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6 months of continuous headaches

12 replies

katherinious · 27/05/2025 22:14

Long story- bear with me!

My 10yo (nearly 11) son has had a constant headache for 6 months. It began following a viral infection, but we had previously been to the Dr after noticing that he appears to suffer from something resembling a migraine every few months - severe headache with sickness. In the last 6 months we have been to the Dr numerous times. He’s been seen by a paediatrician who arranged a blood test (clear) and an MRI (clear for everything other than widespread inflammation in his sinuses). He’s been prescribed a steroid nasal spray (no change) and antibiotics (no change) aimed at treating sinus’s infections. He’s been on pizotifen, but it didn’t do anything for either preventing headaches or resolving the on going headache and it gave him a low mood. He’s had sumatriptan, but again, it didn’t seem to help with a migraine attack. We’ve had his eyes checked, ensured he drinks plenty and limited screen time. There are no issues at home or at school. As you can imagine, 6 months with a constant headache (we grade it from 1 to 10 and most days he scores it a 5) is making him rather miserable. We’ve tried combinations of paracetamol and ibuprofen and now only give it when he asks for it, usually it’s when it’s a 6 or 7. It’s also made him quite anxious as he worries about doing things that will make his head worse. The most recent attack came on when he was at school. His head went from a 6 at the start of the day, to an 8 while he was at school. He was sick and then sent home. After initially having a dose of paracetamol and a sleep, the pain intensified again and he was sick every time we tried another dose of paracetamol.

On my request, we’ve been referred to a paediatric neurologist and are waiting for a second opinion. The paediatrician we were seeing was heading down the route of “well we can’t seem to find the cause, so this might be something you just have to live with” on the basis that it wasn’t impacting his life that much. I disagree and feel that it is impacting his life a lot!

I mainly wanted to ask whether anyone has been in a similar position? Did you find a cause? What treatment worked? I’m worried about the next few months as he finishes primary school (he’s got a 3 night residential trip and has been worried for some time about how his headache will be while he’s away) and the transition to secondary school. I’m also worried that in the last attack he couldn’t tolerate a painkiller that is supposed to be gentle on the stomach.

The paediatrician has mentioned that riboflavin and magnesium can help but hasn’t pointed to any suitable supplements. I feel a bit stuck currently as we wait to see the next Dr, but as the referral was made as “routine” it will probably be a few weeks/months before we’re seen again and in the meantime, we seem to be in a cycle of a severe headache coming on every 5-6 weeks and no let up in the constant low grade headache.

Any advice or similar experiences greatly appreciated!

OP posts:
BackToRealitySigh · 27/05/2025 22:19

Following with interest. Dd is 14 now but has headaches for around 6 months+ now.
She's always felt a bit nauseous around periods so sort of thought hormones at first.
Had her eyes tested and she got glasses which she never bloody wears
Just waiting on blood test results now.
Interested to read other people's experiences.

tellmesomethingtrue · 28/05/2025 00:04

I don’t want to scare you but my cousin had constantly headaches and eventually insisted on an MRI of her head… revealed a benign tumour which she immediately needed surgery to remove. They tried to fob her off but she knew something was wrong.
please push to get your son seen by a specialist.

katherinious · 28/05/2025 07:44

tellmesomethingtrue · 28/05/2025 00:04

I don’t want to scare you but my cousin had constantly headaches and eventually insisted on an MRI of her head… revealed a benign tumour which she immediately needed surgery to remove. They tried to fob her off but she knew something was wrong.
please push to get your son seen by a specialist.

He’s already had an MRI, which thankfully was clear

OP posts:
TigerRag · 28/05/2025 16:10

Is he keeping a headache diary? I found lights next doors loud shitty music , cheese and lack of sleep triggered mine

Migraine buddy is an app where you can keep a headache diary

I was about your son's age when I stated to develop headaches. Parents were told it was nothing. My "nothing" turned out to be 2 congenital brain conditions and epilepsy. (Which I've thankfully outgrown)

Giraff3 · 28/05/2025 16:20

Im a migraine sufferer and it started for me in primary school. I went through loads of assessments then into high school. Ended up on sumatriptan. If they dont help i take naproxin.
As im older now i can look back and also know what my triggers are....
You say he drinks enough......but i now carry a water bottle with me so i can see how much ive really drank.....if i dont drink enough water, i start with a headache that turns into a migraine.
Have you had his teeth checked for TMI? Could he he grinding his teeth?
The most relief i got was from a ostiopath who released alot of tension in my shoulders, neck, jaw.....he then put me in contact with a sports massage lady who removes all my stress from my neck and jaw every few months (crainial?) If i ensure i drink enough water and get the release from my neck and jaw it turned my weekly migrains into quarterly.

Im sure more ppl will comment and have there own journeys to share.

But when i was a kid, they tried to pin it on too much chocolate or starting puberity......unfortunately its trial and error for everyone. None of my family members suffer either. So they could never understand the pain you get with them.

itsonlyjoan · 28/05/2025 16:31

My neice not had a headache but bad back went hospital last weds diagnosed with bone and lung cancer saturday she's 15

katherinious · 28/05/2025 17:17

TigerRag · 28/05/2025 16:10

Is he keeping a headache diary? I found lights next doors loud shitty music , cheese and lack of sleep triggered mine

Migraine buddy is an app where you can keep a headache diary

I was about your son's age when I stated to develop headaches. Parents were told it was nothing. My "nothing" turned out to be 2 congenital brain conditions and epilepsy. (Which I've thankfully outgrown)

We’ve tried a diary but not noticed any particular patterns.

How were your two conditions diagnosed in the end? Glad to hear you’ve outgrown them!

OP posts:
katherinious · 28/05/2025 17:23

Giraff3 · 28/05/2025 16:20

Im a migraine sufferer and it started for me in primary school. I went through loads of assessments then into high school. Ended up on sumatriptan. If they dont help i take naproxin.
As im older now i can look back and also know what my triggers are....
You say he drinks enough......but i now carry a water bottle with me so i can see how much ive really drank.....if i dont drink enough water, i start with a headache that turns into a migraine.
Have you had his teeth checked for TMI? Could he he grinding his teeth?
The most relief i got was from a ostiopath who released alot of tension in my shoulders, neck, jaw.....he then put me in contact with a sports massage lady who removes all my stress from my neck and jaw every few months (crainial?) If i ensure i drink enough water and get the release from my neck and jaw it turned my weekly migrains into quarterly.

Im sure more ppl will comment and have there own journeys to share.

But when i was a kid, they tried to pin it on too much chocolate or starting puberity......unfortunately its trial and error for everyone. None of my family members suffer either. So they could never understand the pain you get with them.

Thank you. I might try an osteopath while we’re waiting. I did wonder about teeth but he’s seen a dentist fairly recently and nothing was picked up. I noticed recently that he has started snoring, which draws me back to sinuses again.

Sumatriptan was touted as a bit of a miracle drug for us, but it made no difference at all and actually suggested that perhaps it wasn’t migraines after all on the basis that it didn’t help. I wonder if I should try and ask for an alternative painkiller, it’s hard because of his age though as so much isn’t licensed.

OP posts:
Giraff3 · 28/05/2025 17:47

katherinious · 28/05/2025 17:23

Thank you. I might try an osteopath while we’re waiting. I did wonder about teeth but he’s seen a dentist fairly recently and nothing was picked up. I noticed recently that he has started snoring, which draws me back to sinuses again.

Sumatriptan was touted as a bit of a miracle drug for us, but it made no difference at all and actually suggested that perhaps it wasn’t migraines after all on the basis that it didn’t help. I wonder if I should try and ask for an alternative painkiller, it’s hard because of his age though as so much isn’t licensed.

@katherinious thats why i also get prescribed naproxin.......definitely try a osteopath . Only takes 20 min for a once over. But it could be his crainial area causing it.

TigerRag · 28/05/2025 17:51

katherinious · 28/05/2025 17:17

We’ve tried a diary but not noticed any particular patterns.

How were your two conditions diagnosed in the end? Glad to hear you’ve outgrown them!

I injured my neck and no one could agree on the diagnosis so I had an MRI

I did have a CT scan as a child because of my headaches where everything was apparently ok

Cuppaandbiscuit · 28/05/2025 18:04

Any allergy testing? My son has been prescribed a nasal steroid spray for enlarged turbinates due to a severe dust mite allergy. He doesn’t suffer either the headaches though. I use mighty kids supplements for the magnesium

Xiaoxiong · 26/02/2026 09:46

Hi @katherinious - have just PMed you, we are in a similar situation with our DS (I have started another thread and yours popped up).

I really hope your son is feeling better now, did you ever find something that worked for him?

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