Cyclical vomiting syndrome

[Scorpio8]

Does anyone suffer from this and how do they manage it?

Hi, I have had CVS since I was 11/12 years old; I’m 30 next month.

at first I had to go through a process of elimination to find out what was wrong.. so bloods, barium meals, x rays, CT and MRI scans, Urine tests and SIBO tests.. all come back normal except the barium meal which showed up Gastroparesis.

I had episodes lasting 5 days, very rarely less and at worst (which seemed like a lot of the time) it would reoccur every 4 days so safe to say I missed pretty much all of secondary school, couldn’t manage college and couldn’t do anything from that point on! I spent most my life admitted to hospital and didn’t really respond to anything treatment wise.

I was put on Periactin first as a child with Ondansetron.. they didn’t help
I was then put on Phenergan which I continued to stay on until a few years ago as it’s also a antihistamine and anti emetic (it didn’t stop me being sick but kept my mind feeling safe in knowing I still had something to keep me balanced).
Then I was put on Amitriptyline and this helped me as a child but when I was a adult and trying it again it didn’t help.
I tried Domperidone, Fenofexadine, Propranolol, Topamax, Nortriptyline… I mean you name it I have tried it!

acid was always a issue also so I had Ranitadine, Lansoprazole, Esomeprazole, Omeprazole, Tums, Gaviscon… again you name it I have tried it!

what I did find help was IV fluids as I was always dehydrated… Cyclizine IV helped in the beginning (but would give me hallucinations) and I later had it as tablets but didn’t like taking them, Lorazipam to put you to sleep and reset the brain but they will only give that in hospital, Diazipam (I have rectal solution currently if needed) anything that induces sleep is helpful to reset the brain even if you have to stay asleep the whole episode.

weed is the one thing that DID get rid of my nausea and help me sleep so I was smoking for the past 10 years for relief.

for the past year I have not had a single episode, every time I felt the beginning of nausea I would take Diazipam and it would break my episode. I decided I would come off all medication for the first time in the whole of my sick life! I stopped antacids because I kept getting so many issues getting them in the first place. I felt my Phenergan and Nortriptyline was making me sick so stopped them also. This year I decided to stop smoking also as I wanted to start diving and knew it wouldn’t help… since all those things I have been able to increase my calorie intake which has eliminated my acid and I have been able to gain weight.

I don’t feel nauseous anymore and when I do I can take some Diazipam to put myself asleep and it always stops anything progressing.

Now my issue is all my other diagnoses. Since I stopped my antihistamines and weed I am having a lot of allergies plague me. I am having lots of joint issues and heart issues also.. all these things are connected to my illnesses that are linked to CVS but thankfully not CVS.

sorry this got long but there is a long history I have with this illness.. feel free to message me if needed.

My friend had it for years and tried everything - weirdly hypnosis cured it!

@Tropicaliyes

My friend just found out she got this but she told she always been ill. She can't cope with summer. Heat makes her I'll.

So was asking I was curious about this condition sounds awful.

@Scorpio8 hey, it’s really nice to hear you are trying to get an understanding of your friends illness.. growing up I lost pretty much all of my friends because of this illness and a lot of my time being spent in hospital so it was easy for them to just let me go as a friend instead of trying to check in on me and trying to bare with me let alone even doing some research into what I had so I really applaud your dedication to your friend 😊.

Heat was also one of my triggers when I was in my mid teens.. summer was horrible and I found myself inside a lot as the heat would trigger nausea and the nausea would trigger the vomiting😤. Rehydration solutions help a lot but I would stay away from things like Powerade and Gatorade as there is so much sugar that isn’t needed! Now you can get pedilyte (sp?) from America which is really helpful. Dioralyte is okay also if your friend can manage them but I never liked the taste. Warm showers (as warm as can be managed) can help the nausea also and mints or ginger if that taste can be managed (I always hated ginger!)

how old is your friend now and when did they become sick?

the best case scenario is that she got sick as a child and will outgrow it as she gets older but then being a female means her periods can be another trigger, hormonal spikes and everything around periods can also be a issue (in that case many use the pill to help but that made me sick also).

ask her if she has heard of the mito cocktail which is CoQ10, L-Carnitine and B complex vitamins.. it has helped a lot that suffer also.

Also @Unwavering721 many have used Hypnosis as a coping mechanism or even as treatment and it doesn’t cure it per say as there is no known cure as of yet, however it has helped some manage their symptoms better and a lot of the time it can help them manage and so far outgrowing it or it transitioning into something else is the only way of it going.. many people don’t notice it has transitioned as CVS can seem so extreme in comparison to whatever they get afterwards but nonetheless not having episodes is always great and I’m so glad for your friend!

I have found people doubt this and see it as attention seeking/choice.

My son has it, there is no choice, he has learnt to live with it but the questioning he gets from friends is exhausting.

DS1 had Cyclical vomiting syndrome. We were told it often turns into migraine and in his case it did.

When he was first diagnosed, aged 7, I thought they were fobbing me off, however when I read up on it everything just fit. He’d vomit up to 30 times a day for a week. DH and I begged and begged for tests but were declined. The hospital, he was always admitted because he’d vomit blood, labelled me as a neurotic mother.

We ended up moving about 300 miles and he was admitted twice in 6 weeks. The local hospital referred him to a more specialist hospital where we saw a paediatric gastroenterologist. He arranged an urgent endoscopy which showed DS1 had two ulcers. He treated those but after more hospital admissions he diagnosed Cyclical Vomiting Syndrome.

DS1 was prescribed Pitzotifen and Ondansetron. Once he hit his teens he’d get migraines however he’d be really, really sick with them. He doesn’t really drink because if he has one too many he vomits copious amounts. Whether that’s linked or not I don’t know.