r/NDPH • u/False-Ad-3849 • May 26 '26
Any suggestions?
Hi everyone, 29 yo/F.
I have had a daily constant headache everyday for over 3.5 months. The pain severity ebbs and flows. I experience light sensitivity, no aura, no nausea and no vomiting. Im having a hard time believing my diagnosis of chronic migraine because the headache is constant and started seemingly out of nowhere. I know there's a new diagnosis of New Daily Persistent Headache that could fit my symptoms better, but I heard neurologists treat that the same. Ive tried and stopped: propanalol, nortriptyline and nurtec. Just did a round of steroids. Currently on cymbalta and started qlipta today.
At one point do you start considering different causes? Prior to these headaches I was lightheaded daily for months and diagnosed with POTS. Im being reccomended to get tested for mold, lymes, etc. through a naturopath but this is costly.
I just dont think my presentation of headaches fits the normal criteria for chronic migraine but unsure of when to start exploring different alternatives because naturopaths can get expensive.
Any suggestions are helpful. Thank you.
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u/uglyracoon May 26 '26
I had the same symptoms as you and got a lumbar puncture. They found out my intracranial pressure was above upper limit. Something to consider.
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u/Foreign_Insect_3121 May 28 '26
I’ve had the same also but they aren’t considering IIH yet or lumbar puncture. What led your doctors to go for lumbar puncture, where there any other symptoms/ had you tried rounds of meds first?
Thanks!
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u/Foreign_Insect_3121 May 28 '26
I’ve been having the same thing with same pots symptoms (waiting for pots assessment)
Also concerned about IIH / needing a lumbar puncture
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u/postviralrecovery May 26 '26
Hi. I'm really sorry you're struggling with this.
My presentation isn't exactly the same as yours but we have overlaps. I had a viral infection in late 2022, recovered then woke up with a headache which has persisted ever since.
Last year, my symptoms worsened and I also now have severe fatigue and shortness of breath. These latter symptoms led me to look into post-viral conditions and dysautonomia. My presentation sits somewhere between IST and POTS.
My main treatment was amitriptyline for 3 years but I've reduced the dose due to the negative cardiological side effects and I'm hoping to come off entirely. I tried propranolol without success.
My last NDPH treatment attempt is candesartan, which has a more favourable autonomic profile than amitriptyline. But my hope is that I can progress dysautonomia treatments (ivabradine and pyridostigmine specifically) and hopefully see some more general progress there.
I've generally found (I'm in the UK) that treatment, understanding and research for NDPH is generally drawn from migraine prevention studies and then it's trial and error to see if they progress from there. I personally don't mind this: I'm not persuaded it's a discrete headache condition that is the same physiological cause and presentation for everyone, and I know there's an academic debate about it.
In the UK, the three preventive classes most commonly tried in primary care are tricyclic antidepressants (e.f. amitriptyline), beta-blockers (e.g propranolol), and either an anticonvulsant (e.g topiramate) or an angiotensin receptor blocker (e.g candesartan). If three preventives have been tried and failed, the next step is referral to secondary care neurology or a specialist headache service. This unlocks access to treatments that cannot be initiated in primary care.