Cyclical Vomiting Syndrome Association UK: Living with CVS

[WESTMIDLANDSGIRL2K11]

Does anyone know the causes yet then?

[WESTMIDLANDSGIRL2K11]

Did Chantelle Harris say something about bullying towards the end of the video?

[TheGuitarguy85]

People with this illness need to stick together, because of everyone else's ignorance, we have to fight for each other... I have CVS as well, but I prefer to help others with their symptoms or lifting their spirits. Life's too short to quarrel about this stuff. Also, CVS is a broad diagnosis. Just means there's a pattern/similarities to the episodes. Had this for 6 years.

[TheScreaming4silence]

@TiptonSophie01 "IT makes me sick when people laugh at things like this" WTF?!?! you were laughing at me having CVS!

[cindy1000000]

@TheScreaming4silence you going to leave my friend alone? Just because you suffer from this illness doesn't mean you can take it out on her -_-

[TheScreaming4silence]

@cindy1000000 I don't take it out on her? she just randomly started messageing me makeing fun of me.

[TheScreaming4silence]

@TiptonSophie01 But your harrasment is getting very annoying and it's life threatning to other people because 'im guessing i'm not the only person your harrassing.

[deborahlynneb]

@TiptonSophie01 Me too. That is exactly why I warned this person about Karma. It ALWAYS comes back to you. It may take years, but trust me, it's coming to repay you. And the thing is, the person who is so hateful, brought it upon themselves. Say something nice, or say nothing at all. That's my motto!

[deborahlynneb]

@TiptonSophie01 Absolutely! I have CVS too, and this person was so hateful.

[TheScreaming4silence]

@TiptonSophie01 been messageing me...dude get a life.

[TheScreaming4silence]

@TiptonSophie01 First of all..i'm a girl..and yes you have...but whatever.

[TheScreaming4silence]

Tiptonsphie01 is a fail troll...if she messages any of you don't take it to heart <3

[TheScreaming4silence]

@TiptonSophie01 I still have it...but i got these pills to ease the pain.

[TheCTFxCLovers]

I have it too! since I was 3.... I get it 4 times a year for a duration of a week... I end up missing alot of school..... But I always get it in March, June, September and December.... Always a pattern! It really sucks that there's no cure.... Atleast i'm not alone!

[TheScreaming4silence]

I have cvs...but when i have an episode sometimes if my dads there he doesn't let mum take me to the hospital....so they make me sit through it and it's the worst pain ever i felt like killing myself...cause i know it would hurt less.

[cindy1000000]

@TheScreaming4silence If you kill yourself then you'll be hurting those who you leave behind

[chihuahuaholica]

I also forgot to add it IS so hard to tell when it is the cyclic vomiting or the panreatitis flaring up or one of my other issues.... if you may know of other resources please let me know I am in Cowes or support groups I will send my email address

[cindy1000000]

the people on here who say CVS is funny are a bunch have dickheads do you have any idea the amount of agony and stuff these poor people have to go through because of this stupid illness that should have never exsisted in the first place you people should get cvs yourself (the ones who are making fun of it and lets see then how good and funny you think it is :@

[jdfkopyu300]

FUNNIEST DISEASE EVAH!! :D

[cindy1000000]

@jdfkopyu300 you wouldn't be saying that if you suffered from cyclic vomiting syndrome dickhead -_-

[deborahlynneb]

@jdfkopyu300

KARMA: Actions that determine what happens to U during your life because of your behavior. I hope that U, nor any of your family, ever get cancer, hurt in a car accident, etc. If something bad does happen, remember what U have said to this person who has a serious illness. THINK BEFORE U ARE HATEFUL. Unless U want to be the blame for bad things happening to U, and the ones U love. Be caring towards others. If you can't say anything nice, say nothing. IT’S YOUR CHOICE.

[deborahlynneb]

KARMA: Actions that determine what happens to U during your life because of your behavior. I hope that U, nor any of your family, ever get cancer, hurt in a car accident, etc. If something bad does happen, remember what U have said to this person who has a serious illness. THINK BEFORE U ARE HATEFUL. Unless U want to be the blame for bad things happening to U, and the ones U love. Be caring towards others. If you can't say anything nice, say nothing. IT’S YOUR CHOICE.

[pietekkeeeeeeeeeeeee]

It is funny as hell. It's good when people die or suffer. It declines the world population. And vomiting is fun so C.V.S. is good.

[cindy1000000]

I had a episode of vomiting again today and my mom asked me if I had been sick in the toilet and I just replied "No" then when she went back downstairs I ended up crying my eyes out about all of this and how she asked me again after all these years I couldn't stop for about 5-10 minutes or so no matter how much I tried to carm myself down..I really don't want my parents to worry about me being sick all the while :(

[missLailaXxX]

@cindy1000000 thats so sad :( my cousin has that too.......

[cindy1000000]

@missLailaXxX I don't want them to know because they will just wonder if I am making myself sick again and I'm not.

[pietekkeeeeeeeeeeeee]

@cindy1000000 HAHAHAHAHA DUMB BITCH, THAT WAS MY HOLY SPIRIT ACCOUNT, btw, cyclic vomiting syndrome is funny

[cindy1000000]

@pietekkeeeeeeeeeeeee yeah well you wouldn't think it was funny if you had it now would you? You bigheaded prick.

[cindy1000000]

@pietekkeeeeeeeeeeeee you stupid little twat get this illness for that shit you just said

[cindy1000000]

can bad anxiety cause CVS?

[StarBeachFan1994]

listen people i know what it feels like to throw up to often,I wish I was dead to be fair.

[StarBeachFan1994]

I want to kill myself because I can't stop being sick.

[cindy1000000]

its alright now i don't think i am throwing up as much as I used to anymore.

[manda076]

hey i know how you cyclic vomiters feel, i have been suffering from it myself for the last two years with tons of visits to the hospital and different docs only to get an answer of i don't know....i'm now on to seeing a gastro doc that specializes in it in toronto.... and to what others have said about our DIET..... i can say it doesnt make a difference at all , i've tried just about everything and nothing helps. All i can do is keep my chin up and hopefully a cure will be found

[chihuahuaholica]

Hey kids I am in the United States and moving to the Isle of Wight to be with my fiance how can I get involved with and get established with a dr right away, I have had issues since 7 but wasent diagnosed until about 2 yrs ago and I am 34 I have genetic pancreatitis and have had my gallbladder out, appendix and more surg for other issues as well as have another port now if anyone wishes to add my facebook let me know =) thanks guys any help you can give is appreciated

[soniabianca]

my husband had CVS for 10 years (upwards of 150 trips to the ER between the ages of 18-28). He seemed to have outgrown it, but he still has frequent bouts of very severe abdominal pain, nausea and diarrhea, but without the vomitting. He never got the headaches some of these patients report, but his vomittng was to the point where he almost died.

[cindy1000000]

When was this film made?

[89rebeccajane]

hi all thanks for all the great comments im the girl in pink crying and i didnt even know this was on here... its 5 years on from filming and ive not been sick in a year, though it has become migranes. if anyone want more information visit cvsa.org.uk and contact the membership secretary for a membership pack containing leaflets and other information. Theres also a family day coming up in november in birmingham for anyone interested in meeting other sufferers.

[cindy1000000]

@89rebeccajane was you the one who was ill in school and nobody helped you?

[89rebeccajane]

@cindy1000000 hi yes unfortunately i am that girl. highschool for me was rough to say the least,this was filmed about five years ago 2005/6 i think, just before my 16th birthday im now 21, and in third year at uni which goes to show i didnt let cvs hold me back. from what i read on here you think you may have this but are scared of telling parents, well at one or two points my parents and even doctors thought i was making myself sick, and to be fair they do have to make sure your not

[cindy1000000]

@89rebeccajane I am sorry that nobody helped you that was not nice of them,imagine it was them and nobody asked if they was ok.And maybe my mom thought it because I didn't really tell her every time I had been sick so she had to listen out espelshelly if she heard me running to the tiolet.

[89rebeccajane]

@cindy1000000 silly character limit... theres a lot of ruling out other stuff before you can be diagnosed with this... theres not a straightforward test that can be done to say you have it and it can be a long process to rule out everything. and dont hope that what you have is this just so you can give it a name because theres no magic pill to make it better as with other illnesses. in otherwords i hope what you have is something else that is treatable so you can get better.

[cindy1000000]

@89rebeccajane ok thank you

[bigmuso123]

all these people look like they live toxic lives, eat green healthy , cut out meat and rotting meats, fresh food, clean your body,

[soniabianca]

@bigmuso123 You have no idea what you are talking about...trust me, poor diet has nothing to do with it whatsoever. We've been down that rabbit hole with every diet under the sun. Still eating vegitarian, local, organic, vegan, non gmo, no sugar, no processed foods etc. etc. it doesn't make a difference.

[hannathesunshinekid]

@bigmuso123 mmm, i have to say this isn't very helpful. i've been on every diet out there and even did an "elemental" feed for a while [this is where you have a special formula feed with all the good nutrients your body needs, but it is broken down into its simplest form so there is nothing in it that can damage or irritate your digestive tract) and it made no difference at all. diet has nothing to do with it.

[cindy1000000]

I dunno if I have this,I am sick often but I still don't know though but I am to scared to say anything to my parents about it cause they might acuse me of making myself sick again when i'm not.

[cindy1000000]

if people weren't polite enough to stop to see if she was ok or/and comfort her it just shows how much they didn't care how much agony with the vomiting and all that stuff she was possibly in at the time but lol it would be different if it was happening to them in a place like that and nobody asked them if they were alright after all that.

[cindy1000000]

there is a character in the simpsons aswell isn't there who keeps being sick and i think his name is wendell./

[cindy1000000]

No one helped one girl who puked - thoughtful gits they must have been then it would be different if it were them.I would have comfurted her to make her feel better then ask if she was feeling ok after.

[readytodie26]

@cindy1000000 hey cindy

[readytodie26]

@cindy1000000 i had a dream thats was togather best dream i had in a while. you do know how much i love u

[plpanther]

I've thrown up so much with my CVS that the acid destroyed my vocal chords and now when I speak my voice cracks and squeaks.

[Roszanne]

@plpanther i'm sorry to hear that. my brother has DKA and now he's having tooth decays because of the acid he keeps throwing up.

[soniabianca]

@plpanther wow, that sucks.

[Roszanne]

my brother is suspected to have CVS. may i know any list of medications any of you take to help ease it? we live here in the philippines and we hope the medications you guys take are availabe here in our country. i'm sorry to hear your stories and i hope they find a cure soon. we can't take seeing my brother like this. he's been experiencing this for 1 1/2 years now and we still don't know how we can cope with it. it's devastating. ;(

[plpanther]

@Roszanne: I take cyproheptadine (I think it's spelled) for my CVS

[soniabianca]

@Roszanne nothing really worked that well for my husband...other than this anti nausea medication called Tigan. (and I think reglan helped too) It's a lot less expensive than others like Zofran. And, it's easier on the liver and kidneys. It's desgned for children with cancer. Most of the CVS meds really mess you up for the long term so be careful what you take. My hubby grew out of cvs after 10 years of having it really really bad...like BAD. So there is hope

[Roszanne]

@soniabianca thanks so much for the message. we take extra care with the meds he takes coz he's also diabetic but i think this helped. we'll ask his doctor about it. i also pray and hope that your husband continues to recover. may God bless your family.

[cindy1000000]

I dunno if I am getting this cause the last few days I have been feeling really sick,feel like throwing up (which I did in the bathroom sink yesterday) and I have like this horrible acid feeling in my throut which has happened for some days now,if it actually got any worse I don't what would do with myself..Infact I would more than likely kill myself,I can never live with this on me.

[Killerpiratekev]

I didn't start getting symptoms untill i was about 16. I am now 20 and every few months I go into an episode. I wish doctors would put more study into this illness. I am very confused it greatly effects my life my work and my relationships. There are few things more frightening than not knowing exactly whats wrong with you.

[soniabianca]

@Killerpiratekev I know, it makes you feel alone. And the doctors aren't worth a damn, but most people grow out of it eventually.

[GiovanniOxygen]

when does cvs go away? does it go away naturally?

[nancyzeppelin]

I was diagnosed with CVS early last year. It makes me happier knowing i'm not the only one. Even hearing about how the doctors and nurses don't know much about it, or how to treat it is so true. I can relate. I was in hospital numerous times, it always felt like they were doing the same thing and i would get a different doctor each time, with his new theory on what was wrong with me. Ever since hospital i have had extreme anxiety about throwing up (emetophobia) I really hope it stays away.

[matty2fatty123]

i just turned 19 today so its my 19th anniversary of having CVS and it sucks!

I would LOVE to meet someone that has it too cos i feel as though none of my friends understand it at all and they dont think its a big deal :(

[ALoveForOrcas]

@matty2fatty123 i turned 15 and i still have and my friends are the same way . . they dont understand how important it is and they act like its no big deal like you said . . ive had i was diagnosed when i was 2yrs still have at 15 . . i hope i grow out of it , i hate it ,no one besides my family understands that this is a big deal and they actually care . . i wish people knew more about cvs then maybe they would understand a little more . .

[DiscoFerret5674]

i have a stomach virus and i cant imagine having it forever that would suck.

[iElite6809]

Imagine being emetophobic (I am) and have CVS... your entire life would be in fear. I feel dearly sorry for people who have this horrible disease.

[dylansris]

i am emetophobic also and i could not imagine having this disease..

[crazyrainbowlover]

shame for that girl beein sick in a bin wiv no one helping her, it must be really hard to live with my heart goes out to anyone suffering from it, and I hope someday they'll be relief from it, my step dad suffers from it but I can't imagin how hard it must be to live with it

[ColdHeartsEnt]

Marijuana is a nausea surppressant.

[DanteLacey21]

animalFanaticNumber1, I can't imagine having CVS, its got to be absolutely horrible. I hope you get well, my prayers are with you.

[AnimalFanaticNumber1]

Thanks so much. Means a lot 2 me

[Krackerzify]

I have CVS. I have had it all my life, but my mum and dad only found out what it was when they admitted me to hospital 3-4 years ago. Up until then, all the doctors throughout my life told me it was just a bad bug. I was 13 when I finally found out.

I'm 16 now, and havn't been sick in over 2 years (touch wood) and long let it last.

My heart goes out to anyone else that has it, and good luck to you all. :)

[AnimalFanaticNumber1]

I was 2 when they told me that i had it. Don't remeber exactly but still it sucks like crap. My doctors think my "episodes" last to long (5 days) im used to it but still..sucks. glad to know someone else has it besides me. dont like the fact u live with it but i felt like i was the only on.. u know

[crazyrainbowlover]

Goodluck with that, it must be hard to live with being sick's a horrible feeling even when it happens once a year, goodluck

[crazyrainbowlover]

It must have been really hard to live with, goodluck with it

[mrmom442]

I also have this illness since i was 7 and it sux. I have used many pharmaceutical drugs but finally found one that works for me about 9 years ago. I use medical marijuana. i do not live in a state that has it legally but i use it anyways. Does anyone else use marijuana for their illness? I recommend it.

[AnimalFanaticNumber1]

I use Zofran. They just up'd my amount to 8 milligrams or miligrams. thats a lot

[nancyzeppelin]

I find it helps, for preventing nausea and if i am in an episode and can't relax/sleep it works great. However that's for me, i could imagine some people not enjoying it.

Oh and don't forget the whole lecture you get when you tell the doctors. That's the worst part about it.

[mrmom442]

Telling the doctors that I use Marijuana for the Nausea wasnt that bad for me although I did get a lecture on how dangerous it was blah blah blah. I am also aware that some papers written on the effects of Marijuana on symptoms of CVS all state that it makes the CVS symptoms worse. All propaganda. It works wonders for me. Just imagine, all the studies with patience using all those pharmaceuticals in trials and they still cant solve the problem unless people take 12+ pills a day. Lots of MONEY$

[nancyzeppelin]

Yeh man i completely agree. But thats the big cannabis debate isn't it? it's so resourceful and useful for so many things, but then again you can just forget it at the end of the day, because it's all about the money. Sadly, it could help so many people just like us that have CVS and haven't even tried cannabis for the nausea. There is no winning and there won't be for a while. But at least i know there is people out there like us who at least hope for it.

[mrmom442]

And with all the money being spent on trials and pharmacuticles, if they were to come forward and say that Cannabis works, that would raise alot of hell. I have emailed the author of this post and other agencies asking if trials were done with using Cannabis to prevent the symptoms. And to this day guess how many replies I have received.........0. They will not even answer one email from me. That tells me that they know it works and they dont want to loose their cash cow (PILLS & STUDIES)

[soniabianca]

@mrmom442 my hubby has had cvs for 10 years and he's on medical marijuana in Oregon. It seems to help with the agony of it all, but doesn't do much to prevent the nausea, as it is so severe nothing can touch it.

[beccababy73]

I have this! Diagnosed 2 years ago.. I am in a cycle now and some medicines do work, however I have had 17 ER and hospitalizations....Thank you for putting this on youtube. So many doctors are unaware of this disease

[holyoakproductions]

Great documentary! I have CVS...it's ruff.

[souldude81]

I think the best way to treat this condition is taking long walks outside during an episode. In reality it is about mind over body. Tell the brain to focus on something else other than the body. CVS and migrain sickness is probably linked to the nervious system and centrre of balance in the inner ear. It is like always feeling you just rode 20 rollar costers. So it is impossible to feel relief from the symptoms until you restore your balance again.

[juleez73]

My daughter had Leukemia, she is in remision after a three year chemo treatment, when the treatment ended, she developed something alike, acutally the doctor doesn't know if it's CVS. She vomits for a period of two weeks, nonstop, mostly during the night, then suddenly dissapears and she's ok, then another three weeks pass by and it comes back, she is currently under some treatment with pills for peptic ulcer and gastritis, but i'm pretty sure CVS is what she has.

[GREEKxISLANDxGAL]

I feel sorry for the girl in the end who says that she was having in episode in front of the main entrance one day and no one stopped to ask her if she was ok! How awful!

[Bloodylove84]

omg i have CVS two i just got over an episode today. it sucks big time cuz once i start puking i cannot stop. its worse when i have to get poked with alot of needles. but its getting better its not a friquent as it was

[XxkerienexX]

Im so glad you are feeling better, I agree the needles are not nice but i guess that is just something we have to deal with.

[summajaxon]

Im quite sure this is what I have. It first started in 1998 on my 22 birthday. I'd have monthly episode that would start w/ my monthly cycle. In 2001, I had my gall bladder removed and didn't have an episode for 2 yrs. I've had upper gi's, lower gi's, endoscopy, colonscopy. I currently take depo provera to stop my monthly cycles to keep this from happening so often. Since starting depo in 2006, I've only had 4 episodes which is awesome. I cant find a doctor in my area that knows anything.

[XxkerienexX]

You are not the only one that has found a link between the two, there has been many (including myself) that also experience this, nobody is sure why this happenes but many believe it could be the hormones relesed.

[Snoopo]

I only puke when Im absolutely fucked.

[DobermansRock]

I am not sure if I have it. For the last two years about once to twice a month I just get a cough that also I gag at the same time. Then I have to throw up. It feels like acid is built up in my stomach, and it comes on in the afternoon and night. Usually only for the night, and the next day I feel better. Today I drank coffe for the first time in months and it brought it on. I am 32 years old and male. Also if I accidently gag myself while brushing my teeth that will set it off that night.

[XxkerienexX]

This could be caused by many things, it does not sound like CVS because you dont seem to mention any Nausea (which is a main thing in CVS) the Acid sounds like Reflux which can be helped. CVS is very hard to Diagnose as it involves eliminating other illnesses which could present itself in the same way. Because of this it can take months or years for a diagnosis, but do hold on to hope. You will get the answer you need. Make a Diary of the time leading up to when you are ill (what you eat etc)

[DobermansRock]

I think it is stress related as well.

[XxkerienexX]

I have now been 4 months episode free and i am loving it. i want to celebrate the time i have left but i cant because when the episode comes again it will affect me twice as bad.

[sethcat99]

I know, I will fight it and fight it, I have gone for over a year and then it takes me a week to learn how to walk again. It sucks.

[rhodedendrite]

Currently I am celebrating being puke-free for 7 months, which is a record for me (the last time I was well for anything near to this length of time was about 12 years ago when I was about 10). My symptoms first became obvious when I was about 6 and was diagnosed when I was 13, after numerous hospital admissions , tests and seeing several different Drs. It was a huge relief to me to learn it was a "real illness" and not "all in my head".

Thanks again anyway, Nicola.

[rhodedendrite]

As a sufferer, I was interested in making a short film to help raise awareness, and was pleased to discover I had been beaten to it with this informative video....(to be continued)