I AmA 15 year old living with Cyclic Vomiting Syndrome, AMA

My wife has had CVS/Abdominal Migraines for the last 12 years (we were dating as teenagers when it started). I thought I'd share a few tips I've learned from cleaning up more vomit than you can...well, it was a lot of vomit.

1. Get a prescription for protonix. This won't cure you, but it will reduce the acidity of your stomach acid, which is really key for someone who is vomiting all the time. Less damage to your esophagus, throat, teeth, etc.

2. Identify your triggers. CVS is a kinda/sorta migraine in some ways, so treat it like a migrane: Are there any foods, activities, or environments that trigger attacks? Some triggers can be avoided, others are just a part of life. For my wife, plane travel was a big trigger, and it was easily avoided. Less traveling, but she'd just vomit for a week whenever we went anywhere, so it was an easy tradeoff.

3. Make a list of things that help. It could be having a fan on, having the lights off, having a wet washcloth, soothing music, etc. Then, when you are having an attack, try some of the items on your list. When you're in a bad attack, it can feel hopeless, and you can feel so weak that you can't do anything to help yourself. Also, it's a good list to give a helper, so they do things that actually might help.

4. Ignore the well-meaning advice of people who think it's like a flu, that you're bulimic, or some other idiocy. You'll have people tell you that you need to walk it off, or get outside during a bad attack, or that it's all in your head. Just nod politely and move on to something that might help.

5. Strive to continue your daily life. This is actually easier for you while you're in high school than it will be later (and I know it sucks!). Go to college. Explain it to your advisor, your counselor, and your professors ahead of time, so that they know what's up if you just don't show up one day, or if you run out of class in the middle of a lecture. People in high school can be cruel, but remember that there are many great and understanding people out there too. Ignore the assholes, find people who will treat you well, don't be ashamed to tell people about what you're going through.

6. It might take a long time, but CVS can and probably will eventually go away. For my wife, that happened when she got pregnant with our first child. Hasn't had an attack in the two years since then. Hormonal changes often cure this stuff, and since you're fifteen, you have a few left to look forward to. (Obviously, DON'T GET PREGNANT TO CURE YOUR CVS. That would be a stupid idea, and you might be a male, which would make it an even stupider idea.)

7. Accept that this might be your life for a while, and do the best you can within those parameters. I can't tell you how many people insisted that we keep looking for a cure after meeting with doctors for years and years. If I had a dollar for every time someone suggested the Mayo Clinic, I'd have like five dollars. Again, I suggest a politely nod and ignore them policy.

If it helps, this stranger on the internet knows what you're going through, and just how horrible and debilitating it can be. I also know that you can still have a great life and achieve great things while suffering through this. My wife graduated with honors from an ivy league school, and is getting a PhD right now to help people make better choices in their medical care. You can succeed even while you have that terrible taste in your mouth.

Thanks. It really does sting to have people say your just depressesd, or you are allergic to somehting. I do have an arangement with my school for if I am really bad, and they have been very understanding for the most part.

Speaking as someone with emetophobia, this disease would be my worst nightmare :(

You must have some pretty brass balls

As centizen24 says you just get used to it. It helps if you get otehr illneses that induce vommiting as you are more accustomed to it.

This may sound horribly unappropriate, but have you ever thought about trying cannabis. May sound bad, but under the supervision of maybe your father, it would be worth a try. Cannabis has strong anti-nausea benefits to it. It might be worth looking into. In my eyes anything is worth a try when your really unwell.

No I have not tried. As far as I can see the general concensus is that it makes it worse.

Are your teeth completely rotted to shit from all the stomach acid?

For some reason no, although it is a pain to keep brushing them after being sick, the combo doesnt taste nice.

I had CVS but grew out of it when I was 16 or 17, so there's hope yet. Have you tried migraine medicine? In the later years this worked for me quite effectively and there's been some research linking the two. Took way too long for my doctors to have me try it.

Yes I take migran medication, and it does help.

TIL I have this. I've had it for my whole life, and no doctor could ever tell me what it was. The Wikipedia article is my life exactly. I can't tell you how many times I've described the cycle concept to people. Good months, bad months...good years, bad years. I remember my worst years, 6th grade, 9th grade, and 11th grade. Throwing up at least 5 times a day for months on end. My parents took me to so many doctors trying to find out what it was. I was tested for allergies, ulcers, even for a brain tumor. The one doctor that ever gave me any sort of explanation was a gastroenterologist that told me that I could have inherited my mother's migraines as "stomach migraines". It was the only thing that made any sort of medical sense to me. Apparently he was right.

tl;dr TIL I have this.

Hope you get over it soon.

Have you ever used this condition for dramatic effect? Like, if someone proposes a really stupid idea, and you retort with "well, you know what I think of that idea?" and then you vomit.

No, allthough I can think of some times when I could have. After this long I can manyalu cause reflux becasue I am so used to the mucle movement, hovever I avoid doing it.

I have a few ideas for you if you don't mind.

1. Wear some MC Hammer style parachute pants to a subway station. Shout, "Stop! Hammertime!" and start puking while dancing until you are forced to stop by the transit authority.

2. Go to Panera Bread and order soup in a bread bowl. Consume the soup. Puke in the bowl. Tell your server: "seems to be something wrong with my order."

3. Find one of those hot dog cart vendors around lunch time. In full view of the people eating, puke on the sidewalk in hopes that they will start puking too.

4. "Hey, I have Cyclic Vomiting Syndrome." "What's Cyclic Vomiting Syndrome?" "BLURRRRRRRRRRGHHHHHHHHHH"

5. "Hey, kid, want to see something cool? BLLLLLURRRGHHH"

6. Perfect your technique so you can hit targets at a distance. And then use it if you are being mugged.

Just stuff I'd do if I had it.

Brilliant!!!!

How do you go about school? What is your regular day like?

I have an agreement with my school were I can come in even if I am ill due to it not being catchable, and also that I can leave without questuion if I am ill.

That really sucks. How bad is CVS for you, and have you thought about creating a 'reverse effect'? Like for example when people smell dog shit, they start to gag and vomit, but since you do that already, you can constantly sniff dog shit to relieve yourself from these horrible issues.

I have it pretty bad, longist time ill in one go was 2.5 months, but now its generaly a few days to a week. I havent tried the reverse effect thing but im a little doubtful.

Can I assume you're skinny as fuck and drink a lot of gatorade?

Dont have gatorade where I live. I can go from being super skinny to normal depending, it helps that I was not a skinny person to begin with.

1. How often do you vomit?

2. Best place to throw up?

3. Worst place to throw up?

1. it comes in spates.
2. Home, in the bathroom. Its just more practical.
3. Anywhere Public, and also public restrooms.

how did you finally get diagnosed? i have a friend who thinks she has this, she is currently diagnosed as coeliac but they tested her for everything before they got to that conclusion and now she still suffering cycles of vomiting despite a strict diet so she thinks she has this instead.

It was process of elimination, once they had rulled out everything else it is what I was diagnosed with, because of this it took a few years for them to come to the conclusion. It helps that here the helth sytem is very good, and also free mainly. I wish your friend the best of luck. Suggesting it may speed up the process.

Doctor's advice: stop cycling.

That'll be 75 dollars.

Free heathcare!

As an emetophobic, this is literally my worst fear.

All I can say is that I'm so sorry for you. I'll hug you if you promise not to barf on me. =(

Yeah, I know people who are emetophobic, but I realy try to avoid being ill near them.

How has this affected your schooling?

Luckily I have allways been a bit ahead of the curve, however I still find my self having to play catch up and do a lot of work at home.

When I had chemo, there would be certain triggers (usually smells) that made me vomit near instantly. Do you have triggers or is it entirely random?

It often grows from other illnesses for me.

As a person with emetophobia (fear of vomiting) this is pretty much my worst nightmare. Have you sort of "gotten used" to throwing up?

Its a tallent now.

Oh for fuck's sake. Came here to read about OP's situation, had to scroll for miles to get past everyone talking about how scared they are of vomit and how gross it is.

It was bound to happen, all we can hope is they dont all make it on to the top comment list.

I'm an ER doctor. I'd like to provide you with my perspective and I'm going to apologize in advance if this is too harsh. Cyclic vomiters are brutal patients. They feel sick as shit and they look like garbage (but who wouldn't be after vomiting for hours?). But as far as the ER goes, here's the problem -- they're actually completely fine. Very rarely are there any electrolyte abnormalities, very rarely are there any acute intraabdominal complications (Boorhaves, perforation, gallbladder pathologies).

Additionally there is a massive psychologic component to this (which is likely warranted - I wouldn't want to feel this way.) This leads to crying, anxiety, occasional hysteria and sometimes abusive behavior to the ED staff. This also applies to the patients families.

The combination of "not sick" + "psych" + "emotional" leads these patients to get decreased priority by the ED docs and nurses. (Why dote on the annoying 20 year old when you can help the actually septic grandma or dispo the 5 other people in the waiting room.) This is a vicious cycle.

My recommendation to you and people like you is to come up with a plan before you visit the ER. Discuss this with your doctor and have him/her type a letter up for you. We had a few cyclic vomiters who frequented the ER where I trained - they were brutal patients. One day one of them, his family, and the PCP got a plan together. He came in with a letter saying something along the lines of: "I have CVS. What works for me is 2L NS bolus, zofran 8, reglan 10, benadryl, random pain med, check Chem7. Re-evaluate in 1hr. If not better try haldol. Re-evaluate in 1h. If not better: Admit to Dr. Hospitalist." Suddenly things became so much better. We always ruled out stuff as necessary, but this massively improved the patient's, family's, and ED staff satisfaction with his care. Please come up with a plan like that for yourself and discuss with your PCP before you end up pissing off your local ER. (This plan should be written up and signed by a doctor. There's a good chance we will not believe you if you say I need lots of morphine and IV benadryl.)

Best of luck to you!

PS - Please don't try marijuana. Cannabinoid induced hyperemesis syndrome is also a thing. Those guys are just boneheads. (If you think the ER staff scoffs at cyclic vomiters, wait till you see what happens if your tox screen shows marijuana.)

I agree with you, especialy in an ER type situation CVS should not be a priority, and a plan realy can help. For me I have had the same doctor throughout this, and this has realy helped. Also I think it realy should be the role of the patient to make the job of the doctor as easy as possible, I have no shortage of respect for you guys.

My father (age 50) was "diagnosed" with CVS and spent over ten years trying to control it unsuccessfully, sometimes in the ER several times a week. A little bit of research (by me) indicated that he actually had "Cannabinoid Hyperemesis Syndrome," caused by chronic marijuana use. He stopped smoking pot and after a month of his body "detoxing" has not had a single attack in a year. I am not at all discouraging use of pot, but if you are a regular user and think you are suffering from CVS, you should at least try stopping for a few months and see if that helps.

I never have done and dont plan to.

How many times have you thrown up since you started this AMA

Once

Hey! I am a 20 year old living with Cyclic Vomiting Syndrome. I understand how difficult it can be going through episodes, as it can be different for every person. I used to get sick for a week every four months, so it wasn't for very long but it was quite intense. Since I turned 17-18 the time between episodes has increases dramatically, so stay optimistic that it will get better for you!

My question is, are there any strange and specific things that you do during an episode? For example, when I have a CVS episode, everything tastes different and bad, except milk, which changes and tastes amazing (plus its so easy to throw up in my opinion, much easier than water).

I prefer water, sometimes milk currdles in the stomach and goes bitter. I try to stay as close to the floor as I can because I get extreme dizzynes.

[deleted]

I sent the persription, but it has my name and other details on it so I cant link it here. :)

ITT: Lots of questions, no answers.

Been AFK

Have you ever puked on a subway car?

Thankfuly I have not, genneraly if I have to go out when I am ill I get a lift and take a bowl.

I think my son has a mild case of this. He's 11 now, maybe 5 years ago he started throwing up every three months like clockwork. It would take three days of nausea and on the third day he would throw up. Then he would be fine for three months again. The doctors didn't know what it was but were quick to suggest a whole bunch of different medications. Since it is only every three months we chose to avoid medications. I don't know if he has CVS - if he does, based on the replies here, it must be a very, very mild case. I can't even imagine what it's like to be throwing up every week or even every month.

I can recomend Coenzyme Q-10 and also Imigran. I dont know their names in English or if they are the same, but both of them can be bought over the counter in some places, imigran is for migrane, which can also come with CVS, Q-10 plays a part in mitochondria, again related. Imigran is best for the shorter attacks, but may not stop the vomiting. I wish your son the best of luck, and if it is CVS, just hope he grows out of it.

Do you have abs of steel?

Abs of flab more like. Im actualy fairly average.

Me too brother (diagnosed around 13, now 23). Hang in there. I got major relief from taking Aciphex (none of the other PPI or antacids did anything for me though). over $700 a month to function like a human, but beats the alternative. Of course, I have GERD from all the vomiting in my youth...

I smoked weed before getting that prescription, but it didn't save me from anything. Can make those crappy days a little better sometimes though.

I hope you don't get hassled by teachers and such, I had the hardest time being taken seriously. Good luck!

Thanks.

Out of curiosity, how does this syndrome affect your weight? I imagine you are skinny as a stick if you vomit all the time.

In the longer periods of illness I can drop a lot of weight, but I am CA 75Kg and just over 6' (180cm).

So, this may be a somewhat insensitive question, but have you ever puked on one of your enemies?

Not that I can remember, unless the floor is an enemy.

my brother (14 years my junior) had problems growing up. he was vomiting all the time as a toddler and not gaining weight. (I am also disabled since I was 3 for different reasons but I believe all my and his problems can be traced to my mother's heredity/polluted gene pool. my dad also has psoriasis and had heart problems as a kid, so my heredity is god awful) but i digress. i believe my brother (who thankfully is now a healthy 15yo) was misdiagnosed with "acid reflux". my mother has had migraines (and i'm sure she is bipolar or something similar because she is a bitch) all her life, and reading wikipedia, it has started to make sense. all things are connected.

i feel for you, OP, more then you know. i am sorry you have to go through this.

since treating the cause is impossible, when i was seriously nauseous, the smell of a fresh newspaper (print) or putting a fresh brewed cold tea next to my nose helped.

good luck mate, hope you find some way to punch through this

Yeah, genneraly it comes from your mothers side of the family, due to part of it being mitochondrial, I was diagnosed with both acid reflux and with Gastritus for a while.

Do you feel better after vomiting, or does the nausea feeling just stick around?

Sometimes it gets better, genneraly after a spate of completely uncontrollable vomiting. But often it can stick arround for quite some time, and there are other things that result from it, genenraly it can be exhausting to be ill for a long period of time, couple that with the lack of sleep and I can turn into a zombie at some times.

when's the lat time you hurled?

This morning. Bile and acid, its what prompted me to do this AMA

My 6 year old daughter has had issues that sound just like this!! She'll be exhausted for seemingly no reason, throw up a handful of times over a couple hour period, take a quick 20 minute nap, then be right as rain! We're going through potential diagnoses (lactose intolerance, stomach migraines) and trying to find what the problem is. The wikipedia article said the mean age of diagnosis was 6, which would fit perfectly.

Did you have similar issues regarding feelings of being tired/exhausted, then a quick bounce back?

Yes, it has happend to me, often I will colapse from exhaustion, wake up later and not feel anywhere near as bad. I wish your daughter the best of luck.