. I’ve posted a little bit about it on my own blog and I’m so glad I did. I’ve found more support there and other places online than I ever have with people I know personally. I’ll leave a link here too. http://www.cherriesandperfume.blogspot.com.au

        Feel free to have a read if your head isn’t at its worst ahaha. Thank you again! I really do appreciate the support 🙂

        -Sophie xx

  13. Hi Sian,
    My daughter has NPDH. She was diagnosed at 14, 6 months after it started. First they tried a number of drugs which did not work. When she was finally diagnosed they changed the regime and her headache came down, very slowly from 9 -> 4. Then ever so slowly down to 3 then 2 and got down to 1. They were hopeful that the headache would break in another 3 months or so if the treatment continued. She attended summer school this summer, all day everyday, a miracle 🙂 Then went to school all of September and then, wham, a concussion. Everything is all over the place now but appears to be settling around a 5. She is almost 16 now. I think they will readjust her medication in January if it is no better. I’m very concerned about her dropping out of high school, but I don’t know how she will get through. She has already missed over 30 days since September. I’m thinking about getting medical marijuana for her, higher CBD to THC ratio. Have you found out anything about dosing for that?
    Concerned mother, Kay

    • Hi Kay, sorry it’s taken me so long to get back to you!
      I’m so sorry you’re daughter is suffering from this too, mine started when I was 15 so I can relate to what your daughter is going through completely. However unfortunately I was not able to finish school because of the pain. I haven’t tried marijuana for my headache because I live in England so it is illegal even for medicinal uses. However my friend with NDPH in Canada uses it and it really helps him. I’m sure if you find a doctor willing to prescribe it for your daughter they might be able to advise you on dosage.
      Feel free to email me about anything.
      Wishing your daughter a low pain day.
      Sian

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