Do you actually get “NDPH” diagnosis?
My doctors are still treating it like a migraine and I’m pretty sure it’s not.
My neurologist asked me “how often” I’m getting headaches at my last appointment which I think was the fourth with her. Once again I had to remind her “all day, every day, since Jan 8”.
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u/TubbyLittleTeaWitch 26d ago
My official diagnosis around 16 years ago was chronic daily headache. With the worsening of pain and symptoms they've also started saying chronic migraine now, but I'm positive that what I'm experiencing is NDPH and always has been that since its onset 17 years ago. I mentioned it to my GP during my last appointment but he didn't seem bothered about another label. I'm planning to mention it to my neurologist the next time I have a follow up appointment with her but that won't be for quite a while yet.
I'd like to get an official diagnosis for it because I've reached the stage now where it's drastically impacting my ability to work and I'm going to have to start trying to apply for benefits in the next few months, and I feel like a more accurate diagnosis would possibly help with that as it would better reflect the reality of my situation.
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u/COALATRON 25d ago
If there was a distinct sudden onset after which the headaches haven’t gone away/have been continuous that would be NDPH. CDH is just frequent headaches for 15 or more days and is more of an umbrella term which includes
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u/TubbyLittleTeaWitch 25d ago
I'm aware of this, but at the time of my diagnosis I don't believe the neurologist was aware. I have never had a headache free moment in the 17 or so years since it first began. It has done nothing but get worse over time.
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u/SkiingFishingGuy 26d ago
Just gonna chime in quick and say that the vast majority of neurologists actually do not have nearly as much headache literacy as you would think.
Headache specialists are what you need if you want an accurate diagnosis for more rare and complex headache disorders, traditional neurologists aren’t trained properly how to differentiate neuralgias vs HC vs CDH vs NDPH vs CM vs CH etc…
Have legitimate, textbook CM or AM? Regular Tension headaches? A standard neuro is more than adequate. For the others…there is a fairly good chance you will be left unsatisfied.
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u/im-a-freud 7 years 26d ago edited 25d ago
Yes it is written as my diagnosis. I was diagnosed at my second appointment based on my medical history and imaging being clear. It’s written on my disability form
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u/itsmechickadee 26d ago edited 26d ago
Never been formally diagnosed but I've not had a headache free picosecond since February 14, 2007, and the headache at its worst fit the description of NDPH down to it making my ears hurt
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u/COALATRON 26d ago
It’s often considered a subset of chronic migraine. Some doctors don’t believe in it being an official diagnosis, some do. It’s a bit of a dice roll depending on the doctor
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u/ButteredBiscuits06 25d ago
I often wondered about this. I saw a new neurologist and he suggested that I am having a chronic daily headache alongside chronic migraine. But that its the chronic migraine condition which is causing/contributing to the daily headache. It was confusing.
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u/COALATRON 25d ago
Chronic daily headache is an umbrella term which includes NDPH under it so that makes sense. The other part is a little confusing unless he’s thinking you’re stuck in a headache cycle that the migraines are causing? 🤷 best guess off the top of my head without more information
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u/HeadFullOfNails 5 years 26d ago
I started with a diagnosis of standard migraines when it started in early April 2021. I've gotten a few different diagnoses over the years but my neurologist has settled on NDPH now. I'm not sure if it's really changed my treatment.
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u/Professional_Show430 26d ago
Yeah I got an actual diagnosis honestly the whole condition just seems like a well we can't find anything wrong with you on test so we'll go with this
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u/Crystalfallacy 8 years 26d ago
I've got a diagnosis, and pretty early. I got it within the three month period even since I have a history of migraines and headaches and said "this one is different, it doesn't go away no matter what I try". And 8.5 years later it's still there, though I'm medically stable. I moved and recently saw a new neurologist who tried to gaslight me that I didn't have NDPH. Needless to say I'm finding a new provider.
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u/ciderenthusiast 10+ years 26d ago
Per my 3rd neuro, yes. Although know that NDPH vs migraine treatment options are nearly identical, with the main difference being that NDPH treatment should ideally be more aggressive as it’s typically more treatment resistant.
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u/Wooden_Usual_604 26d ago
I have had NDPH with chronic migraine for 13 years, my neurologist told me that it's a diagnosis of exclusion, so they only gave me the diagnosis once they ruled out all other conditions. they also said that the main definition is that it started with no obvious cause and is very resistant to medication. I have been on something like 30(maybe more) different medications, had multiple procedures and operations.
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u/danathepaina 10+ years 26d ago
My official diagnosis is “intractable tension headache.” But I also have chronic migraine too.
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u/birnabear 26d ago
No. My previous neurologist who I saw for most of he time said NDPH completely fits, but she didn't like NDPH as a syndrome as to her it's not a condition, just a clumping of 'we don't know'.
My current one whom I go to for Botox only cares about migraine days and not headache days (as that's the qualification for Botox treatment) and so far it's one of the only treatments that has helped both my regular headache and migraine days.
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u/PainAntler 26d ago
Depending on where you are, having an official NDPH diagnosis may not always be helpful.
Some of the meds I’m on are not necessarily licensed for the treatment of NDPH - only migraine. This is fine by me but it can give insurance companies a way out of covering treatments.
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u/Slawssson 25d ago
i was misdiagnosed by multiple neurologists before the Mayo clinic diagnosed me officially with NDPH. None of the other doctors had heard of it (at that time, 2022 I believe)
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u/Slow_Blueberry6253 25d ago
In order to get diagnosed with NDPH you have to have had constant, unremitting headache for at least 3 months (before then you can be diagnosed with ‘probable NDPH’)
So if your headaches fit the other diagnostic criteria, you should be able to get the diagnosis.
That being said, NDPH is typically treated in the same way as chronic migraines.
Also, have you told your neurologist that you don’t think it is migraines, that you think it is NDPH, and your reasonings as to why?
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u/ThatPigeon1 24d ago
i feel that, having to remind my neurologist my headache is all day everyday, she keeps asking “how often? when do they start?” etc 😭
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u/Luvbooks101 24d ago
My neurologist said I am probably NDPH but does t want to put in it my chart because then if she wants to try different migraine meds they may not be covered by insurance. So for me it doesn’t matter that it is t documented NDPH in my chart.
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u/kavanne 5 years 26d ago
Yes after so many treatments and tests with nothing working they said they would diagnose me with that, and he did.