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Teen DS prescribed Pizotifen for migraine - I'm a bit concerned

(32 Posts)
CiderwithBuda Mon 09-May-16 16:46:02

DS is 14 and has been getting migraines on and off for a few years. Really thought he was growing out of them as he hadn't had one for months but he has had 4 since last Wednesday.

He is missing a lot of school and obv that is not ideal with GCSEs next year. In fact he has one GCSE next week.

So took him to GP earlier and she prescribed Pixotifen. Having now researched it I am a bit concerned about side effects. He is tall and currently skinny but doesn't eat particularly well so I know if he does have increased appetite he will eat more rubbish as much as I might want him to eat healthy stuff! I'm also concerned about tiredness and brain fog which can also be a side effect.

Not sure whether to let him start the Pixotifen or not.

Badders123 Mon 09-May-16 16:57:41

Ds2 has been on it for months,
No issues and he is 7

NotQuiteJustYet Mon 09-May-16 17:01:01

I can only speak from my personal experience of this medication and what I have found out from researching it online.

Personally, I didn't get on with it at all and at my worst I was sleeping 14 hours a day but even when I was awake I was exhausted, mentally and physically. I was quickly taken back off it after only a month, and in that month I'd gained the best part of a stone - despite not actually eating anymore, due to mainly being asleep.

From what I've found out online since, this medication is marketed under another name (the name escapes me) to third world countries to help boost weight in those who are underweight, and it's effective - I can tell why!

I was moved onto Topiramate instead which comes with it's own very scary list of side effects but honestly for me it has been wonderful. I've been on it for almost 6 months now and my migraines have all but vanished, whereas before I was having roughly 4 days of migraine pain a week.

I get some side effects including numbness in my hands and feet which comes and goes, and sometimes I'll forget a word when I go to use it but I'm quick enough to be able to substitute another in it's place.

TheFairyCaravan Mon 09-May-16 17:09:12

DS1 was on it for a few years, it was fine.

I suffer terribly from migraines, take all sorts of preventatives and have had Botox 4 or 5 times. I've recently stared having acupuncture and that's reduced the frequency of them immensely.

flissfloss65 Mon 09-May-16 19:32:03

My 15 year old DS was prescribed this by his consultant for migraines. He only took it for three weeks as he found the side effects too bad. He was in bed by 7pm until 8 am and felt spaced out and drained of any enthusiasm.

He has since started having acupuncture with our local gp. Seems to have really lessened his migraines and general headaches.

He had a review last week with hospital consultant and he mentioned he had seen weight gain in patients.

For my DS the effects were too great compared to the migraines themselves.

My DS has gcses this year and it is a worry.

StickTheDMWhereTheSunDontShine Mon 09-May-16 19:37:24

You need to weight up the possible side effects against what it's treating. In this situation, if this was my DC, I'd be prepared to give it a try in full knowledge that if the benefits don't outweigh the drawbacks, it's possible to stop.

CiderwithBuda Mon 09-May-16 23:11:01

Thanks for all replies. We have decided not to give it at the moment.

He had about six months at least of no migraines so this recent bout of 4 in a week is strange. So a preventative which he is on permanently seems a bid extreme. His previous triggers have been dehydration, eating sugary crap before bed and sleeping late. We think he is dehydrated currently due to warmer weather and cricket season so outdoors more.

We have had a chat wth him and current plan is for him to drink more water during th school day and also to eat protein before bed rather than sugary stuff or crisps.

Also will give him magnesium as I know that a lack of magnesium can be a cause.

Might also take him to my chiropractor or an osteopath as I know that made a big difference to me at one point.

CiderwithBuda Tue 10-May-16 08:38:35

Another migraine this morning.

He is missing so much school.

Badders123 Tue 10-May-16 09:50:58

Just give him the bloody meds!
Fgs.

StickTheDMWhereTheSunDontShine Tue 10-May-16 09:52:09

Try the meds.

Things can only be better.

cowmop Tue 10-May-16 09:55:52

Does he take a triptan type drug at onset?

feetheart Tue 10-May-16 10:05:18

DS (Y1 at the time so about 6) was prescribed this and it was like a miracle cure - he went from a constant underlying headache with clusters of migraines every few weeks and lots of missed school to nothing in the space of about a week. He stayed on it for just over 18mths and has been migraine-free ever since (he is now 10) though is prone to headaches if he is tired, stressed or generally under the weather.
He was as thin as a rake so there was no concern about weight gain smile

I was very concerned about him being on medication so young but it enabled him to get back to being the really active, carefree little boy who goes at everything 100%.
My advice would be to try it, he can always stop taking it it if makes him feel worse.

Lalaloopsyscaresme Tue 10-May-16 10:11:09

OP do you suffer from migraines? If not then you can't imagine how horrendous they are and if you do then why would you not give your son a drug that would help. Pizotofen has literally changed my life. My triggers are sunlight, dehydration and tiredness. I take a pizotofen before bed so that combats any drowsiness I may have and I have not noticed an increased appetite.
Im not saying this to guilt you into it, he's your child, but if my son suffered the way I do I'd try anything to alleviate that.

CiderwithBuda Tue 10-May-16 11:13:10

I did suffer from migraines yes so I do understand what they are like. I started getting them as I went into puberty which is when DS started. My sisters all get them and my mum did too.

One of the reasons I am not keen on giving the Pizotifen is that until this week he hadn't had a migraine for five months. I would like to try giving him something that he would take IF he gets one rather than be on something every day if he doesn't need to be. Especially with the potential side effects of the Pizotifen.

Obv we WOULD give the Pitozifen if we had to but I don't feel it is the right call just now.

I had a cluster of migraines a few years ago over the course of a week having not had one for years. I ended up going to a chiropractor and that sorted them out. I have made an appointment for DS with a Chiro this afternoon.

We also have another GP appointment later in the afternoon to ask about something to take at the onset.

NotQuiteJustYet Tue 10-May-16 11:14:35

Given the frequency of the migraines I would say to try him on it, he's going to be miserable without relief and if it works, excellent! If it doesn't work, he can come off it and try something else.

The experience I had on this drug is evidently not a universal experience as others have said they'd had no bother with it whatsoever. Cluster migraines are absolutely awful to go through so anything is better than nothing.

CiderwithBuda Tue 10-May-16 12:04:41

NotQuite - your experience is not unique though - I've read up a bit and others have said the same. DS has end of year exams week after next and a GCSE next week - really worried that he would be exhausted and how that would affect everything at school.

The doctor we saw yesterday is one I am not overly keen on so we have an appointment with another doctor later. I will talk to him and see what he says. We also have chiropractor appointment.

Lalaloopsy - I am glad it works for you and hopefully if we do give it to DS he will be fine too. Just want to be sure as it is such a critical time school wise.

Feet heart - really interesting that your DS's migraines appear to have stopped completely after the medication. That's great.

Cowmop - no - not at the moment.

Flissfloss - your DS's reaction is exactly my worry. Glad the acupuncture is helping. DS is needle phobic so I'm not sure how that would go down! I've had it in the past and still have it for back issues. Really rate it.

I am encouraged that some people have good experiences on it. We will see where we end up this afternoon.

NotQuiteJustYet Tue 10-May-16 12:15:04

I can understand your reticent as DS has a GCSE coming up, it's really not an ideal time to be starting a new preventative medication that needs time be titrated up and to get to work.

Does he have a triptan prescribed to take at the start of an attack?

cowmop Tue 10-May-16 12:41:31

I think with it being so close to exams I'd try to get him a triptan in spray form to use at onset. Then look at long term treatment afterwards as he'd still be building the dosage up at exam time if he starts now. It's a bit of a double edged sword though either way.

I took a beta blocker for years from my teens as a preventative which worked 95% of the time, but they recently stopped working so I now use Topiramate. Which is effective, but I'm dropping pounds at quite a rate.

I hope he gets sorted soon, they really are the most miserable things.

CiderwithBuda Tue 10-May-16 12:56:52

He has never been prescribed a triptan. Which is what I will be asking about at GP this afternoon.

flissfloss65 Tue 10-May-16 13:39:07

Regarding GCSE exams, have you let the school exam officer know he suffers from migraines. My DS is being given a seat in the darker section of exam hall and has permission to take painkillers in with him. If he has a migraine beforehand I have to take him in time for the exam and they will keep him in isolation until he feels up to sitting it. Fingers crossed all goes ok.

Witchend Tue 10-May-16 14:22:23

DD2 had that for migraines starting just before she was 10yo. She spent the first weeks in a fog and I seriously thought I wold have to stop it. But then she seemed to adapt then after that be fine. It took about 3-4 weeks to adapt.
What she does do is not take them all the time now. She gets cluster migraines, so she starts taking them if she has a migraine and takes them for about a week. That seems to be enough to stop the clustering. She is fine now when she goes on them

wfrances Tue 10-May-16 14:41:23

ds 12 has been on topiramate for 17 months with no side effects.
most meds are trial and error .

CiderwithBuda Tue 10-May-16 15:10:08

Flissfloss - no I haven't been in touch with the exam officer. That's great advice and I wouldn't have thought of it. Thank you for that advice. Will get in touch this afternoon.

Just back from chiropractor. His trapezius muscles were very tight particularly on one side and going up under his ear which can definitely lead to headaches. He also wondered if DS might have injured his neck playing rugby. He has loosened the neck muscles through massage. Hopefully that might help a bit.

Off to GP again later.

CiderwithBuda Tue 10-May-16 21:46:20

Went to GP and saw a different doc in the practice. He assured me that Pizotifen is generally well tolerated but understood my concerns regarding exams next week.

We now have a supply of Sumatritpan and beta blockers. For the next few days we are going with the Sumatritpan if he gets a migraine and we will see how that goes. Will start the beta blockers if the Sumatritpan isn't working. Have been warned that th beta blockers may make him a bit tired but nt as bad as th Pizotifen might.

cowmop Wed 11-May-16 08:33:39

Hopefully the chiro will have helped and he might have a break from them. I find the triptans (I take Naramig) really effective as long as you take them as soon as possible. I have one in my purse, one in the car, mum has one, dh has one...that and something calorific tends to stave the worst of mine off, but I know everyone is different.

I got on really well with the beta blockers, but my sister who suffers with migraine wouldn't even consider them as she cycles and said they'd affect her performance and she'd have to report them. Personally, being horizontal 5/7 days some weeks affects me more.

Good luck with his new medication and exams, I'm glad you found a more approachable GP.

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