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!

Yes
Dd has chronic migraine.

Are you seeing gosh headache clinic?

There are various other meds to try

Also he can increase the ppropanolol
It s trial and see what works.

Also dd tried DHE infusion but it didn't help her.

There are also the new CGRP meds coming onstream soon in UK

It s a right pain.
GOSH also does psychological support and annual headache day... so you can see he is not alone.

Make sure school aware and that he has a health care plan.

I don’t know if children can take it but Pizotifen has been the only prophylactic that works for me.

Also - taking painkillers via calpol and calprofen (ie kids medicine) helps as it works much faster

I also (having read it on MN) listen to binaural beats lying on my bed in dark. This is one I often listen to (you need headphones). It’s probably woo but I find it soothing.

[[https://youtu.be/s4JafbX3WQg]{

I really, really hope your DS finds something that helps him. Migraines are utterly miserable things.

Your poor DS. My DS suffered terribly from migraines too when he was a similar age. He had grown out of it, so hopefully your son will too (I think it's often linked to puberty). He had daily medication which seemed to help. I'm trying to remember what it was. I'll post as soon as I can find out.

Just was the post above. It was pizotifen. This was the only thing that worked fo my DS so definitely worth asking your GP.

Yes - this was me when I was growing up. For me (and I realise these things are so individualised so may not be the case for your ds), I eventually figured out a food intolerance (tartrazine) was causing the frequent migraines. When I was 15, I cut tartrazine out and never had a migraine since. After a childhood of solid wall-to-wall migraines!

So there is hope and sometimes it can be something relatively simple to sort out, after years and years of worry. Try a food diary if you haven't and cut out triggers like e-numbers. You never know, you might stumble on the cause.

Good luck and don't give up!

Feverfew is a natural supplement that will definitely help ease them, can buy them from Holland and Barrett’s

Dd2 had that. Turned out to be cluster migraines, so the Propranolol was quite good as she could take it for a few days and it would stop the cluster.

Morning and many thanks for your replies. I forgot to say that he is waking up with them every morning and they don't ease off until late morning. I have googled all these symptoms and scared myself because the early morning migraines point to something sinister! He also feels really sick with them.

He has tried Pizotifen, but it made him really grumpy and his headaches stayed the same. I wonder if the increased propranalol would help. The Zolmitriptan isn't effective when his migraine is in full flow.

The doctor said it could be cluster headaches but she said she is pleased that he will be seeing the specialist on tomorrow.

The food trigger suggestion is interesting. I wonder if cheese might be one? He does eat it every day.

The doctor also said something about pressure on the brain because sometimes his migraine is worse when he lies down, but most of the time it helps to sleep. Is this a common migraine trait?

It's so confusing and scary. Tomorrow can't come soon enough.
I feel like all I think about and talk about is migraines!

His head was really bad this morning, but I have only given him Calpol to see if it can ease off without the zolmitriptan. I also bought some Headache Balm from Herbs on the Hill and he said that it takes the edge off when I rub it into his temples.

Yes dd uses 4head
It helps
Acupuncture is also helping
Triptans don't work for her

Helps to sleep is v much typical of migraine.

If he is taking his Zomig everyday it is probably making things worse and triggering overuse headache. I was given strict instructions never to take a triptan more than twice a week or 6 times a month.

He has been taking it every day, but the doctor didn't advise me not to. I'm not going to give him a spray today in that case. I expect he is getting headaches from using it.

If I could experience what he is experiencing every day I could help him more. I used to get migraines with aura and no pain. My nephew gets them with aura and is unable to speak or walk!

They definitely run in the family.

No-one in my family has them but my consultant told me they are genetic.

Have you ideas about what his triggers are? I have a v long list for mine: fragrance - have banned all fragranced products from house, being hungry, irregular hours - must go to bed at same time every day, blue light - have f.lux app on all screens, being dehydrated, weather - OK can't do anything about that but thunderstorm is guaranteed migraine and so on.

I've found there is a lot I can do in lifestyle terms to prevent them.

I'm not sure as I have been keeping a diary of his migraines, but I haven't kept a note of what he's eaten etc and I really should have.

I'm going to avoid giving him cheese or any dairy today and see if he wakes up tomorrow with such a bad head.

He has mentioned also that he sometimes finds it hard to breathe, especially at night. I wonder if this also triggers them. I have asthma, so it is a possibility that he might have it. Something else to worry and ask the doctor about!

I did email the school and ask about sending work home for him, but they just said get him well enough and then he can think about catching up.

Ask consultant and headache nurse abput school
He isn't going to get well like that as it is likely to be an issue on and off
So.you need a better plan with school ...ongoing plan for.chronic condition
E.g.
Agreement with attendance office
Who to.go.to.if he needs time.out at school
A way to.get class.notes or recorded lessons
Using technology if he can e.g. with blue screen web cam.to.class.from.home etc
Speak.to.lea officer for.children with medical.needs so.they aware and any attendance issue goes.to.them.and not welfare.
Also.if.he off.school.more than 15 days consecutive can access lea tutor etc

Have you had him properly checked and screened by a neurologist? I would be pushing for that if he is so debilitated.

Asthma is definitely worth checking out. Also if you can't sleep at night because of asthma, that will make migraine worse.

My personal experience - didn't pay much attention to taking my preventer but would wake up and cough every night. When I started taking preventer properly not only did my cough stop, my headaches got better.

Not convinced dairy is a trigger really - there are much bigger ones out there. It's not pushed by the big reputable migraine info sites like The Migraine Trust and my consultant (who runs the migraine clinic at the National Hospital for Neurology) was uninterested. Foodwise he was more interested in being hungry as a trigger or alcohol. Hopefully your 13-yr-old does not have alcohol as a trigger

Hi Working - Yes, he's seeing the specialist tomorrow but I have no idea what to expect. I am trying not to google anything now as when I do it makes me feel anxious.

Cestlavie - I will ask about that tomorrow and then try to work something out with school. I have enquired about a private tutor who we are seeing tonight for an initial assessment, but I will also speak to the specialist to see if they think that would be suitable right now.

His migraine keeps going and then coming back at the moment. It also switches sides fairly frequently.

Anna -

I find that I can't drink much anymore as it plays havoc with my breathing! It never used to.

I wish you luck tomorrow that they get some full investigations going, exclude lots of nasties and find you some solutions!!

I will say - discovering I was allergic to cheese and it gave me migraines changed my life. For my mother it was caffeine. It took both of us many years to spot. May your DS have something similar and simple.

I had migraines every day as a teenager for a while. They seemed to be triggered by a lack of fresh air - I'd start one on the crowded school bus for example. However, the real breakthrough came when I cut right back on cheese at 21. I've barely had one since.

Hello,
I have chronic migraine and cluster-headaches. I truly, truly hope your poor son does not have CH.

Migraine can, for some, be complex to treat and present with various types. Mine plays pick and mix from migraine with aura, vestibular migraine and statis migraine. Autumn has always thrown CH into the mix so I get the pain of CH with the throwing up of migraine. Nice.
One horrible thing to watch out for is 'rebound headache' it can happen if your using triptains more than twice a month and the pain can be worse than some migraines making you think you have daily migraine. A diaognosis of chronic migraine tends to only be made after rebound has been ruled out. Depending on where you live an alternative form of schooling at home/ specialist small centre may be possible if attending school becomes impossible due to a severe debilitating headache disorder.

I can recommend OUCH UK's helpline if your son may have CH. If so persue ultra-high flow oxygen [upto 160lpm via a demand valve]. It helps most.

The 3 Cs are the big ones for migrain food triggers - cheese, chocolate and citrus. This was a nightmare with DS2 who is severely autistic. People would say he wanted a biscuit, do they let him have have a little chocolate chip cookie because it's not like there was a lot of chocolate in it. Without fail, he'd be as white as a sheet, a few hours later, hide his head, fall asleep, then wake up vomiting.

It's not all dairy that's the problem. Hard cheeses have high levels of tyramine in them and that tends to be the trigger. Matured foods in general, such as cured meats, also need to be looked out for.

Cold temperatures can also trigger Ds2. I think it's a reaction to breathing very cold air. Annoying because he's a puker and I end up having to observe the 48 hour rule when he's perfectly OK.

Has he had any scans?

Go back to see the GP.
There is something called “medicines overuse headache” . Medicines like zolmitriptan shouldn’t be used every day as they can lead to a chronic daily migraine type headache . It is common to wake with the migraine when this is the cause . Neurologists often recommend no more than 2 tablets per week and 8 tablets per month. Below is a good explanation

www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/medication-overuse-headache/

I ended up in this situation many years ago from taking a triptan (sumatriptan) maybe 4 times a week for a couple of months. To resolve it I had to stop taking them, I had the most horrendous withdrawal migraines for about a week and then they started to settle. I didn’t take anything for about 2 months , my migraines returned to a normal pattern (mainly hormonal) and I have since been v cautious about the number of tablets I take per month.

If this is the cause discuss with your GP before stopping the medication