IamA 19 year old with Cyclic Vomiting Syndrome, a rare and painful disease. AMA to raise awareness!

You think a good way to raise money for your disease would be to have celebrities challenge other celebrities to get vomited on and post it on YouTube ?

i actually do, and you know what, i personally volunteer to do the vomiting as long as i get to throw up on kanye west first.

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i lol'd at this. this image could be the cover for my autobiography.

I would absolutely buy an autobiography with that as the cover. Please make this happen.

"your face literally makes me sick: a memoir"

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no, i'm in school learning to be a Massage Therapist. it's just down the street from my house, there's no way i could live alone at college right now.

Can you tell when an attack is about to happen? Because if not you might have a problem as a massage therapist.

my attacks are 99.9% first thing in the morning when i open my eyes, the only time i get them during the day is when a stressful or anxiety inducing situation triggers me, and that happens very very rarely because i have a pretty good control on my anxiety now. in those cases, though, i can feel it coming on with enough time to take some medicine, take a hit or two, or get out of dodge and find a trash can to cuddle up with for the next few hours if medicine or herbs are not available

i can feel it coming on with enough time to take some medicine, take a hit or two, or get out of dodge and find a trash can to cuddle up with for the next few hours if medicine or herbs are not available

nice to hear the herb does the trick! :D is that what you're referring to when it comes to "hit or two"??

yes (:

Zomg my 17 year daughter has these SAME issues. We tested her for literally years. The only thing that helped was antibiotics for an h pilori infection and that made it so she pukes every couple of weeks instead of EVERY DAY like she used to.... I'm gonna look all this up and see if maybe this is what is happening to my kid!!!

don't take this the wrong way but it makes me SO HAPPY to read these comments when someone says "omg i have the SAME THING!!!!" i know what it's like to not know whats wrong, definitely get to a stomach doctor and say you think she has CVS.

Holy shit, I think I may have had this now that you've raised my awareness! I'm still being treated for a variety of other conditions and symptoms, but the vomiting is the only one that stopped when I was around your age...so to my questions: do they think it's going to stop for you? Based on your link it appears it can stop, so any chance you have some hopes of kicking it?

Also, again based on your link, do have any triggers, or does it just seem to be happening totally randomly? In my case, I was misdiagnosed with several GI related disorders and food allergies for years because they assumed there had to be a "cause", and then it just sort of stopped o_O

the main reason i did this AMA was to raise awareness so that people who have this illness but don't know it might see this ad go "SHIT, I HAVE THAT!!!" because i went a very long time not knowing what it was and that was awful. It has been known to dissappear as people grow older, and it may go away for me some day, but to be honest i really doubt it. i've had this for 8 years now, and it's only gotten more severe as time has gone by. CVS is with me whether i like it or not, might as well accept it and try to live a regular life, if it disappears one day, AWESOME! but i also understand that it likely wont and that's okay, too.

as far as triggers go, i have a few. my most obvious trigger is traveling, i can't sleep anywhere but my own bed and my fiance's bed. travel anywhere for even one day, and i'm going to be really sick in the morning. also if i don't eat for a while and get really hungry, that can set off an attack. still not sure how that works, the pain in an attack is identical (but way more sever. way way way way way more.) to the empty pain you get from hunger. no idea how it works but getting hungry to me makes it hard to eat and if i get too hungry, puke time. my other trigger is anxiety, in any form. excitement or fear/stress/worries. i have anxiety disorders and bipolar, so this one is my biggest enemy. just a month ago, i was at a stop light and a person from my past who hurt me very bad pulled up next to me and we locked eyes for about 5 seconds. i got a pit in my stomach and when i got out of the car 5 minutes later i started throwing up. BUT, I can literally say "your face makes me sick." so, i guess i got that going for me.

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try smoking marijuana next time. seriously it works wonders. instant relief.

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niether. i like legs.

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there are a handful of things i do every day to minimize the vomiting. my case of CVS is relatively severe, as i have attacks very frequently and my episodes generally last a very long time, 3-4 weeks. First and foremost i take the medicine as i'm supposed to, and that helps because it makes my attacks occur less frequently. If i'm going to be getting in a car or traveling, i take zofran to keep me from vomiting (but it does not remove the feeling of "oh god i have to puke RIGHT NOW oh god its so painful GET IT OUT OF ME!" so its freakin' terrible, last resort.) the most important thing i do to keep symptoms at bay is stay full. the pain CVS brings is identical to the pain you experience when you feel hunger, just many times more severe. it feels like you are literally dying of starvation right then and there and i really have to keep my energy up so i snack all day long to stay full. when i feel hungry, it makes me feel sick and kills my appetite because thats how i feel when i throw up. its harder to eat the hungrier i get and if i skip a meal or two i can send myself into an episode. the thing i do that helps the most is smoke or vaporize medical marijuana. Its far better than any prescription medication i have ever tried for nausea, it is the only thing i have found that can stop an attack while it's occuring other than a hospital visit. i didn't discover the helpful qualities of marijuana until i was 17, and i've been using it to help with nausea and vomiting in conjunction with my medication ever since. from the worst pain you've ever experienced to just fine and ready to take on the day in 3 hits, no pill can give me that so far :(

Damn.
The nauseous feeling before the vomiting is more traumatising than the vomiting itself.

i agree. the most painful part is that plateu of nausea one second before the heave, you get that pain in your stomach and all of a sudden it just gets more and more and more intense until you just feel like you're gonna explode... and then you kinda do, haha. i don't use zofran unless i need to go somewhere/have no MMJ. it's really not that helpful to me either because you have to swallow it, and my attacks occur at the time i open my eyes in the AM. can't really swallow a pill while you're having a vomiting episode, cant take it before the episode cuz i'm asleep. meh. MMJ works.

There's a sublingual version of Zofran that doesn't need to be swallowed, just let it dissolve, I'm surprised that you haven't been prescribed that version. I know I couldn't have gotten it down/kept it in my system otherwise when I was suffering from morning sickness.

my doctor told me about it, but i chose not to use it since zophran doesn't take away the pain or stop the episode, just stops the vomiting. i only take zofran when i absolutely have to, it makes me incredibly dizzy and i honestly feel like while it stops the vomiting, it makes my nausea worse.

Huh - not sure if the other meds work for you, as I've only ever needed them for a combination of stomach bug from hell and morning sickness (so I can only imagine your pain), but there are several other medications that also work to stop vomiting. I found Zofran helped a little, but another medication called Reglan was amazing - it took away the nausea entirely and also has a sublingual version. The other thing that I've heard very good things about is Dicglegis, which is basically Unisom plus a hefty dose of B6. I have no idea if your vomiting/nausea has the same underlying physiology as morning sickness, but figured it couldn't hurt to pass on the info. You might find one that works better when the MMJ isn't going to work or isn't viable.

saved this comment and wil ltalk to my doctor about all of these next visit. thanks so much!

Eh that must be really boring.

different strokes for different folks.

I have long suspected I have this to some degree. I am on Paxil daily now and take Phenergan and Ativan when I need it. Some people think it's related to migraines. Do you?

i definitely do. my mom has suffered from severe migraines for a very long time, and so have other people in her family. my maternal grandfather also has a problem with throwing up in the mornings occasionally, and ever since i have been diagnosed my mom thinks he probably has CVS as well. i hope you're dealing with it well, PM me for my skype if you want support.

Thanks, I am now. I am in my 40s and it was pretty bad from about age 18 to about 30. I don't know if I outgrew it in any way. I forgot to mention that I take Protonix (for acid reflux) daily and that has helped me as well. Like you have noticed, diet, exercise, and stress all play a role in this. I know they have sometimes called this "abdominal migraines." Have you explored dealing with this from the migraine angle?

Have you explored dealing with this from the migraine angle?

i'm not sure i understand what you mean there, expand?

I mean see if migraine treatments help you at all.

i have not gone down that road yet, but i will definitely look into it now that you mention it.

There is a region in the brain that decides if you need to throw up or not. Perhaps deep brain stimulation of this region or its removal is needed. Have you considered this as a viable treatment option?

i've never even heard of that, could you give me a wikipedia link or something so i can read up on it? that sounds interesting!

This is crazy. I looked it up and it matched what's been wrong with me the last couple of years. I used to be 240 lbs and over a horrible 3 months of puking almost everything I tried to keep down (I could sometimes keep down simple things like veggies or soup but other times even a sip of water would have me dry heaving for 10 minutes) I went down to 160. It was a terrifying time of many doctors visits, all types of medications because my doctor didn't know what was wrong, and absolutely no answers. I finally decided to stop wasting my money and cope with it. I'm stoked to finally have an idea of what may be wrong. How do the medications you're on help?

first of all, i'm really sorry to hear about your struggle and im sure its fucking awful, i have been where you are. my medications help, but by no means is my CVS "gone." i just have attackes less frequently. when i get them, they last just as long (if i don't smoke) and are just as painful as normal, i just get them less. however, the nerves in my dick don't really work anymore, might as well rub my arm or get my finger sucked, so that blows (heh.) to be honest, as long as i smoke in the morning im fine for the most part, i wont likely have an episode that day, but i will still probably have sick to my stomach symptoms, no appetite (haven't had an appetite in years. even when i smoke.) and just generally crappy-ness. MMJ has really saved my life, i don't know where i'd be without it.

That's how I am as well. Smoking in the mornings to get rid of that initial nausea helps me a ton, although I still get randomly nauseated no matter what, I just don't throw up near as much as I used to. Marijuana really was a savior for me. I was in a super shitty place for awhile not being able to eat or work, just being stuck at home feeling like shit. I'm sorry you have this to go through as well. Especially since you were a kid. I had morning nausea around the age of 8, but it never turned to puking frequently until 19. If you don't mind my asking, what causes the nerves in your dick to stop working? The medications?

the paxil. its a super super super common side effect of SSRI medication. literally feels like im jerking off my arm. fml.

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first of all i'd like to say it's pretty offensive that you would say this. its a very touchy subject for CVS sufferers as we're often accused of being med-hungry addicts or pothead junkies doing this to ourselves and boy does that make us feel good. I have been diagnosed by a doctor and i've been to many of them that confirm it, and you just quickly googled something and supplied a personal anecdote to tell me my disease is actually something i caused and is under my control, it's not.

im glad quitting helped your nausea but it was not CHS, it was something else and cannabis happened to be a trigger, or maybe it didn't and the symptoms resolved when you quit smoking just because coincidence, this is why anecdotes don't work. CHS is not a recognized medical disorder, and for good reason. there is no proof to back up the claim. Regardless of the fact that i had CVS for 6 years before i ever smoked marijuana, that syndrome is based upon one study which was a train wreck. in this study they analyzed 98 people who had symptoms of nausea and vomiting and also smoked marijuana. there was no "expirement" done, they just surveyed 1571 people, found 98 with a history of recurrent vomiting with no other explanation for symptoms and if cannabis use preceded symptom onset, and thats it. they didn't say "okay, half of you guys quit smoking, half of oyu keep smoking, and lets see what happens." they just said "heres some dudes that are nauseated and smoke weed. coolio." Correlation does not equal causation, so where does this "syndrome" idea come from?

well, TEN patients out of the 98 followed up, ten. thats less than 8% of the study. 7 of them had stopped smoking and 6 had resolution of symptoms from this. so we got 6 people. out of 98. that means nothing. they didn't follow up with the entire study group and get them to stop smoking to check their symptoms, they just said "heres a bunch of people with nausea / vomiting that smoke marijuana. 6.1% (actual percentage.) of subjects experienced resolution of symptoms when they stopped smoking. the rest? who the fuck knows, who cares, we don't need to worry about them in order to demonize medical marijuana!"

CHS is not a recognized illness for a reason, and spreading misinfo about it can cause people with the very real illness of CVS to go undiagnosed for years while they attempt to self treat and self diagnose. it is highly probably there are underlying gastrointestinal problems in some people which can be aggrivated by cannabis usage, its far far far less likely that its got this magical new property we've never heard of in over 7,000 years of use that suddenly makes people sick out of nowhere.

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sorry for trying to help you, fuck you.

oh wow. you didn't even read my AMA, i stated i have had this illness since way before i started smoking and then you threw this pseudo science at me and got mad when i debunked it with logic..... i mean, i don't even meet the criteria for that illness if we assume it does exist. i was sick for a long time before i ever tried marijuana. feel free to read the study yourself, it's on the mayo clinic proceedings website. it's cofusing to me what the "fuck you" was for, but im not really concerned.

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As a fellow CVS sufferer, I always ask others this when I talk to them: dry heaves or acid vomit?

Do you find stress can send you into an episode?

mainly dry heaves. in the first "wave" of heaving, a tiny tiny bit of acid or bile will come up, clear and tasting HORRENDOUS, during really severe attacks i have more of it but its never more than enough to fill a shot glass. stress easily sends me into episodes, i mentioned in an earlier comment how i saw someone from my past at a stop light and the pit in my stomach from seeing him caused an episode to occur mid day.

edit: my attacks always occur first thing in the morning, so that's probably why.

When I first started learning how to deal with my CVS I tried to not eat and that turned out to be an awful plan. I prefer to always throw up some sort of food matter.

i find that the few times i've had an episode mid day (every one triggered by stress) and have had food in my stomach to vomit, the episodes are much less severe and less painful. that endorphin rush "ahhhhhhh" feeling you get after the heave is soooooooooo much more intense to me when i actually throw something up

First I have this too and have never met another with it! I'm glad you are doing this because this illness is so rare/weird! It sounds like yours is much worse than mine though :( Took them about 2 months of tests and throwing up every morning at 5AM before they got it and now its fully controlled with meds! I do get nauseous way more than is normal and my stomach feels off more often than not but there's no vomit and it isn't unbearable (more uncomfortable). I'm horrified that it took some people so much longer to figure things out! I guess I was INSANELY lucky!

And my question have you ever tried Elavil/Amitriptylin (I do 25mg tablets)? I'm 23 and have been taking that since I was 11, it pretty much "cured" me. I still have to take it everyday for it to work but it's better than the alternative!

my attacks also occur at 5am! weird! i haven't tried those medications, what kind of meds are they?> what do they "do?"

Have you ever been on an extended vacation? Has your condition affected the outcome of any vacation?

Also, the fact that you got your CVS prescription filled at CVS made me chuckle, sorry.

excellent question!!!! i was hoping someone would ask this. in short, yes i have been on vacations, but i certainly don't go on them anymore. i can only sleep at my house and my boyfriend's house comfortably. traveling is my biggest trigger, if i sleep somewhere else i can guaruntee you i will be sick in the morning. the first time i ever got sick i was actually on a week long cruise in the bahamas, i was 11 years old. that day i woke up and the plan was to go swimming with dolphins in jamaica, but i was too sick and had to miss it. i remember every second of that experience like it was ten minutes ago. i literally thought i must have been dying it was so painful. now im just glad i know what it is and can treat it relatively well.

Oh man. Thanks for the reply. As someone who always has to have his next vacation planned and uses that to get through the tough days knowing brighter ones are coming I can't even imagine never being able to enjoy that. I know this sounds like FWP but that experience at 11 years old just sounds dreadful. I hope there are brighter days in store for you in the future.

thanks for the good thoughts, don't feel too bad, i'm kind of a homebody anyway (:

Favorite sub?

sandwich: meatball

way: NYC

reddit: i hate to be boring but i spend most of my time on /r/videos

edit: formatting

What's the best version of the "ice bucket challenge" we can set up for this?

donate to the Cyclic Vomiting Syndrome Association, or go 2 days with nothing but water. kind of feel the pain we feel without the nausea and vomiting.

What would be the best way to help out someone with CVS?

be understanding and patient. i don't like to talk about my illness much, i feel like it grosses people out and talking about it can make me get anxious and sick to my stomach. it's such an up-and-down inconsistent thing sometimes, like, i'll go to school and be there for hours before suddenly getting very naseous or have stomach pain and i'll try to suck it up and wait it out without getting sick, but i first have to tell my teacher "hey im not feeling well, i may not be able to lay down on the table without getting sick, and i can't move much to give a massage right now." this is not only embarassing, it makes me feel bad because i'm making things difficult for everybody (numbers matter in massage school, we need partners!) but the worst thing is when i get better after 20 minutes. i feel like they must have all thought i was lying to get out of getting on the table, or to get attention, or whatever. "he was fine for 3 hours and then all of a sudden gets sick and then better in less than one? what a drama queen." this kind of stuff happens to me alot and im always worried people think im faking or being dramatic because of how suddenly symptoms can both come on and dissipate. so the best thing you can do is be understanding. i might cancel plans last minute, or plan to go to a convention with you but have to leave halfway through because all of a sudden i'm sick, or have to leave family reunions soon (happened last weekend.) and sometimes it's just going to look weird. it's going to look like i'm lying or trying to get out of something, but i'm not. i'm sick and im worried you wont believe me, so just be supportive and understand how sudden the illness is. sadly, i've lost a good number of my friends because of this illness.

I have often wondered that I have that. How do you deal when your medications aren't handling it?

very painfully. i smoke marijuana in the mornings to keep attacks from occuring or to stop them when they do, and it's never been unable to handle the attack and stop it, i hope i'll never see that day. before i used MMJ, i would just pray a lot and drink water, watch lots of TV to remove my thoughts from the pain and nausea, try to eat when i can, and just hope it goes away.

DUDE. My buddy has that same laptop AND vaporizer. My first question was actually "do you smoke/vape to relieve the pain?"

didn't even notice it in the picture, haha! to answer that question, i smoke to relieve the pain and i vape to keep it at bay. vaping isn't powerful enough to stop an attack unless i vaporize a lot, and taking a hit of vapor irritates my stomach A LOT and makes me heave, smoke does this as well but for some reason vapor is much worse. when im having an attack, or when i first wake up, i smoke because i need the combustion and instant relief. through out the day i vape to stimulate appetite or reduce pain if i'm having an ongoing episode and haven't eaten much.

But you're obviously on the more enlightened part of things, huh?

what do you mean? :(

As far as you having the ability to use such a wonderful plant for what it is meant to be used for.

ahh, yes.

What is your favorite passtime?

i really enjoy spinning poi, driving, and meeting new friends online on Omegle.

Sounds like fun :)

i keep CVS as a tag on omegle if you're ever around those parts :)

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luckily i don't because i mainly dry heave instead of vomiting acid or food, but i do have gastritis in my stomach from all the throwing up and acid in the stomach.

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my gastritis is very mild, and i take protonix (Pantoprazole in the picture) to help keep that under control. it doesn't really bother me.

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yes i do. The length really varies, the entire year i was 15 i only had one attack, it resumed again when i was 16 and got more and more intense very quickly. right now i find i get attacks every couple of weeks, either a one-and-done attack, or it will kick off a 3-5 day long episode of attacks before it subsides and i can go back to "normal". however, i wouldn't say i have "symptom-free" days anymore at all, because even when i'm not having an episode, i get nauseous frequently throughout the day, and my anxiety can easily spur on an attack so i have to keep a very watchful eye on that. i'm always getting worked up anxious over something and making my stomach hurt.

Have anyone embarrassing situations happened due to your disorder? Thanks for doing the AMA and I hope your doing well! :-)

i would say yes, but the other people around me would say no, because it doesn't bother them. i hate having to tell my teacher at school that im sick and hold up the class, and i was at a convention with a friend a few weeks ago, and i got stressed and had an attack in the middle of the food court and we had to leave. i felt really bad, we had only been there like an hour and a half, my friends are understanding but i feel like it annoys them and it embarases me.

Thanks for answering man. It seems you do have some great friends who are really supportive of you and don't mind. Don't be too hard on yourself though, you can't help having it.

yeah, my friends are understanding. i just worry because it always comes out of nowhere when it interrupts things, ill be 10/10 feelin good and then instantly drop down to a 3/10 and ruin all the fun just like that. they understand, though, and it doesn't happen often.

Have you tried acupuncture? I have had cvs along with NES non-epeleptic seizures and its one of the only things that works, especially auricular acupuncture (ear points) what's refered to as the NADA protocol, works well for any anxiety/stress. Mine would always start in the middle of the night, I'd wake up from a dead sleep and it could last for days unless I went to the hospital. I also practice yoga as the breathing exercises work well to lower the nausea. I used to smoke pot but don't need to anymore thanks to the acupuncture. I take 0 meds for it now too.

no i have not, i'm pretty skeptical of accupuncture but it couldn't hurt to try.

Can you have an attack while you sleep?

as far as i'm aware, no. that's never happened to me

What's your take on Dragonball Z?

sorry to be that guy but i don't like any anime except for FMA.

Do you have to go to the emergency room? Do they know what CVS is now?

I have had this condition since I was 10. I don't have it bad and only have episodes once every year or so. The worst part for me has always been the emergency room. No one believes me, they don't want to give me the shot of phenergan, etc...

Thanks for doing this AMA to raise awareness and good luck!

i've only had to go to the ER one time, and they didn't even listen to me when i said i had CVS. they just said i had a virus, gave me a shot of zofran (before i had it prescribed), and i went home after a few hours.

So you just ride it out? If I it get it it usually gets so bad that I am in extreme pain and on the way to dehydration pretty quickly.

My mom had migraines too and I have heard CVS referred to as a stomach migraines.

i smoke medical marijuana when i have attacks and that halts them immediately and allows me to eat again and go about my day. the only time it got bad enough to go to the ER was during a very very long episode.