migraine meds for children

[lollypop42]

can someone please help with advice about the migraine medicine Pizotifen. My grandson aged 11 has been getting migraines for about nine months. When they come on they are very severe and he says the headache never really goes, it just dulls down until the next big flare up. He’s had every test under the sun but they think it started with a virus. He is not stressed, he loves school and plays plenty of sport.

Has anyone got any of experience of this drug and how their child tolerated it please. We are wary of giving him
any drug long term and always feel like we should second guess the ‘experts’ Please know that i am not an interfering nan, my daughter knows i’m asking. Any thoughts gratefully received. thanks

Hi @lollypop42 - have you considered seeing a kinesiologist? They are life changers and so very underappreciated

Migraines are awful. You need to try the medication.

i have no experience with that particular drug. I did just look it up and see it is a preventative. If they are putting him on a daily preventative, the situation is serious.

He should take the drug, plus follow the holistic advice given by the doctor. Typically this will include things like good sleep hygiene and water consumption, but it varies with symptoms.

Has he also been given a rescue med? If not, I would push for one. He shouldn’t have to suffer.

I think kinesiologists are underappreciated because they are snake oil.

So disappointing to see migraine again written off as something you can get rid of with some massage.

OP migraine is a serious neurological condition that causes major misery (and not just because people think it's 'just' a headache). It's also lifelong although he will probably have times when it is worse and times when he barely has any.

I don't have personal experience of pizotifen as I started my migraine as an adult but I do know it's used a lot for children.

Rather than thinking of the drugs, would it help to imagine what his life will be like with untreated migraine - being in pain a lot of the time, overwhelming emotions with the pain, not doing as well at school, not being able to enjoy normal things growing up like having a late night, having a drink - OK, that one's a bit far off at 11 but you get the picture.

But migraine is seriously debilitating. In my whole experience of taking migraine meds none have been worse than the awfulness of a migraine.

My 8 year old son takes Pizotifen. His migraines were horrendous, they always followed a pattern where he’d be writhing and crying in pain, it was distressing for us to see so god knows what it felt like for him, then he’d be sick and then sleep for hours. My husband took him to A&E once we were so concerned with the pain he was in.

He takes two tablets a day, one in the morning and one at night and he literally hasn’t had another migraine since he’s been taking them, which is about 8 months now. He gets the odd headache but it usually goes on its own or with a dose of nurofen. There haven’t been any side effects that we’ve noticed.

@freyerthank you, it’s something to think about

@ponderingwindowthank you for responding helpfully. may is ask what a rescue med is please

@AnnaMagnanithank you. Your idea of looking at the situation of not taking the drugs is interesting and makes perfect sense. Myself and my daughter have suffered from migraines so understand the pain which is why we are so worried. Him taking a drug every day was a concern, especially when you read the possible side effects, but it’s the same with every drug leaflet i guess. The comments here have been very useful and i’m so grateful

My son got these at the same age and used to cry with pain, be very sick then sleep it off. Luckily he outgrew them by about the age of 11. One thing we realised though was he was being a normal 8 year old rushing around, bike football etc and only realised one was coming on when it hit him full pelt. By which time it was too late for the medication to have any effect. Gradually we got him to recognise the early warning signs and taking the medication before it hit like a sledgehammer helped enormously.

@Loops1987 Thank you, this is what i was hoping to hear. I’m so pleased it’s worked for your boy and hope it continues 🙏 do the docs have to monitor him at all? i read online that the liver has to be tested. perhaps this was for adults on a larger dose, or just rubbish info.

@lollypop42theres been no mention of testing his liver but he has had a couple check ins with the paediatrician to see if he was still getting headaches (he had a couple of more severe headaches when he was only taking one tablet so they upped it and 🤞 it’s doing the job perfectly. I’ll perhaps mention it when we next have an appointment though to make sure! For now, it’s just a relief that he’s not suffering.

@Ahwig Thankyou, what medication did your son take please

Hi @lollypop42 has your daughter looked at the Migraine Trust? They have loads of excellent information about living with and managing migraine. I just looked at their website and it looks as if they are currently featuring support for children and young people

https://migrainetrust.org/

@Loops1987👌🙏

Unfortunately migraine is hereditary. It's supposed to have a genetic cause in up to 60% of sufferers.
Nobody in my family is owning up to having it so clearly I broke the mold.

First question my neurologist asked - did you get seasick or carsick as a child? Yes dramatically.
Apparently it's linked to that as well.

I second The Migraine Trust and they have lots of information about children and migraine.

I'm obviously not in the same age group but I have been on pizotifen twice a day for at least 20 years. It really has made a huge difference as my migraines (with aura) got suddenly much worse and very frequent. The dosage has varied as sometimes things seemed to be much better, other times not. It took a month or so to really see the difference and to adjust but it was a game changer for me.

I still get the odd attack but pizotifen doesn't claim to stop them all.
One of the side effects can be an increased appetite, and this did happen, but you do adjust. Besides, I reckoned that was a small price to pay to be without such a debilitating condition.
I can't take triptans due to another health condition, though they are not preventatives.
If he's been recommended to take pizotifen, I'd honestly try it. I was very sceptical but it worked (works) for me.
Migraine is the pits.

@AnnaMagnani I didn't know that about car sickness/ seasickness. I used to get very car sick as a child and still can't read etc in a car.
My migraine is definitely hereditary. My grandma, mum, me, and I've passed it on to my two (now adult) sons unfortunately. All with aura. Fingers crossed they both don't seem too bad so far.

@AnnaMagnani she has, and it will probably be very useful but my first thought was to try and get some first hand experience of children that had taken the drug and MN delivered as usual. I’m very grateful that people take time to respond and help

In terms of weight gain - one of the major triggers for migraine is being hungry. And then in the pre-headache phase the cravings kick in.

I munched my way to obesity unconsciously trying to stave off migraines and then going carbs crazy when one was on the way.

My now 16 year old started pizotofen when he was 12. Did an excellent job of stopping his migraines. He got the odd one every couple of months but a huge improvement. He stopped taking it at the beginning of this academic year as a trial and they seem to have gone. We were told they may be hormonal and it seems, fingers crossed, that they were. He did notice, in retrospect, that the pizotofen made him a little spaced out but it wasn't at all obvious at the time.

Poor lad. Migraines are the worst! My friend's son started taking pizotifen when he was about 10. It helped him tremendously and he had no real side effects. He came off it after a few years but is back on it now because his migraines came back due to stress at uni. I tried it years ago and didn't have the same luck with it, but he found it a godsend.

@softlyfallsthesnow Thank you. Mine and my daughter’s migraine were largely hormonal and/or stress. Mine have all but stopped now after my change and change of lifestyle but i can at least take triptans which help enormously. My poor daughter can’t take trip tans and has never been offered anything else. But back to my 11 year old! all these comments have helped enormously and i don’t feel so bad about him taking rhem
now

@Suhbataar thank you for another positive helpful review, I hope your son continues to be free of them

@spiderlightthankyou, that’s very useful information. I hope your friend can come
off them again and they have gone completely in the future

My 11 year old has been taking it for about 4 months while also getting MRI and will be seeing a neurologist next month.
They said they would give propranolol if it wasn't for her asthma.
Her migraines have stopped. She has been quite moody but as an 11 year old this may be unrelated to meds.

Sorry I can’t remember as he’s 30 now but it was strongish over the counter stuff as I talked to the pharmacist, and went with his suggestion.