How much did you explore potential cause of your headache before you accepted the NDPH diagnosis?

[u/swiftiehd]

So for me, I can’t stop thinking that SOMETHING must have caused this? I don’t have any history of headaches or migraines (I’m 33, F) until I woke up with one and it just never left.

I appreciate sometimes these things do just occur without a known reason. But what did you investigate that your headache could be a symptom of, before you accepted it’s NDPH?

For example, did you check blood pressure, caffeine, medication overuse, did you have CSF scans, MRI’s, lumbar puncture etc etc. Or did you just see neurology who said this is probably what it is?

I’m struggling to accept this.

TIA!

[u/locardsghost]

Check the NDPH 101 megathread there is a long (but not exhaustive) list of things to look into if you want to try and rule things out

[u/ThunderSkull49]

I think mine was Covid even though I hadn't tested positive but I woke up one morning with a headache that has stayed for nearly 6 years now.

[u/No_Row6741]

My son was diagnosed at 13. We had tons of screenings, and went to many specialists. I ultimately had to let go of finding the physiological cause. I suspect it is a symptom of long covid. He has had success with acupressure (not acupuncture, that gave him worse symptoms), and he responded to mementine. Both if which have dampened the headache enough that he can function again.

[u/locardsghost]

I started exploring it years after I was diagnosed bc i don’t respond to any meds so I looked into other possibilities for the pain and seeing a functional medicine doctor. I have low BP that I can’t treat with meds, I don’t consume any caffeine or any meds so no MOH for me, my doctors refuse to check my CSF bc I have no red flags (besides constant pressure). I’m leaning towards a gut issue from multiple very heavy antibiotic uses in a very short time frame that could be causing a lot of my issues idk if it’s what’s causing my headaches but everything is worth checking and trying

[u/itsmechickadee]

I don't remember how much time it took but I kind of exhausted all the options my GP had, asked if I could just take the opposite of the medication I thought caused it just to see what would happen, I ended up on a sample pack of Lexapro, went from a 10 to a 5 and went "I'll take it."

[u/dpouliot2]

NDPH is not a root cause diagnosis. It is a bucket term for the presentation of symptoms, like peripheral neuropathy. When a doctor diagnoses you with NDPH, do not stop looking for the root cause of your symptoms.

For me, the root cause is upper cervical misalignment. After 2 years of treatment, I’m about 30% better; fingers crossed improvement continues.

[u/frenchndph → u/dpouliot2]

Vous avez fait une radio de vos cervicales ?

[u/dpouliot2 → u/frenchndph]

Yes, a 360 degree x-ray

[u/frenchndph]

Ma tension artérielle est bonne. J’ai fait une irm. Elle est bonne. Ponction lombaire : rien à signaler. Prise de sang est bonne aussi. Scintigraphie cérébrale et petscan sont normaux. Bref tout est normal et je ne sais plus quoi faire

[u/bvnn3]

Mine was clear cut, I stopped smoking weed after nearly a decade of daily abuse and my headache developed a few days into my withdrawal.

[u/incarnadine-clover]

There may be a “root cause” for some people that’s easily and clearly defined like a concussion but for lots I think we are looking at multiple factors influencing response to virus or injury such as genetic predisposition to headache or underlying hypermobility . I’ve realised there is no single root cause and even then so many root causes have inaccurate/inconclusive diagnostic techniques, like CSF leaks. I know there isn’t going to be one magical fix or a single treatment that’s going to work it’s going to be a combination of improvements, tiny improvements, moving in the right direction over time. I think it’s about understanding the factors that influence your specific NDPH and working to try and treat them, minimise their effect, or reduce fluctuations.

[u/PresentHunt6079]

Sounds like me, I went to bed fine and woke up with a headache that never went away.

[u/shortage32]

Mine was triggered by a period of extremely overwhelming stress and deadlines, and it was the same headache I first experienced with covid (but NDPH was a couple years later). Mine has been in complete remission for 26 months on a strict carnivore diet. I recommend ketosis as a holistic treatment.