AIBU to stop meds and seek second opinion (child headache)

[user76438]

Apologies - shameless AIBU post for traffic. And sorry, long.

NC as outing. DS12 has had a constant headache for nearly three weeks. Has had a few previous episodes of headache over last three or so years, but none so bad or long-lasting. Had some vertigo with it for the first week (now stopped) and is finding it harder than normal to focus eyes (no constant blurred vision). Headache is mainly at front, with pain radiating in a band around head. Pain varies from mild to moderate, but never goes away completely. Present on waking and all day (waking occasionally at night but no worse at night). Has missed many days of school. Also feeling permanently cold and tired, with severe breathlessness once after exercise.

On one hand, NHS have been brilliant. Have had two urgent treatment visits, two GP appts, a course of ABs for possible sinusitis, an urgent paeds referral with two consultations, an ECG and two blood tests, all within three weeks. Have also seen an optician and a dentist.

All results basically normal. Blood test showed low ferritin and neutrophils, but not crazily low - all else fine. Optician fine (no swelling). ECG fine. Repeated neuro checks fine (strength, balance, eye coordination etc etc). No nausea or vomiting.

All doctors have reassured us that there's no indication of a sinister cause (tumour etc). But I'm really unsure about the outcome. Consultant paediatrician has diagnosed migraine probably due to incipient puberty and stress, and prescribed Pizotifen for a few weeks/months to see if it helps. We gave DS one tablet tonight, but I've now done some more thinking and reading, and I really don't know whether to continue. I don't think the symptoms are like migraine (more like chronic tension headache). The coldness and fatigue seems to have been ignored. Although I realise we wouldn't necessarily know, I really don't think DS is suffering from stress. And it doesn't even seem like Pizotifen is the normal first line for chronic migraine any more. She also told us there were no side effects, which doesn't seem true! This seems like a big step to take after three weeks of unexplained headache with other symptoms which don't really fit migraine that well, as far as I can see. I'd really like an MRI, but I appreciate that the NHS doesn't want to fund this just to reassure me.

Questions - firstly, AIBU? Should I listen to the consultant and try what's been recommended in spite of my doubts? Second, if I go withy gut, am I OK to stop giving the Pizotifen? The leaflet says to never withdraw it suddenly - but is this OK after just one dose? And if I do, what next? I like my GP very much, but presumably her only step is to refer us to paeds - which she's already done.

I'm seriously considering a private paeds consultant. I just don't know what to do.

Is your son waking with a headache that becomes more painful if he bends down or is relieved after vomiting? Is his balance OK?
My son had numerous GP visits and attended A & E and was told he had migraine-he had a brain tumour and these (plus blurred vision) were the only signs. I would ask for a CT scan just to be on the safe side.

Btw, have a look at the head smart website as that will list through red flags for tumours - hopefully there won't be others bar the headaches, but it's good to check.

If it were me, I would discontinue the medication for now. I wouldn't want to give medication if I had any doubts about the diagnosis.

You can always go back to it after you've seen the consultant.

When I had some medical issues a couple of years ago, I paid for private MRIs. Expensive, but worth it for reassurance. I didn't have the condition I worried I might have, but it was helpful to know this for certain, rather than worrying I'd been misdiagnosed.

Drs and health professionals are doing their best, but there are many documented instances of wrong diagnoses, so I think you're right to get second opinions and leave no stone unturned.

The doctors mentioned stress and you have said he throws himself in to activities and school. I wonder it's got too much for him and this is his bodies way of telling him. There could be a psychological element which needs exploring

Have they considered New Daily Chronic Headache (NDCH, sometimes also called New Daily Persistent Headache)?

media.gosh.nhs.uk/documents/New_daily_persistent_headache_F1884_A4_BW_FINAL_Jun16.pdf

my.clevelandclinic.org/health/diseases/24098-new-daily-persistent-headache-ndph

Sorry to hear this OP, it must be horrible for him having a headache for so long. No insight at all as to the cause but just to give him some relief in the meantime while you wait for the referral, have you tried cold packs? I had a headache constantly for about 2-3 weeks last month and bought myself a cold eye mask- it has holes so that you can still see with it on. It looks absolutely bonkers but it was the only thing that helped for the pain.

Mine actually turned out to be because of tight muscles in my neck- I went for a massage, she worked on a huge knot for a while and the headache had gone by the end of the session and hasn't returned. It was like a band around my head and radiating across my scalp. So maybe it could be worth trying giving him a gentle massage to see if it eases any muscle tension- it might be totally useless advice but won't do any harm.

There is a very helpful free app called "Manage my pain". It is a pain diary that creates extremely helpful statistics. You can see how the pain develops over time, figure out if certain meds help, possible triggers etc. Should your child be seen by a specialist, they will want to see their pain diary, so I would start with the app or a diary as soon as possible.

Something you could consider trying are high B12 and B6 dosis. You can find quite a lot of information on that on the internew.

Thanks everyone again. @Somuchgoo I'm so sorry that your DS had a serious diagnosis, and I do hope he's OK now.

Sorry for the lack of reply - we've been in A&E (again). This time because DS became very breathless, dizzy and unbalanced after walking a few metres outside.

We saw a consultant who I felt really listened and took me seriously. He talked me through all the blood results, which were normal (NB ferritin and neutrophils were higher than before - 30 and 2.52 - so lowish but normal). He advised not taking the Pizotifen - he diplomatically said that he thought the previous doctor was wrong, and that it wasn't a migraine presentation.

He's ordered an MRI, but said he would be very surprised if it showed anything - he just wanted it as the final check (and probably to reassure me, I suspect).

He said that what we're looking at is probably some type of fatigue syndrome or chronic daily headache - possibly post-viral, also maybe age related. He warned that it could be a long road, and gave advice about taking it easy, rest, diet, very gentle exercise etc. Assuming the MRI is OK, they want to follow up in a couple of months.

I'm both reassured, and dreading the thought of trying to get DS back into some sort of normal routine. I've never had to deal with something like this - I'm lucky enough to have always had kids who bounded happily into school in the mormings, until now.

Pizotifen is a med fir chronuc daily headache so... but prpanolol may suit
Main thing keep a headache diary here on in

Please stop suggesting meds unless you are actually medically qualified and have seen this person’s scans. Amateur diagnosis and prescription is very dangerous - especially when kids are involved. They have been to A&E, met with a consultant and most importantly they feel heard this time. I think that is best way forward.

Decade of personal experience... there are various meds to try , you can be lucky and first try works , to ease symptoms, or it does not . Dd has been thru about 8? As a teenager propanolol helped , but might not for anothef child. She actually hone to pizotifen now. It is helping.

www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/new-daily-persistent-headache/

@user76438 - how is your DS now? Have they tested for glandular fever?

Thanks so much for checking up @spiderlight . So, the situation is still ongoing - DS is a lot better than he was 2 months ago, but the headache's still there all the time, some days worse than others, and he's still fatigued, but he's managing at least some semblance of normal life now (in school most days, though still no sport or clubs, as he's too wiped out).

The MRI was finally done but it took them a month to give us the result - very frustrating, as nobody wanted to do anything else until the result was back. Anyway, it was normal, which was expected but obviously still a huge relief.

We paid to see the National Migraine Centre privately, who were excellent. Their most likely diagnosis is that DS has some sort of post-viral fatigue (this was already the GP's view), which has triggered an underlying tendency to headache. They are recommending that we treat the headache like they would any chronic migraine or headache (with propanolol or topiramate in the first instance), while essentially waiting for the fatigue to get better (which it seems to be doing, very, very slowly) - then we might eventually he able to withdraw the headache meds once he's (hopefully) been back to normal for a few months.

Trouble is, they can't actually prescribe, so I need to try to persuade the GP (who's great) to follow their recommendation. We're supposed to be going back to the NHS consultant at some point, but who knows when that appointment will come through. The GP is also doing a coeliac screen. The migraine people also suggested extra Vitamin D and magnesium. We only had the appt yesterday, so need to wait for their report and then start trying all of this.

AFAIK the blood tests haven't included a glandular fever check. Would it even show GF now, if that's what he had before Christmas? And do you know if the treatment would be any different than for a post-viral /long Covid diagnosis? If it would, then I'll ask the GP about a test.

So, still very much living with this, but feeling a bit more positive than I was. If I'm honest, I was a tiny bit sceptical about long Covid and general fatigue conditions before this. How wrong I was.