Daughter had "migraine" for 5 days now

[naughty40me]

Please anyone with any experience?

My daughter age 10 has never suffered with headaches before. Started complaining of a bad head on Sunday morning.

Now, unfortunately her step sister whom she has contact with a week ago (as of that day) is in hospital with bacterial meningitis and is obviously very ill. She is still in there now.

So, being cautious I explained the situation and 111 said to go to a&e...he ruled out meningitis due to no fever or rash.

She was still no better come NYE so took her to drop in. Dr wasn't happy and sent her to children's assessment ward telling me they would run tests.

Drs there again ruled out anything but did not perform any bloods or scans and diagnosed migraine. Said to give calpol and ibuprofen which we have been doing already. Also had 2 doses of sumatriptan over the past few days and that doesn't work either.

We spent NYE in hospital more so because I couldn't get home (no car and no taxis available and we live 30 mins drive away)...nightmare.

Got home yesterday and come last night she was crying and holding her head.

She has slept last night for 13 hours which is long for her but I thought it would help so left her.

She's now up and refusing to come downstairs. Just wants to stay in bed. Have just given her calpol and a sumatriptan but I'm so so worried.

Surely she shouldn't be in this much pain for 5 days?? Even if a viral thing she would be fighting it off by now?

I'm not concerned about meningitis but I do think the drs focused on ruling it out rather than trying to find the cause of this pain.

Tbh I'm thinking of brain tumours now and all sorts

I'm going to ring GP and ask for bloods and a scan or is that being dramatic?

Single mum with no help and no one else really to sound off. Help please.

How scary for you and her

You shouldn't have to go private. Is there any way you could pay for a first appointment with a specialist? Even if it's on CC? It's terrible how bad the nhs is at the moment. Seems to be getting worse.

I really feel for you.

@incognitomum

Thank you x

No I don't have any spare cash or access to any credit cards. I'm on benefits and pretty much live week by week with nothing left over.

It seems like everything is just so very overstretched in the NHS now, it really is very bad. I'm just trying to use relaxation techniques and music etc to keep her calm and work through pain that way for now.

Last night was so scary, I hope that doesn't happen again!

You and your child are certainly not alone! My daughter has been suffering from debilitating migraines for almost two years now. She is 14. She had a migraine for weeks and missed a month of school (private is was not an issue and she has since caught up).
I went to the gp three times (just suggested ibuprofen) and a & e once. But I felt because she wasn't screaming with pain - she is very stoic - she wasn't being taken seriously. The paediatric referral was for FOUR months away so went private and had a mri. Clear but prescribed amaltriptalyne, which she took for a month bit was not effective. We tried acupuncture, physiotherapy (she also has sharp shoulder pain which comes and goes, which started before the migraines) and chiropractor. She eventually had her nhs appointment and was referred to pain clinic. They rejected her as she was under 18 and they said to try different drugs, so she was put on prozotofen, which again was ineffective. She lost weight and still recurring pain so was given an mri which again was clear.
She is back at school but I think she has now learned to live with the pain. She says at school she goes to the toilet and sits there with her blazer over her head when it starts. Unfortunately she now has vertigo and flashing lights. We are waiting for a follow up appointment at hospital (last appointment was the mri in October.
I'm thinking of some cranial manipulation. It's the time between appointments and her continual suffering that makes it so difficult.

That's terrible!

She must be suffering so much. It's so difficult when you are in pain but no one can actually see it or give it a proper diagnosis.

Hard enough for us as adults to cope with but for children it's just awful. I hope she gets on the road to recovery very soon

Oh OP this is so shit. I’ve had migraines since I was 8 and they cranked up badly after I had my now 3yo. The summer before last when we had a long, sustained period of hot weather I had a migraine that lasted six weeks. I was in agony and not being taken seriously by my GP once my usual drugs stopped working. Eventually after weeks of being sick and not sleeping from the pain, I saw a locum GP with an interest in migraine. He referred me to the headache clinic at St. Thomas’s in London. They ended up recommending a diath piercing to me, which I thought sounded like absolute bullshit but it’s changed my life. I had to pay for it (cost a little under £200 to be done by a private specialist that St. Thomas’s recommended) and in the 18months since I’ve gone from having a least one a fortnight to having just two in all that time.

I don’t know if they’d do it on a child but I can’t see why not as children can have their ear lobes pierced perfectly legally. The clinic I used was this one at this address:

Daith Piercing For Migraine Clinic
22 Harley Street
London
W1G 9PL

Aside from that could you ask your GP to prescribe some cyclizine? It’s an antihistamine but one of the side effects is that it stops nausea and that on its own is always great for my headaches.

I have had IIH a couple of times and I would have thought if it were that, the optician would have picked up on it because it causes pressure on the optic nerve. The symptoms though do sound familiar, so it might be worth asking the hospital to check her eyes again for papillodema.

Came to offer another hand hold and a bit of strength for what you're going through right now.

It is, you're right, absolutely horrendous to watch your dc in pain/ill and get no clear response from medics, and havs no way to help!

It sounds like you are a huge help, and your dd is so lucky to have such a caring mum.

If its any consolation, I had one off for two thirds of a year! Depends on the school they are in of course, but it's not hard to keep up at home. Doing regular reading and times tables, basics, then getting any work sent home from school (although they were shit at that as have been others I've known with similar).

Ask for work home, and keep pushing. No medic would expect you to accept what they'd said if different or worsening symptoms presented.

Have you got blood test results yet? Sorry if I missed that you do already.

I hope you are doing ok yourself, oh and I was a lone parent at the time also, it can get a bit grim, but you have to know that you really are doing the right things and keep pursuing a diagnosis,no matter how busy they might be with others. Poor dd needs immediate help for acute pain. I am not understanding lack of response.

No advice but couldn't read and run. Your situation sounds absolutely awful. It's heartbreaking what's being done to our NHS and how the wilful under funding of it is leaving people to suffer like this. I really hope you get to the bottom of it all soon and that your daughter has some respite from the pain.

How is she today?

She's still unwell. 😔

Woke up around 2am again and has pain in the other ear now too. She managed to settle back to sleep and is now on the sofa with her duvet and just very quiet.

Thank you for asking after her

So sorry to read she is still unwell - as she had any Scans?

Have you got a different A&E near you?That you can go to or go back to your one & explain you are not happy with the care, maybe get PALs involved.

It may be worth ringing 111 or going to A&E when she is at her worse -

If getting nowhere have a look at diet, Vitamins & push for consultant appointment to get answers.

you probably already have but if not, check eyes this weekend at an optician & back to basics with sleep/screentime/triggers.

Really hope you get some answers & she gets better -

Aw no poor wee mite. She'll be feeling really down i bet

Is this still going on? The poor girl.

If it does turn out to be migraine I wonder if they would prescribe Botox for a child. I have chronic migraine and it’s improved mine enormously. Does cold help? For many migraineurs a cold bag at the base of the neck helps. Have they given her triptans yet? They’re best taken before the pain gets too extreme, but if it is migraine they can cut a migraine off at its knees.

I hope they get to the bottom of it ASAP!

Try and get some naproxen. Whenever I've had a 9+ day migraine, that has broken me out if the cycle. Its usually for age 12 and above but they do allow younger to take sometimes I think. Sounds horrendous

They are saying it's not migraine.

Based on the fact that the pizotifen didn't help and from the way she is describing the pain. The drs are saying it's not migraine and so migraine medications won't help.

But I mean how do they actually know without trying different ones!!!!

Her description is that it is like a band around her head and that it is filled in...so like she is wearing a swimming cap.

It's squeezing in and out and also prodding her.
Both her ears are hurting now too.
I honestly don't think an ear infection can suddenly develop in an ear that a dr has looked at and was fine less than 24 hrs prior.

I'm certain the ear pain, simultaneous in both ears is connected to the head pain.

But a&e won't do anything, GP can't do anything, we're booked in and have to wait our turn I suppose.

And it drives me mad when they say any problems just bring her back like it's really easy ...it costs me £15 one way in a taxi and I'm broke and also not earning a wage as I'm unpaid leave right now on top of everything else!

So so stressed and it hurts seeing my daughter in so much pain it's just not right .

Your poor dd, and poor you. I can't believe this is still going on.
I can't remember from earlier posts - has she actually had a scan of her head?

@aleC4

Yes she has had an MRI which was all fine.

However one of the drs the other day mentioned that she may need more bloods/scans as there was a lot of movement on the images but that they were still good enough.

As it stands her bloods are fine, MRI is fine and the diagnosis is a chronic daily headache but it really is debilitating now. She's so pale and can hardly do anything, ibuprofen or calpol doesn't touch it

Could it possibly be a tension headache? I suffer from migraines and tension headaches and the tension headaches are awful, like a tight band around the head, feels like a stabbing pain in the base of the skull. The best thing I’ve taken for the pain is syndol tablets from boots, absolute life savers

Op she needs a different and stronger painkiller. This is now likely a rebound headache where the meds you usually use just dont work and then actually make it worse. I've had the exact same last week. Get some naproxen!!! Insist they give it to you or something similar.

And as other poster said, syndol also very good. Just ensure it's the formula with the muscle relaxant...that is very important to get the right one. Cant remember the name of the ingredient but begins with d I think.

She hasn't been having any medicine apart from the odd dose of calpol at the hospital or ibuprofen at home as they told me to limit it.

It's been weeks now with no medication.

She isn't old enough to have syndol but I will ask about naproxen...we have an appointment this morning after another bad night, she is in so much pain and now has this tinnitus in both ears.

God she has infection in both ears now.

Well, the one that they thought could be infected but was full of wax is still full of wax but the other one that they said was fine is now badly infected.

She has been given antibiotics.

I asked about the naproxen (referencing from the nhs website that they give it to girls if any age for period pain) the dr said they do not prescribe it and ibuprofen is just as good.

They will not give her any type of codeine either due to her age. The only thing past calpol/neurofen would be morphine and only administered in hospital.

So that's me told.

She is prone to ear infections and has had other things in the past (cyst thing on her eye too)...she basically has a shit immune system and when I try and tell the drs the whole picture they just shrug their shoulders.

Grrrrr

You can buy naproxen under other names if you look for period pain meds. I think one is called feminax or something. Maybe google it. I would recommend taking omeprazole though as it destroys your stomach.
I am so sorry you and your dd are going through this.
I have a rare autoimmune disease and have had a couple of related conditions with extreme, severe pain. Fobbed off by the nhs for months, I eventually got treatment privately and was treated immediately.
It shouldn't be necessary, but it seems to be the way it is now. You haven't really had a proper diagnosis.

Oh, I am so sorry OP, I just read that you are not being paid at the moment.
Can you see a different gp?