Cyclic vomiting syndrome

[Canwehaveaminute]

For the past few years, I've had several random episodes of vomiting all day. It's not a bug and always seems to be connected to a period of being exhausted, run down and dehydrated.

It will start off with having a strange feeling in my head; not like a headache as such but an unpleasant feeling. I will get a kind of pins amd needles feeling in my head/scalp and then will just vomit all day long, normally until around tea time. Nobody ever gets it too and it is without the usual cramping and gastrointestinal sensations I experience when I have a virus/food poisoning. I know it's a 'thing' I'm prone to.

I was just googling something else about nausea and came across cyclic vomiting syndrome. This describes what I have!

Does anybody else have this? What has your experience been? Have you had an official diagnosis? What treatment have you had for it?

I had it in my late teens and through my twenties. I'd wake up in the morning with a very particular feeling and would know to get up, be sick for the first time and gather my vom kit - and then would either be sleeping or sick for up to 16 hours.
Mine morphed into classic migraine via optical migraines, so if I miss my aura (an urge to click my neck) and don't take medication I will vomit, but not the same.

My brother had something similar for years, he would wake up with it, they never really got to the bottom of it, they thought it was possibly neurological. But bizarrely, or maybe not bizarrely, it's gone since he got long Covid. I feel like it might have been connected to trauma somehow. It would disappear for months at a time, and then come back and he would have it every day, he had so many tests, but nothing ever came back to explain it.

I’m reading this with interest, as my 15yr old daughter appears to have something similar.

She will wake up not feeling ‘quite right’, but can’t be specific with the symptoms apart from saying her throat doesn’t feel right (not sore, but ? acidy). This is followed by one or two episodes of vomiting that leaves her feeling exhausted. Once, she mentioned having a slight pain in her head the night before, but it came and went quickly, so I wondered if it could possibly be migraine-related. She also has issues with her periods, and I wondered if it could all be related to her hormones being out of whack.

She has had vomiting episodes once a month for three months previously, but can go months and months without any episodes.

I get the throat thing. It's a signal for me to drink water and means I'm dehydrated
It's not a dry throat, it's a specific sensation. It's an early warning sign and so I guzzle the water down as soon as I get it as being dehydrated is a.massive trigger.

The episodes are very like hangovers. I dont drink at allanymorw but used to suffer terribly. I just have to vomit, sleep for 15 minutes, wake up, wrestle with nausea, vomit, sleep for 15 minutes, and repeat, all day.

Each time I get a small sleep I feel incrementally better but it takes a very long time for the vomiting to stop.

Has anyone had an official diagnosis for it? If so, what did it entail?

My brother never had a diagnosis, originally they thought it was some sort of tropical disease, so he had various blood tests, they did an MRI scan of his brain. He went to the Institute for nuclear medicine, I have no idea what they did there! He's had endoscopies. I can't remember what else, but I think it's one of those things that it's a diagnosis by exclusion. One of the possibilities they suggested was that he had had a bug in the past, and it had set up ongoing neurological signals to the brain, a bit like chronic pain when the original cause of the pain has gone but neurons are still firing.

That’s really interesting you should say that (about the dehydration). I will make a note to make sure she is drinking enough.

Yes I have to drink a huge amount of water each day. My body seems to dehydrate very easily. I definitely get more than the recommended 2 litres. I fill my water bottle up all day. I've also got a soda stream which I use to make sparkling g water and that makes d3inking water a real treat

It sounds very similar to a migraine but without the aura and raging headache. Pins and needles and weird feeling in your scalp can also be associated with migraines. I'm similar in that I seem to have to drink alot or I get dehydrated and this triggers migraines for me. I get terrible nausea with mine but one particularly nasty migraine had me throwing up all night. More then I've ever been sick with a bug etc. My ribs and stomach were so sore the next day from the heaving. The following day feels like a hangover I'm very delicate

I'm reading with interest, my son has had these symptoms for years. He is 11 and honestly has thrown up pretty much every 4 weeks since he was about 4yrs. It always starts with a headache and is usually the result of not having drunk enough water. He is actually vomiting right now and seems to have had more of a migraine / sore right eye with it for the last few months. It sounds like it is CVS. My DH has always been so hard on him not drinking enough, but most kids don't drink enough. It just seems that he needs more water than most to stay hydrated.... it all seems to be making sense now, for the first time.

This is me. I get the eye thing too. I always call it 'the hook' as it feels like there's a hook in my eye. It's often connected to dehydration and often comes with the vomiting. The symptoms all start in my head, whether head, throat, eye...and the vomiting comes after. Its not that it's so painful I vomit, in fact it's often very dull. It just all seems to originate there.