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Chronic headache and don't know what to do - help!

3 replies

user76438 · 02/02/2023 23:12

NC as outing. DS12 has had a constant headache for nearly three weeks. Has had 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 a fortnight. 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.

OP posts:
onlytherain · 05/02/2023 15:52

You might want to ask mumsnet to move your original thread from AIBU over here.

I am sorry you are so worried, but nobody here is a doctor who has seen your child. I would go back to the prescribing doctor and talk about your concerns.

All medication have potential side effects. That is normal. It doesn't mean that your child will have all (or any) side effects and if they do suffer some side effects, taking the meds might still be worth it.

As far as I know (I am not a doctor), meds often prescribed for migraines, headaches or NDCH are maximum dosis of paracetamol and ibuprofen, triptans, Propranolol (a beta blocker)and anti-epilepsy medication. Milder meds that seem to be tried often are B6, B12 and melatonine. Often it is very difficult to find something that works. So you could ask your doctor about these.

I know children who have been having a chronic (24/7) headache for months or even years. Their brains seem to be hypersensitive and misinterpret signals as pain signals when in fact they aren't. In order to be diagnosed with chronic pain, children need to be in pain for over three months. A surprisingly large number of children suffer from chronic pain (up to 4 out of 10). I am not saying this not to scare you or to minimise your concerns, just to give you some factual information.

I hope you find a solution soon.

Babyhasalottosay · 10/05/2024 21:23

@user76438 did you ever find the cause of your ds headache? Or anything that helped the pain?

Sounds identical to my DD and we are desperate to help her it's so hard seeing them in so much pain

sadscotmama · 22/12/2024 01:21

Hi. Did you find the cause. Sounds similar to my DD. I would really appreciate your input.

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