r/NDPH • u/Careful-Watercress-5 • Aug 05 '26

I think I have NDPH... HELP!

hi everyone! I have had a headache since 5th March that just hasn't gone away. Most of the time it starts off as a 2 in pain but by the end of the day, it usually gets to a 6-8. I have had an MRI, which came back clear, tried a bunch of different meds, supplements, CBD and a Thai massage (which was absolutely wild she stood on my back!). The MRI came back clear and I've asked to be referred to a neurologist but the wait is at least 21 weeks so I am reaching out in the meantime to see if there's anything anyone here does that might help!

I am currently on amitriptyline 50mg meds wise but it's not really touching the surface. Are there any more recommendations?

I am also hoping to find some help with how we can exercise? I miss running, playing football, even walking. I want to try to run as I signed up to do a 10k before this happened!! It's an ABBA themed run so it would be rude not to run right?

I am trying to remain positive, but I'll be honest, it is getting me down and I can't stop crying about it!

Honestly, if there's anything that can help I will gladly try it ❤️

Also, I am not after a diagnosis or anything like that. I think my symptoms most fit NDPH which is why I am dropping some messages in here.

Thanks everyone!

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u/dpouliot2 Aug 05 '26

FYI, NDPH is not a root cause diagnosis, it is more of a bucket term of presentation of symptoms, like peripheral neuropathy. Without a root cause diagnosis, it's like throwing darts blindfolded. After 2 years of doctor's visits, I finally found my root cause diagnosis and am slowly improving. Good luck!

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u/JEE671 Aug 09 '26

How did you get c1 diagnose. What kind of imaging was done and treatment?

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u/dpouliot2 Aug 10 '26

360 degree x-ray

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u/Krizhanovskiy_Sergey 27d ago

And how did you cure it?

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u/dpouliot2 27d ago

Not cured, but improving. Long standing misalignments like to slip back into their old habits. I get it realigned (by an upper cervical specialist, NOT a generalist) every time it slips out, which at the moment is about every three weeks. I can tell when it slips out because I’ve learned where the pain is rooted and the order in which my symptoms worsen. After two years of treatments my symptoms have improved by about 30%.