I've had CVS for over 10 years now. I was diagnosed after i had spinal fusion surgery. After the surgery I started getting sick monthly. Worse time of my life. Almost every episode results in a hospital visit, a few times I've ended up in the ICU. In the past nothing has helped except IV pain medications. Lately I've been taking Reglan, Amitriptyline, and Prevacid, it helped for a minute, but I recently had a pretty bad episode. The stomach pain and headaches are unbearable. I have to lay in my bed with complete quiet, even the sound of someone's voice will make me vomit. Each time I go into a conscious coma. I can understand people, but i can't communicate back. This disease has left my family and I scarred. It's impossible to be a mother and a wife. My heart goes out to you and those who suffer from this.
I’ve had cvs for 16 years now I’m 60 in November worst bout I had was 9 days ended up in the hospital for a week severe malnutrition dehydration potassium loss lost 36 lbs in those 9 days almost died from this cvs drs said if I’d waited 2 more days I would have been in very serious condition zofran reglan compazine don’t do much at all worst tome of my life then 2-6 bouts a year can’t hold a job son doesn’t want to help me deal with this now I’m homeless living in a rescue mission for the time being going for SSDI/SSI ..... hope I get it ....don’t wish this on my worst enemy either the nausea is the worst lost 6 jobs in 2 years with months of no work in between this cvs destroyed my marriage family and my life literally my family abandoned me when I needed them the most so I feel for you and know exactly what we’re going through god bless hope you get better the drs told me I have this for the rest of my life being this old no cure just nausea control which isn’t much I think I got mine after my diverticulitis surgery had 18” of my colon removed ever since I’ve had this cvs
I had gastric issues before but nothing like now, after I woke up from a coma on full body life support my CVS Became persistent and swallowed my life whole
I'm a CVS sufferer myself. It's ruining my life. I've had it four years now. And you mentioned about not many people knowing about it, my doctor doesn't even know what it is which is sad really.
I feel both your pain.. I had it since 2011. Would end up in hospital from dehydration and they’d just say I’m fine and let me go. and finally over a decade later they diagnosed me.. stay strong queens♥️
If you are near Pittsburgh PA, Klaus Bielefeldt MD. at UPMC Digestive Disease Center at Presbyterian Hospital was who diagnosed me after years of hell and no diagnosis. IDK if he has since retired or not but his practice is very knowledgeable.
Omg I’m not alone!! Just today I got off a grueling 9 day episode where I vomiting 63 times . NOBODY understands me, the dr couldn’t tell me what it was. Thank you so much! GOD bless you all!
I cried watching this. No one I know believes me when I say I vomit when I'm excited and I used to miss a week of school every month. My main trigger is also excitement which along with the physical pain this illness causes, it also causes a lot of emotional pain. When I was in elementary we would have these assemblies in which the class would sing or my choir group would have a competition and I would be so excited. I would practice for hours and hours on end. However, without fail, every time I would get an episode the day before and I couldn't go. It wasn't stage fright, I did and still do love preforming, I would rather speak on a stage than 1 on 1. I distinctly remember being in my bed, just having vomited, looking at my clock and thinking "Okay it's 3:30, so I'll vomit at 4:00 then 4:30" and like clockwork, every half hour I would vomit. My mom would try to get me to drink water to get rid of the acid in my mouth and throat, and that water wouldn't stay down. I stopped having monthly episodes when I was 9 years old. Unfortunately, two years ago I was going to a concert with my best friend to see our favourite band, and the day before I had another episode. Luckily I somehow only had that episode for a day and was able to go see that concert but ever since that day, I realized that this is something I would have to deal with for the rest of my life. Every time I'm excited for something, I have to be prepared I may vomit and can't go through with that activity. I hate the physical aspect, I really do, but not being able to do things because I get too happy I vomit is worse. I apologize for such a long comment but I've never had anyone before who even knew what it is. If anyone reading this has a friend, or a family member who experiences this, just tell them you're there for them, and be there. When you're vomiting 30+ times a day, you feel gross. Having someone there makes a world of difference.
That’s so sad that you’re friends don’t believe you! But there’s a great community in the comment section of this video who completely understand what you’re going through! The vomiting when you’re excited has to be the worst aspect of the illness as it ruins so many fun things that you have planned! I hope you manage to find a way to deal with it too ❤️
Has anyone become, Badly hyper sensitive to medications?? Or is? My applogies, I'm not trying to intrude, Sleep??? Anyone? Anyone? Between, the being so cold You run out of hot water, In the shower to keep warm....or try the tub what ever could or would stop it. The hotter the water the more it helped. That's if an hour before, My ex now but at the time She tell you lol SWEAT!!! It's not RIGHT, to literally feel the heat rise and your cookin from the inside out...to your face!! Hair just soaked like you got out of a pool...your face goes lobster red Having to run the tap and cool my skull off... Oh Lose weight!!!!!????? I was 245 to 163pounds and loss of muscle mass, I'm sooo pissed it has made me seriously allergic To pain meds of any kind.. Nothing.. because words Are obsolete to try explain The type of pain levels. Passing out in the garage Dislocating 3ribs almost center of my chest, off the bench vice, and a blueberry eye.. While waiting for back surgery, I injured at work. Then all this torture started. Anyway i opened my big mouth way to much sorry. People see it and help as best as they can and that's even harder, When it's a bipolar jeckal Hyde with 10x the guilt to Feel because of it. Not even having the strength to lift or move When it's bad.. Couple of days to 2weeks It lets you know and you hope you can take another bout.. Or 6 emerge by ambulance From extreme dehydration and nausea Sleep deprived and food? What's it like?? Food?? Anyway. If you actually read this This far??? Thanks. Take care
Been dealing with CVS predominately since I was 18, but I can always remember having a sensitive stomach/stomach issues growing up.. today was day 3 in a row out of 4 this week being sick :( it’s been a really rough couple of days, but I can’t explain how much finding this video means 😭 having people you can talk and relate to truly is everything in times like this Xx
I've had cvs for 10 years now since I gave birth to my son, which was an emergency c section. It's awful. I was hospitalised every month for at least 4 days for 7 months in 2020. The last bad episode I had was last December, thankfully, but I caught the flu, and an episode started. I vomited 100 times in 48hrs it was horrendous, I didn't eat for 9 days, then well apart from a few spoonfuls of soup. I wish you all the best. Its good to know you're not alone.
I literally cannot thankyou enough for taking the time to explain all of this.. After 5-6 episodes of my little girl randomly keep throwing up on repeat for weeks on end, her losing up a stone in weight each time, losing the will to even be able to speak to us. (when she's usually non stop singing, dancing and wittering for 10 hours per day). We have had her to the doctors dozens of times, and chronic constipation was her initial diagnosis, and she spent 6 months on strong laxatives.. Was given the all clear by the peadatritians at hospital, and started throwing up again the very next day. At this point they took us seriously, and she was taken in to our local hospital, transfered to Manchester childrens hospital, had all the scans you've explained and a drip from her nose to drain out a huge bag of bile from her tummy. So this time her usual 3 weeks of sickness has been shortened to 10 days. She was only released from hospital 2 days ago, and though she drinking plenty, has only had 6 quavers to eat in the last 8 days. She's 6 years old, and despite being extremely bright for her age, can't explain any of what you've Just described to me. We sat and rewatched it together, and she said muumy, this lady sounds just like me... Your just an angel, is all I can come with right now.. And can never thank you enough for solving the nightmare we have lived this past 2 years, getting to the point Im at this very second where my babies mystery is solved.. God bless you, and I wish you sppedy recovery. Please also give your mum a hug as I know exactly how she's felt going through all of this xxxxx😢❤️❤️❤️❤️
Yes girl please keep spreading awareness!!!! I am now 36 and its getting harder and harder for people to understand this is real, as ridiculous as it sounds (for me my biggest trigger is my menstrual cycle) but literally nobody ever could fake this!!!! Sending you love!!!!!! Be strong!!!!!!!
Same here! Been sick at least a week around my period for the last three months. It isn’t always a trigger for me but it’s linked with ptsd making it hard to know when it will trigger me
Amazing video! There aren't many videos on CVS and you've made an amazing step by doing this. It's been two years since my last CVS attack (July 2016) but there are times where I get little episode. Waking up feeling sick but I more or less get migraines instead. My doctor put me on Ondonseteron, an anti sickness pill, and beta blockers which reduce anxiety to prevent attacks. I find that hot weather, anxiety, excitement and hormone levels has contributed to having CVS. But I'm managing a lot better. I hope that helps xxx
I get nausea really badly first thing in the morning if I lie on my right side, I don’t know if this is common among all sufferers or not. Totally agree with all the things you’ve said add to it, when we first started having this really hot weather in England I was really unwell! Really great to hear you haven’t had an episode in a few years! Yeah I’ve found there’s not many people talking about it online so thought I’d take a step to make it a conversation among people xx
Summer was horrible. I had a total of 3 migraine instead of CVS attacks, but I got through them. I've tried the Facebook CVS groups but I've found they're either middle aged or parents on behalf of their kids. There is CVSA but there's only a once a year meet up and there's little more than that. Would be brilliant to start an online group for young people with CVS x
I've noticed that hot weather also really makes mine worse! I wonder if this is a common thing among sufferers. I live in a cold area of the US (Northeastern area) so I've never taken to warmer climates in general, but with lately summers have gotten more severe and lasted a lot longer.
Miss Spaz it would be interesting to know why it affects it! Mine only tends to be when it gets weirdly hot in England although I did have a small episode when visiting the Grand Canyon back in April as it was a really hot day!
When I was diagnosed with CVS I didn’t even research it since I had been given so many diagnosis’s that didn’t really fit me so I thought this was the same. Last week I watched a lecture on it and I’ve never felt less alone in my life. I spent years blaming this on myself and telling myself I was just crazy and making myself sick but knowing other people go through the same things as me... I’ve never had such a validating feeling. I cried when the lecturer described the criteria, because I never thought anyone could understand, especially getting sick when I was so excited for something, or that could have a diagnosis at all. I’m so weirdly happy right now, thank you for sharing your story
Was diagnosed with this today, was tested for everything else beforehand. Our symptoms are really similar. I never had these episodes when I was a kid, I got my first one right after my 21st birthday. It'll last about a week to a week and a half and stomach and back pain are a HUGE part of it. It starts with stomach pain that feels like period cramps. I don't feel nauseous right away, that takes about 2-3 days to set in, and then vomiting doesn't start until about day 4 or 5. I get really dehydrated and lethargic, and I can't get any sleep. After a little more than a week, the pain and vomiting slowly fades away for about 3 or 4 months. I'm so glad to finally have answers and your story has brought me some comfort. I thought that there were very few people who got sick like I did, it's comforting to know that there are many others out there who know how I feel. Thank you for sharing your story
So I’ve had this since I was 17 and my boss just figured it out. I run a busy cardiology office and let me tell you… I’ve been suffering with so many episodes it got ridiculous. One of my doctors sent me an article on CVS and promptly diagnosed me. He prescribed 2 supplements. L- carnitine and high dose Co-q10. I have only puked 2 times in the last 2 months on the last day of my period. To say the least this is an absolute miracle for me. Good luck
I've had CVS for about 3 years when I was little. It was horrible, but I'm so thankful that it stopped naturally. My heart goes out to those who are suffering right now
i'll tell you what helped me although you may have heard these things before, maybe i'll tell you something that could help. 1. hot baths/showers 2. guided imagery/hypnosis 3. horror movies/very intense distractions to get my mind away from the pain 4. amitriptaline 5. paraxetine 6. sometimes light pressure on my stomach/touching my belly, but sometimes i hate touching. also definitely a no to other people (like my mom lol obviously not strangers) trying to rub my belly to soothe me. its a toss up on that one. hot baths/showers really are the number one.
@@rachelarnold5585 Totally agree with #1. Haven't tried any of the others. I do know if i take ICE packs and place them around my neck from each side it can help alleviate an episode. Same with splashes of cold water to the face or poured over the back of my head in a sink. There's something about the shock of the cold that gives me brief breaks from it. Sometimes long enough to try and rapidly fall asleep sitting up in a corner somewhere in my bathroom just in case. Also fans blowing strong air helps. I do know that once I start breaking down into the full body shivers and shaking, might as well get me to the hospital. I've been hospitalized in ICU for 3 to 8 days at a time. One time I was there for almost 3 weeks. Regardless to say, being a single father of two teens, they've had to watch me suffer thru this and even place emergency calls. Breaks my heart when it happens. Just wish there was a cure. I had one doctor say it might be Hpilori, another say it's gerd, another say ulcers.. soo many different diagnoses. Then my last episode which was a few months ago, this new doctor at the ER handed me some papers asking if I had ever heard of CVS. After answering a few questions, he was positive that it's my condition.
This comment section and your video is incredible. CVS is a very complicated and weird syndrome and I never see videos like yours about it. Thank you so much! I was diagnosed over a year ago and this helps alot
I've had CVS for 60 yrs. of course the diagnosis came in the last 5 yrs. It's a terrible disease. Sometimes the nausea is so extreme but I can't vomit and feel like if I could it would be so much better. I can go two years in between episodes. My triggers seem to be the same as migraine triggers and the doctors think the CVS is abdominal migraine so that makes sense. I really feel for anyone who has this.
hearing somebody my age talking about this FINALLY makes me feel so much better. keeping a job is difficult, getting people to take you seriously is difficult, school is nearly impossible, but i cant thank you enough for talking about it.
Thank you for the content! As someone who lived undiagnosed with CVS for 15 years, it’s great to have someone like you with a voice who can help those who may not know what the symptoms or episodes may be. It’s terrible. I wish everyone who has it can be diagnosed early thanks to people like you!
yes thank you for bringing more awareness to CVS. i got diagnosed about a year ago and this video was soooo comforting for me. even the comments on this video !! thank y’all for making me feel less misunderstood. i hope everyone is doing okay ❤️
This video is so helpful, I am 15 and I think I have been suffering with this for around 5 years now! It feel so great to hear someone else talk about what I go through and it makes me feel like I’m not just this stupid person that gets sick for basically no reason, it is such a wait off my shoulders thank you so much for this video!!! ❤️
I was diagnosed when I was 16 and it literally took over my life. I used to have an episode every few weeks (they sometimes lasted about 48hrs), go to hospital and spent a week or so recovering. Just the absolute worst. It's so hard to explain to people the intense nausea and horrific pain that comes with it!! I also find sound very overwhelming when I'm in an episode. I feel like I can't talk to listen to people because it's so so uncomfortable. My main triggers tend to be lack of sleep and intense emotion (like excitement or sadness). It was so hard to think about how I was going to have to adapt my life plans to fit around CVS. I was considering not going to University, staying at home and trying to come up with a plan B. On top of that, I remember feeling so unrelatable to my friends, feeling like I had to constantly validate why it was I had to cancel plans (I actually wrote a song about it on my channel if you want to hear it haha it's called Headspace). But! I'm 20 now, studying at University and so much healthier. I suffer with mostly migraines now (having one right now haha), which can sometimes be intense but nothing like an episode. I don't know if this will help anyone, but I have found Buscopan has absolutely changed my life. It's a IBS medication (I don't have IBS haha but my GP thought it might help) that you can just buy at the pharmacy. The majority of the time, it completely relaxes my stomach muscles before they somewhat overdrive into a migraine. Always carry it around with me! Thank you so much for sharing your story. It means a lot to hear someone who has been through the lengthy diagnoses process and has experienced the syndrome. Reading everyone's comments is so amazing too. When my CVS was really bad, my Aunt used to tell me to always go at the pace of my own body. It's something I tell myself over and over when I know that my body needed to go at a slightly slower pace to those around me. I can go at my own pace and that is okay. Hope everyone is staying well 💛
Your aunt’s advice is so good ❤️ I was really uncertain how I’d cope at university too, like you, but I’ve just graduated and my CVS seems to have got better each year thankfully! I’ll definitely be checking out your song when I’m watching RUclips later ☺️ xx
I am 49yrs old & have just been diagnosed with this, I have had 2 episodes in the last 2wks & I have had to be hospitalised on both occasions 😭 it’s horrendous. And even though I am a nurse myself I just don’t see a way out of it. I am usually such a healthy person 💔
Are the migraines u get a lot more better as can u like do say to day stuff cause I haven’t vomited in like a year and I don’t get headaches as much now.
I’m just coming out of an intense episode. I am ULTRA lucky that my father is a diagnostician. But it took us a couple years to figure this out. This video is amazing and relatable. Thanks so much for sharing. I don’t know why, (and not that I would wish this on anyone) its nice to know I’m not alone. Because in the middle of an episode, I literally feel like I am never going to make it through. Also, ironically (I’m much older then you) , but it started on the night of my birthday (aug.8th). Anyways, you are awesome, glad I found ya!
My first episode was 4 days, I weighed 190lbs and after those 4 days I weighed 125lbs (I’m 6’2) 7 years later I still only weigh 140lbs. Idk about some of you but my body starts to produce dark green acid than later blackish acid once I’ve been puking for over a day or two. (I’m heaving multiple times per minute when I’m conscious.) Forcing myself to sleep is the only way I can break the flare up/episode. I get proscribed promethazine, I hate how it takes me out of my head but it works alright for making you unconscious. 7 years of fighting to stay off disability and actually make something of myself. Idk how much longer I can deal with it but for everyone else dealing with this hell, keep fighting! Stay strong! & Stay relaxed!
I was diagnosed last night and just got out of the hospital for CVS thank you so much for sharing and helping me understand what it is im dealing with now. I definitely will be keeping up with you and this channel!
I've had cvs for 6 years. It's cost me jobs from missing so much work and it's really effected my life. Thank you for making the video. Makes me feel like I'm not so alone ❤
Honestly, this is so relatable and such a relief to find someone online who has actually experienced these episodes (not that I'd ever want this to happen to anyone). Every time I mention this condition to people, they always ask me to say it again. Having people question my illness as well, because it's so unknown, is incredibly frustrating. I've been having less episodes of late, but it has really affected my life for the past 4 years. I'm glad to hear that your condition has improved since taking this new form of medication - all the best x
Hey! Thank you for this comment! I’m glad my video can help you in some way! And yeah I think the people questioning my illness has been the most frustrating for me too, especially as a uni student when Drs have dismissed me because they think I’ve just drunk too much!! Hope you’re managing well with your CVS ☺️
@@KatieMay7 thank you for responding 😊 hope you're doing really well too - I really feel like not enough is known about this condition within the UK - I actually took part in an interview for my local newspaper to discuss this condition and I got a message from my interviewer's manager, asking me if this is a real condition, because he's never heard of it. 😑 But from that published interview, a US doctor got in contact with me and gave me advise on how to manage it 🤷♂️ so, ups and downs, really 😂 x
I know it's an older video but thank you so much for making this. I have been dealing with this for the last few months and it's just good to know that im not alone.
I’m so glad I found your video! I have been dealing with vomiting and nausea for about a year now. My last trip to the ER (1/25/2019) 2 days after my birthday, I was diagnosed with Cyclical Vomiting Syndrome. My past bloodwork showed all slightly elevated levels but nothing enough to get me antibiotics or anything. I thought I was dying! I was wrongly diagnosed with pancreatitis and gastritis which have many similar symptoms. But my episodes were always for different things/foods/situations. I lost 40 lbs since January 2018. It’s been a crazy journey but I hope to get more control of my triggers. Hope you are well dear! You are in my thoughts!
hey there, do u mine sharing how many tests u had to go through before getting the diagnosis? i hv had several tests done so far and all showed up fine, and i'm starting to think it might be CVS
Roxanne D I Have this I had it since I was 12 months old I’m 14 all most 15 and it got better I use to have to go to the hospital every month but it got better I was told I had it 6 years ago but one thing I can’t do is sleepover at friends house or I get sick and have to go to the hospital
Yap M.C. I’m so sorry I didn’t see this til now. I went through multiple rounds of bloodwork. I also had an endoscopy and a ct scan. Multiple ER visits until they assumptively diagnosed me with CVS and linked it to stress and marijuana usage! I actually started therapy for this and has become somewhat manageable! Hope you find a diagnosis soon and can heal and treat your stomach issues 🙏🏼
Bill jean Hehe I’m glad it has gotten better for you thank you for sharing. Mine has become manageable but still am uncomfortable often! I suppose it’ll be around just gotta keep myself as healthy as possible! Hope you are continuing to manage and do well
Since I was 2 years old, I started to vomit a lot and lose weight. Shortly thereafter, I was diagnosed with CVS. I never understood what it was and never understood why I was taking medication. CVS is very very uncommon ... Today, I am very surprised to see that I am not the only one to suffer from it !!! Because I was diagnosed at a very young age and I got in a treatement earlier, my doctor told me that I will most likely be able to stop my medication once and for all. This summer I plan to stop everything. This time, I will no longer be the weak I was before. I won't give up !
I'm so glad I found this video as I suffer from CVS as well. I found out 7 months ago (when it all started - baring in mind I'm 19) and I've had 5 episodes since... near enough every month. It's an incredibly debilitating illness and when I say I suffer from it I really do as it's so so painful, people just don't understand and think I'm 'overreacting' or saying I have 'a low pain tolerance' like no it's genuinely extremely painful and just plain gross. The confusing this is I have no idea what the trigger is, they're still trine find that part out! Thank you for sharing this, we're stronger together💖
I completely get where you are coming from! Episodes are so horrible and as most people don’t see you in one they can never really understand. Hope you are doing well at the moment! 💕
I’m so happy I found this video, I was just diagnosed with CVS after years of my doctors telling me they couldn’t tell me why I was always vomiting.knowing I’m not alone is an amazing feeling
I'm almost 50. . male..... Been dealing with CVS for very long time.... I used to search for you guys too talk and trade information. But hearing your stories. Like this.. get my emotions up. and you know what happens.. today I'm sticking with it . With my bucket next too me. .. I want and need to talk to you all... .I want to help where or of I can. And I need you guys badly too.
Hello, I’m a man from the states and I’m kind of in the middle of diagnosis, been in the middle of weekly sometimes daily attacks for about the last year and a half, thanks for the video! It’s nice to know I’m not the only person spending most days nauseous and in bed lol
I’ve only been suffering with CVS for a year, but I can honestly say it’s ruining so much of my life. I’m currently up in the middle of the night on day 7 of symptoms - my longest episode so far. I have a 7 year old and a 3 month old, and I’m honestly struggling to cope with this illness. It’s not just physical pain, it’s the mental exhaustion too 😔 sending love to everyone dealing with this 💙
Thanks. I been getting these episodes of vomiting all night long and my mom gets worried about me and when I start throwing up I can’t stop or stay still and I lost a lot of weight from it and now I’m having trouble gaining my weight back and I been feeling cold and sweaty and shaking and lethargic and it hurts my stomach and throat and my head. It hurts my whole body I think I got CVS too
wow this is crazy, i was just watching your moving in vlog as it came up on my suggested tab & i saw this video, I HAVE THIS SYNDROME TOO! I’ve never met anyone with this, this is amazing!!
That's such a weird coincidence! Yeah, I've never met anyone else in person that has it! But I've had quite a lot of people reach out since posting this video so there obviously is some of us in the world?! Hope you're doing okay xx
I have had CVS since 2011, diagnosed in 2013. Rather sick at the moment, trying to focus, getting breathing under control, trying not to freak out over the ick in my stomach... Zofran dissolvable taken, legal for medicinal marijuana so partaking in medicating. I wish I could could banish this from us all!!!❤️
@@ejnicks5644 Be careful, pot is known to cayse hypermesis which is just like having CVS. In fact the symptoms are identical. I smoke pot to help also, but have had doctors blame my condition on my marijuana use, eventhough i didnt start smoking till I developed this condition. Goid luck to you!
Been dealing with it forever apparently. Was finally diagnosed with CVS at the age of 37. Went thru all the same test as you. My episodes got so bad that it resulted in serious damage to my teeth as well. It has long lasting effects. And yes moments of happiness can trigger events. I find taking something extremely cold and placing it around the back of my neck will help to fight off on coming episodes. I find that showers can sometimes help defend off an episode.
I know this is an old video, but this is the most accurate description of how CVS affects me. I'm quite a bit older and mine didn't start until I was in my mid-30's and I'm now 47. I've had my gallbladder this and multiple esophageal stretching due to the scar tissue from the stomach acid. It has also destroyed my teeth for the same reason. I self medicated with alcohol for the depression that went along with the CVS. I now have live issues due to the convocation of the meds and my alcohol abuse, although my cirrhosis is thankfully not considered non-alcoholic related. I have since stopped drinking completely, improved my diet and lost 150lbs in the last year or so. My episodes have become less frequent, less violent but oddly longer than before. Thank you for helping bringing awareness to this and for others to learn from some of my mistakes. The road before me is very scary, but I'm FINALLY doing the things I need to do to help my fight. I might have 5 years left or I might have 25, but I've finally chosen to fight for the latter. Please feel free to IM me if you have any questions about my meds and positive coping mechanisms that trend to work for me.
I just got diagnosed with CVS. Mine is very different. Vomiting only occur when I exercise so I just don't. After a while it started causing me to vomit whenever I leave my house. My parents think it's anxiety or overthinking and forces me to exercise to “beat" this problem and I end up vomiting so much it's just acid. Vomiting also does not stop the nausea and my nausea occurs everyday. But holy shit vomiting 20 times is crazy. I had my o levels which is this year and luckily I did not need to go to school a lot as most was online school and I did not need to leave my home to vomit. I was vomiting nearly 10 times before every paper due to intense stress and nearly missed my papers. I managed to pull through but I do not think I have given my best efforts. Knowing that someone else also has what hell I am going through makes me feel not alone. Glad you made this video.
I know exactly what you mean. I have been diagnosed just a couple of months ago due to being under a lot of stress and ended up having to go to the emergency room. I think it would be great to have a support group or just people I can talk to about my experiences and what I’ve been going through. Thank you so much for telling your story❤️
It hit me at 43... I'm 47 now and diagnosed year and a half a go. It is a battle holy!!! Did you have severe chills? Or get Them? Cause I did terrible and Then crazy sweats too... WATER!!! COULD NOT TOUCH IT... The dehydration and nausea and it never stops. I'm so sorry that you suffering this. Thank you for this video, I was unaware of such a illness and it changes lives. Mine is. Stay strong. Great video.
I’ve had CVS since I was 6, and I’m currently 22. I always have to go into the hospital for IV fluids and meds whenever I have an episode, and my episodes last at least 2 days. I usually stay in the hospital for at least a day after an episode so I can gain my appetite and keep down food. I’ve also had an upper endoscopy done plus an MRI on my stomach and ultrasounds. CVS is definitely a spectrum disorder, which makes it more difficult to treat and do research on. I still suffer from frequent nausea and headaches/migraines from various triggers that almost always lead to an episode. Viruses and colds are one of the strongest triggers for me with my episodes. Thank you Katie for sharing your story and raising awareness on it.
It’s crazy how close your story is to mine, I even had an attack when I had my endoscopy it was so bad, even tho I’m diagnosed and on medication I still have attacks but they aren’t as bad, I do notice from Er visits that pain medication will basically end an attack about 1-2 hours after administration. I hope you get yours under control!!!
Thanks for sharing Katy. I’ve had CVS for around 12 yrs. it started when I was 38! It’s a miserable and misunderstood condition and it really helps to not feel alone!
I have CVS and it sucks. I'm glad to know somebody who goes through the same stuff as I do. I have a dog that is kind of like a "service dog". What he does is every time I go into an episode he lays by me, like he's protecting me or telling me that everything will be okay.
Hi, I loved the video very close to home hearing that others are going through the same as me, I also suffer with this illness since I was 11 but was also not diagnosed until I was older after many tests later and still have episodes to date. My triggers are excitement over new things and even holiday. So most of happier things in live have been ruined because of my illness. But I am a lot more aware of it now and how to cope with it. Thank you for the support of the video.
For seven years doctors have been doing testing and have given me so many medications that have never helped. Last night, I finally found the cyclic vomiting syndrome. I’m making an appointment with the the doctor to talk about this with them. This has disrupted my whole life and to finally have a name finally... it is the biggest relief that I have ever had.
Thanks for sharing this. It really feels good to hear I'm not alone in this though I'm terribly sorry you have to deal with this too. I'm a 54 yr old female. I've been having this since at least 2004. (2019 now) My episodes are a little different so I wondered if this was even what I had. Mine come on usually in the evening with a painful tingling sensation in my limbs. It can be triggered by movement or if I twist my neck in the wrong way. Sometimes a headache. For years I just thought I got food poisoning a lot. My body felt toxic and dizzy. That's the worst and most dramatic symptom, dizziness with nausea. So freaking painful. When I start throwing up I'll throw up every 10-15 minutes for 4-8 hours. I have to lay still in a dark room. Any movement, even of the air from someone walking by or talking will bring on the nausea immediately and I won't get that 10 minute respite. I've tried everything. Hot showers, anti-emetics, breathing... I've never been able to stop an episode. I discovered compazine which I just got and haven't tried but it's a suppository so I'm hoping it will knock me out. That's what I need. To be knocked unconscious and when I wake up, it's gone. I have narcotics but I just throw them up. It still takes me 3-4 days to recover. I feel queasy with exertion. There's a service in my town where a nurse will come and give you an iv. It costs over $300 so it's crazy expensive but it can cut my recovery time down to a day or two. I've only had one episode in 2019. I've started exercising in the morning and the evening. Not massive exercise but stretching and yoga. Every day. I eat well and I meditate to help with any stress. It seems to be working. But my anxiety around it prevents me from going far from home. I've had episodes in the most humiliating places. I spent 8 hours on the floor of an airport bathroom. I spent 10 hours on the side of a road, 30 minutes from home, too dizzy to drive. I was on a bus trip once and .. the embarrassment. I was at a meditation retreat two different times and had an episode creating quite the drama. It prevents me from going anywhere anymore. I have to work less in case I can't fulfill my commitment. I make less money and live on very little money. I just cannot subject other people to this every again. It's too painful. I hope to one day go long enough to trust I won't get another episode and get to live a little again. Oh!! I discovered something. Cantaloupe. If I eat a small bite of cantaloupe between throwing up, the next time I throw up it won't be as gross or painful. It has some soothing properties and (sorry to be gross) it's not so bad coming up.
My episodes are so severe I end up in hospital every single time. Can’t hold down liquids, food, medication, anything. Have to get everything through IV and even getting strong anti-nausea medicine through the IV causes me to vomit. I stay in hospital for 5 days or more, after I get out of hospital the nausea stays for up until the next episode. I can never escape it, I have an episode each month. It’s causing my anxiety and fear to rise extra which isn’t helping my CVS
Fellow CVS warrior, you go girl! I'm in N.Ireland and get hospitalised quite often and I'm losing my teeth now as well I'm almost 30 and had this since I was little it's something people don't think about also unable to hold down a job, cause I always get nervous starting a job
Hey! Thanks for watching! Yeah I couldn’t find too many people talking about it online when I was diagnosed but since posting these I’ve seen just how many people it effects! Hope you’re doing well x
i'm really sorry you had to go threw this and it took them so long to diagnose it. As someone who has been diagnosed with CVS for as long as i can rember. I know just how hard it can be to live with this. I'm glad you had people who support you and have been helping throw this. i hope this summer is great and your stay in good heath so you can enjoy it. :)
I was born with CVS and have to go into hospital ALOT for it because I sick up blood. I get so angry at myself for it and I have many symptoms and triggers. I HATE IT!
I HAVE THIS TOO OMG👏👏 I have had this for around 4 or 5 years now and randomly decided to search it up. I take medication daily and it really helps but in certain situations its hard to deal with and SUCKS when I feel symptoms. I have learned how to manage and deal with it for the most part but have never seen anyone else with my condition. When I first got it everyone thought it was food poisoning. I am definitely checking out your channel! (I got it was I was 11 or 12 and im almost 16 now!)
Thank you for this video and sharing your experiences. I don't know if I have CVS, I've only had a few episodes that rise to the duration and intensity of what you describe, (had to go to the icu in 2013 because the constant vomiting created air bubbles between my lungs and chest cavity). I generally have more of the hangover type vomiting but it occurs almost every day I have any sort of engagements or responsibilities, even events I'm looking forward to. There was a period where I almost got into multiple car accidents from puking episodes starting while I was driving on the freeway. I have a decent amount of hypermobility in my hands as well. My thumb war defense is literally unstoppable. I had gotten so discouraged after multiple endoscopies and colonoscopies followed by shoulder shrugging and my symptoms not abating I had just given up. Today I finally got tired of it when having to postpone seeing an old friend in the wake of the death of a mutual friend because of this bs. I'll take this information with me when I'm at the doctor the next time. Thanks so much.
I had CVS from the time I was 3 until I was 18. I got lucky that mine was the childhood version. My sister had it as well. Both of us would get extreme vertigo during an episode and were basically unable to see. Excitement or anxiety were my biggest triggers. Extreme light was also an issue. We would vomit regularly for up to three days followed by another week or so of vertigo. I missed a few birthdays and Christmases. There was no diagnosis for CVS when I was a kid so I had to go through a lot of testing and faced a lot of doctors who thought I was making it up. I'm so happy that you are contributing to building awareness and community around this issue. I hope you find treatments that help you. I was on Paxil and Naproxen when mine stopped. These are migraine treatment and antidepressants. I'm not sure if that stopped it for me or if it was just adulthood. Best of luck and wishes in your treatment.
Katie thanks so much for this. My daughter is 8yrs old and over the past months she keeps having vomiting episodes followed by very saw abdominal pain and severe headaches. It's now happening almost every 2 weeks. Breaks my heart seeing my daughter go through this - she now gets so bad that she gets hospitalized and put on drip as not even water stays down. Our amazing Paediatrician in Cape Town has just diagnosed her as all her symptoms link to CVS :(
Thank you for sharing. I have suffered many years with this. I am sure I don't have to tell you how frustrating it is when people/doctors just dismiss you. My second endoscopy through me immediately into an episode as well. Bless you and thank you again.
That’s okay! Yeah I find only the people who see you throughout a whole episode truly understand and won’t dismiss you. Other people don’t really understand which is why I made this video! I’m glad you enjoyed it ❤️
I had it from 15-26. I am 5 years free of bouts. I hope you all heal too. Finding God is what I believe healed me. My anxiety, illness and vomiting all gone when I gave myself to him.
I have suffered with this since I was born. I take a few medications for it. I take a migraine medicine that does keep it at bay most of the time but I do have break through episodes every now and then. My triggers are poor diet, poor sleep and anxiety. Of course I have IBS, adhd and anxiety. It's terrible to have three they trigger eachother. 😕 hardly any doctors know what it is. I got lucky and found a doctor that knew exactly what it was. I'm so thankful he gave me a little of my life back. I'm 35 and I've lost so many things to this syndrome.
i started having vomiting episodes in elementary school hoping i would grow out of it. i’m 20 now and it’s only gotten worse. it’s so validating to see others with the same experiences
Hi Katie! Great video. I also have CVS and for the last two months have been on the mito cocktail. Its helping me some too. I'm also on nortriptyline 100mg and omeprazole 40mg. Prior to taking the cocktail, I was afraid to use restroom in the mornings, a bowel movement would turn my saliva into slime, then stomach pains, nausea, panic, etc...then vomit. once i vomit, its a 20-24hr episode no matter what. i force liquids (ice tea) to ease the pain then vomit that out so that im not vomiting bile. Then rest in between vomits. I refuse the hospital because they use zofran to stop nausea. This drug prolongs my episodes from one day to three. Every time I've ever used zofran, this happened. So rather then aborting an episode with that drug, id rather get through just the one day. Since taking the cocktail, im not afraid of the restroom. My saliva does not turn to slime either. I made it 2.5 months without my usual monthly episode. If I hadn't been pushing myself to get up earlier and earlier each morning while hunting, i probably wouldn't have had that episode. So stress, anxiety and excitement also trigger me. I didn't start having monthly episodes until I was about 50. Prior to that, It wasn't happening often enough to be able to relate to any one thing, just vomiting was always extremely traumatic for me. Once it started happening monthly, it only took my doctor two-three years to mention CVS...lol... Now that i've read about CVS I was able to accept it and start looking for a cure....But that's not possible either. However the mito cocktail helps about 70% of sufferers. I can do that too with my thumb, I've never heard that before hypermobility had anything to do with CVS thats weird...lol
Brent Beers that just shows how much more research we need to do about this disease. Zofran is a life saver for me whenever I feel an episode coming on.
What is a mito cocktail? I had a severe episode and I was in the ER and they gave me zofran while I was waiting to be seen and it did not help at all. It helps for my minor episodes when I feel sick in pain from anxiety but when it's severe like when vomiting, it doesn't help keep it down al all.
I was diagnosed two days ago. I have been suffering for at least 3 years. I’m just glad that I know that I finally know what has been making me sick. TFS
I've had this since I was about 4. The worst spells was when I was around 16. I went down to about 100 pounds, and I am five foot nine, so that is really light. Someone finally gave me some meds to help stop the MONTHS of retching. I'd stopped eating so I wouldn't throw up. It was awful.
I just watched your video and nodded all the way through it my 14 year old daughter has started having the episode's 4 weeks ago It comes every weekend at 6am in the morning xx
I have Gerds but also have felt over the last few years coming up on my 21st but yea intense uncontrollable vomiting an it causes me hard times to breathe as well. Thanks so much for sharing your story.
My baby sister who is 6 years old has cvs... shes currently in an episode. I'm so glad we can see this video and see other cvs-ers. Thank you for posting this video.
Hi katie, I hope you are well. I just wanted to say thank you for doing this! I have a telephone consultation with a gatreology specialist in 10 minutes and it's been mentioned that they think I have this. I will be subscribing and following you, thanks again its good to not feel alone 🥰
I’ve just been diagnosed after a very difficult few months. I went though the phases of throwing up every day every meal and the doctors numerous times tried putting it down to me having bulimia and an eating disorder - which I knew in myself was not true! Finally when I got diagnosed I was sad but somewhat relieved. I’m in 6th form now and have the same problem as you with not eating food in school as a fear. I’ve missed a lot of school which had now lead to me having an excuse when applying to uni, but something I’ve not heard of too much is how much it is impacted by stress. I’ve gone through a lot of stress so I am now under a clinical physiologist to help with CBT to help me when my episodes come through. Also, my episodes always make me hospitalised monthly being out in w drip but I guess that’s just part of having the illness I guess🤷🏼♀️ glad I’ve heard someone else share their experience in 6th form especially xx
Hey! So sorry you’re going through this too! Glad you’ve finally been diagnosed and can start working to find a way to manage your CVS! Sixth Form is definitely stressful and it added a lot to my own CVS but that’s amazing that you’re working on CBT as I definitely think working with a therapist helped me lessen some of my own symptoms ❤️ I hope you’re doing good at the moment xx
Proud 800th subscriber 😊😊😊 I came here to listen to other people's struggle with the illness, as I have it as well. My counselor recently spread the rumor that I'm faking and it got to my principle. He has been rude towards our family ever since.
Ahh love this! I suffer from it, i was rushed in and out of hospital from age 7-18 due to it. I haven’t been there since, thank God. I still get fainting episodes time to time though.
I have CVS too, just had my first episode in a month this morning, was feeling pretty upset about it and was happy to see other people who can talk about it and who have it too. Mine is abdominal pain and vomiting every morning for a few days or weeks. Stress and my period can trigger an episode as well, My endoscopy was fuckin terrible too! really enjoyed this video!
Really sorry to hear you’re going through an episode! Hope you’re doing okay now ❤️ It always helps to know here’s other people out there who understand too! I’m really glad you enjoyed this video ☺️
I was diagnosed after I had a bad reaction to marijuana. I’m 20 and this was two years ago and it has honestly been the hardest thing ever. Just today i had to run out of my classroom (i work at a preschool) because I could not stop gagging and retching and ended up throwing up in the sink. It just feels never ending :(
I'm really glad someone made a video about this I've had CVS since I was four years old and I always had to go to the hospital and the only thing that would help was Valium otherwise I would vomit for 24 hours I always thought I was the only one who had cvs and for years I didn't even know what I had and it was really hard in school because of how many days I had to miss but thankfully at the age of 13 it stopped I'm so glad I don't have to stay at the hospital for several hours anymore and I used to get it every month but thankfully over time it was slowly less than every month and I got better so have hope and maybe you'll get better soon too anything is possible I never thought I would get better but I did 😊
This is kinna similar with me cuz the episodes don’t come that much anymore and I haven’t vomited in like a year but I read that migraines can occur when when we reach adulthood so I’m kinna scared
I also have Cyclical Vomiting Syndrome. I am a 68 yr old adult female now, but it started back when I was 38 yrs (early 1990s). You can probably imagine the nightmare I experienced back then. No Drs knew about this condition and I didn’t get much help initially. I had it very bad. I would be sick sometime for days, throwing up almost every 15 mins. Drs said it was a childhood disease so they refused to recognized my case was different. My disease had full body symptoms of abdomen, stomach, head, everywhere. The vomiting came in waves and the headaches were often excruciating. Then in 2007 we moved to a brand new house and it just suddenly stopped. It was a miracle for me. It is not gone because I still experience vomiting almost daily but it is not accompanied by the whole full body effect. Now it will usually be after some meal that hasn’t effected me well. It is still a problem but nothing like the CVS I had before. I am currently getting treatment that aligns the spine and vagus nerves in the neck. I can’t say yet if this will help. Good luck to you all.
I went though a couple of years of this 40 years ago, (didn’t have a name for it in the 1980s) vomiting 6+ times a day. My trigger was stage fright. My band couldn’t take to the stage until I’d puked a couple of times.
Thanks for sharing. I also struggled, a bit, with CVS, more when i was a child. I used to throw up every morning for a couple of years. It's gotten so much better, but I still often get stomach aches/throw up in the morning. I just have a sensitive stomach now..
So I have the nauseous feelings all the time and I dry heave excessively, mainly under the same circumstances as mentioned in this video anxious/excited etc. But I would say only 1/10 times I am actually sick. Anyone else like me?? I have suffered with this for over 12 years but never been diagnosed with anything. It comes and goes in episodes throughout my life. Thanks for making this video - first time iv found anyone I can relate to!
The last few years have been like that for me (I intend on doing an update video soonish) so I completely get you! I’m really glad this video helped you in some way ❤️
@@KatieMay7 This is so interesting, I always blew it off as anxiety, but knowing it wasn't actually that. Thank you so much, I would love to see an update! x
I've had CVS for over 10 years now. I was diagnosed after i had spinal fusion surgery. After the surgery I started getting sick monthly. Worse time of my life. Almost every episode results in a hospital visit, a few times I've ended up in the ICU. In the past nothing has helped except IV pain medications. Lately I've been taking Reglan, Amitriptyline, and Prevacid, it helped for a minute, but I recently had a pretty bad episode. The stomach pain and headaches are unbearable. I have to lay in my bed with complete quiet, even the sound of someone's voice will make me vomit. Each time I go into a conscious coma. I can understand people, but i can't communicate back. This disease has left my family and I scarred. It's impossible to be a mother and a wife. My heart goes out to you and those who suffer from this.
I’m right there with you 😞
@@missmud2053 ❤️
I’ve had cvs for 16 years now I’m 60 in November worst bout I had was 9 days ended up in the hospital for a week severe malnutrition dehydration potassium loss lost 36 lbs in those 9 days almost died from this cvs drs said if I’d waited 2 more days I would have been in very serious condition zofran reglan compazine don’t do much at all worst tome of my life then 2-6 bouts a year can’t hold a job son doesn’t want to help me deal with this now I’m homeless living in a rescue mission for the time being going for SSDI/SSI ..... hope I get it ....don’t wish this on my worst enemy either the nausea is the worst lost 6 jobs in 2 years with months of no work in between this cvs destroyed my marriage family and my life literally my family abandoned me when I needed them the most so I feel for you and know exactly what we’re going through god bless hope you get better the drs told me I have this for the rest of my life being this old no cure just nausea control which isn’t much I think I got mine after my diverticulitis surgery had 18” of my colon removed ever since I’ve had this cvs
I had gastric issues before but nothing like now, after I woke up from a coma on full body life support my CVS Became persistent and swallowed my life whole
I'm a CVS sufferer myself. It's ruining my life. I've had it four years now. And you mentioned about not many people knowing about it, my doctor doesn't even know what it is which is sad really.
I do too. in the thumbnail it is true that you vomit 20 times in 6 hours
I feel both your pain.. I had it since 2011. Would end up in hospital from dehydration and they’d just say I’m fine and let me go. and finally over a decade later they diagnosed me.. stay strong queens♥️
I'm having for 5 years . I was a very bright student but this problem ruined my life bcz I had to skip my exams many a times 😭😭😭😭😭😭
If you are near Pittsburgh PA, Klaus Bielefeldt MD. at UPMC Digestive Disease Center at Presbyterian Hospital was who diagnosed me after years of hell and no diagnosis. IDK if he has since retired or not but his practice is very knowledgeable.
Time to find a new dr sorry to say
Omg I’m not alone!! Just today I got off a grueling 9 day episode where I vomiting 63 times . NOBODY understands me, the dr couldn’t tell me what it was. Thank you so much! GOD bless you all!
As someone who has the biggest fear of Vomiting I can't imagine how horrific it must be for you! I hope you are ok, all my love from Belfast X
I cried watching this. No one I know believes me when I say I vomit when I'm excited and I used to miss a week of school every month. My main trigger is also excitement which along with the physical pain this illness causes, it also causes a lot of emotional pain. When I was in elementary we would have these assemblies in which the class would sing or my choir group would have a competition and I would be so excited. I would practice for hours and hours on end. However, without fail, every time I would get an episode the day before and I couldn't go. It wasn't stage fright, I did and still do love preforming, I would rather speak on a stage than 1 on 1. I distinctly remember being in my bed, just having vomited, looking at my clock and thinking "Okay it's 3:30, so I'll vomit at 4:00 then 4:30" and like clockwork, every half hour I would vomit. My mom would try to get me to drink water to get rid of the acid in my mouth and throat, and that water wouldn't stay down. I stopped having monthly episodes when I was 9 years old. Unfortunately, two years ago I was going to a concert with my best friend to see our favourite band, and the day before I had another episode. Luckily I somehow only had that episode for a day and was able to go see that concert but ever since that day, I realized that this is something I would have to deal with for the rest of my life. Every time I'm excited for something, I have to be prepared I may vomit and can't go through with that activity. I hate the physical aspect, I really do, but not being able to do things because I get too happy I vomit is worse. I apologize for such a long comment but I've never had anyone before who even knew what it is. If anyone reading this has a friend, or a family member who experiences this, just tell them you're there for them, and be there. When you're vomiting 30+ times a day, you feel gross. Having someone there makes a world of difference.
That’s so sad that you’re friends don’t believe you! But there’s a great community in the comment section of this video who completely understand what you’re going through! The vomiting when you’re excited has to be the worst aspect of the illness as it ruins so many fun things that you have planned! I hope you manage to find a way to deal with it too ❤️
That’s what my friends say and they say I’m faking and it really upsets me 😭
Their not understanding the severity made me want to wear a GoPro for each episode
Has anyone become,
Badly hyper sensitive to medications??
Or is?
My applogies,
I'm not trying to intrude,
Sleep??? Anyone? Anyone?
Between, the being so cold
You run out of hot water,
In the shower to keep warm....or try the tub what ever could or would stop it. The hotter the water the more it helped.
That's if an hour before,
My ex now but at the time
She tell you lol SWEAT!!!
It's not RIGHT, to literally feel the heat rise and your cookin from the inside out...to your face!!
Hair just soaked like you got out of a pool...your face goes lobster red
Having to run the tap and cool my skull off...
Oh
Lose weight!!!!!?????
I was 245 to 163pounds and loss of muscle mass, I'm sooo pissed it has made me seriously allergic
To pain meds of any kind..
Nothing.. because words
Are obsolete to try explain
The type of pain levels.
Passing out in the garage
Dislocating 3ribs almost center of my chest, off the bench vice, and a blueberry eye..
While waiting for back surgery, I injured at work.
Then all this torture started.
Anyway i opened my big mouth way to much sorry.
People see it and help as best as they can and that's even harder,
When it's a bipolar jeckal Hyde with 10x the guilt to
Feel because of it.
Not even having the strength to lift or move
When it's bad..
Couple of days to 2weeks
It lets you know and you hope you can take another bout..
Or 6 emerge by ambulance
From extreme dehydration and nausea
Sleep deprived and food?
What's it like?? Food??
Anyway.
If you actually read this
This far??? Thanks.
Take care
I have this and it sucks I just had an episode and I sleep to make it go away
Been dealing with CVS predominately since I was 18, but I can always remember having a sensitive stomach/stomach issues growing up.. today was day 3 in a row out of 4 this week being sick :( it’s been a really rough couple of days, but I can’t explain how much finding this video means 😭 having people you can talk and relate to truly is everything in times like this Xx
I've had cvs for 10 years now since I gave birth to my son, which was an emergency c section. It's awful. I was hospitalised every month for at least 4 days for 7 months in 2020. The last bad episode I had was last December, thankfully, but I caught the flu, and an episode started. I vomited 100 times in 48hrs it was horrendous, I didn't eat for 9 days, then well apart from a few spoonfuls of soup. I wish you all the best. Its good to know you're not alone.
I literally cannot thankyou enough for taking the time to explain all of this.. After 5-6 episodes of my little girl randomly keep throwing up on repeat for weeks on end, her losing up a stone in weight each time, losing the will to even be able to speak to us. (when she's usually non stop singing, dancing and wittering for 10 hours per day). We have had her to the doctors dozens of times, and chronic constipation was her initial diagnosis, and she spent 6 months on strong laxatives.. Was given the all clear by the peadatritians at hospital, and started throwing up again the very next day. At this point they took us seriously, and she was taken in to our local hospital, transfered to Manchester childrens hospital, had all the scans you've explained and a drip from her nose to drain out a huge bag of bile from her tummy. So this time her usual 3 weeks of sickness has been shortened to 10 days. She was only released from hospital 2 days ago, and though she drinking plenty, has only had 6 quavers to eat in the last 8 days. She's 6 years old, and despite being extremely bright for her age, can't explain any of what you've Just described to me. We sat and rewatched it together, and she said muumy, this lady sounds just like me... Your just an angel, is all I can come with right now.. And can never thank you enough for solving the nightmare we have lived this past 2 years, getting to the point Im at this very second where my babies mystery is solved.. God bless you, and I wish you sppedy recovery. Please also give your mum a hug as I know exactly how she's felt going through all of this xxxxx😢❤️❤️❤️❤️
Thank you so much for leaving this comment. This is exactly why I made this video. I hope you can get your little girl on the mend soon ❤️ xxxx
Yes girl please keep spreading awareness!!!! I am now 36 and its getting harder and harder for people to understand this is real, as ridiculous as it sounds (for me my biggest trigger is my menstrual cycle) but literally nobody ever could fake this!!!! Sending you love!!!!!! Be strong!!!!!!!
Same here! Been sick at least a week around my period for the last three months. It isn’t always a trigger for me but it’s linked with ptsd making it hard to know when it will trigger me
Amazing video! There aren't many videos on CVS and you've made an amazing step by doing this.
It's been two years since my last CVS attack (July 2016) but there are times where I get little episode. Waking up feeling sick but I more or less get migraines instead.
My doctor put me on Ondonseteron, an anti sickness pill, and beta blockers which reduce anxiety to prevent attacks.
I find that hot weather, anxiety, excitement and hormone levels has contributed to having CVS. But I'm managing a lot better.
I hope that helps xxx
I get nausea really badly first thing in the morning if I lie on my right side, I don’t know if this is common among all sufferers or not. Totally agree with all the things you’ve said add to it, when we first started having this really hot weather in England I was really unwell! Really great to hear you haven’t had an episode in a few years!
Yeah I’ve found there’s not many people talking about it online so thought I’d take a step to make it a conversation among people xx
Summer was horrible. I had a total of 3 migraine instead of CVS attacks, but I got through them.
I've tried the Facebook CVS groups but I've found they're either middle aged or parents on behalf of their kids. There is CVSA but there's only a once a year meet up and there's little more than that. Would be brilliant to start an online group for young people with CVS x
Totally agree! I wasn’t even aware there were Facebook groups for it!
I've noticed that hot weather also really makes mine worse! I wonder if this is a common thing among sufferers. I live in a cold area of the US (Northeastern area) so I've never taken to warmer climates in general, but with lately summers have gotten more severe and lasted a lot longer.
Miss Spaz it would be interesting to know why it affects it! Mine only tends to be when it gets weirdly hot in England although I did have a small episode when visiting the Grand Canyon back in April as it was a really hot day!
When I was diagnosed with CVS I didn’t even research it since I had been given so many diagnosis’s that didn’t really fit me so I thought this was the same. Last week I watched a lecture on it and I’ve never felt less alone in my life. I spent years blaming this on myself and telling myself I was just crazy and making myself sick but knowing other people go through the same things as me... I’ve never had such a validating feeling. I cried when the lecturer described the criteria, because I never thought anyone could understand, especially getting sick when I was so excited for something, or that could have a diagnosis at all. I’m so weirdly happy right now, thank you for sharing your story
That’s okay! Thank you for taking the time to watch my video! I hope you’re feeling well at the moment ❤️
Was diagnosed with this today, was tested for everything else beforehand. Our symptoms are really similar. I never had these episodes when I was a kid, I got my first one right after my 21st birthday. It'll last about a week to a week and a half and stomach and back pain are a HUGE part of it. It starts with stomach pain that feels like period cramps. I don't feel nauseous right away, that takes about 2-3 days to set in, and then vomiting doesn't start until about day 4 or 5. I get really dehydrated and lethargic, and I can't get any sleep. After a little more than a week, the pain and vomiting slowly fades away for about 3 or 4 months. I'm so glad to finally have answers and your story has brought me some comfort. I thought that there were very few people who got sick like I did, it's comforting to know that there are many others out there who know how I feel. Thank you for sharing your story
Hey! Thanks for your comment! So glad you’ve been able to be diagnosed and hope you’re on the way to feeling better ❤️ xx
So I’ve had this since I was 17 and my boss just figured it out. I run a busy cardiology office and let me tell you… I’ve been suffering with so many episodes it got ridiculous. One of my doctors sent me an article on CVS and promptly diagnosed me. He prescribed 2 supplements. L- carnitine and high dose Co-q10. I have only puked 2 times in the last 2 months on the last day of my period. To say the least this is an absolute miracle for me. Good luck
I’m so glad you made this. I have CVS as well and I’m around your age. I’m actually in an episode right now.
Hope your episode is over quickly ❤️
actually it is hot for women to vomit times to times. It makes your skin pale and gives feminine look.
Rvards Kammanuuzvardu 😂 in my last episode I went dead skinny. Like yh
Get better
@@honeybadgerwyrd OMFG SAME!!!!!!! All I can do is literally lay down, roll around, scream and cry but those showers and baths definitely work!
I've had CVS for about 3 years when I was little. It was horrible, but I'm so thankful that it stopped naturally. My heart goes out to those who are suffering right now
I’ve had CVS since 05 I’m 40 and it’s totally ruined my life
But I’m glad I’m not alone it seems like no one understands
I need someone to talk to, I'm sick and it's ruined my life. I'm so emotional 😭 40 year old male.
i'll tell you what helped me although you may have heard these things before, maybe i'll tell you something that could help.
1. hot baths/showers
2. guided imagery/hypnosis
3. horror movies/very intense distractions to get my mind away from the pain
4. amitriptaline
5. paraxetine
6. sometimes light pressure on my stomach/touching my belly, but sometimes i hate touching. also definitely a no to other people (like my mom lol obviously not strangers) trying to rub my belly to soothe me. its a toss up on that one.
hot baths/showers really are the number one.
@@rachelarnold5585 Totally agree with #1. Haven't tried any of the others. I do know if i take ICE packs and place them around my neck from each side it can help alleviate an episode. Same with splashes of cold water to the face or poured over the back of my head in a sink. There's something about the shock of the cold that gives me brief breaks from it. Sometimes long enough to try and rapidly fall asleep sitting up in a corner somewhere in my bathroom just in case. Also fans blowing strong air helps. I do know that once I start breaking down into the full body shivers and shaking, might as well get me to the hospital. I've been hospitalized in ICU for 3 to 8 days at a time. One time I was there for almost 3 weeks. Regardless to say, being a single father of two teens, they've had to watch me suffer thru this and even place emergency calls. Breaks my heart when it happens. Just wish there was a cure. I had one doctor say it might be Hpilori, another say it's gerd, another say ulcers.. soo many different diagnoses. Then my last episode which was a few months ago, this new doctor at the ER handed me some papers asking if I had ever heard of CVS. After answering a few questions, he was positive that it's my condition.
I find if I tie a tennis ball into my stomach so it’s pressing on my stomach it gives me some relief
@@missmud2053 pressure will indeed help
This comment section and your video is incredible. CVS is a very complicated and weird syndrome and I never see videos like yours about it. Thank you so much! I was diagnosed over a year ago and this helps alot
I’m glad it offered some help to you! And the comment section is great isn’t it?! ☺️
I've had CVS for 60 yrs. of course the diagnosis came in the last 5 yrs. It's a terrible disease. Sometimes the nausea is so extreme but I can't vomit and feel like if I could it would be so much better. I can go two years in between episodes. My triggers seem to be the same as migraine triggers and the doctors think the CVS is abdominal migraine so that makes sense. I really feel for anyone who has this.
i was just diagnosed with cvs today, and i’m glad i can finally put a name to my episodes. thank you for sharing your story!
hearing somebody my age talking about this FINALLY makes me feel so much better. keeping a job is difficult, getting people to take you seriously is difficult, school is nearly impossible, but i cant thank you enough for talking about it.
Thank you for the content!
As someone who lived undiagnosed with CVS for 15 years, it’s great to have someone like you with a voice who can help those who may not know what the symptoms or episodes may be.
It’s terrible. I wish everyone who has it can be diagnosed early thanks to people like you!
yes thank you for bringing more awareness to CVS. i got diagnosed about a year ago and this video was soooo comforting for me. even the comments on this video !! thank y’all for making me feel less misunderstood. i hope everyone is doing okay ❤️
This video is so helpful, I am 15 and I think I have been suffering with this for around 5 years now! It feel so great to hear someone else talk about what I go through and it makes me feel like I’m not just this stupid person that gets sick for basically no reason, it is such a wait off my shoulders thank you so much for this video!!! ❤️
You’re definitely not stupid! Hope you’re doing okay at the moment ❤️
I was diagnosed when I was 16 and it literally took over my life. I used to have an episode every few weeks (they sometimes lasted about 48hrs), go to hospital and spent a week or so recovering. Just the absolute worst. It's so hard to explain to people the intense nausea and horrific pain that comes with it!! I also find sound very overwhelming when I'm in an episode. I feel like I can't talk to listen to people because it's so so uncomfortable. My main triggers tend to be lack of sleep and intense emotion (like excitement or sadness). It was so hard to think about how I was going to have to adapt my life plans to fit around CVS. I was considering not going to University, staying at home and trying to come up with a plan B. On top of that, I remember feeling so unrelatable to my friends, feeling like I had to constantly validate why it was I had to cancel plans (I actually wrote a song about it on my channel if you want to hear it haha it's called Headspace). But! I'm 20 now, studying at University and so much healthier. I suffer with mostly migraines now (having one right now haha), which can sometimes be intense but nothing like an episode. I don't know if this will help anyone, but I have found Buscopan has absolutely changed my life. It's a IBS medication (I don't have IBS haha but my GP thought it might help) that you can just buy at the pharmacy. The majority of the time, it completely relaxes my stomach muscles before they somewhat overdrive into a migraine. Always carry it around with me!
Thank you so much for sharing your story. It means a lot to hear someone who has been through the lengthy diagnoses process and has experienced the syndrome. Reading everyone's comments is so amazing too.
When my CVS was really bad, my Aunt used to tell me to always go at the pace of my own body. It's something I tell myself over and over when I know that my body needed to go at a slightly slower pace to those around me. I can go at my own pace and that is okay.
Hope everyone is staying well 💛
Your aunt’s advice is so good ❤️ I was really uncertain how I’d cope at university too, like you, but I’ve just graduated and my CVS seems to have got better each year thankfully! I’ll definitely be checking out your song when I’m watching RUclips later ☺️ xx
I am 49yrs old & have just been diagnosed with this, I have had 2 episodes in the last 2wks & I have had to be hospitalised on both occasions 😭 it’s horrendous. And even though I am a nurse myself I just don’t see a way out of it. I am usually such a healthy person 💔
Are the migraines u get a lot more better as can u like do say to day stuff cause I haven’t vomited in like a year and I don’t get headaches as much now.
I’m just coming out of an intense episode. I am ULTRA lucky that my father is a diagnostician. But it took us a couple years to figure this out. This video is amazing and relatable. Thanks so much for sharing. I don’t know why, (and not that I would wish this on anyone) its nice to know I’m not alone. Because in the middle of an episode, I literally feel like I am never going to make it through. Also, ironically (I’m much older then you) , but it started on the night of my birthday (aug.8th). Anyways, you are awesome, glad I found ya!
I know! Being in the middle of an episode feels like it’s never ending! I’m glad that my video helped you in some way ❤️
My first episode was 4 days, I weighed 190lbs and after those 4 days I weighed 125lbs (I’m 6’2) 7 years later I still only weigh 140lbs.
Idk about some of you but my body starts to produce dark green acid than later blackish acid once I’ve been puking for over a day or two. (I’m heaving multiple times per minute when I’m conscious.)
Forcing myself to sleep is the only way I can break the flare up/episode. I get proscribed promethazine, I hate how it takes me out of my head but it works alright for making you unconscious. 7 years of fighting to stay off disability and actually make something of myself. Idk how much longer I can deal with it but for everyone else dealing with this hell, keep fighting! Stay strong! & Stay relaxed!
Yeah i sometimes produce dark green and black acid too and its horrible
I was diagnosed last night and just got out of the hospital for CVS thank you so much for sharing and helping me understand what it is im dealing with now. I definitely will be keeping up with you and this channel!
Sorry to hear that but hopefully it means you’ll be able to find a course of treatment to help you soon! Thank you for your support ☺️
I've had cvs for 6 years. It's cost me jobs from missing so much work and it's really effected my life. Thank you for making the video. Makes me feel like I'm not so alone ❤
Honestly, this is so relatable and such a relief to find someone online who has actually experienced these episodes (not that I'd ever want this to happen to anyone). Every time I mention this condition to people, they always ask me to say it again. Having people question my illness as well, because it's so unknown, is incredibly frustrating. I've been having less episodes of late, but it has really affected my life for the past 4 years. I'm glad to hear that your condition has improved since taking this new form of medication - all the best x
Hey! Thank you for this comment! I’m glad my video can help you in some way! And yeah I think the people questioning my illness has been the most frustrating for me too, especially as a uni student when Drs have dismissed me because they think I’ve just drunk too much!! Hope you’re managing well with your CVS ☺️
@@KatieMay7 thank you for responding 😊 hope you're doing really well too -
I really feel like not enough is known about this condition within the UK - I actually took part in an interview for my local newspaper to discuss this condition and I got a message from my interviewer's manager, asking me if this is a real condition, because he's never heard of it. 😑 But from that published interview, a US doctor got in contact with me and gave me advise on how to manage it 🤷♂️ so, ups and downs, really 😂 x
I know it's an older video but thank you so much for making this. I have been dealing with this for the last few months and it's just good to know that im not alone.
I’m so glad I found your video! I have been dealing with vomiting and nausea for about a year now. My last trip to the ER (1/25/2019) 2 days after my birthday, I was diagnosed with Cyclical Vomiting Syndrome. My past bloodwork showed all slightly elevated levels but nothing enough to get me antibiotics or anything. I thought I was dying! I was wrongly diagnosed with pancreatitis and gastritis which have many similar symptoms. But my episodes were always for different things/foods/situations. I lost 40 lbs since January 2018. It’s been a crazy journey but I hope to get more control of my triggers. Hope you are well dear! You are in my thoughts!
hey there, do u mine sharing how many tests u had to go through before getting the diagnosis? i hv had several tests done so far and all showed up fine, and i'm starting to think it might be CVS
Roxanne D I Have this I had it since I was 12 months old I’m 14 all most 15 and it got better I use to have to go to the hospital every month but it got better I was told I had it 6 years ago but one thing I can’t do is sleepover at friends house or I get sick and have to go to the hospital
Yap M.C. I’m so sorry I didn’t see this til now. I went through multiple rounds of bloodwork. I also had an endoscopy and a ct scan. Multiple ER visits until they assumptively diagnosed me with CVS and linked it to stress and marijuana usage! I actually started therapy for this and has become somewhat manageable! Hope you find a diagnosis soon and can heal and treat your stomach issues 🙏🏼
Bill jean Hehe I’m glad it has gotten better for you thank you for sharing. Mine has become manageable but still am uncomfortable often! I suppose it’ll be around just gotta keep myself as healthy as possible! Hope you are continuing to manage and do well
Since I was 2 years old, I started to vomit a lot and lose weight. Shortly thereafter, I was diagnosed with CVS. I never understood what it was and never understood why I was taking medication. CVS is very very uncommon ... Today, I am very surprised to see that I am not the only one to suffer from it !!!
Because I was diagnosed at a very young age and I got in a treatement earlier, my doctor told me that I will most likely be able to stop my medication once and for all. This summer I plan to stop everything. This time, I will no longer be the weak I was before. I won't give up !
I'm so glad I found this video as I suffer from CVS as well. I found out 7 months ago (when it all started - baring in mind I'm 19) and I've had 5 episodes since... near enough every month. It's an incredibly debilitating illness and when I say I suffer from it I really do as it's so so painful, people just don't understand and think I'm 'overreacting' or saying I have 'a low pain tolerance' like no it's genuinely extremely painful and just plain gross. The confusing this is I have no idea what the trigger is, they're still trine find that part out! Thank you for sharing this, we're stronger together💖
I completely get where you are coming from! Episodes are so horrible and as most people don’t see you in one they can never really understand. Hope you are doing well at the moment! 💕
I’m so happy I found this video, I was just diagnosed with CVS after years of my doctors telling me they couldn’t tell me why I was always vomiting.knowing I’m not alone is an amazing feeling
So sorry you’ve been diagnosed too! Fingers crossed you’ll be on the road to recovery soon 💕
I'm almost 50. . male..... Been dealing with CVS for very long time.... I used to search for you guys too talk and trade information. But hearing your stories. Like this.. get my emotions up. and you know what happens.. today I'm sticking with it . With my bucket next too me. .. I want and need to talk to you all... .I want to help where or of I can. And I need you guys badly too.
Hello, I’m a man from the states and I’m kind of in the middle of diagnosis, been in the middle of weekly sometimes daily attacks for about the last year and a half, thanks for the video! It’s nice to know I’m not the only person spending most days nauseous and in bed lol
I’ve only been suffering with CVS for a year, but I can honestly say it’s ruining so much of my life. I’m currently up in the middle of the night on day 7 of symptoms - my longest episode so far. I have a 7 year old and a 3 month old, and I’m honestly struggling to cope with this illness. It’s not just physical pain, it’s the mental exhaustion too 😔 sending love to everyone dealing with this 💙
Thanks. I been getting these episodes of vomiting all night long and my mom gets worried about me and when I start throwing up I can’t stop or stay still and I lost a lot of weight from it and now I’m having trouble gaining my weight back and I been feeling cold and sweaty and shaking and lethargic and it hurts my stomach and throat and my head. It hurts my whole body I think I got CVS too
Thank you for this video, it kept me company while I hugged a bucket >_
Oh no! I hope you’re feeling a bit better! ❤️
wow this is crazy, i was just watching your moving in vlog as it came up on my suggested tab & i saw this video, I HAVE THIS SYNDROME TOO! I’ve never met anyone with this, this is amazing!!
That's such a weird coincidence! Yeah, I've never met anyone else in person that has it! But I've had quite a lot of people reach out since posting this video so there obviously is some of us in the world?! Hope you're doing okay xx
I have had CVS since 2011, diagnosed in 2013. Rather sick at the moment, trying to focus, getting breathing under control, trying not to freak out over the ick in my stomach... Zofran dissolvable taken, legal for medicinal marijuana so partaking in medicating. I wish I could could banish this from us all!!!❤️
@@ejnicks5644 Be careful, pot is known to cayse hypermesis which is just like having CVS. In fact the symptoms are identical. I smoke pot to help also, but have had doctors blame my condition on my marijuana use, eventhough i didnt start smoking till I developed this condition. Goid luck to you!
Been dealing with it forever apparently. Was finally diagnosed with CVS at the age of 37. Went thru all the same test as you. My episodes got so bad that it resulted in serious damage to my teeth as well. It has long lasting effects. And yes moments of happiness can trigger events. I find taking something extremely cold and placing it around the back of my neck will help to fight off on coming episodes. I find that showers can sometimes help defend off an episode.
My daughter takes several short showers a day.
I know this is an old video, but this is the most accurate description of how CVS affects me. I'm quite a bit older and mine didn't start until I was in my mid-30's and I'm now 47. I've had my gallbladder this and multiple esophageal stretching due to the scar tissue from the stomach acid. It has also destroyed my teeth for the same reason. I self medicated with alcohol for the depression that went along with the CVS. I now have live issues due to the convocation of the meds and my alcohol abuse, although my cirrhosis is thankfully not considered non-alcoholic related. I have since stopped drinking completely, improved my diet and lost 150lbs in the last year or so. My episodes have become less frequent, less violent but oddly longer than before.
Thank you for helping bringing awareness to this and for others to learn from some of my mistakes. The road before me is very scary, but I'm FINALLY doing the things I need to do to help my fight. I might have 5 years left or I might have 25, but I've finally chosen to fight for the latter.
Please feel free to IM me if you have any questions about my meds and positive coping mechanisms that trend to work for me.
I just got diagnosed with CVS. Mine is very different. Vomiting only occur when I exercise so I just don't. After a while it started causing me to vomit whenever I leave my house. My parents think it's anxiety or overthinking and forces me to exercise to “beat" this problem and I end up vomiting so much it's just acid. Vomiting also does not stop the nausea and my nausea occurs everyday. But holy shit vomiting 20 times is crazy. I had my o levels which is this year and luckily I did not need to go to school a lot as most was online school and I did not need to leave my home to vomit. I was vomiting nearly 10 times before every paper due to intense stress and nearly missed my papers. I managed to pull through but I do not think I have given my best efforts. Knowing that someone else also has what hell I am going through makes me feel not alone. Glad you made this video.
I know exactly what you mean. I have been diagnosed just a couple of months ago due to being under a lot of stress and ended up having to go to the emergency room. I think it would be great to have a support group or just people I can talk to about my experiences and what I’ve been going through. Thank you so much for telling your story❤️
It hit me at 43... I'm 47 now and diagnosed year and a half a go.
It is a battle holy!!!
Did you have severe chills? Or get Them?
Cause I did terrible and
Then crazy sweats too...
WATER!!! COULD NOT TOUCH IT...
The dehydration and nausea and it never stops.
I'm so sorry that you suffering this.
Thank you for this video,
I was unaware of such a illness and it changes lives. Mine is.
Stay strong.
Great video.
I’ve had CVS since I was 6, and I’m currently 22. I always have to go into the hospital for IV fluids and meds whenever I have an episode, and my episodes last at least 2 days. I usually stay in the hospital for at least a day after an episode so I can gain my appetite and keep down food. I’ve also had an upper endoscopy done plus an MRI on my stomach and ultrasounds. CVS is definitely a spectrum disorder, which makes it more difficult to treat and do research on. I still suffer from frequent nausea and headaches/migraines from various triggers that almost always lead to an episode. Viruses and colds are one of the strongest triggers for me with my episodes.
Thank you Katie for sharing your story and raising awareness on it.
It’s crazy how close your story is to mine, I even had an attack when I had my endoscopy it was so bad, even tho I’m diagnosed and on medication I still have attacks but they aren’t as bad, I do notice from Er visits that pain medication will basically end an attack about 1-2 hours after administration. I hope you get yours under control!!!
The endoscopy is horrible isn’t it?! That’s interesting about the pain meds I’ve never heard of using that to control it before!
Thanks for sharing Katy. I’ve had CVS for around 12 yrs. it started when I was 38! It’s a miserable and misunderstood condition and it really helps to not feel alone!
I have CVS and it sucks. I'm glad to know somebody who goes through the same stuff as I do. I have a dog that is kind of like a "service dog". What he does is every time I go into an episode he lays by me, like he's protecting me or telling me that everything will be okay.
That’s great that your dog can help you through an episode even just with emotional support being nearby! ❤️
Hi, I loved the video very close to home hearing that others are going through the same as me, I also suffer with this illness since I was 11 but was also not diagnosed until I was older after many tests later and still have episodes to date. My triggers are excitement over new things and even holiday. So most of happier things in live have been ruined because of my illness. But I am a lot more aware of it now and how to cope with it. Thank you for the support of the video.
IM SOOO HAPPY I HAVE FOUND SOMEONE WHO UNDERSTANDS ME!! 😁😁
I was recently diagnosed with CVS after a horrendous 3 year long experience. Thank you so much for this video!
That’s okay! I hope you’re feeling well at the moment ☺️
For seven years doctors have been doing testing and have given me so many medications that have never helped. Last night, I finally found the cyclic vomiting syndrome. I’m making an appointment with the the doctor to talk about this with them. This has disrupted my whole life and to finally have a name finally... it is the biggest relief that I have ever had.
Gday from Australia when I came across this video I was so relieved thank you in the pit with you.
Thanks for sharing this. It really feels good to hear I'm not alone in this though I'm terribly sorry you have to deal with this too. I'm a 54 yr old female. I've been having this since at least 2004. (2019 now) My episodes are a little different so I wondered if this was even what I had. Mine come on usually in the evening with a painful tingling sensation in my limbs. It can be triggered by movement or if I twist my neck in the wrong way. Sometimes a headache. For years I just thought I got food poisoning a lot. My body felt toxic and dizzy. That's the worst and most dramatic symptom, dizziness with nausea. So freaking painful. When I start throwing up I'll throw up every 10-15 minutes for 4-8 hours. I have to lay still in a dark room. Any movement, even of the air from someone walking by or talking will bring on the nausea immediately and I won't get that 10 minute respite. I've tried everything. Hot showers, anti-emetics, breathing... I've never been able to stop an episode. I discovered compazine which I just got and haven't tried but it's a suppository so I'm hoping it will knock me out. That's what I need. To be knocked unconscious and when I wake up, it's gone. I have narcotics but I just throw them up. It still takes me 3-4 days to recover. I feel queasy with exertion. There's a service in my town where a nurse will come and give you an iv. It costs over $300 so it's crazy expensive but it can cut my recovery time down to a day or two. I've only had one episode in 2019. I've started exercising in the morning and the evening. Not massive exercise but stretching and yoga. Every day. I eat well and I meditate to help with any stress. It seems to be working. But my anxiety around it prevents me from going far from home. I've had episodes in the most humiliating places. I spent 8 hours on the floor of an airport bathroom. I spent 10 hours on the side of a road, 30 minutes from home, too dizzy to drive. I was on a bus trip once and .. the embarrassment. I was at a meditation retreat two different times and had an episode creating quite the drama. It prevents me from going anywhere anymore. I have to work less in case I can't fulfill my commitment. I make less money and live on very little money. I just cannot subject other people to this every again. It's too painful. I hope to one day go long enough to trust I won't get another episode and get to live a little again. Oh!! I discovered something. Cantaloupe. If I eat a small bite of cantaloupe between throwing up, the next time I throw up it won't be as gross or painful. It has some soothing properties and (sorry to be gross) it's not so bad coming up.
My episodes are so severe I end up in hospital every single time. Can’t hold down liquids, food, medication, anything. Have to get everything through IV and even getting strong anti-nausea medicine through the IV causes me to vomit. I stay in hospital for 5 days or more, after I get out of hospital the nausea stays for up until the next episode. I can never escape it, I have an episode each month. It’s causing my anxiety and fear to rise extra which isn’t helping my CVS
I do NOT have it, thank God! But I'm so freaking sorry you're dealing with that, and I hope you're being treated for it.
Fellow CVS warrior, you go girl!
I'm in N.Ireland and get hospitalised quite often and I'm losing my teeth now as well I'm almost 30 and had this since I was little it's something people don't think about also unable to hold down a job, cause I always get nervous starting a job
Fellow CVS sufferer here - thank you for making this. It has really helped to know that more people have gone through what I have. Big love Xx
Hey! Thanks for watching! Yeah I couldn’t find too many people talking about it online when I was diagnosed but since posting these I’ve seen just how many people it effects! Hope you’re doing well x
i'm really sorry you had to go threw this and it took them so long to diagnose it. As someone who has been diagnosed with CVS for as long as i can rember. I know just how hard it can be to live with this. I'm glad you had people who support you and have been helping throw this. i hope this summer is great and your stay in good heath so you can enjoy it. :)
I was born with CVS and have to go into hospital ALOT for it because I sick up blood. I get so angry at myself for it and I have many symptoms and triggers. I HATE IT!
I HAVE THIS TOO OMG👏👏 I have had this for around 4 or 5 years now and randomly decided to search it up. I take medication daily and it really helps but in certain situations its hard to deal with and SUCKS when I feel symptoms. I have learned how to manage and deal with it for the most part but have never seen anyone else with my condition. When I first got it everyone thought it was food poisoning. I am definitely checking out your channel! (I got it was I was 11 or 12 and im almost 16 now!)
Thank you for this video and sharing your experiences. I don't know if I have CVS, I've only had a few episodes that rise to the duration and intensity of what you describe, (had to go to the icu in 2013 because the constant vomiting created air bubbles between my lungs and chest cavity). I generally have more of the hangover type vomiting but it occurs almost every day I have any sort of engagements or responsibilities, even events I'm looking forward to. There was a period where I almost got into multiple car accidents from puking episodes starting while I was driving on the freeway. I have a decent amount of hypermobility in my hands as well. My thumb war defense is literally unstoppable. I had gotten so discouraged after multiple endoscopies and colonoscopies followed by shoulder shrugging and my symptoms not abating I had just given up. Today I finally got tired of it when having to postpone seeing an old friend in the wake of the death of a mutual friend because of this bs. I'll take this information with me when I'm at the doctor the next time. Thanks so much.
I had CVS from the time I was 3 until I was 18. I got lucky that mine was the childhood version. My sister had it as well. Both of us would get extreme vertigo during an episode and were basically unable to see. Excitement or anxiety were my biggest triggers. Extreme light was also an issue. We would vomit regularly for up to three days followed by another week or so of vertigo. I missed a few birthdays and Christmases. There was no diagnosis for CVS when I was a kid so I had to go through a lot of testing and faced a lot of doctors who thought I was making it up. I'm so happy that you are contributing to building awareness and community around this issue.
I hope you find treatments that help you. I was on Paxil and Naproxen when mine stopped. These are migraine treatment and antidepressants. I'm not sure if that stopped it for me or if it was just adulthood. Best of luck and wishes in your treatment.
Katie thanks so much for this. My daughter is 8yrs old and over the past months she keeps having vomiting episodes followed by very saw abdominal pain and severe headaches. It's now happening almost every 2 weeks. Breaks my heart seeing my daughter go through this - she now gets so bad that she gets hospitalized and put on drip as not even water stays down. Our amazing Paediatrician in Cape Town has just diagnosed her as all her symptoms link to CVS :(
I’ve Had CVS Since I Was 5 And I’m 20 Now
I Would Vomit Up To 120 Times an Hour Lasted Up To A Week Hospitalized Every Time
Thank you for sharing this video. As a mom of a 10 year old with CVS it really helps hearing your experience.
Thank you for sharing. I have suffered many years with this. I am sure I don't have to tell you how frustrating it is when people/doctors just dismiss you. My second endoscopy through me immediately into an episode as well. Bless you and thank you again.
That’s okay! Yeah I find only the people who see you throughout a whole episode truly understand and won’t dismiss you. Other people don’t really understand which is why I made this video! I’m glad you enjoyed it ❤️
I had it from 15-26. I am 5 years free of bouts. I hope you all heal too.
Finding God is what I believe healed me. My anxiety, illness and vomiting all gone when I gave myself to him.
I have suffered with this since I was born. I take a few medications for it. I take a migraine medicine that does keep it at bay most of the time but I do have break through episodes every now and then. My triggers are poor diet, poor sleep and anxiety. Of course I have IBS, adhd and anxiety. It's terrible to have three they trigger eachother. 😕 hardly any doctors know what it is. I got lucky and found a doctor that knew exactly what it was. I'm so thankful he gave me a little of my life back. I'm 35 and I've lost so many things to this syndrome.
It’s so nice to hear i’m not alone…
i started having vomiting episodes in elementary school hoping i would grow out of it. i’m 20 now and it’s only gotten worse. it’s so validating to see others with the same experiences
Hi Katie! Great video. I also have CVS and for the last two months have been on the mito cocktail. Its helping me some too. I'm also on nortriptyline 100mg and omeprazole 40mg. Prior to taking the cocktail, I was afraid to use restroom in the mornings, a bowel movement would turn my saliva into slime, then stomach pains, nausea, panic, etc...then vomit. once i vomit, its a 20-24hr episode no matter what. i force liquids (ice tea) to ease the pain then vomit that out so that im not vomiting bile. Then rest in between vomits. I refuse the hospital because they use zofran to stop nausea. This drug prolongs my episodes from one day to three. Every time I've ever used zofran, this happened. So rather then aborting an episode with that drug, id rather get through just the one day. Since taking the cocktail, im not afraid of the restroom. My saliva does not turn to slime either. I made it 2.5 months without my usual monthly episode. If I hadn't been pushing myself to get up earlier and earlier each morning while hunting, i probably wouldn't have had that episode. So stress, anxiety and excitement also trigger me. I didn't start having monthly episodes until I was about 50. Prior to that, It wasn't happening often enough to be able to relate to any one thing, just vomiting was always extremely traumatic for me. Once it started happening monthly, it only took my doctor two-three years to mention CVS...lol... Now that i've read about CVS I was able to accept it and start looking for a cure....But that's not possible either. However the mito cocktail helps about 70% of sufferers. I can do that too with my thumb, I've never heard that before hypermobility had anything to do with CVS thats weird...lol
Brent Beers that just shows how much more research we need to do about this disease. Zofran is a life saver for me whenever I feel an episode coming on.
What is a mito cocktail? I had a severe episode and I was in the ER and they gave me zofran while I was waiting to be seen and it did not help at all. It helps for my minor episodes when I feel sick in pain from anxiety but when it's severe like when vomiting, it doesn't help keep it down al all.
I’m 42 and recently diagnosed. Pretty sure I’ve had this since I was a kid. Thank you for sharing your story.
I was diagnosed two days ago. I have been suffering for at least 3 years. I’m just glad that I know that I finally know what has been making me sick. TFS
So glad you’ve finally got a diagnosis! I hope you start recovering soon ❤️
I too was just diagnosed with CVS. I have been hospitalized many of times. It wonderful to know there is other people who suffer from this.
I've had this since I was about 4. The worst spells was when I was around 16. I went down to about 100 pounds, and I am five foot nine, so that is really light. Someone finally gave me some meds to help stop the MONTHS of retching. I'd stopped eating so I wouldn't throw up. It was awful.
I just watched your video and nodded all the way through it my 14 year old daughter has started having the episode's 4 weeks ago
It comes every weekend at 6am in the morning xx
I have Gerds but also have felt over the last few years coming up on my 21st but yea intense uncontrollable vomiting an it causes me hard times to breathe as well. Thanks so much for sharing your story.
My baby sister who is 6 years old has cvs... shes currently in an episode. I'm so glad we can see this video and see other cvs-ers. Thank you for posting this video.
Hi katie, I hope you are well. I just wanted to say thank you for doing this! I have a telephone consultation with a gatreology specialist in 10 minutes and it's been mentioned that they think I have this. I will be subscribing and following you, thanks again its good to not feel alone 🥰
I’ve just been diagnosed after a very difficult few months. I went though the phases of throwing up every day every meal and the doctors numerous times tried putting it down to me having bulimia and an eating disorder - which I knew in myself was not true! Finally when I got diagnosed I was sad but somewhat relieved. I’m in 6th form now and have the same problem as you with not eating food in school as a fear. I’ve missed a lot of school which had now lead to me having an excuse when applying to uni, but something I’ve not heard of too much is how much it is impacted by stress. I’ve gone through a lot of stress so I am now under a clinical physiologist to help with CBT to help me when my episodes come through. Also, my episodes always make me hospitalised monthly being out in w drip but I guess that’s just part of having the illness I guess🤷🏼♀️ glad I’ve heard someone else share their experience in 6th form especially xx
Hey! So sorry you’re going through this too! Glad you’ve finally been diagnosed and can start working to find a way to manage your CVS! Sixth Form is definitely stressful and it added a lot to my own CVS but that’s amazing that you’re working on CBT as I definitely think working with a therapist helped me lessen some of my own symptoms ❤️ I hope you’re doing good at the moment xx
Proud 800th subscriber 😊😊😊
I came here to listen to other people's struggle with the illness, as I have it as well. My counselor recently spread the rumor that I'm faking and it got to my principle. He has been rude towards our family ever since.
Thank you for subscribing! That’s terrible your counsellor would do that! I hope things get better for you soon ❤️
Katie May
Thank you 😊❤️
I hope they do for you as well.
Thank you for making this. I’ve been throwing up every day for over a year and my doctor keeps telling me it’s anxiety. I’m at such a loss.
I have cvs and knowing I’m not alone brings me so much joy❤
Ahh love this! I suffer from it, i was rushed in and out of hospital from age 7-18 due to it. I haven’t been there since, thank God. I still get fainting episodes time to time though.
Thank you for making this. My husband FINALLY was diagnosed today after a nearly 3 year journey of suffering.
i am sorry hope you are as wonderful and understand as my wife hes gonna need you now more than ever speaking from experience
I have CVS too, just had my first episode in a month this morning, was feeling pretty upset about it and was happy to see other people who can talk about it and who have it too. Mine is abdominal pain and vomiting every morning for a few days or weeks. Stress and my period can trigger an episode as well, My endoscopy was fuckin terrible too! really enjoyed this video!
Really sorry to hear you’re going through an episode! Hope you’re doing okay now ❤️ It always helps to know here’s other people out there who understand too! I’m really glad you enjoyed this video ☺️
I was diagnosed after I had a bad reaction to marijuana. I’m 20 and this was two years ago and it has honestly been the hardest thing ever. Just today i had to run out of my classroom (i work at a preschool) because I could not stop gagging and retching and ended up throwing up in the sink. It just feels never ending :(
Same here
I'm really glad someone made a video about this I've had CVS since I was four years old and I always had to go to the hospital and the only thing that would help was Valium otherwise I would vomit for 24 hours I always thought I was the only one who had cvs and for years I didn't even know what I had and it was really hard in school because of how many days I had to miss but thankfully at the age of 13 it stopped I'm so glad I don't have to stay at the hospital for several hours anymore and I used to get it every month but thankfully over time it was slowly less than every month and I got better so have hope and maybe you'll get better soon too anything is possible I never thought I would get better but I did 😊
This is kinna similar with me cuz the episodes don’t come that much anymore and I haven’t vomited in like a year but I read that migraines can occur when when we reach adulthood so I’m kinna scared
@@d-reallz I have had some pretty bad headaches but they haven't been very serious at all so I wouldn't worry much 😁
i have just been diagnosed, after 6 years of being sick i'm excited to find my medium!!!!!
We are all warriors.
Thank you for making this. 🤍🤍
I also have Cyclical Vomiting Syndrome. I am a 68 yr old adult female now, but it started back when I was 38 yrs (early 1990s). You can probably imagine the nightmare I experienced back then. No Drs knew about this condition and I didn’t get much help initially. I had it very bad. I would be sick sometime for days, throwing up almost every 15 mins. Drs said it was a childhood disease so they refused to recognized my case was different. My disease had full body symptoms of abdomen, stomach, head, everywhere. The vomiting came in waves and the headaches were often excruciating. Then in 2007 we moved to a brand new house and it just suddenly stopped. It was a miracle for me. It is not gone because I still experience vomiting almost daily but it is not accompanied by the whole full body effect. Now it will usually be after some meal that hasn’t effected me well. It is still a problem but nothing like the CVS I had before. I am currently getting treatment that aligns the spine and vagus nerves in the neck. I can’t say yet if this will help. Good luck to you all.
I would throw up every Christmas Eve because of excitement. I never made it to the bathroom once, bless my mum and dad 😂 thank you for sharing x
I’m so glad I found someone else that has this!
I went though a couple of years of this 40 years ago, (didn’t have a name for it in the 1980s) vomiting 6+ times a day. My trigger was stage fright. My band couldn’t take to the stage until I’d puked a couple of times.
Thanks for sharing. I also struggled, a bit, with CVS, more when i was a child. I used to throw up every morning for a couple of years. It's gotten so much better, but I still often get stomach aches/throw up in the morning. I just have a sensitive stomach now..
Thank you. This was very interesting, keep up the great posting.
I live with CVS too, not a fun thing to deal with. Thank you for sharing your story.
I have CVS as well,I was diagnosed when I was 5 and now I just get migraines
So I have the nauseous feelings all the time and I dry heave excessively, mainly under the same circumstances as mentioned in this video anxious/excited etc. But I would say only 1/10 times I am actually sick.
Anyone else like me?? I have suffered with this for over 12 years but never been diagnosed with anything. It comes and goes in episodes throughout my life.
Thanks for making this video - first time iv found anyone I can relate to!
The last few years have been like that for me (I intend on doing an update video soonish) so I completely get you! I’m really glad this video helped you in some way ❤️
@@KatieMay7 This is so interesting, I always blew it off as anxiety, but knowing it wasn't actually that. Thank you so much, I would love to see an update! x