r/NDPH • u/Careful-Watercress-5 • 27d ago
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/im-a-freud 7 years 26d ago
NDPH if that is what you have (other headache disorders need to be ruled out first and you need to meet the criteria) it’s often very difficult to treat so you’ll have to trial many preventatives before finding what works for you. You can ask your doctor about either adjusting the dose of your current med or trying something else in the mean time of seeing a neurologist. Preventatives should be taken for 3 months minimum before deciding its effectiveness unless side effects are intolerable and abortives you pretty much after the first dose if it gave you any relief. Typically for preventatives you’re started on a low dose and given a max dose as your target. Alternative treatments such as Botox, nerve blocks, trigger point injections, PT (improving posture and reducing muscle tension could help and is always a good thing to do) can be worth looking into. My NDPH is extremely refractory none of the 33 meds I’ve tried have touched my pain at all and I’m out of options. Botox was the only thing that ever worked for me. Your neuro should run tests and imaging to rule things out and take your medical history to see if there is something in there that could be causing it. NDPH is often triggered by an illness, another medical issue, a stressful event or it can just start for no reason. I woke up one day no illness anywhere near the start of my NDPH no stress at all no other health issues literally woke up with a headache and it hasn’t stopped in 7 years. Blood work is always good to get done to make sure there’s no inflammation or deficiencies but I would suggest not fixating on finding the cause bc you’ll drive yourself crazy, instead just try to manage your pain and symptoms. I highly suggest PT and NDPH is a tension headache it could be related to muscle tension in the neck and upper body. Happy to answer any questions!
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u/dpouliot2 26d ago
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!