Cyclical vomiting syndrome

[thethreegreens]

My poor niece! Every month she’s vomits for days, we think she has cyclic vomiting syndrome, it’s been going on for a while now each month!
usually timed that when I get my period a few days in she vomits so badly for days ! ( illrelevent about my period but that’s how we know its monthly on the dot )
when she’s sick she vomits a lot and this goes on for days, she gets really weak with it too.
has anyone experienced this and can give some advice on how to help her ? What tablets worked etc she’s 17 and really struggles every month, poor kid it’s awful for her!
I’ve put this in AIBU because she’s having an episode now and we are on holiday so want to try and get her better so she can enjoy the holiday! Thanks in advance

Was shocked when you got to the bit about her being 17. I've only associated it with young children. Has she always had it? What medical investigations have been undertaken? Might be irrelevant about your period, but could it be linked to her cycle?

One of my dc had what could only be explained as cyclical vomiting syndrome, but it was when he was a toddler and completely random when it occured, other than he only vomited in the early hours of the morning and by lunchtime he was over it. Probably happened about once a month on average (no set pattern), but he grew out of it some time before end of primary school.

Thank you for your reply, she has period same time as me but that’s the reason how I know it’s each month because it always happens when I’m on, she goes to hospital every month because of it but they usually give her a drip with fluids and anti sickness and then she goes home, last time she was classed as the most critical patient because she sicked so much her potassium levels were too low, I don’t think she’s been “ diagnosed “ as such but that’s what it sounds like, she’s tried the pill and now is on the injection but that’s not helped at all, poor kid it’s awful for her xx

@NorthernJim also no not always had it I would say in the past year it started, defo linked to her cycle as it’s monthly on the dot, did doctors do anything for him? Once she starts being sick it goes on for days and almost every month she ends up in hospital xx

So am I right in thinking she is always sick for a few days coinciding with her own period? Has she been checked for Endometriosis?

I religiously vomit for 2-4 days, and often pass out, in the lead up and first fwmew days of my period. Always have until after I had kids. My mother actually suffered the exact same causing her to drop out of schoo hers also rectified when she had kids.

Yes defo related to her period, she gets so unwell! I did wonder about endo but doctors say it’s not that but haven’t run any tests to see ! Poor kid is really suffering xx

It could be an abdominal migrane which is what I get. I get more around my period but also randomly as well. Its a very similar condition to cyclical vomiting. I take a triptan (mine is zolmitriptan) and it stops it completely. As you know already no other medication works for these types of conditions (antinausea etc). Ive been having them since I turned 18.

We have had a lot of experience with this with DS - pizotifen worked really well to control it as a daily profilactic tablet, but the side effects were pretty tough - tiredness lethargy etc.

DS ended up coming off them and now has a really strong dissolving anti emetic when episodes start.

his seems to be triggered by adrenaline - or rather the crash after an adrenaline spike.

My 18yo niece has CVS but hers is related to stress levels and particularly, a rise in adrenaline.

Your DN sounds more like she's having vomiting bouts related to her periods, which should lead to a different diagnosis via robust investigation. If she's hospitalised monthly, they really should be finding out the root cause and treating her accordingly.

I am very sorry to hear about your niece, CVS is a horrid illness. My DD has CVS. Came on at 14, she's 16 now (diagnosis was confirmed by a consultant at the hospital). She has an anti-emetic - prochlorperazine - but it's not effective at all. The key thing for her is knowing her triggers and trying to avoid them or manage them: anxiety/stress; sleep deprivation; day before and first day of her period; and being out of routine. We successfully kept it at bay for 6 months being so careful with these triggers and using exercises to calm adrenaline given by a somatic coach (breathing exercises, CBT type stuff etc). However during GCSEs it flared up, impossible to avoid the stress and exhaustion really, and she was sick multiple times the morning of each exam. It's much worse in the morning because that's when adrenaline peaks. It was awful but she managed to at least sit each exam She loses a lot of weight during each episode and has exhaustion. However knowing the triggers and the somatic work are helpful to some degree so we'll continue to press into that. Medically, she is on referral for a proper course CBT through CAMHS and i would like to explore betablockers to calm her around 6th form exams.