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.

OMG! Thank you for this post.

DD (16) has been complaining of headaches for a year or so. About to go to the doctors as, in consultation with the optician, we have now eliminated vision/glasses as a cause. Back in the Spring she woke up one day and her shoulder/neck were massively swollen on one side. I've been noticing over the summer that her shoulders are wonky. I was going to mention her neck to the doctor when we go about the headaches but I'd not considered the two may be linked.

@lingle thanks

Apologies I’m struggling to keep up with posts.
Thanks for all the suggestions.

@Discovereads I will bear in mind what you have said re Neurology . Her symptoms scare me sometimes.

@Wtfisgoingonnow No not been tested for Coeliac

@MarmiteCoriander DD does wear glasses and I have had her eyes tested recently. She isn’t on any form of contraception and I’m pretty sure it’s not hormone related as it’s near enough every day. I think she’s become so accustomed to being in pain . No current dental issues except she shows signs of Clicking jaw (Loose joints/ TMJ in family ) of which I’m aware TMJ can contribute to head pain but wouldn’t explain the migraines and platelets. The food diary is a good idea although there isn’t an obvious cause.

@Apandemicyousay Thank you for detailing that !
I realise it’s trial and error diagnosing her and understandably I am frustrated and concerned for her. But it’s helpful to hear that treatment is progressing in the right direction.
I hope that it is just a combination of Anaemia and possible neck / head misalignment as they are treatable things.

With ongoing debilitating headaches for so long I would have thought an MRI would be a sensible request to make. I'm another with a brain tumour in the family and this rang alarm bells for me. I hesitated to post because the thought is scary, but I do think it's something that should be eliminated as a possibility.

Is there another GP at the practice you could see to get a referral to neurology? Depending where you are in the UK, waiting times can be up to 2 years for “non-urgent”. I knew something was up with me so I paid for a private neurology appointment and he put me back into the NHS without the wait.

We have seen various GP’s and I have even suggested a scan but when they do the obvious GP Neuro tests they don’t think it necessary.
I should probably push for a scan.
Is it MRI she would need or CAT ?

CAT much cheaper and quicker to rule out any obvious nasties. But the MRI is the gold-standard.

My son had an MRI, as did a friend who was referred due to constant migraines. I think that would be the route to go, but I'm not certain what CAT scans are used for.

Thanks

A CAT scan would allow them to rule out a tumour/stroke/aneurism - probably more of an a&e job than what you’d get from a neurologist.

Have you heard of the low tyramine diet, it’s useful for some people who suffer with chronic migraines.

No I’ve never heard of it thanks

You mention a family history of loose joints and TMJ issues. Have you considered Ehlers-Danlos syndrome which can come with MCAS (mast cell activation syndrome). A diet avoiding histamine triggers can be life changing for some people with headaches. After getting coeliac disease ruled out.
Try a week without gluten, then a week without dairy, then a week without sugar etc and you might find it’s dietary induced.
Also with the platelet issue consider long covid. Can be very disabling.

get a pulse oximeter thing and measure her heart rate when at rest and then see what it does when she stands up still. Measure every min until 10minutes. There can be something called POTs that goes with either condition above that can cause headaches and trigger migraines.
you sounds a great mum advocating for your daughter.

A&E won’t irradiate a child’s head with a chronic problem if not convinced they had had an acute event that day. They would be seen onwards by paediatrics or neurology.

I would say it's the pain killers giving her constipation.
Have you tried a total body detox?
Seen a naturopath? She may have heavy metal toxicity.

Coming on to say chiropractor, osteopath. I've been seeing one for years now and again when I seize up get headaches. Had an MRI last year for something else. The consultant showed me the picture of my spine and the scoliosis I have. I was stunned but it explained so much

Ehlers-Danilo’s I have suggested to GP and Physio in the past as DD had knee issues but they just say she has a few trigger points and loose joints. Both girls failed their hip tests as babies but I’ve always been told it’s just loose joints.
DD did have Covid quite badly in 2021 so it could possibly be long Covid.
Thank you for your post I will look into the diet suggestions.

I'd definitely push for a scan.

The only symptoms my 3yo had of her brain tumour were headaches (low grade so more life changing rather than life ending thankfully).

It almost every isn't a tumour, or anything serious, but ongoing head pain should always be taken seriously.

Analgesia headache.

I would look into EDS again. Most GPs know little about it.

I haven’t read all the reply’s so apologise if I’m repeating anything but Google idiopathic intracranial hypertension. If the symptoms sound rite visit the optician and see if she has swelling of her optic nerves and go from there

When you say you've had her eyesight checked, has she had an enhanced OCT scan done at the opticians? It's a bit more in depth than a regular eye test and costs around a tenner I think.

I had mine done at Specsavers as a why not, sounds interesting kind of thing - and it picked up something quirky which needed a fast track MRI and lumber puncture. Thankfully not a tumour, but a different condition which ultimately causes severe headaches and tinnitus.

A headache lasting so long is awful for your poor daughter. My advice is to insist on a CT scan to rule out anything within the brain first. If they see anything of concern on the CT scan they will refer on for MRi scan.

My daughter had constant headaches, often causing sickness and she couldn’t get out of bed most days. Gp fobbed her off for weeks until we insisted CT, turns out she had a Dermoid tumour which is not cancerous. I really don’t want to scare you but they should be ruling out anything like this.

Constant use of painkillers also gives horrendous headaches and A and E drs were continually telling us about it, before the CT scan.

Headaches CAN be a side effect of pain killers.

I remember reading in a medical journal of someone who had been investigated for everything but still had headaches for years, it was a reaction to paracetamol.

I know migraine isn't the same as a headache, I've been through the hell of migraine as a teen.

Has she tried different painkillers?

Is she hydrated? It can help.

Sorry it's a US link. I know you said she suffered before but it is worth exploring.

www.health.harvard.edu/blog/stopping-the-vicious-cycle-of-rebound-headaches-2019110718180

different causes for everyone but mine were neck/spine alignment

I began having migraines around age 17. It took until my 30s to find a solution and the likely cause. For me it was a misalignment likely caused by a car accident. I have a reverse curve in my neck. What helped was chiropractic care. Yoga is also very helpful. When I watch my posture and do yoga or simple stretching regularly I am fine. Otherwise, still get terrible headaches but not as often a full blown migraine.

I don’t see Lyme disease mentioned. Insist upon a test for this - it’s very inexpensive and undiagnosed Lyme is a nightmare. Tell them she found a tick long ago and had a rash you forgot about if they fight you on it.

If you suspect an iron problem also make sure she is tested for hemochromatosis. Less talked about but causes all kinds of issues. And I’m shocked they are loading her up with iron. It’s not good, especially for women.