Any Doctors around that can advise ? TEEN WITH CONSTANT HEAD PAIN

[Seashellsandsand]

Hi I’m just looking for some advice or ideas regarding my DD age 16. For the last 18 months she has had a headache or migraine every day or at least 4 days a week. Her migraine affects her vision and sometimes she vomits. Her headache is a constant cap of pain. We have been fobbed off with tension headaches etc and been back and forth to GP. Sometimes she gets dizzy when standing up and gets pains in her legs and chest. In January they requested blood tests which kept having to be repeated due to elevated platelets. Platelets are consistently high. She has been taking Propranolol for the head pain for about 10 months which has reduced the migraine with Aura frequency v slightly. She has tested negative for Iron deficiency but the Haematology consultant requested a specific test for under lying Anemia? I think. Her score was 12 which is the top figure . If under 12 Haematology would see her.
Haematology have told the GP to treat with high doses of Iron for 3 months then they will see her if platelets not reduced.
Im really concerned and I feel we are being fobbed off.
My DD’s quality of life is affected. Every day she is taking painkillers or in bed with pain .
I would be grateful for any insights.

Sorry I just checked and the current advice about iron for women is not so straightforward. I see it recommended that we get our iron from our food and be cautious with supplements.

newsnetwork.mayoclinic.org/discussion/tuesday-q-a-both-too-much-and-too-little-iron-have-potential-to-lead-to-health-concerns/

Pain killers can cause rebound overuse medication headaches, so triptans might be a better alternative / an underlying infection could be causing an issue / autoimmune diseases can cause high platelets - has she been tested for Essential thrombocythemia - she may not be the usual age for this, but having had a Dad that was the wrong age, wrong sex for a medical condition not unlike this, worth seeing how specialised the tests are she's been given. Many GPs really have limited knowledge on some conditions, so always worth throwing in 'have you checked for...' I got to the stage with Dad, after finally getting a diagnosis of saying that I was not a medical expert, just that I'd had to become one specifically for his condition!

Do they think the platelets and the migraines are related? My ds has migraines and zolmitriptin really helps, especially if he takes it as soon as it starts. Must all be very worrying for you trying to get to the bottom of it.

Now you've said that I think it is quite likely to be a head/neck alignment issue, and as previously mentioned, a visit to an osteopath would be helpful to rule that out one way or another. My dd is hypermobile, and her headaches were caused entirely by an alignment problem.

Ok will look at that thank you

Not sure she has had that done so worth a check thanks

Thank you to everyone that has posted. Apologies I’m struggling to reply to everyone but I’m very grateful for the posts.
You have all been so helpful and given me some more ideas and information to go armed to GP !

I don’t believe it is being caused by the painkillers as she tends to suffer with the pain and takes them as last resort. She takes Ibuprofen but before that it was liquid Ibuprofen / Paracetamol as DD couldn’t swallow them .

So possibilities so far as follows ;

Osteopath/ Chiropractor (hopefully not too expensive )

Push for a scan !

Coeliac test - This seems like it could be a possibility. DD has bloating , Constipation , tiredness / fatigue.

Lyme Disease test

Hemochromotosis test

Essential thrombocythemia - I have been suggesting this to the GP as one of the Primary symptom is headaches which is why she referred to Haematology but they bounced the referral back for 3 months then said to repeat bloods after Iron treatment.

I have noticed when they take DD’s blood that it’s really thick and dark. I’m guessing it’s the elevated Platelets causing this ?

@Seashellsandsand - the quirky thing the OCT scan at the opticians picked up, after the MRI and lumber puncture is , in my case, Idiopathic Intracranial Hypertension

This is not related to blood pressure, but to the pressure of fluid around the brain not draining away properly which results in crushing headaches, amongst other things.

This is a very simplistic explanation. Well worth getting that enhanced scan done at the optician - if anything is picked up then they'll bypass the gp and direct your DD straight for scans.

Referred to a neurologist for sure, who can check blood tests and get an MRI scan. (Not a doctor but DS has migraines and they were pretty clearly migraines, but we were still offered an MRI and one neurologist appointment)

Be careful of chiropractors or osteopath as first port of call - consultant neurologist first and check any other possibilities with them.
In the meantime, as you have quite a wait usually - ensure she is hydrated enough, eating well, regular sleep patterns. Major trigger for teenage migraines is irregular eating/drinking.

Has she had a full sight test, and a checkup at the dentist?

I was ill with similar symptoms between the ages 14-17 following a head injury and concussion. I tried a lot of different tests and medicines from doctors who said they didn't fully understand what was wrong and the symptoms got progressively worse regardless of the meds.

So I went a different route and tried out acupuncture with a fully trained doctor of Chinese medicine and after a few months of treatment, I was pain-free.

Chinese medicine takes a very different approach from western medicine and sometimes it works much better than pills. I really recommend your daughter tries it out. It changed my life, it gave me my body back.

Not a doctor.
My son was diagnosed with migraine at hospital, but our wonderful GP wasn't happy with his waking with a headache, pain worse on bending forward and feeling better after vomiting on waking. Eye test for blurred vision and neuro basic observations (balance, follow finger, touch nose etc) at hospital led to same day CT scan which caught his brain tumour in time. Don't be fobbed off.

@2bazookas yes she has had checks for both

@GerronBuzanDoThaWomwok how terrifying I do hope that your DS is recovering well.

That is what I’m afraid of.
DD was texting me from College today telling me that yet again her head had started and was pounding. She struggled to focus in class. This is everyday !!!!
Ringing in the morning to request a scan and a test for Coeliac .

Thank you, he is- our GP is our hero.Take care, and don't be embarrassed to discuss a tumour - if it is something else, you will be so relieved to have ruled it out; and if it is, the relief that you followed your instincts and asked the difficult question will be immeasurable. Thinking of you both 🤗

I rang this morning. GP advised upping the Propanolol, headache diary and Coeliac test. I requested a scan but was told we must do these other things first. I discussed a tumour and they said they wouldn’t be concerned about that and by now she would be v unwell if it was a tumour as been going on so long 🤔

Please take her to the opticians for an enhanced OCT test - they can see much more than mere vision - they picked up papilodemia in mine (optic nerve swelling) which needed urgent investigation to rule out tumors and I was referred urgently for MRI, bypassing gp.

Worth having done imo.

Thankfully, in my case no tumor, something else which is being treated.

if I were you, @Seashellsandsand, I'd go for an enhanced OCT test - just as an avenue to rule out or expedite an mri

@BangUpToTheElephant do you mind me asking what is wrong with you ? Totally understand if you don’t want to share but I had a very similar experience and was found to have Chiari type 1 and IIH I’ve never met anybody who’s ever heard of the condition let alone has it so interested to hear if it’s the same thing x

@Thatboymum - I have IIH - i feel very alone with it. Not to sidetrack from OPs thread, we should start a different one?

Thanks I will look into that x

This isn't meant to scare you, as there are a thousand other reasons for a headache other than a tumor, but your GP is wrong.

When my daughter had her tumour removed, another kid with similar, had been suffering with headaches for nearly 2 years. Another (spinal tumour) had symptoms for 9m+.

Whilst it's true that it would be unlikely to be a high grade very malignant tumor after 18m, there are low grade ones that still need urgent treatment, which often lie undetected for ages, because GPs are rubbish at picking them up. The GP dismissed us, and they dismissed them.

They really really should be scanning

Apologies if already said, but has she worn/does she wear braces on her teeth? Jaw misalignment can cause awful migraines etc.

This^
My friend's daughter had a terrible year of headaches, tried loads of medication, missed loads of school.

Eventually saw a neurologist and it all turned out to be coming from her jaw. She was referred to a specialist dentist who made a brace for her to wear at night and that helped a lot

My eldest son suffered something similar, it was to do with his neck and spine, he sits in front of a computor for hours because of his job. He paid privately and got it seen to and has been so much better since.