Daily headaches 9 year old girl

[SheffDad]

Hi just posting to see if anyone has been through anything similar and if anyone has tried any therapies with any success.

My daughter started with daily headches last April which seem to be getting worse and are now keeping her off school a few times a month.

She has had an MRI and blood tests all clear apart from a slight chairi malformation which the neurosurgeon didn't seem to think was related.

We have seen numerous gps and paedatric consultants which all seem to say monitor the situation.... none seem willing to try medication which obviously we wouldn't either butits now really starting to affect her life.

So far we have tried
Magnesium
Iron supplements
No chocolate/cheese
Less screen time
Eye tests

We are starting some accupunture this week so fingers crossed that makes a difference.

I have read of a condition called new daily persistent headache which may be related to a bad case of tonsillitis she had last year

Anyway if anyone has been through this let me know!

Thanks

@SheffDad I was given pizotifen but it took a long time to get had to try numerous others I think I had food diaries for a good 3 months and exclusions etc before they would consider it.

Aw ok. Hope you get it sorted soon. X

Are they certain that the chiari malformation is not the cause of the headaches? I’d be going with this myself - will she be monitored?

I thought the same but the neurosurgeon dismmised it. We are getting a second opinion on this on Tuesdsay though because like you say it seems pretty likely. They showed us the scans and said the fluid around her brain was fine but obviously I'm not a neurosurgeon!

We've had a food and activity diary for a while but no clues really yet. Did the pizotifen work for you?

Don’t rule it out, the teachers at my kids school also insisted things were peachy when they were pretty shit

Is she anxious?

No not at all really. In fact she gets really upset when she can't go to school as she feels like she's missing out. She's gone in today so fingers crossed 🤞

Hi - following with interest dc aged 14 started getting daily headaches and two years on we are now seeing neurology.
Tried teeth, tried eyes, tried water.

Sorry to hear its been going on so long for you. Have you tried any medication yet at all? We have been through the whole list of possibilities too

No just OTC. It's only recently I've been like 'we have to sort this' we've tried all the usual hygiene stuff.

Our girl seemed to have been coping with just a base level of headache for sometime but over the past month it's got worse with 3 really bad periods lasting about 4 days. We started gluten free on Friday and we have accupunture thrursday so I'll let you know how they go

Honestly I world try and get pizotifen it’s been a miracle cure for us. You wouldn’t put up with pain for months on end like this so I don’t know why HCPs expect our children to. It might not work for her but definitely worth trying. Especially as all the tests to rule anything else out have been done.

@SheffDad please do. We've been keeping a headache diary and no real pattern.

Just wanted to add in ds suffered hugely at that age and had pizotifen. It did work. He stopped taking it after a few years and he was much better as he got older. He still has headaches and he also has ocular migraines but he copes with them now. At 9 he would be floored by a migraine and he took time to recover. I would say rest, eating well, exercise etc all have helped him.

Hi,

another vote for pizotifen. My ds now 14 has been on it for a fair few years and it is the only way to keep his migraines under control and manageable. They are now just occasional headaches which he knows how to handle. (hot shower & sleep or very rarely a nurefen)

It started with headaches on the side of his head when he was in y2 and when it became almost daily with no clear trigger i knew I had to do something. He was going through way too much nurefen.. Yes we tried no gluten, regular sleep, hydration, osteopathy and magnesium none of which having any sort of impact.

GP didnt offer MRI but put him straight onto pizotifen, double dosis. one in the morning one in the evening.

Yeah it seems like our best shot at the minute I will push for it. Like you say if I had been having a constant headache for a year I would be demanding some medication!

Thanks fingers crossed they will take it seriously enough. It's really starting to wear her down now bless her

Ours was prescribed privately initially but GP took it over no problems. I remember one very unhelpful nurse saying to dd ‘you probably think you’ve got a brain tumour but don’t worry you haven’t, you just need to take some deep breaths’. 🙄

There can be issues in MRIs being used in mild chiari because they are usually done laying down. When often overcrowding and occasionally herniation is only visible when the person is vertical- they do seated MRIs for this reason.
Is there anything that makes the pain worse or better?

Yeah I've heard that too. We have another meeting with neurosurgery tommorow because we want a second opinion. I'm going to ask for another scan just to rule that out. Nothing makes it better that we've tried so far. She did have oxygen at the hospital and that helped a bit...

Honestly some of the advice and lack of it we've been given so far is laughable

Is it constantly the same level of pain? Or does it change througjout the day and night?, have you noticed it's worse if she does PE or anything?

So you said, all answers welcome - just not ones mentioning Long Covid? And It's a reasonable suggestion. Just wondering why you ignored it?

Sorry didn't mean to upset you I missed that one. Yeah could be a long covid thing worth asking about definitely