46th day of continuous migraine?

[Xiaoxiong]

Posting here in case anyone has ever heard of something like this, because even the paediatric consultant neurologists told us they have not seen it before.

DS14, never had a headache or migraine before and in good health (though with some mild hayfever and asthma in the past, mostly grown out of this). No one in the immediate family gets migraines either. No issues last term or over the Christmas holidays, went back to school ok for 4 days and then woke up at 3am on the 9th of January with what he described as the worst headache of his life and dry heaving. No auras or visual disturbances.

This has now continued for 46 nights, at 3am every night like an alarm clock and it just hasn't stopped. He has had only three nights "off", which were nights where he didn't sleep at all and kept himself awake as he was desperate to avoid the 3am headache. The last three nights he is now vomiting his dinner up as well. Increasingly he has pain while falling asleep. He has a headache and nausea all day plus discomfort reading or with light, but the big spike is every night around 3am.

He has had 2 MRIs which found a pineal gland cyst and a Rathke's cleft cyst near his pituitary, but the consultants seem to have concluded that these are incidental and not causing the issues. He's seen about 5 consultant paediatricians, 2 consultant neurologists (including privately), and they are all baffled. They keep asking about stress and lifestyle but he really isn't stressed generally (though he certainly is now, along with the rest of us) and has a generally healthy lifestyle with exercise, eats well, etc. Also this came on like a bolt from the blue, rather than ramping up slowly.

The only test he's had that's shown anything significant is a positive test for Epstein Barr virus (both the antibodies showing an old infection, plus the ones for an active infection so I guess that means a secondary/re-infection). That was many weeks ago now though. My hope was that this is all a weird manifestation of the virus and it will improve over time, but as the weeks wear on and he is getting slowly worse not better, that hope is dwindling.

He's had batteries of blood tests, all within normal ranges, neurological exams, ophthalmologist exam.

No painkillers or preventers have had any effect - ibuprofen, paracetamol, both together, ibuprofen lysine, sumatriptan, and we have done a week and a half on propranolol but that hasn't had any effect yet either.

He hasn't been able to go to school since before Christmas as every time he tries he has to run out of class to be sick or dry heave, or he is just in a daze. We are absolutely at our wits end - our next appointment with the consultant is on Friday but I fear their working diagnosis of "atypical acute chronic headache/migraine" is so vague - all the treatments take weeks and weeks to determine if there is any effect before we can try the next one. We have full private health insurance but as I am now discovering, it doesn't always help when the consultants both NHS and private have no idea what to do except try migraine prevention (while admitting they don't know if it's a migraine at all, or if it will work). I've asked for referrals to migraine clinics but the paediatric consultants want us to try front-line migraine prevention first.

Has anyone ever heard of something like this before? Any ideas gratefully received.

@Thingything you raise an interesting point - so many of these doctors keep telling me that migraines are much more common in women, usually connected to their periods, and boys just don't really get migraines.

However, the number of male friends and colleagues who have come out of the woodwork and told us that they get migraines - as well as other mums of sons saying their sons get migraines - it doesn't seem that uncommon at all!!

I've also had so many questions for them about pain relief - can we try other triptans, surely there is something else we can try - and they just dismiss it completely so he has no pain relief at all at present. As well as being told not to use paracetamol or ibuprofen in case of overuse headaches. Makes me wonder how they justify it to themselves - like, he'll "take it like a man, grin and bear it" etc.

Good luck hope u get answers soon

@Xiaoxiong sadly my dd had exactly the same response - no pain killers that were effective, no treatment options - just "hopefully they will stop soon".... so sadly I don't think it is a boy thing, just a "teenager" thing....
Cold packs provide some relief for a while. Sleep, hydration, small but more frequent food helps a bit. Haven't found any anti-nausea meds that they will prescribe under 18 that works!

@handmademitlove the only one that seems like it might be helping at the moment is buccastem (prochlorperazine maleate buccal tablets) that tucks between the gum and upper lip and dissolves slowly. These seem to take the vomiting down to dry heaves, which are not pleasant either but at least he's not chucking up his dinner. We have tried a few others but either he voms them up, or they're really constipating, or they just don't work at all.

It was your DD's experience with her neck that made me look for a physio (also we did some experiments for hypermobility, and can conclude this is definitely not an issue for DS1!) How's your DD doing now?

@Xiaoxiong ongoing sadly. Her Neurologist thinks next steps are gepants or botox, given she has not responded to any of the acute or preventative meds they have tried, but for this she needs to be referred back to NHS. Also tricky as not approved for under 18s. He is consulting with colleagues to work out the best way forward. Meanwhile she is still having migraines more days that not...

It is horrible to watch your child in severe pain and not be able to help. and be dismissed by medics most of the time with a shrug...

I'd suggest requesting a 'CSF flow MRI'.

@handmademitlove I'm so sorry have you tried the National Migraine Centre? I've just filled out all their pre-appointment questionnaires. You can self-refer, and either go on their wait list or pay £299 (which subsidises the wait-list). They can prescribe all the new anti-CGRP drugs and gepants, botox, etc.

I'm really hoping they can help us, even if just to say that they don't think it's migraine.

Hi @Xiaoxiong my son (12) has recently (since the first week of secondary school) been having headaches / migraines, when previously he had barely any! He is coeliac though - I wondered if your son had been tested to rule this out? My paediatrician said that kids who get headaches more than likely have coeliac disease, and those with coeliac disease more than likely have headaches. Also, I heard that boys at this age do tend to get more headaches due to the increasing hormones.

Another option I would try is seeing a kinesiologist - honestly, the kinesiologist I saw saved my other DC (and actually resulted in her getting a diagnosis), as I was fobbed off for years (!) by multiple GPs and paediatricians. Have a look in your area for an approved kinesiologist and see what they recommend.

@Therightflipflop thanks! That was the thinking behind the physiotherapist that we're seeing tomorrow. I've not heard of a kinesiologist before - what do they do that's different from a physio? I will definitely look into it.

Also you're about the 10th person to mention coeliac - the NHS refuses to test him as he has no obvious GI symptoms that can't be chalked up to other things eg. the anti-nausea medications we keep trying. I might have to go private for that as well like I did for the Epstein Barr test - grr.

He was up from 1-5am last night with the pain (described as knives in his head) and dry heaving. It's night #56.

That is annoying about them not checking to see if he's coeliac - my son had ZERO GI symptoms, and I mean, NOT ONE! It was the kinesiologist who told me my DD had coeliac, which prompted me to insist the GP arrange a blood test, which the GP reluctantly did. As a result, we found that DD was coeliac (levels through the roof), so DS was tested as part of the screening to check who else in the family was not diagnosed. Lo and behold, he was coeliac (blood level was 45, but he had an OGD which revealed stomach lining damage, so he was literally waiting for the coeliac to "activate").

This is a link to the kinesiologist that I saw - absolutely fab team

Taunton Kinesiology - Natural health in Taunton, Somerset

has he tried keeping a diary of everything he is eating, drinking and environmental factors?

has he started consuming something new every day for the last month and a half?

have you used new washing powder, cleaning products, toothpaste, deodorant, air fresheners.

have you bought a new brand of food or drink in the last month and a half that he is consuming every day?

hope you can get to the bottom of it soon.

you can also get the prochlorazapine in tablet form prescribed from the GP instead of the buccal tablets from the chemist.

Hmm... Did you get the promethazine and have you experimented? It's an early hours headache, and being 14, he's presumably going to bed around 9 or 10pm? So he's waking within 3-5 hours with the pain?

I wonder if it would change if he stayed up really late, say midnight? Would he still get a headache at the normal time, or later, or not at all? Or if he went to bed at 10pm but also took promethazine or melatonin (if prescribed) to get a really good night's sleep... What would happen?

I think if you can establish a pattern, it might be easier to identify the cause.

Now you might think this is a stupid suggestion but have you put all of this into ChatGPT?
you could actually put most of this thread directly in. It can be helpful in part just because it’s methodical and has access to more information than most doctors and won’t accuse you of being the problem. So might come up with some outliers.

Not at all a stupid idea @Wallywobbles - I've been using Perplexity all the way through but I have found that the answer is highly dependent on what information you put in to start with.

Great idea to put this thread in though - I've just done it and it has suggested:

Based on what’s described, the pattern is most suggestive of a primary headache syndrome such as hypnic headache or another sleep‑related/clock‑driven headache (e.g. a cluster‑type variant), but with several strong red flags that mean secondary causes (pituitary/pineal/raised pressure/endocrine) still need to be actively excluded rather than accepting “atypical migraine.”

Why hypnic or other sleep‑related headache fits (partially)

• Headache reliably wakes him from sleep at around 3am “like an alarm clock,” with relative improvement when he simply doesn’t sleep that night, which is very characteristic of hypnic or sleep‑stage–linked headaches.
• He has much milder symptoms during the day with a marked nocturnal spike, again typical of sleep‑related headache disorders rather than classic daytime migraine.
• Hypnic headache is rare in children and typically caffeine-responsive, which is why his paediatricians are sceptical, but rarity does not exclude it, and caffeine non‑response only makes the picture “atypical,” not impossible.

Why migraine alone feels incomplete

• No personal or strong family migraine history and an abrupt “bolt from the blue” onset after a viral illness make a straightforward primary migraine diagnosis less satisfying, especially with strict timing at 3am rather than variable migraine triggers.
• Continuous daily headache with severe nocturnal exacerbations, vomiting, photophobia, and functional impairment despite multiple acute and preventive migraine treatments (ibuprofen, paracetamol, sumatriptan, propranolol) argues that this is at least refractory to standard migraine therapy and warrants re‑evaluation.

Important secondary causes that still need ruling out
From the thread, several possibilities are not yet convincingly excluded and could present this way:
Raised intracranial pressure / CSF pressure disorders (including idiopathic intracranial hypertension variants, or low‑pressure/spontaneous CSF leak) – MRIs and eye exams help but do not fully rule out pressure problems without lumbar puncture and, ideally, targeted imaging reviewed by a neuroradiologist.
Pituitary or hypothalamic pathology related to the Rathke’s cleft cyst or nearby structures, which can produce circadian‑linked symptoms, endocrine changes (low‑normal cortisol, altered testosterone), and headaches, especially given the “clock‑like” timing and associated nausea/vomiting.
Post‑infectious or immune‑mediated process following EBV re‑activation (e.g. post‑infectious headache syndrome, rarer EBV‑related CNS inflammation), given that EBV is the only clear abnormal test and the timing fits onset shortly afterwards.
Endocrine causes such as adrenal insufficiency/Addison’s: a low‑end 9am cortisol in the context of weight of symptoms and 3–4am physiology warrants at least a more formal endocrine review and possibly dynamic testing, not a simple “it’s within range so ignore it.”

Cluster‑type and cervicogenic possibilities
A cluster‑type headache variant is worth keeping on the differential, especially with clock‑like attacks and severe pain, though classic cluster is typically strictly unilateral and often associated with eye redness, tearing, nasal congestion or agitation, which aren’t clearly described here.
Cervicogenic headache seems less likely because of the dramatic nocturnal timing, vomiting and the fact it began so abruptly without a clear mechanical trigger, although neck‑driven pain could still be a compounding factor and is reasonable to screen for.

How I’d summarise Xiaoxiong’s son’s likely working diagnosis
If I had to put a name to it based on this thread alone (not as a formal diagnosis, just a working clinical hypothesis), it would be:
“Atypical sleep‑related primary headache (hypnic/cluster‑type spectrum) triggered by or unmasked after EBV infection, with an urgent need to rule out raised intracranial pressure, pituitary–hypothalamic pathology, and endocrine dysfunction (especially adrenal) before settling on a primary diagnosis.”

We see the National Migraine Centre on Monday - I'm going to ask about treatments for sleep-related primary headaches and whether those can go on for 9+ weeks.

He had some physiotherapy on Thursday which was nice and relaxing but hasn't made any difference. The physio didn't think it was cervicogenic but said his posture and core could use some work (no surprise there as he thinks he's Kevin the teenager these days and does this hang-dog slouch when he walks).

Best of luck for the appointment tomorrow. It's horrible he's still suffering and you're not getting any answers. Hope they're able to offer some insights and solutions

Thank you Even if we just are told whether it's migraine or headache, or something else entirely, and whether we should persevere with the propranolol, that would be helpful in itself.

@Kepler22B National Migraine Centre have suggested New Daily Persistent Headache for us too. Doc thinks it was all triggered by the Epstein Barr Virus infection, which has caused chronic post-viral inflammation, which has in turn caused the NDPH. So - we need to address the inflammation, retrain his nervous system and basically calm everything down in his head and body.

Still trying to sort out my head around what to do next. DS very resistant to have to do anything to address his health besides lying in bed all day and playing the guitar!!

My goodness. I had never even heard of NDPH...so glad you have some answers though. Does that explain the vomiting too?

What meds did they suggest?

Yes, apparently the headache and nausea can be linked and both could be explained by the neuroinflammation post-viral infection wreaking havoc on his autonomic nervous system. He's been having a lot of GI symptoms too which I had attributed to the propranolol and anti-nausea tablets but maybe that's all part of it too.

It's a lot of might be, could be, most likely to be...but the one thing the doctor decisively said was that it really doesn't sound at all like migraine.

No more meds suggested, besides finishing off the propranolol trial that we're currently doing and he said it isn't likely to help anyway. Apparently NDPH is the most resistant of all headache types to any medication and it sounds like our main hope is a total reset for him with everything aimed at calming inflammation and resetting his nervous system.

Of course he doesn't want to do anything that means he is weird and different and can't have Five Guys burgers with his friends whenever he wants!!

Amazingly, the nurse at the GP surgery offers health coaching so I'm going to see if she can help him make sense of the kinds of choices he's going to have to make for himself, as I'm not going to be able to make them for him like I could have if he was 4 years old, not 14.

I’m sorry to read this it sounds awful. As a fellow migraine sufferer who also had cysts and started around that age it sounds awful. My only other thought to throw in the mix is has his facial nerve been checked? Having recently had Bells Palsy facial nerve pain can be excruciating, enough to make you vomit and easily confused with migraine. They should be able to see this on the MRI. Good luck.

I was going to suggest cluster headaches.

They are painful in the side of head and predominantly centered behind an eye.

The most interesting thing (and I say that flippantly because they are considered the most painful headache known to man) is that they happen like clockwork.

I have chronic cluster headaches and take verapamil and use sumatriptan injections to abort ones that don’t pass after 15 minutes.

As I said my son has NDPH and time, rest and patience is key. His didn’t respond to any painkillers so there was no point in taking them. Before he could try anti-cgrp injections he had to try 3 other methods for 3 months, which given time to titrate up and then down again took soooooo long,

Plus we had some detours as eye problems were detected that needed surgery but nothing to do with the headache. So that’s a silver lining, we wouldn’t have picked up if he hadn’t had all the extra checks. Oh and the other detour of a high heart rate (always over 10p) which needed a 3 day ecg (heart rate is just high plus white coat syndrome).

It is heartbreaking and has taken years, but life isn’t a race and he will restart education in September (aged 20) and fingers crossed uni after that.