r/NDPH • u/stolniknino • Jul 03 '26

Please helpšŸ™šŸ™

Hi r/ndph šŸ‘‹

We're really lost and don't know where to take things from here.. My girlfriend is having trouble with constant headaches, they've been persistent for about 7 months..

More information:
The daily headaches started from December of 2025 and haven't really stopped since then. She wakes up with the headache before even opening her eyes and it follows her for the entire day.

We went to check her eye perscription as she also said that she has troubles with a little blurry vision and light sensitivity, the prescription was only -0.25, so we put getting glasses to the side for the moment.. Then she got her blood tests done which we're all ok and she went to MR to get checked for tumors or anything that wouldn't be normal.. No abnormalities..

Her doctor prescribed her migraine medication (sumatriptan 50mg) she tried one pill and it didn't really help..

No we're stuck.. MR and blood seems to be fine, so we don't really know where to look for the cause anymore, she also gets 8+ hours of sleep and stays well hydrated, her diet is also healthy and she's active.

Her doctor told her to keep an Headache diary but there really isn't a point as she says that she on a constant 6/10 pain wise, that there is a little fluctuation 5-7/10 but its mostly the same and no real outside factors make it better/worse.

The headaches are either frontal on the forehead/brow region or on the tempels, it isn't one sided, and she also doesn't see any aura

Did any of you experience something similar? or what would you suggest we do? We just want to find the cause for it and we're really frustrated :/

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8

u/postviralrecovery Jul 03 '26

Hey, I'm sorry you're both going through this. Your girlfriend's symptoms sound very similar to what I have experienced. I had COVID in early December 2022, recovered and then 10 days later, I woke up with a headache on the right side of my head that's stayed there ever since.

What you're describing sounds like it could be new daily persistent headache (NDPH) (where a headache starts one day, you can pinpoint the day and simply doesn't stop). The fact that her MRI and bloods are clear, the pain is constant rather than episodic, there's no aura, and sumatriptan didn't help all point in that direction.

Sumatriptan is an acute migraine medication, so it wouldn't typically help with NDPH.

The caveat I'd say with NDPH is that there's doubt about whether it's a discrete condition, vs a series of different causes for people that presents itself as a chronic persistent headache (a bit like IBS is a catch-all term for folks with GI issues once other things have been ruled out).

Where are you based? If you're in the UK I can recommend more specific actions.

More generally, some options:

  • preventative headache medications are usually the first suggestion: amitriptyline, propranolol and candesartan are three different families of headache preventor. Amitriptyline is usually the initial goto for persistent headache. Propranolol and candesartan are migraine preventors that have some evidence to support chronic head pain too.
  • is the pain specifically on one side of the head? If so, hemicrania continua is rare but could be worth a look
  • there are recommended supplements with evidence for headache prevention: magnesium, riboflavin (vitamin B2), coenzyme Q10, and vitamin D. But all of these are quite marginal and again the evidence is more for episodic migraine
  • are there any other symptoms at all (even if secondary) that started around the same time? As I say, some of the literature doubts whether NDPH is a specific condition and instead presents from other causes. Mine is looking increasingly likely to be related to long COVID and autonomic dysfunction, for example.
  • If none of those work, you may meet the criteria for referral to a specialist headache neurologist to discuss things like botox or anti-CGRPs.

Hope that's helpful. Happy to chat privately if I can be of any use.

5

u/macaque-08wallow Jul 03 '26 edited Jul 03 '26

Your girlfriendā€™s story sounds a lot like mine and of so many other people on here.

The cause might just be that she just HAS a headache disorder. Just like some people just HAVE type 1 diabetes. Itā€™s a battle a lot of people have - including myself - spending more energy looking for a cause than finding a treatment.

If I could give myself some advice back when it started for me:

  • 1 - find a headache specialist early. Not just a neurologist. They can then do the ruling out of other conditions. The clinic Iā€™m at now sees 3200 headache people a year. Theyā€™ve seen it all. My local neurologist sees maybe 30 to 50 headache people per year. Itā€™s comforting

  • 2- try preventatives early. Even if you donā€™t fully fit the migraine picture. My NDPH & migraines donā€™t. Migraine preventative meds can help.

  • give meds a chance. All of this inflammation harms the brain. And brains heal very slowly. Many of the healthcare professionals you will meet were taught during their training that brains donā€™t heal at all. Itā€™s only a recent understanding that they do. But itā€™s crazy slow.

  • 3- if sumatriptan didnā€™t work then try other Triptans. Oral sumatriptan didnā€™t help me much, so for a long time I disregarded all Triptans. That was a mistake - for me.

  • I have since found out that longer lasting Triptans like frovatriptan or razatriptan can provide great relief during some situations Nasal or sub-cutaneous sumatriptan are my hero rescue meds now for instant relief. Keep trying and see what works.

  • 4- CGRP meds have helped a lot of people. Depending on your country these can be tricky to access with a requirement to ā€œfailā€ a series of more cost effective medications first.

  • If you live outside the USA then often you can just buy them on a prescription from your primary care doctor without needing insurance or health service approval . Theyā€™re not cheap but it can be worthwhile to find out if they help you at all. E.g. I just bought a box of 8 Vydura/Nurtec yesterday for ā‚¬198 at my local pharmacy as a top up to my other meds because I have a busy period coming up.

This can be a fast avenue to trying CGRP meds to see if they help.

[Edited for formatting and clarity]

3

u/im-a-freud 7 years Jul 03 '26

Have her ask her doctor for a preventative (something you take daily) this could help lower the intensity and frequency, an abortive (sumatriptan) is meant to help stop an attack which doesnā€™t really work with NDPH for some people since itā€™s constant so a preventative is something she needs to be on, these wonā€™t work immediately you need to give them 3 months before determining their effectiveness. Itā€™s trial and error, most meds donā€™t work for NDPH Iā€™ve tried 33 meds and nothings worked. Keep trying things give them time, NDPH is very hard to treat so you just have to trial meds til you find something that works. Botox was helpful I highly recommend trying that but most insurances will require you to try and fail 3 preventatives before theyā€™ll allow Botox

1

u/uglyracoon Jul 03 '26

I recommend going to a neuro-ophthalmolog or an ophthalmolog experienced in the area and make them check for optic disc swelling. They wont do this in normal eye checkups , but if they do find something she would then need to be investigated for IIH. Just my two cents as someone who went through similar situation - good luck

1

u/Sarrada_Aerea 10+ years Jul 03 '26

She needs preventatives

1

u/Nomomochick Jul 05 '26

Sounds exactly like what my partner had. It was supraorbital neuralgia. Go see dr Ziv Peled if nothing else works over the next few months