D1's Migraines are happening every single day

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Hi, I did post another thread a while ago about this, but I'm feeling a bit isolated and stressed.

Ds1 (13) has been trying various meds for his awful migraines since October. Right now he's been taking 40mg of Propranolol a day and he also has 5mg of Zolmitriptan nasal spray for when a migraine strikes. He has been on this concoction since the 24th November and he has had a migraine every day solidly since then. Sometimes the spray works, but not often. He has missed so much school as well, but I was able to get a letter from the doctor so that his absences can be authorised.

Has anybody else experienced their child suffering a migraine solidly every day for more than two weeks and did you eventually find something that works?

We are seeing the doctor again tonight and a specialist on Wednesday, but it's so horrible to see him suffering every single day and not be able to just take the pain away!

Hi all, thank you for your replies. Getting to the hospital was ok but trying to park was hideous. I'm glad we left two hours early!

The specialist took a history of his headaches and then asked him when the migraines started. He also did some reflex tests, looked in his eyes, blood pressure, weight and height - all were normal

He said that he was almost certain that ds is suffering with migraines.

He said what a few others have said - the painkillers could be causing headaches and advised me to stop giving him the zolmitriptan and any other painkillers.

He also said that he could up the propranalol to 60mg a day instead of 40mg because they seem to be having some effect.

He is also arranging a scan, but he told ds not to worry about the scan as he doesn't think there is anything sinister happening, but migraines every day are unusual so we need to rule anything else out.

I did want to ask the doctor something, but as ds was in the room all the time I couldn't. Their grandmother on their fathers side had an inoperable brain tumour, so even though the specialist is not concerned that it is something else, I am worried sick!

Thank you for the link MrsWembley. I hope that stopping the sprays and the paracetamol will help.

Took me 27years to realise caffeine was one of my migraine triggers. There are others such as heating i can't stand central heating. Orange and cheese are the other two, i still get them but so far its a lot more Manageable than before.

Sometimes anti-inflammatories help me such as naproxen or even ibuprofen.

Try giving aspirin instead of paracetamol. Dc2 finds its much more helpful.

Under 16s aren't supposed to take aspirin.

Every day migraines are unusual. It not uncommon to headache specialists
Always good to get mri
Dd s threw up a structural.anomaly she has always had.

Cestlavie - How did your dd react to having a scan? Was it traumatic?
Also, how do they keep you completely still in those machines for all that time?

She was 12 and coped fine with mri You can take music in to play. Ask for the leaflet.

(Whereas the ENT vestibular testing she started with was much more challenging...)

Keeping still I think they have things around to hold your head still like padding

Don’t worry about the scans, they don’t hurt whatsoever, they just make loud noises.

One of mine has had them routinely a few times a year since they were 10yo (not migraine - for something else). They have to have head right down to base of spine so takes quite a while but they have never been disturbed. They have always had it through a children’s hospital so the mri’s are set up with DVD players (mirrors so they can see the screen, sound piped in). They get to choose the movie etc. Keeping still has never been an issue. Seriously, by 12yo I was just dropping them off in the mri wait area, would go get a coffee, have a wander, come back and they would come out when they were done.

Next year mine will swap over to the adults hospital and will just have to cope with the boredom, no such bells and whistles with the machines there.

Thank you cestlavie and Hopping, I think he will be ok if he is allowed music.

He's off school again today. I spoke to his head of house yesterday and she was really sympathetic and we discussed a plan for when he is able to return to school.

Since he came off the painkillers two days ago he has still woken up with a migraine. Is this just the medication overload leaving his body? He was begging me for painkillers last night and I feel horrible saying he can't have any.
He was really hot last night as well.

He often says that when his head hurts he feels like he is in a dream and that he is 'further back than his body'

I have to say that when he says things like that it terrifies me. I am running on extreme adrenalin at the moment. I burnt my fingers yesterday picking up the metal stand that the pans sit on on the hob. I forgot I had just been browning off some mince moments earlier!

I'm guessing if the specialist thought that there was anything seriously wrong he would have sent him for a scan immediately?

DS every morning headaches turned out to be Sinusitis, took an MRI to diagnose as he had no other symptoms

Your poor ds, I suffered with bad headaches as a teen for a couple of years. Nothing as bad as your ds. I was on inderal I think they were called. They helped and by the time I was 18/19 they stopped.
I usually get a very bad one once a month I think to do with hormones.
I would push for a scan as soon as is possible. Ring up every day for a cancellation .
I hope you find the cause soon

You may not find a cause
It s a not uncommon thing
Try different preventive
Get into a headache service and access services like psychological support
Try the migraine trust

Thank you cestlavie, I will look into those things.

He has had a really bad one since this morning. He is begging for painkillers, but I can't give him anything. He's had cooling migraine strips, the balm I bought and I have massaged his head, but it's a bad one.

I hope I get a call on Monday with an app for his scan. Ideally I could do with not going to work next week, but I already took this week off.

This is so miserable and frustrating because I can't do anything to help really. I'm just going on the instruction of the specialist. I can't see that he will be able to go to school on Monday. I hope he's going to be ok for Christmas as we are going away.

I have been prone to headaches and migraines all my life. I had my first migraine at about 12. When I was at Uni I had headaches all the time. Went to the doctor and they said they were stress related. I still get headaches now, but rarely migraines, I get headaches that are the same severity of migraines that last for 3 days but without the aura.

The things that help me are:

Not getting dehydrated or hungry - so regular small meals, and water. Personally caffeine helps me, and I’ve never worked out any trigger foods apart from onion.

Gettng enough sleep, but not too much.

Excercise - nothing manic, but something that is enjoyable and just gets things even excercise at home.

Not having time to worry about things, keeping busy. It’s often at weekends when I’m not in a routine that headaches strike.

I use ibruprofen & codeine for the pain, (not good used all the time as it can constipate and be addictive). But check with your GP or specialist first obviously,

All of the above is just my personal experience, but if there is no other diagnosis at this time it may be worth doing everything non medical that you can.

Is he an anxious child? Has it coincided with starting a new school or anything?

Hi Tofu, he is choosing his GCSE subjects this year, that's the only thing I can think of. I also wonder if it is hormone related. He hasn't properly really hit puberty yet, but his brother - a year younger - has hit it head on and is nearly taller than him!

He doesn't really get anxious and he's been doing really well at school, got lots of friends etc.

The specialist did comment that ds's migraines seemed to be very resistant to treatment based on all the things he has tried.

His migraine wore off around 5pm tonight and he's back to his usual happy self. This is what happens after each episode and I am then able to relax!

Hi, just thought I would post a quick update.

He had his mri scan today and I will get the results in a few days - more waiting!

They also gave me a cd with his scan pictures on which I wasn't expecting, so I have been looking at them and then comparing them to other images on google, which is probably not a good idea.

The propranalol seems to be working well, so I hope the scan is clear.

Scan came back clear, but it did show previous inflammation of the lining of the sinuses of the face. Specialist said this was quite common, so I won't worry.

Anyway, he is off today with a bad one but they are less frequent, so we are on the right track I suppose.

So relieved the scan was clear.

So glad to hear TrackerBar! I've got experience of this kind of worry with one of my boys and the relief is immense! Anything else can be sorted.

Thank you @Oldmum55

I feel like I can deal with them better now.

We went through very similar with DS.

The relief after a clear mri was huge!

We tried everything.

He ended up doing his GCSEs at home having not been at school since the previous November.

In the end he asked to see a psychologist and his are definitely stress related. He wasn’t recognising that he was stressed. It’s been a long process and although he went back to school after GCSEs the migraines flared up again the following year. He was off from November again. He did go back in the January and was ok. He’s now in Year 13 doing A levels and apart from a couple of short bouts of a few days or a week this year has been ok.

He is not on any medication now but is still seeing the psychologist.

Migraine is so bloody complicated and there can be so many triggers.

DS was convinced he wasn’t stressed or worried and we were convinced it was physical but as the psychologist pointed out the brain is a weird and wonderful thing at times. His thought it was protecting him.

Thank you @Peridot1

The specialist did say he thought it was a combination of migraines and tension headaches. I wonder if hormones and the thought of choosing his GCSE's is partly to blame.

Exhausting though isn't it?!

It certainly is.

One of things with us was that I panicked and tried everything all at once and I also think the GP wasn’t particularly helpful. We ended up finally with a referral to a private paediatric neurologist last year and he did say that some of the meds hadn’t been tried for long enough and at the right dosage.

Just a small point I used to have this malady when younger and i was addicted to Ergotamine Tartrate IIRC! but the underlying cause was highblood pressure!, doc after doc overlooked that! High BP treated no more Migraines:)

Not saying this is the case here but might be worth checking and of use to others!.