Migraine every morning - DS(15) - now on day 11

[CiderwithBuda]

As above we are now on day 11 of DS (15) getting a migraine every morning. It seems to be shortly after he wakes up and happens even if he doesn't physically get out of bed.

We had a spell similar to this last May and June and we tried some preventatives - Pizotifen and beta blockers which didn't seem to help. He was thn prescribed Topiramate which we thought was working but when I took him back to GP last week we discovered he had been on half the dose he should have been taking - 25mg a day rather than 50g. He is now on 75g but it's not doing anything. He also has tried Sumatriptan and another triptan but they don't seem to help.

He had an MRI in July and thankfully all was fine there.

It's not rebound headaches as he is not taking pain killers as he says they don't do anything. He just tries to sleep it off.

It's classic migraine with aura.

I took him to a chiropracter yesterday - he reckons there is a lot if stiffness in his neck muscles but although that wouldn't help it wouldn't cause it.

Had a really detailed eye test in June - all was clear.

Went to dentist - no issues with jaw or bite or grinding teeth.

Tried cranial osteopathy last time round but it didn't really seem to help much.

He is thoroughly fed up and is missing so much school which is not great with GCSEs this year. He claims he isn't stressed about anything and is generally a fairly relaxed type.

I'm taking him back to GP on Monday and on the advice of a doctor friend will ask to be referred to neurology. Last time we were just referred to a general paediatrician.

Just wondered if anyone had come across or experienced migraines like this?

A few years ago my DD started getting bad headaches in the morning (along with diminished appetite, vomiting and feeling lethargic) which my GP dismissed as viral. I knew there was definitely something wrong with her so took her to the optician who discovered she had dangerously enlarged optic discs and sent us to eye emergency. After more tests, she was admitted to hospital where she was diagnosed with idiopathic intracranial hypertension. Apparently the fluid builds around the brain during the night which is why the headaches were particularly bad in the morning. After a few lumber punctures and a year on medication she was fine but they still don't know what caused it. Might be worth taking him to the optician?

Elf - a GP dad sounds useful! I'm going to try persuade him about acupuncture - he is really not keen though.

Wineloffa - he had a really thorough eye exam in June when this last happened. Your poor DD though - that sounds a bit scary.

Have you tried contacting the migraine trust ? They are very helpful can give advise help keep track of things see if there are triggers etc maybe look at a private ref to neuro specialist who could ref to gosh migraine management

A couple of other things I thought of yesterday:

In terms of referral, I know it's miles away but my cousin's daughter is seen at GOSH for migraine - if your GP is having trouble finding somewhere to refer would it be worth an initial appt there or one of the other London clinics? Or contacting them and asking about a specialist more local to you

There's also
www.nationalmigrainecentre.org.uk/ who do phone and Skype sessions
And
www.uclh.nhs.uk/ourservices/servicea-z/neuro/hsnhnn/HEADAChe/Pages/Home.aspx

Also, I use an app to log mine, because I'm on a wait list for Botox, if you make sure that you record details because the first appt always seems to include the phrase "record them for 3 months then we'll review"

Just for rescue meds - but has been a revelation for me, is to take them with Coke instead of water. It's something to do with the sugar, caffeine and bubbles, but my consultant said he sees lots of patients that it helps

Thanks for those links Wendla. Had a good look at the National Migraine Centre website and I have ordered Vit B2, magnesium and co-enzyme Q10. All of which they say can help. DS has a fairly crap diet. No matter how I have tried over the years he resists a lot of things. I have to count ketchup as one of his five a day and even then it is normally two a day if I'm lucky!

He hates taking tablets especially big ones so it will be a struggle to get him to take them but we are just going to have to persevere.

Will also start a diary.

He has resisted coke so far as the migraines all start first thing and he can't face it then but will see if that makes a difference.

Mommy03 - will def be trying for a private referral. It's nt easy though. I tried in the summer and because he is under 16 he is under paediatrics and very few of them practice privately. Certainly down here. We used to live in Hungary and I was very close to going back there to see his old paediatrician there. Which is still an option! Will also try the migraine trust.

My dd sees the neuro at gosh migraine clinic.
There is option of an injection .
Keep a diary and insist on referral to specialist clinic.

Just updating to say we have an appointment for next Wednesday at the National Migraine Centre. Fingers crossed we get somewhere.

My dd started with occasional migraines at about 13. They gradually increased in number and when she was 16 she was waking up with migraine most days, often accompanied by vomitting, sometimes hemiplegic with facial paralysis. We struggled through for months and the hospital 'specialist' tried a variety of medications all to no avail. In the end I booked a private appointment at the National Migraine Centre in London. They are run as a charity with fully qualified doctors who all specialise in headache. As a charity if you can afford it you pay the recommended charge but, if not, have a chat! Anyway, the doctor my daughter saw was fantastic. It was concluded that the medications used to help with migraines (all prescribed) had developed the problem into medication overuse headache. The doctor weaned her off all the meds she was taking with the help of pain killing injections and non addictive tablets. My dd had a very tough week or so but in the last 2.5 years since that consultation she has had only one migraine. Although we've not needed it, the doctor also gave advice on migraine, different types, how to deal them and suitable medication. If you have no luck elsewhere, op, please consider contacting the NMC. It sounds like they're paying me to advertise, I promise they're not!

Good luck!

Sorry didn't read page 2 of thread, but looks like you're ahead of me op. Hope Wednesday's appointment goes well.

Thanks Clara. Glad to hear they were able to help your DD so well. Really hoping they can do the same for DS. In his case I really don't think it's mdication overuse as other than the preventative he hasn't been taking anything else for about a week as he doesn't find them helpful.

Have you tried magnesium? My 12 year old suffers from cluster headaches and I started giving him a magnesium tablet once a day and he hasn’t had a headache for 7 weeks. It could just be a coincidence but it might be worth a try as I can imagine you are feeling desperate

Has he had his eyes checked recently?
I got terrible headaches - not migraines though and it was my eyes, combined with squinting at a screen a lot!
It might not help much but it might be worth looking into.

"stiffness in his neck muscles but although that wouldn't help it wouldn't cause it."

Yes, stiff neck muscles can trigger migraine. A chiropractor successfully treated my 17 year old son's horrific migraines and taught him techniques to prevent them in the future. From having 1 a week he now has them a couple of times a year. I'm not really a fan of alternative therapy but this was amazing!