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Cyclitic vomiting syndrome?

9 replies

Donnachick56 · 19/01/2026 22:40

Hey so I'm hoping someone is on here that has experienced this with there child.... so my daughter since she was 2 shes now 5 has been having these 48 hour episodes of waking up screaming, feeling dizzy unable to open her eyes because she's scared and dont want the room to spin. She gets very nauseous and violently sick. We are awake least up to 48 hours because everytime she trys to sleep shes dizzy. Thwre like severe episodes of migraines. Was happening early hours in morning every 8 weeks...now its about 4.30 in morning and happens every 12 weeks. Comes on randomly every 12 weeks then disappears after 48 hours. Shes had MRI,EEG, SLEEP EEG and all come back fine.her neurologist said its down to having autism (hadn't been diagnosed at the time) a behavioural thing?? I kept fighting with emails saying it wasn't right, something else needs to be done its nothing to do with autism!!! in the end we saw a neurologist from GOSH. Straight away after showing him videos he said its Cyclitic vomiting syndrome? And has put her on meds...its eased her episodes so shes not screaming and crying and shes not sick...but she still had the episodes. I have googled and red forums on this syndrome and it seems to be just all about vomiting and diarrohea has her neurologist got it wrong?

OP posts:
Paperwhite209 · 19/01/2026 22:44

I'm no expert but work in student welfare and have dealt with autistic kids and one or two with cyclical vomiting.

What I'm wondering is if it's CVS but the sensory overload caused by the dizziness and nausea is causing an extreme reaction due to her autism?

Has she been formally diagnosed with ASC now?

Paperwhite209 · 19/01/2026 22:45

Is she talking about headaches or are you just mentioning migraines because of the not being able to open her eyes etc?

Donnachick56 · 20/01/2026 06:16

Paperwhite209 · 19/01/2026 22:45

Is she talking about headaches or are you just mentioning migraines because of the not being able to open her eyes etc?

No she holds her forehead and screams it hurts. And she makes me carry her to the toilet because she can't open her eyes... she makes me turn the lights off.

OP posts:
Donnachick56 · 20/01/2026 06:17

Paperwhite209 · 19/01/2026 22:44

I'm no expert but work in student welfare and have dealt with autistic kids and one or two with cyclical vomiting.

What I'm wondering is if it's CVS but the sensory overload caused by the dizziness and nausea is causing an extreme reaction due to her autism?

Has she been formally diagnosed with ASC now?

Yes she has been diagnosed with autism now.

OP posts:
HarvestMouseandGoldenCups · 20/01/2026 10:10

Donnachick56 · 20/01/2026 06:16

No she holds her forehead and screams it hurts. And she makes me carry her to the toilet because she can't open her eyes... she makes me turn the lights off.

Autism Light Sensitivity is a thing so it could be as a PP said that she has CVS but her autism is making her react to the symptoms more powerfully and in mixed sensory ways.

HarvestMouseandGoldenCups · 20/01/2026 10:11

I assume she’s been checked for things like GERD or vestibular migraines etc

Donnachick56 · 20/01/2026 10:14

HarvestMouseandGoldenCups · 20/01/2026 10:10

Autism Light Sensitivity is a thing so it could be as a PP said that she has CVS but her autism is making her react to the symptoms more powerfully and in mixed sensory ways.

But why is it only every 12 weeks dead on? I dont understand.

OP posts:
HarvestMouseandGoldenCups · 20/01/2026 10:19

Donnachick56 · 20/01/2026 10:14

But why is it only every 12 weeks dead on? I dont understand.

Because that’s her personal pattern, likely caused by a trigger be that hormonal, dietary, sleep, inflammation of the gut, stress etc.

Cyclic means it comes in a cyclical pattern - hers is 12 weeks.

PastaPasta23 · 20/01/2026 11:15

We have something similar with our son, who's just turned 4. He's not been formally diagnosed, but from what we've read, we're pretty confident it's CVS.

Though his isn't as severe and he doesn't seem to have headaches alongside.

His is usually, he goes very subdued and quiet in the hours/day leading up to it. Then he'll projectile vomit, and not being himself for a day or so, then he's fine again until the next episode.

He hasn't been diagnosed with autism and there doesn't seem to be any indications at this stage that he is autistic.

According to MIL, my husband had something similar when he was young and he seems to have grown out of it.

It's horrible to see them suffer 😞

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