I'm 16 and have CVS, it's so nice to see someone else advocating for it as well! My episodes are generally around the 10 day mark and always require hospitalisation. Sending lot's of love and good health days!! xx
l have the same thing since 4 years But in the last period I got sick every two weeks and for 10 days I vomited within 24 hours even during the night so I don't sleep these 10 days .. I get very tired 😢 What should I do? Search the internet in English 
Georgina, my Dad's friend suffered from this from most of his life. He did not know what it was until the last few years of his life. I know it can be very rough dealing with that nausea and everything. I hope you can continue to find some relief. Hoping all the best for you
I've had CVS for 4 years now, used to get a cycle every 3 or 4 months for 3-5 days at a time. Now it's hitting a little harder, almost once a month these days. One of the great things I found to mitigate the pain was jumping in a hot bath. The pain relief only seems to last as long as the bath for me but it's saved me a lot of suffering. Thanks for sharing your journey, it's good to know I'm not alone.
Sorry to hear that it's getting worse, it really is horrible to deal with. I can't really move when I have episodes, but maybe someone else will see this tip and it will help them :) Nothing beats a nice hot bath just after an episode though :)
@@gdiab05 for me there's sometimes a window before I get sick in the morning (or sometimes after a series of getting sick /retching) when a hot bath seems to help pause or slow the cycle temporarily. I'm not sure if this reaction is well-documented, but it has often helped me find a moment of rest during the suffering.
I experience the same exact thing about every month I was hospitalized twice this year for a week at a time each , baths are the only thing that help take some of the unbearable pain away.
It's great that you are trying to tell people about CVS, i kept vomiting for more the 14 years and no one knew what's wrong with me, last year because of videos on youtube like yours i got to know why i'm vomiting every morning and i started taking amitriptyline which has changed my life
@@GeorginasJourney stay away from amil...its great for short term relief but can really mess up ur heart for life almost killed me. If ur considering YOU NEED A CARDIAC ASSESSMENT TEST it may god forbid harm you. Look into cyproheptadine peractin 4mg...its children's antihistamine and works great for prophalic(everyday treatment) and change your diet...look at what causes migraines that will help..God bless
@@GeorginasJourney amiltrypline...it almost killed me...so dangerous...docs hand it out to us with no cardiac assessment test....very dangerous especially with a CVS patient
@@gjstein5418 it’s generally only dangerous if you’ve got a pre-existing heart condition and most doctors know that and won’t prescribe it in those instances. I know lots of people who have been on it for years with no problems. I’m sorry you had a bad experience with it, but that’s not the case for everyone. Also, I didn’t mention that medication at all in my video, so your other rude & offensive comment you left on my channel was completely uncalled for.
Just learning about CVS and pretty sure I have it. At 63 years old, suffering since 8 years old. Maybe only two or three a year. Once a month, with my periods, as I got older. Very sporadic in my twenties and thirties, maybe with childbearing. Then, in came on again in my forties, once every week or two, with a few stretches of up to a few months. I always thought I had something normal and wondered why nobody else complained about feeling so miserable with their periods. It just occurred to me, very recently, that most people with migraines don't throw up all day long. So, I started searching and found CVS.
Hi! Some people do throw up from their migraines and periods, so if it always coincides with that, it’s probably not CVS, but if you also get episodes for seemingly no reason (& stomach bugs and food poisoning has been ruled out), then it could be CVS. Hope this helps and I’m so sorry you’ve battled through these health struggles for so long, no matter the cause, I can tell you’ve been through a lot with this 💗
I have had unexplained vomiting episodes since I was 15. I am 24 now and still struggling with it, however, I have not been diagnosed with anything. My symptoms are very similar to the symptoms of CVS. I will definitely make an appointment with a specialist to finally get a diagnosis. Thank you for sharing your experience. It makes me feel less alone :)
You’re welcome, I hope it goes well! Gastroparesis is another condition it may be worth looking into- especially if your episodes are more constant than episodic!
i got diagnosed a little over a year ago with CVS. thank you for sharing your experience it’s been extremely helpful for me!! i hope you are doing good❤️
I also have constant severe nausea from MCAS & vomit from that multiple times a week, but this is separate to the cyclical vomiting. This video doesn’t go into detail on that as it’s separate, but I’ve dealt with that since 2014 also.
I know what you mean about not being able to move its so bad. But cramping was my biggest pain, but nausea, vomiting and diarrhea were always accompanying it. I thankfully am in one of those dormant stages you talked about and only sometimes have episodes. I went a whole year with it happening every week three to five times
TG PR it’s so hard to explain how bad it is if you’ve never experienced it, isn’t it! I don’t always have bad cramping, but I do sometimes! And I’m so happy for you that you’re currently having a good period with it!
As someone who suffers strongly with Emetophobia - Fear of Vomiting this must be horrific! I think Nausea can also be just as bad. Your such a strong & amazing girl, hope things will get better for you ❤️☺️
Thank you. I also suffer from severe emetophobia (I have a video about how severe it got for me on my channel, if you search ‘Georgina’s Journey Emetophobia’ on TH-cam, I’m sure it’ll come up. For example, atm I sleep with earplugs every night in case any of my housemates get sick in the night (they usually don’t, but that’s just one of the things that emetophobia makes me scared of and what it makes me do)
@@GeorginasJourney aw it's awful & yet I actually never knew it was that common tbh. I think my phobia all comes down to germs/bacteria which is why I wash my hands constantly, I start to freak out if there's a bug going around which is the worst! Yes I will check out more of your videos I think they really do help a lot, your an inspiration ❤️
@@GeorginasJourney I think it all comes down to Nausea as vomiting is bad enough I think the feeling itself can be just as bad but I'm sure people will say the opposite
@@markjonno91 mine is mostly a fear of the vomiting bug as well, which I talk about in that video I said about. & emetophobia isn’t that common, I just got severely ill from a sickness bug due to my underlying heath conditions a few years ago (I ended up in Resus in hospital from it), so that’s why I have the phobia
@@markjonno91 and yes, the nausea is the worst part for the vast majority of people. The relief of actually being sick and the fact it only lasts a second or two is not that bad, and most people know that
Ondansetron is also called Zofran in the US and can be given in the gums as well. Prochlorperazine is super hard to get in the US. I had to beg my doctor but she doesn’t understand cvs. I’m so frustrated. Thank you for relating
My best friend is actually from the US so we’ve spoken about this a lot- while zofran is SO hard to get here, she told me she can get zofran without any problems, but prochlorperazine is almost impossible to come across. Here, it’s a financial thing as zofran is expensive & since we pay a standard rate for every prescription (no matter what it is) our health service just can’t afford to give it to many people. It has made me wonder why prochlorperazine is so hard to get there since it’s so much cheaper than zofran
Hello! I just found your page and I’ll be posting videos of my journeys as well. I have CVS like you. I was misdiagnosed with the Stomach flu often. Because I only got sick in the mornings at the time as a 11 year old they gave me pregnancy test every time and had those “talks” with the doctor. Then years later when I was 16 I was diagnosed with CVS. 18 years old with Gastroparesis. Now my doctors are thinking I have Raynaud’s And Fibromyalgia. I know what it’s like to be always the sick girl growing up and never feeling well. It’s a battle. It’s a struggle. Even when we feel weak, we are strong. If you ever want to talk about CVS or anything other GI problems. I am mostly in remission with my CVS now at 22 years old. I still have my moments but when I got older my CVS started to trigger around my period cycle or just randomly. Feel free to reach out. Chronic illness gals need to stick together ❤️
Oh my god you only got sick in the morning for a period too? I’m going through that right now, and it sucks, because as a 14 year old doctors are always trying to tell me I’m pregnant or something. Even though it monumentally sucks, I’m at least glad I’m not crazy in my experiences :))
Rainy Days I had that happen too and also had lots of people try to tell me I could be pregnant! For some people it can just get better over time, so I hope you can find something that helps or that it goes away for you in time 💕
I know what your going through it’s the worst pain in the world, it Took me 10 years to understand it was cyclic vomiting syndrome, I have been a long time weed smoker and since I’ve stopped my attacks have been a lot less like 3-5 hours and I haven’t been to hospital for treatment. I’ve been in your situation with the iv drip in hospital where they couldn’t get it in for over an hour due to my vomiting. Hopefully your getting better, thanks for the video I thought I was alone. I’ve nearly died from this and it’s so scary. 🙏🏼
Hope you continue to get better! It is possible that weed caused it for you, as there’s something called cannabinoid hyperemesis syndrome that could have caused it from the weed! And that might explain why things have got a little better now! For me, it’s thought to be caused by my genetic condition, but there are so many causes so it can be difficult to know! And that’s the worst when they can’t even get the IV in, isn’t it! Sorry you’ve been through that too!
I'm 16 and I've been having episodes for about, 10 years now. My CVS is very different. it differs from year to year, but some years I have episodes about once every month, or only once or twice a year. my episodes typically last for about 2-5 days, vomiting from every 15 minutes to every hour. but it's super interesting that the general symptoms are the same for all of us, but the way it shows itself is so different. Also because my recovery time takes about 1-2 weeks of not being able to eat correctly. I wanted to mention this just as a tip that I've used, I have no idea if this would hurt or help anyone, but it helps me, I rinse my mouth out with water and a little bit of peppermint vitality oil and it's like a very cooling sensation when you're rinsing and it cleans a little bit. Also, this is a bit random, not sure if you'll even look at this haha but do you or anyone else feel like water tastes totally disgusting before you have an episode? that's one thing that is a definite sign that I'm going to have an episode. anyway, you're amazing for talking about this stuff, even if it's gross and personal.
I can’t tolerate most fruit & can only eat tiny amounts of the ones I can eat, but the vast majority of my episodes have seemingly no cause or trigger 😌
Have you ever discussed orodispersible ondansetron with your GP? It dissolves on your tongue so you don't need to drink with it - and for me that always makes a huge difference when I'm vomiting. The only issue would be that if you vomit then you wouldn't be able to see the tablets but it's probably worth noting that in hospital settings I've been given 12mg IV ondansetron and I've been px off label 8mg ondansetron, so if you did end up getting a double dose it likely wouldn't be too problematic unless you're prone to side effects from it. Another thing that I thought of was to speak to your dentist about prescription toothpaste, unless you're already using that? It has more fluoride in to help protect your teeth as much as possible. Ive got a few friends who are prescribed their toothpaste because of being on steroids, but I'd think if youre already getting damage from vomiting then that would be a very valid reason to be prescribed it. Have you ever tried Gingins? They're good for milder nausea, its just a strong ginger chew sweet - I do think it helps when your stomach is just churning because you've only recently finished being sick. Another great video :) you express yourself so well and are so thoughtful and positive in your videos!
Sophie Hobley I barely get prescribed normal ondansetron so I don’t think they would give me that! I only get 4mg tablets now and have to take 2! And yeah, I accidentally took 12mg in a CVS episode about 2 weeks ago (I thought I took 2 x 4mg ones but it was actually a 4 & an 8- I read through the whole leaflet panicking after that because I kept them both down aha, but it did say up to 16mg is okay if you do it by mistake as that’s just a pre-surgery dose. No I haven’t tried either, but thanks for the advice, I’ll ask about it! Thank you so much! Btw, I have been trying to find you on Facebook, but couldn’t find you (I think we discussed this a few months ago?), I could give you my name if that’s easier? And no, I haven’t tried the toothpaste or the
@@GeorginasJourney this is my etsy shop www.etsy.com/uk/shop/SophiesFlowerGifts message me on there (I don't use twitter or Instagram and don't have the spoons to branch out atm lol) and we can figure out how to find each other. Or if it helps I'm based in Leeds and there are two people in close in my profile pic :)
I have just been diagnosed, for me I have constant nausea which ends up in vomiting if it gets unbearable. I had it since march 2020 and almost screwed up my national exams because of it. I can't leave my house without vomiting and I just started therapy which is just talking to the doctor. Even if I did manage to leave the house I would be like a walking zombie unable to talk and focusing on holding it in. I wish there was a cure for this because even if it's a god damn surgery I would take it I just want to be rid of it.
Have you had much testing? I also have near constant nausea, but I know that usually indicates it’s not CVS (& if you look it up, you’ll see that there needs to be a ‘well phase’ between episodes for CVS to be diagnosed). So I think it would be worth seeing if you can referred to gastroenterology for more testing- a gastric emptying study in particular would be helpful. I felt exactly the same a couple of years ago, although it did eventually go away/evolve into actual CVS for me
@@GeorginasJourney I had a lot of testing, stool sample, x-ray and the camera thingy down my nose. I was actually diagnosed by a psychologist not a gastroenterologist. But I don't really have episodes like you said but the doctor was quite sure I had it. Maybe you can suggest what I may be experiencing?
@@demonetization6596 look into gastroparesis, that would be my first thought- it also wouldn’t show up on any of the tests you had, you’d need a gastric emptying study to diagnose it
@@GeorginasJourney but I already started therapy for CVS and my parents are already done with me going for tests. When I'm stressed or experiencing emotions I get nauseous which is one of the things of CVS. Also I don't have acid reflux like in gastroparesis.
@@demonetization6596 you asked me to suggest what I thought it was, that’s my suggestion. And you don’t have to have acid reflux with gastroparesis. You can do what you like, I was just answering your question.
❤❤❤ Im hoping your cvs situation is still under your control somewhat! Im trying to tame my cvs, Amitriptolyne has helped on the day to day survival,... But not for attacks - Indica cannabis is my go to - it has sedative properties,... and if I can sleep,.... then i can stop vomiting! 🎉
Shoot, me too really,... lots of consistent attacks, more than years before! Defo vapeing cannabis helps attacks, but Amitriptolyne for day to day use x 🏴😚
😢hope your ok - and have some decent support to help you though this!.... better days Will come soon,...just hang on in there and grip with your toes ❤ x
My brother has this, I'm super worried about him. Don't know what the hell to do. He's lost stones in weight and I feel like he's going to waste away and die.
Take him to the emergency department the next time he has an episode if you’re worried. And get him to contact his doctor again in the meantime and make sure he expresses all of that to them. This condition doesn’t usually kill people, but if he’s getting to a dangerous level of malnutrition, he may need a feeding tube to help sustain him. They can be inserted into the intestines if he can’t keep enough food down due to vomiting
My worst experience with CVS was when I was waiting for the Bus for college and I live in a rural area and it was a very cold winter morning I think it was around -4 there were people at the bus stop so I went somewhere quiet as I was feeling it. Threw up a few times then passed out woke up 10mins later and had to walk home whilst it was icy and blurry vision to the point of passing out again.
I totally understand how you feel! My longest episode lasted literally about 35 days and I got down to about 90 lbs I suffer everyday almost and cry alot
I’m so sorry you go through that! Are you seeing a gastroenterologist? Given that your episodes can be so long, it would be good if you could get a gastric emptying scan to make sure there’s nothing else going on (possibly look into gastroparesis), & they’d probably want to do an endoscopy as well
Thank you for sharing your story. I don’t have CVS but I have chronic daily nausea. Zofran aka Ondasteron is good but only works 50% of the time. I hope you get better one day! ❤️
@@Србомбоница86 I was told possibly delayed gastric emptying or IBS. It’s still an ongoing process and I’m trying different treatments. I don’t have a definitive diagnosis yet :(
It’s a minor detail, but I think I got the dates wrong & it was actually around 2014 when it started & when I was in sixth form. Also I take promethazine/phenergan every night & it’s good 😊
I’ve been sick for about a year now and they still haven’t diagnosed me with anything. This video makes me think this is what it could be. My last episode lasted probably 4 days I would wake up nauseous everyday and it lasted all day I was miserable. I need help but I’m not sure what to do
Keep going back to the doctors and emphasising how much this is affecting your quality of life and so you’d like to be referred to a gastroenterologist
I know this video has been a while, but I have been suffering with CVS for while now as well. I was wondering have they tried Haldol/Haloperidol? My flares usually last days but this med will usually help stop a flare in about 20 minutes for me. I'm in the US so idk how easily available/prescriptible it is there, but it helped make a big change in the managing a flare.
Don't let them give you that stuff, it's an antipsychotic medication with horrible long lasting effects and it's not meant for CVS. Talk to your doctor about going on Topirimate. It's changed my life. I'm a severe case of CVS, have been for the last 20 years. I never thought I would have a normal life. I was in the er every month at least once. I've been symptom free since I started Topirimate. I wish I could scream it from the mountains and help everyone suffering. I haven't gone this long without an episode in 20 years. My GI prescribes me the Topirimate and I'm telling you it gave me my life back. I hope this helps.
Thank you for this, I was really surprised I hadn’t heard of this med, but it seems like they don’t like to prescribe it here, had it caused any side effects for you? I’m so glad it’s helping you 😊
I'm 22 I have been experiencing cvs for 17 years in every month. I've done so many medical tests and had so many medications. I was so depressed for having medicines and test for no reason at all. Last year only I was diagnosed that it's cvs
I’ve been having the same symptoms for 7 years. The doctors won’t check for this. I have gotten so weak from it and I’m just never hungry anymore. I’m literally crying at this point when this happens....It’s so embarrassing.
Keep going back to the doctors until they start taking you seriously and ask to be referred to gastroenterology. There’s no test for CVS so maybe that’s why they’re not considering it and there’s also not many treatments (other than treating the symptoms when an episode starts), but they need to at least rule some stuff out for you
If they’re really not listening still, you could even go to A&E/ER in an episode and you might get a diagnosis or a referral to gastroenterology that way- they often take you a lot more seriously when they can see what’s going on for themselves!
I know how hard it can be to find a doctor that takes you seriously. I still would recommend going to a doctor again. However, if he is unable to diagnose your disease bacause he simply doesn't know about the disease or you cannot provide him with information on the disease in a language he understands (If you're not from an English speaking country for instance) then there might still be new hope for you cause new research has made out a gene correlating with the disease. www.medicinalgenomics.com/wp-content/uploads/2011/12/RYR2-CVS-NMO-published-2015.pdf The gene points towards a mislead/dysregulated calcium channel leading to neurological and metabolical abnormalities that will show as an episode. In a way, the mechanism behind CVS is very similar to a zinc overdose/toxicosis. Anyway, in that PDF, the researchers not only propose an additional treatment option (badrenergic blockade (propranolol)), they also now can explain why l-carnitine and various antioxidants seem to help. l-carnitine as well as their recommended antioxidant (Coenzyme Q10) can be easily bought online in the EU or US as both substances are considered food supplements. And there are studies dating back to 2012 or so saying that these substances have a positive effect on cyclic vomiting syndrome. And there are pretty of other antioxidants which can be bought easily too. Vitamin B2 (riboflavin) for example. It too has been tested in patients suffering from cyclic vomiting syndrome. Because of an autoimmune condition, I also have been experimenting with other antioxidants (vitamin B3 - nicotinamide) and (cinnamonbark oil - cinnamaldehyde, dilluted with olive oil and used as a topical on the skin or orally as cinnamon tea.) I also took some vitamin D3 and K2 supplements, which coincidentally, also turned out to may play a role in calcium homeostasis. As for me, nicotinamide and cinnamaldehyde helped a lot I think. But I would still recommend using the supplements tested in people with cyclic vomiting syndrome first before trying out some other antioxidants and calcium chalators. However, be aware that every substance may come with side effects. So read a little bit about potential side effects before trying out a supplement.
my girlfriend has been battling CVS for over 5 years..I feel so useless during her episodes. I've exercised every possible remedy/ technique to try and reduce her symptoms but they have showed minimal success. It hurts to watch your loved one suffer for a reason you and even they may not know. (also every single doctor blames the fact she smokes weed as the cause, there is NO hard evidence to support this) I hope one day I find out how I can help her the most, maybe even a "cure" of some sort..until that day I will keep searching.
That’s really nice of you to want to help. Things you can do to help are getting her water as needed, emptying sick bowls (if she uses them) & passing her anti-sickness tablets (if she uses them). Other than that, giving her space & letting her rest is all you can really do until she starts to come out the other side of it (& then at that time, she may find it helpful for you to bring her plain foods). Has she tried stopping the weed for a few months to see if it helps? Weed can cause a vomiting condition in some people (Cannabinoid Hyperemesis Syndrome), so if she hasn’t already, I’d recommend she stop smoking for 3-6 months to see if it helps. & if it doesn’t, the next thing I’d want to look into, even if it’s just to rule it out, would be gastroparesis- which is tested for with a Gastric Emptying Study. I really hope she can find a way to get it under control, as I know how horrible it is
Hi my daughter has been ill for three years she was diagnosed with tummy migraine as a child with many fainting episodes she’s now 22 and her life has been hell she has had so many hospital admissions most times reluctantly but she’s kept in for another a week iv drugs are the only thing that’s helps her doctor has said it’s just psychosomatic we try an age it for a few days until I feel she’s getting dehydrated she just got her gastroperesis test and they said that’s normal so back to square one she is at the stage her BP keeps going up and down rapidly many fainting episodes if she walks about to much. May I ask have you gastroperesis also? Sometimes if she eats her dinner usually something light if she vomits in the morning it’s al undigested like whole apologies for graphic details but we are so used to the vomiting it’s Normal to us. Keep going beautiful girl your a strong cookie 💜✌🏼as her mum it’s heartbreaking to see her like this x
Hi! I had the gastroparesis test and it all came back normal! My fainting is caused by a condition called POTS though, so you could ask your daughters doctor about that and ask if she can be tested! It’s a relatively simple test that will give you a definitive answer! It won’t explain everything, but could give some answers at least!
I'd love updates on this as it doesn't sound like CVS to me(just wondering if its something else) I've had it sense I was a child, and immediately following the episode itself the Nausea goes away. Unless I was previously dehydrated, then the episode lasts all day and progressively gets worse until I'm in hospital for fluid I.V.
Everyone is different, but I can have hours without nausea, but not whole days without nausea. If you have constant nausea, I would recommend looking into gastroparesis
Hi, I wanted to reach out because I’m really struggling. I’m not diagnosed with Cyclical vomiting syndrome. You had previously suggested I get tested for gastroparesis, I have not yet because my doctor kinda dismissed me when I suggested that. I have trouble after I eat and will often throw up. I can usually handle really small amounts and liquids are easier (lots of ensure.) Bigger amounts don’t go well. Eating most of the time causes me to be in pain. In the past three days I have gotten sick over 20 times. I don’t know what to do. Sometimes Zofran works but not always. I asked my PCP doctor for a referral to a gastroenterologist so I can get another opinion. Do you have any suggestions?
There’s a medication called domperidone that may help you, so you could enquire about that. But other than that, you really need to get that referral to another GI doctor, as throwing up after you eat isn’t cyclical, so that doesn’t sound like CVS. It sounds much more like gastroparesis, which needs to be tested for with a gastric emptying study. However, the treatment for gastroparesis is medications like zofran, cyclizine & domperidone, so alternatively, if you can get those medications prescribed anyway, that may help you. cyclizine is just an antisickness medication, whereas domperidone speeds up stomach motility, so you may have some success with either or both of those 💗
@@GeorginasJourney hi, I brought the stomach stuff up again to my doctor and explained in more detail. She is having me tested for gastroparesis. She said it’s common with autonomic dysfunction. Thanks for the encouragement to keep going!
Sadly not, I take an antiemetic before I go to bed every night, but it doesn’t stop me waking up to be sick when an episode starts. Most of my episodes start early in the morning, and other than taking the antiemetic before bed every night, there’s nothing else I can do. The antiemetic probably is helping delay the episodes a bit (as I usually get about 5 hours sleep after taking it), but it can’t fully stop it
What causes CVS and what’s the difference between CVS and psychosomatic cyclic vomiting? Through the chronic illness community I heard of someone who had the latter and ended up needing a feeding tube because of their vomiting. I know this is a difficult topic on grounds for those with eating disorders.
CVS is a diagnosis that’s given when someone has a physical cause for cyclical vomiting, but that cause is unknown. For me, it turned out to be Mast Cell Activation Syndrome. Eating disorders are mental illnesses, so not relevant to this video.
My episodes last 5-7days everyday I vomit the first 5days can’t keep nothing down at all I have had it since I was 18 and stress triggers my episodes and only thing to ease it up is narcotic but hospital never wants to give out narcotic 😩 I’m in Toronto Canada and every hospital and doctor treats me the same when I go to emergency for this
@@know_how5661 no I have to be given morphine through iv at hospital ... I’ve heard cannabis helps some people but for me it doesn’t but when I do go to hospital they always try to tell me the cause of my episodes are from smoking cannabis but it’s very untrue I have stopped smoking before and had even more episodes then I do when I am consuming cannabis on a daily basis
@@Teestar519 actually all cvs patients have different symptoms and triggers. My triggers usually are sore throat/infection that forms into a flu later on... Then on the very next morning i get up early between 7 or 8 am very nauseous and then it starts to build up very thin saliva in my mouth which i have to hold in my mouth for as long as i can but i start vomiting as soon as i let it go down the stomach... I don't go to doctors instead i get iv by myself and that is the only solution for my problem so far but yes it does not stop it from happening again ... Miserable but i keep myself strong by saying I have to get used to it as it will go away after one or 2 days by itself.... thanks for reading
@@know_how5661 yes I know everyone has different symptoms of CVS I have had it for over 10 years and my younger sister who is 3 years younger has had it for about 7 years trust me I know all about CVS but I’m not sure what in my comment made you think I thought everyone has the same symptoms? I said I have been told by other with it that canabis relieves it for them but doesn’t work for me and that doctors all say marijuana triggers episodes... so not sure what made you think I meant that’s how it is for everyone? Also if you don’t mind me asking where do you live and where do you get the supplies to give yourself an IV at home?? I *HATE* with a passion going to the hospital but sometimes I just get so dehydrated after vomiting for 5-7 days straight I have to get some kind of fluids into me and IV is only option as I can’t keep ANY fluids or food down when I’m having my episodes as I vomit straight non stop every 20minites for 5-7 days every time and my episodes just come on out of no where I will be fine one minute then next minute my mouth is watering I throw up start sweating perfusovley and then it’s just non stop for 5-7days after that
@@Teestar519 I totally agree with first part of your comment and to be honest i am very happy to find someone who has similar symptoms as i have whenever i get those episodes... "Watery mouth with strong nausea" . That water is so thin and i try to spit it or hold it in my mouth but it gets down at last and then non-stop vomiting starts...😭... That thin water does not stop coming in till i get something to eat after 1 or 2 days... And i wonder why and where does it come from... My main triggers are sore/infectious throat and flu... I can't take antibiotic pills as it does come out quickly and i can't keep it in my mouth due to bad taste... Answer to your 2nd question: I do get those IV from a friend of mine who works in a nearby hospital because most of the time don't recommend IV as they don't understand anything about "CVS" infact they just don't wanna believe it... I live in Pakistan btw... And i didn't try marijuana yet and can't even think of it lol... Its more like committing a crime here in the society... So i just rely upon IV and most of the time my episodes lasts for about one or two days at most... Thank you for your time and your story of cvs ... We will talk more if you have time...stay healthy always
Please reply to me... My feeling of nausea and vomiting is a continuous condition... It does not stop at intervals as mentioned in the CVS... Medications help me recover, but for 2 or 3 weeks, then I don't know why the drugs stopped working and I became sick for about 10 days I suffer from severe vomiting even if I did not eat anything. I vomited and nothing came out of the stomach 
Bless you, this sounds so horrible, I’m sorry 😞 go to hospital if you can and they can give you fluids and iv medication which is stronger and works quicker. I’ll keep you in my thoughts
I think.this is what my son has. Every week for the last 6 weeks he has been vomiting for 2 days straight. The first few times I thought it was bug. But now I'm thinking no, it's something else. It's affecting his attendance at school and his education.
You need to take him to the doctors if you haven’t already, they need to investigate what’s going. CVS is a diagnosis based on symptoms and when all of the other tests have come back normal, so they need to investigate whether there’s any other underlying causes before he can be diagnosed with it. I hope they can help him
Immediately after drinking coffee I would go brush my teeth and only recently learned that it was damaging my teeth. I wish my dentist would of given me the wait 20 minute tip sooner.
Jim Jauh-hey I kind of think there’s only so much you can realistically do in regards to food and drink- citrus fruit and tomatoes are also highly acidic, but for most people it’s not always possible to brush our teeth every time after eating them 🤷🏽♀️ And at least you know now :)
Georgina's Journey yeah it’s a good tip though if you can manage it. Also like the new thumbnail and look at that sub count!! Hope you reach 5k before the end of the year. 🙂
My son suffering from the pain of cyclic vomiting syndrome 😢😢💔💔 every he experience episodes 😢😢😢 it breaks my heart 😭😭😭 his only 8yrs old.... He took Zofran but its not totally stop his episode 😭😭😭 it so hard for me to see my son suffering from that illness😭😭😭
lm 24 years old.... in the begining l had the same your symptoms But in the last period I got sick every two weeks and for 10 days I vomited within 24 hours even during the night so I don't sleep these 10 days .. I get very tired 😢 What should I do? Search the internet in English 
I think it’s time to go to the emergency department at your local hospital for IV fluids and IV antisickness, this sounds horrible, I’m so sorry. Lots of things can cause vomiting so they may be able to investigate for you, keep me updated when you feel able to, im so sorry you’re going through this
Hi i have been diagonsed cvs since 14 i am now 25 mine is triggered by my menstrual cycle and i only get it one day per month for 16 hours of vomiting every 20 minutes ive been hospitalized many times due to it. The only thing that helps is birth control for me. Ive been on birth control for 10 plus years and i would like to get off. How do you work with cyclic vomiting syndrome? Because i need to call out atleast once per month
Hi, I’m on birth control too as it helps me a lot, so I don’t know about coming off it, as I haven’t tried. For me, the only reason I would come off it, would be if I were to try to have children. And I also have several other chronic illnesses, so I am not able to work.
@@GeorginasJourney thanks for the reply i appreciate it!! Yes actually i am thinking of having children thats why i want to get off of it. Last year i stopped taking the pill for one month and my cvs came right back. So awful. 😭😭 anyway thanks for the video!
That is a really long time to be in episode, I'm glad it's only every 3-4 weeks at least. I sometimes feel like hardly any time has passed between my episodes (they're usually every 6 days apart), but they don't usually last longer than 2 days
@@GeorginasJourney I made several attempts to post about it but TH-cam kept automatically deleting it. It's a natural supplement. I'm currently taking it for my CVS and the gaps between episodes have gotten longer.
Actually all cvs patients have different symptoms and triggers. My triggers usually are sore throat/infection that forms into a flu later on... Then on the very next morning i get up early between 7 or 8 am very nauseous and then it starts to build up very thin saliva in my mouth which i have to hold in my mouth for as long as i can but i start vomiting as soon as i let it go down the stomach... I don't go to doctors instead i get iv by myself and that is the only solution for my problem so far but yes it does not stop it from happening again ... Miserable but i keep myself strong by saying I have to get used to it as it will go away after one or 2 days by itself.... thanks for reading
@@know_how5661 there’s two I can think of that you might be referring to- the one of someone throwing up blood- which is not normal and would suggest there is something else wrong, and the one where someone had constant nausea- which literally goes against the criteria for a person to have CVS. So yes, symptoms vary, but those instances are not within the range of symptoms that are typical of CVS.
helloo have you heard of the Superior mesenteric artery syndrome ? it's a rare syndrome , so usually doctors don't even know about it , it also affects heart rate as i saw in your other video en.wikipedia.org/wiki/Superior_mesenteric_artery_syndrome i admit i don't know about your medical history , apologies if this wasn't helpful , all the best wishes for you dear
Have your doctors considered a feeding tube or central line for you to get fluids & nutrition an alternative way (if it was from lack of fluids & nutrition)? & have they looked into whether you could have gastroparesis? There’s a lot of things that can be done for chronic vomiting in hospital, so your doctors really shouldn’t have let you get to that point & I’m sorry that they did (if it was from malnutrition/lack of fluids)
@@GeorginasJourney No they have not, most of the time my episodes are not bad but sometimes they are so that wouldn’t really be necessary. I was not at the hospital, I was at home and it was from dehydration.
@@maddiefost30 Sorry, I didn’t realise you meant from dehydration. Were you too unwell to call an ambulance or to get to the hospital? If so, I’d recommend coming up with a plan so that you don’t end up in this situation again. Most people aren’t able to drink for about 24 hours with a stomach bug, so in theory, short CVS episodes shouldn’t do too much harm as it shouldn’t be too different to that, but if you’re vomiting for more than 24 hours, you will probably need to come up with a plan for how to get to a hospital. For me, I text my dad or best friend ‘vomiting, call ambulance,’ or if I can’t manage that it’ll just be ‘sick, ambulance’ & because we’ve discussed it beforehand, they know what to do. Something like this would be really good for you to have in place, as dehydration is very easy for hospital staff to treat
I roll over and puke in a bowl too there's no moving my partner has fo take me to the toilet or id go in the bed, onsanstron doesn't work for me. I didn't know about the brushing I've lost 4 teeth
Sorry to hear you go through this too. Have they looked at any possible causes for you, like gastroparesis or something? So glad you have your partner to help you through it. I really struggle so badly on my own.
Hi Georgina I was wondering if you had Instagram and would be happy for me to message you? It’s looking like my 1 year old has CVS and as you can imagine awful to witness and she can’t talk of course I want to do anything I can to help her. So wanted to gain some people diagnosed perspectives. X
Hi Robyn, I’m sorry to hear that your daughter might have CVS, it’s really not a nice thing for anyone. I don’t have a public Instagram account anymore as I had a lot of stalkers and it became unsafe for me. But I’d be happy to answer any questions here x
Thank you much currently she is ill for one day every 3 to 4 weeks I was wondering in the lead up to the cycle how would you explain your symptoms and any tips you would advise for me to make her feel most comfortable? X
@@robynpayne6442 it is different for everyone- some people don’t have symptoms in between cycles and others feel nauseous all the time. It would be really helpful if her doctors can prescribe her an antisickness medication and also for them to investigate it further to see if there’s a cause that can be treated
I struggle with vomiting due to menopause. The hot flashes come on at 3 am or 5 am, and I keep a bucket next to my bed. The vomiting is instantaneous, you don't know it's coming and there's barely enough time to react.
So sorry you’re going through that, I hope it settles soon. Even though mine has a different cause, it’s similar for me, I have to use bowls as I don’t know when it’s coming
0:13- how it started. 2:27- my diagnosis. 3:28- progression. 3:50- hospitalisation. 5:04- my episodes. 6:29- management. 8:29- medication. 11:09- management again. 11:33- dental care.
I'm 16 and have CVS, it's so nice to see someone else advocating for it as well! My episodes are generally around the 10 day mark and always require hospitalisation. Sending lot's of love and good health days!! xx
I’m so sorry you deal with that! Do you have episodes often? And thank you so much, same to you! xx
Is ur Cvs cured..?
If ur Cvs cured then tell ur ..how ur Cvs become cure please tell me
l have the same thing since 4 years But in the last period I got sick every two weeks and for 10 days I vomited within 24 hours even during the night so I don't sleep these 10 days .. I get very tired 😢 What should I do? Search the internet in English

Georgina, my Dad's friend suffered from this from most of his life. He did not know what it was until the last few years of his life. I know it can be very rough dealing with that nausea and everything. I hope you can continue to find some relief. Hoping all the best for you
John D. It’s not just the nausea, the vomiting itself is awful too. Thanks
I've had CVS for 4 years now, used to get a cycle every 3 or 4 months for 3-5 days at a time. Now it's hitting a little harder, almost once a month these days.
One of the great things I found to mitigate the pain was jumping in a hot bath. The pain relief only seems to last as long as the bath for me but it's saved me a lot of suffering.
Thanks for sharing your journey, it's good to know I'm not alone.
so when i have a cvs attack i jump into a hot bath and it will go?
Sorry to hear that it's getting worse, it really is horrible to deal with. I can't really move when I have episodes, but maybe someone else will see this tip and it will help them :) Nothing beats a nice hot bath just after an episode though :)
I think he's talking about it easing pain from CVS episodes, not the CVS episode itself
@@gdiab05 for me there's sometimes a window before I get sick in the morning (or sometimes after a series of getting sick /retching) when a hot bath seems to help pause or slow the cycle temporarily. I'm not sure if this reaction is well-documented, but it has often helped me find a moment of rest during the suffering.
I experience the same exact thing about every month I was hospitalized twice this year for a week at a time each , baths are the only thing that help take some of the unbearable pain away.
It's great that you are trying to tell people about CVS, i kept vomiting for more the 14 years and no one knew what's wrong with me, last year because of videos on youtube like yours i got to know why i'm vomiting every morning and i started taking amitriptyline which has changed my life
I’m so glad you’ve finally found something that has helped you! Do you know how/why the amitriptyline helps?
@@GeorginasJourney stay away from amil...its great for short term relief but can really mess up ur heart for life almost killed me. If ur considering YOU NEED A CARDIAC ASSESSMENT TEST it may god forbid harm you.
Look into cyproheptadine peractin 4mg...its children's antihistamine and works great for prophalic(everyday treatment) and change your diet...look at what causes migraines that will help..God bless
@@gjstein5418 what is amil?
@@GeorginasJourney amiltrypline...it almost killed me...so dangerous...docs hand it out to us with no cardiac assessment test....very dangerous especially with a CVS patient
@@gjstein5418 it’s generally only dangerous if you’ve got a pre-existing heart condition and most doctors know that and won’t prescribe it in those instances. I know lots of people who have been on it for years with no problems. I’m sorry you had a bad experience with it, but that’s not the case for everyone. Also, I didn’t mention that medication at all in my video, so your other rude & offensive comment you left on my channel was completely uncalled for.
Just learning about CVS and pretty sure I have it. At 63 years old, suffering since 8 years old. Maybe only two or three a year. Once a month, with my periods, as I got older. Very sporadic in my twenties and thirties, maybe with childbearing. Then, in came on again in my forties, once every week or two, with a few stretches of up to a few months. I always thought I had something normal and wondered why nobody else complained about feeling so miserable with their periods. It just occurred to me, very recently, that most people with migraines don't throw up all day long. So, I started searching and found CVS.
Hi! Some people do throw up from their migraines and periods, so if it always coincides with that, it’s probably not CVS, but if you also get episodes for seemingly no reason (& stomach bugs and food poisoning has been ruled out), then it could be CVS. Hope this helps and I’m so sorry you’ve battled through these health struggles for so long, no matter the cause, I can tell you’ve been through a lot with this 💗
I have had unexplained vomiting episodes since I was 15. I am 24 now and still struggling with it, however, I have not been diagnosed with anything. My symptoms are very similar to the symptoms of CVS. I will definitely make an appointment with a specialist to finally get a diagnosis. Thank you for sharing your experience. It makes me feel less alone :)
You’re welcome, I hope it goes well! Gastroparesis is another condition it may be worth looking into- especially if your episodes are more constant than episodic!
i got diagnosed a little over a year ago with CVS. thank you for sharing your experience it’s been extremely helpful for me!! i hope you are doing good❤️
Thank you! 💗
So what did the Drs do for you after you were diagnosed?
I also have constant severe nausea from MCAS & vomit from that multiple times a week, but this is separate to the cyclical vomiting. This video doesn’t go into detail on that as it’s separate, but I’ve dealt with that since 2014 also.
Will try to boost this comment with comments too
Do that people can see it
I know what you mean about not being able to move its so bad. But cramping was my biggest pain, but nausea, vomiting and diarrhea were always accompanying it. I thankfully am in one of those dormant stages you talked about and only sometimes have episodes. I went a whole year with it happening every week three to five times
TG PR it’s so hard to explain how bad it is if you’ve never experienced it, isn’t it! I don’t always have bad cramping, but I do sometimes! And I’m so happy for you that you’re currently having a good period with it!
As someone who suffers strongly with Emetophobia - Fear of Vomiting this must be horrific! I think Nausea can also be just as bad. Your such a strong & amazing girl, hope things will get better for you ❤️☺️
Thank you. I also suffer from severe emetophobia (I have a video about how severe it got for me on my channel, if you search ‘Georgina’s Journey Emetophobia’ on TH-cam, I’m sure it’ll come up. For example, atm I sleep with earplugs every night in case any of my housemates get sick in the night (they usually don’t, but that’s just one of the things that emetophobia makes me scared of and what it makes me do)
@@GeorginasJourney aw it's awful & yet I actually never knew it was that common tbh. I think my phobia all comes down to germs/bacteria which is why I wash my hands constantly, I start to freak out if there's a bug going around which is the worst! Yes I will check out more of your videos I think they really do help a lot, your an inspiration ❤️
@@GeorginasJourney I think it all comes down to Nausea as vomiting is bad enough I think the feeling itself can be just as bad but I'm sure people will say the opposite
@@markjonno91 mine is mostly a fear of the vomiting bug as well, which I talk about in that video I said about. & emetophobia isn’t that common, I just got severely ill from a sickness bug due to my underlying heath conditions a few years ago (I ended up in Resus in hospital from it), so that’s why I have the phobia
@@markjonno91 and yes, the nausea is the worst part for the vast majority of people. The relief of actually being sick and the fact it only lasts a second or two is not that bad, and most people know that
I’m so sorry you’re going through this again, Georgie. Thankfully I only get nausea, but I do understand xxxxxxxxxx
Penelope Polins née Meyer xxxx
❤😢 aw pet!
I understand too well what you go through!
Thankyou for making this content. Xx
You’re a warrior 🫶🏽❤️🩹
I sure am! 🐣
...takes one to know one!! 🥨🏴
All the love and well days to you x ❣
Ondansetron is also called Zofran in the US and can be given in the gums as well. Prochlorperazine is super hard to get in the US. I had to beg my doctor but she doesn’t understand cvs. I’m so frustrated. Thank you for relating
My best friend is actually from the US so we’ve spoken about this a lot- while zofran is SO hard to get here, she told me she can get zofran without any problems, but prochlorperazine is almost impossible to come across. Here, it’s a financial thing as zofran is expensive & since we pay a standard rate for every prescription (no matter what it is) our health service just can’t afford to give it to many people. It has made me wonder why prochlorperazine is so hard to get there since it’s so much cheaper than zofran
@@GeorginasJourney I have CVS and Zofron doesn’t even work for me anyway 🤧
@@GeorginasJourney I'm from the UK aswell and prochlorperazine was one of the first drugs that I was put on although it didn't help me much.
Hello! I just found your page and I’ll be posting videos of my journeys as well. I have CVS like you. I was misdiagnosed with the Stomach flu often. Because I only got sick in the mornings at the time as a 11 year old they gave me pregnancy test every time and had those “talks” with the doctor. Then years later when I was 16 I was diagnosed with CVS. 18 years old with Gastroparesis. Now my doctors are thinking I have Raynaud’s And Fibromyalgia. I know what it’s like to be always the sick girl growing up and never feeling well. It’s a battle. It’s a struggle. Even when we feel weak, we are strong. If you ever want to talk about CVS or anything other GI problems. I am mostly in remission with my CVS now at 22 years old. I still have my moments but when I got older my CVS started to trigger around my period cycle or just randomly. Feel free to reach out. Chronic illness gals need to stick together ❤️
let me know when you start making videos, I'd love to watch them! :)
Oh my god you only got sick in the morning for a period too? I’m going through that right now, and it sucks, because as a 14 year old doctors are always trying to tell me I’m pregnant or something. Even though it monumentally sucks, I’m at least glad I’m not crazy in my experiences :))
Rainy Days I had that happen too and also had lots of people try to tell me I could be pregnant! For some people it can just get better over time, so I hope you can find something that helps or that it goes away for you in time 💕
I know what your going through it’s the worst pain in the world, it Took me 10 years to understand it was cyclic vomiting syndrome, I have been a long time weed smoker and since I’ve stopped my attacks have been a lot less like 3-5 hours and I haven’t been to hospital for treatment. I’ve been in your situation with the iv drip in hospital where they couldn’t get it in for over an hour due to my vomiting.
Hopefully your getting better, thanks for the video I thought I was alone.
I’ve nearly died from this and it’s so scary. 🙏🏼
Hope you continue to get better! It is possible that weed caused it for you, as there’s something called cannabinoid hyperemesis syndrome that could have caused it from the weed! And that might explain why things have got a little better now! For me, it’s thought to be caused by my genetic condition, but there are so many causes so it can be difficult to know! And that’s the worst when they can’t even get the IV in, isn’t it! Sorry you’ve been through that too!
I'm 16 and I've been having episodes for about, 10 years now. My CVS is very different. it differs from year to year, but some years I have episodes about once every month, or only once or twice a year. my episodes typically last for about 2-5 days, vomiting from every 15 minutes to every hour. but it's super interesting that the general symptoms are the same for all of us, but the way it shows itself is so different. Also because my recovery time takes about 1-2 weeks of not being able to eat correctly. I wanted to mention this just as a tip that I've used, I have no idea if this would hurt or help anyone, but it helps me, I rinse my mouth out with water and a little bit of peppermint vitality oil and it's like a very cooling sensation when you're rinsing and it cleans a little bit. Also, this is a bit random, not sure if you'll even look at this haha but do you or anyone else feel like water tastes totally disgusting before you have an episode? that's one thing that is a definite sign that I'm going to have an episode. anyway, you're amazing for talking about this stuff, even if it's gross and personal.
Hi Eva, hope you're doing okay! And thank you so much for the tips! And yeah, I've noticed that with water too!
I got to share this with someone who was asking for help in a group...they said the really liked it and gave them some things to think about
thanks for sharing it!
I take the same meds for my GP& migraines,your amazing honey
Jessica's Journey they make it slightly more bearable, don’t they! Thank you so much, so are you
Could GP be related to abdominal migraines? I am not chronically ill but I have a sister who is.
I can’t tolerate most fruit & can only eat tiny amounts of the ones I can eat, but the vast majority of my episodes have seemingly no cause or trigger 😌
Bless you
rae1957tn thanks
Have you ever discussed orodispersible ondansetron with your GP? It dissolves on your tongue so you don't need to drink with it - and for me that always makes a huge difference when I'm vomiting. The only issue would be that if you vomit then you wouldn't be able to see the tablets but it's probably worth noting that in hospital settings I've been given 12mg IV ondansetron and I've been px off label 8mg ondansetron, so if you did end up getting a double dose it likely wouldn't be too problematic unless you're prone to side effects from it.
Another thing that I thought of was to speak to your dentist about prescription toothpaste, unless you're already using that? It has more fluoride in to help protect your teeth as much as possible. Ive got a few friends who are prescribed their toothpaste because of being on steroids, but I'd think if youre already getting damage from vomiting then that would be a very valid reason to be prescribed it.
Have you ever tried Gingins? They're good for milder nausea, its just a strong ginger chew sweet - I do think it helps when your stomach is just churning because you've only recently finished being sick.
Another great video :) you express yourself so well and are so thoughtful and positive in your videos!
Sophie Hobley I barely get prescribed normal ondansetron so I don’t think they would give me that! I only get 4mg tablets now and have to take 2! And yeah, I accidentally took 12mg in a CVS episode about 2 weeks ago (I thought I took 2 x 4mg ones but it was actually a 4 & an 8- I read through the whole leaflet panicking after that because I kept them both down aha, but it did say up to 16mg is okay if you do it by mistake as that’s just a pre-surgery dose.
No I haven’t tried either, but thanks for the advice, I’ll ask about it!
Thank you so much! Btw, I have been trying to find you on Facebook, but couldn’t find you (I think we discussed this a few months ago?), I could give you my name if that’s easier?
And no, I haven’t tried the toothpaste or the
@@GeorginasJourney this is my etsy shop www.etsy.com/uk/shop/SophiesFlowerGifts message me on there (I don't use twitter or Instagram and don't have the spoons to branch out atm lol) and we can figure out how to find each other. Or if it helps I'm based in Leeds and there are two people in close in my profile pic :)
I have just been diagnosed, for me I have constant nausea which ends up in vomiting if it gets unbearable. I had it since march 2020 and almost screwed up my national exams because of it. I can't leave my house without vomiting and I just started therapy which is just talking to the doctor. Even if I did manage to leave the house I would be like a walking zombie unable to talk and focusing on holding it in. I wish there was a cure for this because even if it's a god damn surgery I would take it I just want to be rid of it.
Have you had much testing? I also have near constant nausea, but I know that usually indicates it’s not CVS (& if you look it up, you’ll see that there needs to be a ‘well phase’ between episodes for CVS to be diagnosed). So I think it would be worth seeing if you can referred to gastroenterology for more testing- a gastric emptying study in particular would be helpful. I felt exactly the same a couple of years ago, although it did eventually go away/evolve into actual CVS for me
@@GeorginasJourney I had a lot of testing, stool sample, x-ray and the camera thingy down my nose. I was actually diagnosed by a psychologist not a gastroenterologist. But I don't really have episodes like you said but the doctor was quite sure I had it. Maybe you can suggest what I may be experiencing?
@@demonetization6596 look into gastroparesis, that would be my first thought- it also wouldn’t show up on any of the tests you had, you’d need a gastric emptying study to diagnose it
@@GeorginasJourney but I already started therapy for CVS and my parents are already done with me going for tests. When I'm stressed or experiencing emotions I get nauseous which is one of the things of CVS. Also I don't have acid reflux like in gastroparesis.
@@demonetization6596 you asked me to suggest what I thought it was, that’s my suggestion. And you don’t have to have acid reflux with gastroparesis. You can do what you like, I was just answering your question.
❤❤❤
Im hoping your cvs situation is still under your control somewhat!
Im trying to tame my cvs, Amitriptolyne has helped on the day to day survival,...
But not for attacks - Indica cannabis is my go to - it has sedative properties,...
and if I can sleep,.... then i can stop vomiting! 🎉
Sorry you go through this too! It is brutal! Sadly I’ve gone downhill massively since then!
😑❤
Shoot, me too really,... lots of consistent attacks, more than years before!
Defo vapeing cannabis helps attacks, but Amitriptolyne for day to day use x 🏴😚
😢hope your ok - and have some decent support to help you though this!.... better days Will come soon,...just hang on in there and grip with your toes ❤ x
I have just been diagnosed with this and my story is the exact same as yours. When they started and when they got worse
Really sorry you’ve been so unwell- that’s interesting that you had such similar experiences to me, though!
My brother has this, I'm super worried about him. Don't know what the hell to do. He's lost stones in weight and I feel like he's going to waste away and die.
Take him to the emergency department the next time he has an episode if you’re worried. And get him to contact his doctor again in the meantime and make sure he expresses all of that to them. This condition doesn’t usually kill people, but if he’s getting to a dangerous level of malnutrition, he may need a feeding tube to help sustain him. They can be inserted into the intestines if he can’t keep enough food down due to vomiting
My worst experience with CVS was when I was waiting for the Bus for college and I live in a rural area and it was a very cold winter morning I think it was around -4 there were people at the bus stop so I went somewhere quiet as I was feeling it. Threw up a few times then passed out woke up 10mins later and had to walk home whilst it was icy and blurry vision to the point of passing out again.
I’m so sorry you went through that, that sounds awful
😢❤
I hope things are better for you x 🏴
I totally understand how you feel! My longest episode lasted literally about 35 days and I got down to about 90 lbs I suffer everyday almost and cry alot
I’m so sorry you go through that! Are you seeing a gastroenterologist? Given that your episodes can be so long, it would be good if you could get a gastric emptying scan to make sure there’s nothing else going on (possibly look into gastroparesis), & they’d probably want to do an endoscopy as well
I was heavy when I first started cvs, not anymore
You brave person ❤.
I have this too
Thank you 😊 You’re a brave person too ❤️
Thank you for sharing your story. I don’t have CVS but I have chronic daily nausea. Zofran aka Ondasteron is good but only works 50% of the time. I hope you get better one day! ❤️
Have you found out what causes your nausea?I was told for me it could be anxiety or during PMS and period is the hormones but I am not sure
@@Србомбоница86 I was told possibly delayed gastric emptying or IBS. It’s still an ongoing process and I’m trying different treatments. I don’t have a definitive diagnosis yet :(
@@ineedvyvanse3493 I do have IBS and I get a little bit nausea before harder bowel movements only ,but not outside of it .
It’s a minor detail, but I think I got the dates wrong & it was actually around 2014 when it started & when I was in sixth form. Also I take promethazine/phenergan every night & it’s good 😊
I’ll write a few comments on here…
To boost this comment…
So that people can see it
As I’ve already got a pinned comment
And you can’t have 2 pinned comments I don’t think
I’ve been sick for about a year now and they still haven’t diagnosed me with anything. This video makes me think this is what it could be. My last episode lasted probably 4 days I would wake up nauseous everyday and it lasted all day I was miserable. I need help but I’m not sure what to do
Keep going back to the doctors and emphasising how much this is affecting your quality of life and so you’d like to be referred to a gastroenterologist
I know this video has been a while, but I have been suffering with CVS for while now as well. I was wondering have they tried Haldol/Haloperidol? My flares usually last days but this med will usually help stop a flare in about 20 minutes for me. I'm in the US so idk how easily available/prescriptible it is there, but it helped make a big change in the managing a flare.
Don't let them give you that stuff, it's an antipsychotic medication with horrible long lasting effects and it's not meant for CVS. Talk to your doctor about going on Topirimate. It's changed my life. I'm a severe case of CVS, have been for the last 20 years. I never thought I would have a normal life. I was in the er every month at least once. I've been symptom free since I started Topirimate. I wish I could scream it from the mountains and help everyone suffering. I haven't gone this long without an episode in 20 years. My GI prescribes me the Topirimate and I'm telling you it gave me my life back. I hope this helps.
Thank you for this, I was really surprised I hadn’t heard of this med, but it seems like they don’t like to prescribe it here, had it caused any side effects for you? I’m so glad it’s helping you 😊
I'm 22 I have been experiencing cvs for 17 years in every month. I've done so many medical tests and had so many medications. I was so depressed for having medicines and test for no reason at all. Last year only I was diagnosed that it's cvs
I’m glad you finally got a diagnosis 💕
@@GeorginasJourney ❤️yeah thank you and hope you are fine too🥰🙏
I'm 42 and have been having episodes since 18 or 19 years old. It's horrible. I literally can not function
I’m so sorry, it really is awful, have you had a gastric emptying study to check it isn’t gastroparesis?
Doggy poop bags are also water tight for vomiting episodes. I've had to use them more times than I'd like in a pinch.
That’s a good shout, me too!
I’ve been having the same symptoms for 7 years. The doctors won’t check for this. I have gotten so weak from it and I’m just never hungry anymore. I’m literally crying at this point when this happens....It’s so embarrassing.
Keep going back to the doctors until they start taking you seriously and ask to be referred to gastroenterology. There’s no test for CVS so maybe that’s why they’re not considering it and there’s also not many treatments (other than treating the symptoms when an episode starts), but they need to at least rule some stuff out for you
If they’re really not listening still, you could even go to A&E/ER in an episode and you might get a diagnosis or a referral to gastroenterology that way- they often take you a lot more seriously when they can see what’s going on for themselves!
I know how hard it can be to find a doctor that takes you seriously. I still would recommend going to a doctor again.
However, if he is unable to diagnose your disease bacause he simply doesn't know about the disease or you cannot provide him with information on the disease in a language he understands (If you're not from an English speaking country for instance) then there might still be new hope for you cause new research has made out a gene correlating with the disease. www.medicinalgenomics.com/wp-content/uploads/2011/12/RYR2-CVS-NMO-published-2015.pdf
The gene points towards a mislead/dysregulated calcium channel leading to neurological and metabolical abnormalities that will show as an episode. In a way, the mechanism behind CVS is very similar to a zinc overdose/toxicosis.
Anyway, in that PDF, the researchers not only propose an additional treatment option (badrenergic blockade (propranolol)), they also now can explain why l-carnitine and various antioxidants seem to help.
l-carnitine as well as their recommended antioxidant (Coenzyme Q10) can be easily bought online in the EU or US as both substances are considered food supplements. And there are studies dating back to 2012 or so saying that these substances have a positive effect on cyclic vomiting syndrome. And there are pretty of other antioxidants which can be bought easily too. Vitamin B2 (riboflavin) for example. It too has been tested in patients suffering from cyclic vomiting syndrome.
Because of an autoimmune condition, I also have been experimenting with other antioxidants (vitamin B3 - nicotinamide) and (cinnamonbark oil - cinnamaldehyde, dilluted with olive oil and used as a topical on the skin or orally as cinnamon tea.) I also took some vitamin D3 and K2 supplements, which coincidentally, also turned out to may play a role in calcium homeostasis. As for me, nicotinamide and cinnamaldehyde helped a lot I think. But I would still recommend using the supplements tested in people with cyclic vomiting syndrome first before trying out some other antioxidants and calcium chalators.
However, be aware that every substance may come with side effects. So read a little bit about potential side effects before trying out a supplement.
my girlfriend has been battling CVS for over 5 years..I feel so useless during her episodes. I've exercised every possible remedy/ technique to try and reduce her symptoms but they have showed minimal success. It hurts to watch your loved one suffer for a reason you and even they may not know. (also every single doctor blames the fact she smokes weed as the cause, there is NO hard evidence to support this) I hope one day I find out how I can help her the most, maybe even a "cure" of some sort..until that day I will keep searching.
That’s really nice of you to want to help. Things you can do to help are getting her water as needed, emptying sick bowls (if she uses them) & passing her anti-sickness tablets (if she uses them). Other than that, giving her space & letting her rest is all you can really do until she starts to come out the other side of it (& then at that time, she may find it helpful for you to bring her plain foods).
Has she tried stopping the weed for a few months to see if it helps? Weed can cause a vomiting condition in some people (Cannabinoid Hyperemesis Syndrome), so if she hasn’t already, I’d recommend she stop smoking for 3-6 months to see if it helps. & if it doesn’t, the next thing I’d want to look into, even if it’s just to rule it out, would be gastroparesis- which is tested for with a Gastric Emptying Study. I really hope she can find a way to get it under control, as I know how horrible it is
Hi my daughter has been ill for three years she was diagnosed with tummy migraine as a child with many fainting episodes she’s now 22 and her life has been hell she has had so many hospital admissions most times reluctantly but she’s kept in for another a week iv drugs are the only thing that’s helps her doctor has said it’s just psychosomatic we try an age it for a few days until
I feel she’s getting dehydrated she just got her gastroperesis test and they said that’s normal so back to square one she is at the stage her BP keeps going up and down rapidly many fainting episodes if she walks about to much. May I ask have you gastroperesis also? Sometimes if she eats her dinner usually something light if she vomits in the morning it’s al undigested like whole apologies for graphic details but we are so used to the vomiting it’s Normal to us. Keep going beautiful girl your a strong cookie 💜✌🏼as her mum it’s heartbreaking to see her like this x
Hi! I had the gastroparesis test and it all came back normal! My fainting is caused by a condition called POTS though, so you could ask your daughters doctor about that and ask if she can be tested! It’s a relatively simple test that will give you a definitive answer! It won’t explain everything, but could give some answers at least!
Georgina's Journey thanks huni hope you ok I know how hard it is for you many positive vibes your way ✌🏼❤️
@@teedee2283 you’re welcome, let me know if you have any other questions 💕
I'd love updates on this as it doesn't sound like CVS to me(just wondering if its something else) I've had it sense I was a child, and immediately following the episode itself the Nausea goes away. Unless I was previously dehydrated, then the episode lasts all day and progressively gets worse until I'm in hospital for fluid I.V.
At 2:11 I spoke about how I feel better instantly after I’m sick & there’s no long recovery 😊
I want to ask you: Does your feeling of nausea disappear completely during periods when a vomiting attack does not appear??
Everyone is different, but I can have hours without nausea, but not whole days without nausea. If you have constant nausea, I would recommend looking into gastroparesis
I’m about to be 37 and have had cvs since I was 7.. in a episode now.. abort med management.. never knew there were so many like me
Hope it has eased up a bit now x
Hi, I wanted to reach out because I’m really struggling. I’m not diagnosed with Cyclical vomiting syndrome. You had previously suggested I get tested for gastroparesis, I have not yet because my doctor kinda dismissed me when I suggested that. I have trouble after I eat and will often throw up. I can usually handle really small amounts and liquids are easier (lots of ensure.) Bigger amounts don’t go well. Eating most of the time causes me to be in pain. In the past three days I have gotten sick over 20 times. I don’t know what to do. Sometimes Zofran works but not always. I asked my PCP doctor for a referral to a gastroenterologist so I can get another opinion. Do you have any suggestions?
There’s a medication called domperidone that may help you, so you could enquire about that. But other than that, you really need to get that referral to another GI doctor, as throwing up after you eat isn’t cyclical, so that doesn’t sound like CVS. It sounds much more like gastroparesis, which needs to be tested for with a gastric emptying study. However, the treatment for gastroparesis is medications like zofran, cyclizine & domperidone, so alternatively, if you can get those medications prescribed anyway, that may help you. cyclizine is just an antisickness medication, whereas domperidone speeds up stomach motility, so you may have some success with either or both of those 💗
@@GeorginasJourney hi, I brought the stomach stuff up again to my doctor and explained in more detail. She is having me tested for gastroparesis. She said it’s common with autonomic dysfunction. Thanks for the encouragement to keep going!
What if you take anti emetic every day?Would that prevent episodes?
Sadly not, I take an antiemetic before I go to bed every night, but it doesn’t stop me waking up to be sick when an episode starts. Most of my episodes start early in the morning, and other than taking the antiemetic before bed every night, there’s nothing else I can do. The antiemetic probably is helping delay the episodes a bit (as I usually get about 5 hours sleep after taking it), but it can’t fully stop it
What causes CVS and what’s the difference between CVS and psychosomatic cyclic vomiting? Through the chronic illness community I heard of someone who had the latter and ended up needing a feeding tube because of their vomiting. I know this is a difficult topic on grounds for those with eating disorders.
CVS is a diagnosis that’s given when someone has a physical cause for cyclical vomiting, but that cause is unknown. For me, it turned out to be Mast Cell Activation Syndrome. Eating disorders are mental illnesses, so not relevant to this video.
My episodes last 5-7days everyday I vomit the first 5days can’t keep nothing down at all I have had it since I was 18 and stress triggers my episodes and only thing to ease it up is narcotic but hospital never wants to give out narcotic 😩 I’m in Toronto Canada and every hospital and doctor treats me the same when I go to emergency for this
Do you mean cannabis as a relief ?
@@know_how5661 no I have to be given morphine through iv at hospital ... I’ve heard cannabis helps some people but for me it doesn’t but when I do go to hospital they always try to tell me the cause of my episodes are from smoking cannabis but it’s very untrue I have stopped smoking before and had even more episodes then I do when I am consuming cannabis on a daily basis
@@Teestar519 actually all cvs patients have different symptoms and triggers. My triggers usually are sore throat/infection that forms into a flu later on... Then on the very next morning i get up early between 7 or 8 am very nauseous and then it starts to build up very thin saliva in my mouth which i have to hold in my mouth for as long as i can but i start vomiting as soon as i let it go down the stomach... I don't go to doctors instead i get iv by myself and that is the only solution for my problem so far but yes it does not stop it from happening again ... Miserable but i keep myself strong by saying I have to get used to it as it will go away after one or 2 days by itself.... thanks for reading
@@know_how5661 yes I know everyone has different symptoms of CVS I have had it for over 10 years and my younger sister who is 3 years younger has had it for about 7 years trust me I know all about CVS but I’m not sure what in my comment made you think I thought everyone has the same symptoms? I said I have been told by other with it that canabis relieves it for them but doesn’t work for me and that doctors all say marijuana triggers episodes... so not sure what made you think I meant that’s how it is for everyone?
Also if you don’t mind me asking where do you live and where do you get the supplies to give yourself an IV at home?? I *HATE* with a passion going to the hospital but sometimes I just get so dehydrated after vomiting for 5-7 days straight I have to get some kind of fluids into me and IV is only option as I can’t keep ANY fluids or food down when I’m having my episodes as I vomit straight non stop every 20minites for 5-7 days every time and my episodes just come on out of no where I will be fine one minute then next minute my mouth is watering I throw up start sweating perfusovley and then it’s just non stop for 5-7days after that
@@Teestar519 I totally agree with first part of your comment and to be honest i am very happy to find someone who has similar symptoms as i have whenever i get those episodes... "Watery mouth with strong nausea" .
That water is so thin and i try to spit it or hold it in my mouth but it gets down at last and then non-stop vomiting starts...😭... That thin water does not stop coming in till i get something to eat after 1 or 2 days... And i wonder why and where does it come from...
My main triggers are sore/infectious throat and flu...
I can't take antibiotic pills as it does come out quickly and i can't keep it in my mouth due to bad taste...
Answer to your 2nd question:
I do get those IV from a friend of mine who works in a nearby hospital because most of the time don't recommend IV as they don't understand anything about "CVS" infact they just don't wanna believe it... I live in Pakistan btw...
And i didn't try marijuana yet and can't even think of it lol... Its more like committing a crime here in the society...
So i just rely upon IV and most of the time my episodes lasts for about one or two days at most...
Thank you for your time and your story of cvs ...
We will talk more if you have time...stay healthy always
Please reply to me... My feeling of nausea and vomiting is a continuous condition... It does not stop at intervals as mentioned in the CVS... Medications help me recover, but for 2 or 3 weeks, then I don't know why the drugs stopped working and I became sick for about 10 days I suffer from severe vomiting even if I did not eat anything. I vomited and nothing came out of the stomach

Bless you, this sounds so horrible, I’m sorry 😞 go to hospital if you can and they can give you fluids and iv medication which is stronger and works quicker. I’ll keep you in my thoughts
I think.this is what my son has. Every week for the last 6 weeks he has been vomiting for 2 days straight. The first few times I thought it was bug. But now I'm thinking no, it's something else. It's affecting his attendance at school and his education.
You need to take him to the doctors if you haven’t already, they need to investigate what’s going. CVS is a diagnosis based on symptoms and when all of the other tests have come back normal, so they need to investigate whether there’s any other underlying causes before he can be diagnosed with it. I hope they can help him
Immediately after drinking coffee I would go brush my teeth and only recently learned that it was damaging my teeth. I wish my dentist would of given me the wait 20 minute tip sooner.
Jim Jauh-hey I kind of think there’s only so much you can realistically do in regards to food and drink- citrus fruit and tomatoes are also highly acidic, but for most people it’s not always possible to brush our teeth every time after eating them 🤷🏽♀️
And at least you know now :)
Georgina's Journey yeah it’s a good tip though if you can manage it. Also like the new thumbnail and look at that sub count!! Hope you reach 5k before the end of the year. 🙂
Jim Jauh-hey I’m not sure what you mean about the thumbnail, but thanks! That would be a really big milestone for me 😊
Georgina's Journey I meant to say updated profile picture.... sorry 🤭 😂 😆
Jim Jauh-hey oh haha, thanks! It was about time, the last one had been on there for 2-3 years 😂
My son suffering from the pain of cyclic vomiting syndrome 😢😢💔💔 every he experience episodes 😢😢😢 it breaks my heart 😭😭😭 his only 8yrs old.... He took Zofran but its not totally stop his episode 😭😭😭 it so hard for me to see my son suffering from that illness😭😭😭
Hopefully he grows out of it soon or the doctors can find the root cause and treat it better!
Treatment details plz
All in the video 😊
8:29
lm 24 years old.... in the begining l had the same your symptoms But in the last period I got sick every two weeks and for 10 days I vomited within 24
hours even during the night so I don't sleep these 10 days .. I get very tired 😢 What should I do? Search the internet in English

I think it’s time to go to the emergency department at your local hospital for IV fluids and IV antisickness, this sounds horrible, I’m so sorry. Lots of things can cause vomiting so they may be able to investigate for you, keep me updated when you feel able to, im so sorry you’re going through this
Gastroparesis is a common condition that can cause it, but it could also be many different things
Hi i have been diagonsed cvs since 14 i am now 25 mine is triggered by my menstrual cycle and i only get it one day per month for 16 hours of vomiting every 20 minutes ive been hospitalized many times due to it. The only thing that helps is birth control for me. Ive been on birth control for 10 plus years and i would like to get off. How do you work with cyclic vomiting syndrome? Because i need to call out atleast once per month
Hi, I’m on birth control too as it helps me a lot, so I don’t know about coming off it, as I haven’t tried. For me, the only reason I would come off it, would be if I were to try to have children. And I also have several other chronic illnesses, so I am not able to work.
@@GeorginasJourney thanks for the reply i appreciate it!! Yes actually i am thinking of having children thats why i want to get off of it. Last year i stopped taking the pill for one month and my cvs came right back. So awful. 😭😭 anyway thanks for the video!
15 year old:
mine lasts for 6-10 days and comes every 3-4 weeks :(
That is a really long time to be in episode, I'm glad it's only every 3-4 weeks at least. I sometimes feel like hardly any time has passed between my episodes (they're usually every 6 days apart), but they don't usually last longer than 2 days
i just been diagnosed its horrible 😕
I hope you can find an antisickness or something that helps a bit
Try CoQ10
Thank you!
@@GeorginasJourney I made several attempts to post about it but TH-cam kept automatically deleting it. It's a natural supplement. I'm currently taking it for my CVS and the gaps between episodes have gotten longer.
Also you can check out NORD (National Organisation for Rare Disorders) and look into CVS and your other conditions.
@@alexandracooper122 thank you, I actually used to take it before but it made my blood pressure too low, but I need to try it again!
Also try L-carnitine along with CoQ10.
Actually all cvs patients have different symptoms and triggers. My triggers usually are sore throat/infection that forms into a flu later on... Then on the very next morning i get up early between 7 or 8 am very nauseous and then it starts to build up very thin saliva in my mouth which i have to hold in my mouth for as long as i can but i start vomiting as soon as i let it go down the stomach... I don't go to doctors instead i get iv by myself and that is the only solution for my problem so far but yes it does not stop it from happening again ... Miserable but i keep myself strong by saying I have to get used to it as it will go away after one or 2 days by itself.... thanks for reading
What do you mean ‘actually’? This video is my story. I didn’t say everyone’s symptoms and triggers are the same.
@@GeorginasJourney I think something wrong happened here in the comments section ... I was replying to a comment here
How are you btw?
@@know_how5661 there’s two I can think of that you might be referring to- the one of someone throwing up blood- which is not normal and would suggest there is something else wrong, and the one where someone had constant nausea- which literally goes against the criteria for a person to have CVS. So yes, symptoms vary, but those instances are not within the range of symptoms that are typical of CVS.
@@know_how5661 and yeah, you didn’t reply to a comment, you just made a new one
helloo
have you heard of the Superior mesenteric artery syndrome ?
it's a rare syndrome , so usually doctors don't even know about it , it also affects heart rate as i saw in your other video
en.wikipedia.org/wiki/Superior_mesenteric_artery_syndrome
i admit i don't know about your medical history , apologies if this wasn't helpful , all the best wishes for you dear
Thank you! I’ve mentioned it to doctors before but no one wanted to look into it or test for it for me- even just to rule it out :/
Am I the only one who don’t brush my teeth after being sick?
Doesn’t your mouth taste weird if you don’t?
I have CVS too, I nearly died from it. Not the best times.
Have your doctors considered a feeding tube or central line for you to get fluids & nutrition an alternative way (if it was from lack of fluids & nutrition)? & have they looked into whether you could have gastroparesis? There’s a lot of things that can be done for chronic vomiting in hospital, so your doctors really shouldn’t have let you get to that point & I’m sorry that they did (if it was from malnutrition/lack of fluids)
@@GeorginasJourney No they have not, most of the time my episodes are not bad but sometimes they are so that wouldn’t really be necessary.
I was not at the hospital, I was at home and it was from dehydration.
@@maddiefost30 Sorry, I didn’t realise you meant from dehydration. Were you too unwell to call an ambulance or to get to the hospital? If so, I’d recommend coming up with a plan so that you don’t end up in this situation again. Most people aren’t able to drink for about 24 hours with a stomach bug, so in theory, short CVS episodes shouldn’t do too much harm as it shouldn’t be too different to that, but if you’re vomiting for more than 24 hours, you will probably need to come up with a plan for how to get to a hospital. For me, I text my dad or best friend ‘vomiting, call ambulance,’ or if I can’t manage that it’ll just be ‘sick, ambulance’ & because we’ve discussed it beforehand, they know what to do. Something like this would be really good for you to have in place, as dehydration is very easy for hospital staff to treat
I hate this disease
Me too
I roll over and puke in a bowl too there's no moving my partner has fo take me to the toilet or id go in the bed, onsanstron doesn't work for me.
I didn't know about the brushing I've lost 4 teeth
Sorry to hear you go through this too. Have they looked at any possible causes for you, like gastroparesis or something? So glad you have your partner to help you through it. I really struggle so badly on my own.
Hi Georgina I was wondering if you had Instagram and would be happy for me to message you? It’s looking like my 1 year old has CVS and as you can imagine awful to witness and she can’t talk of course I want to do anything I can to help her. So wanted to gain some people diagnosed perspectives. X
Hi Robyn, I’m sorry to hear that your daughter might have CVS, it’s really not a nice thing for anyone. I don’t have a public Instagram account anymore as I had a lot of stalkers and it became unsafe for me. But I’d be happy to answer any questions here x
Thank you much currently she is ill for one day every 3 to 4 weeks I was wondering in the lead up to the cycle how would you explain your symptoms and any tips you would advise for me to make her feel most comfortable? X
@@robynpayne6442 it is different for everyone- some people don’t have symptoms in between cycles and others feel nauseous all the time. It would be really helpful if her doctors can prescribe her an antisickness medication and also for them to investigate it further to see if there’s a cause that can be treated
I seen a video saying Clonazepam helps
I’ll look into it, thank you!
I struggle with vomiting due to menopause. The hot flashes come on at 3 am or 5 am, and I keep a bucket next to my bed.
The vomiting is instantaneous,
you don't know it's coming and there's barely enough time to react.
So sorry you’re going through that, I hope it settles soon. Even though mine has a different cause, it’s similar for me, I have to use bowls as I don’t know when it’s coming