IamA 19 year old with cyclic vomiting syndrome AMA!

Hello. Since an incident I had when I was 4, I became an emetophobic - My worst and most crippling fear is vomiting. So, I would like to ask you: How did you get used to it? How did you managed to overcome any fears about your condition?

I've been like this my whole life so I was never afraid of it and I've always thought it was so weird people could have a fear of something like that just since I deal with it all the time! It's no fun at all but besides the stomach pain that comes with it/burning throat and the interference in my life I actually don't mind the actual vomiting that much; to me it's like sneezing a lot if you have a cold.

How big of an impact does your condition have on your schooling? It seems quite rough...

When I was in elementary school it impacted it a lot because I would miss weeks of school so I got an independent education plan and was always pretty quick to catch onto things so I wasn't ever behind. In middle/high school I wasn't sick as often, maybe once a month, so it didn't affect me much. Last year in college it got really bad (was sick 4-5 days a week) and I did horribly but luckily my professors have been really nice about letting me make up tests and helping me out if I miss class. The dean is also involved and they consider me to have a disability so I get extra help/lenience

ER nurse here. I've taken care of a couple cyclic vomiting patients in my span. My question, how often have you been accused of being a drug seeker/pothead seeing as how they have correlated CVS with cannabis abuse? And finally, most CVS patients have been know to take multiple warm showers on a daily basis to halt nausea, which is unique to the disease. So does this correlate to you as well? BTW very fitting username.

hi! I haven't been sick long enough since I was very young to go to the er. I am only sick for a max of three days now and usually it's about 3-5 hours of constant vomiting and then a day of not feeling good. when I'm throwing up I generally don't have time or energy to get into the shower or a bath (I'm throwing up like every 3-5 seconds and can't move) and when I have my stomach pain for like an hour before I genuinely can't walk it's so bad so I've never tried a shower or bath since I can't make it to one and I can't stand in the shower and I think I'd drown in the bath lol. I also don't ever ask for pain meds or anything and just go with what they recommend so my doctors have never thought I was drug seeking. it sounds bad but I do think some people with cvs expect too much medical care and drugs; I hear about some of them going to the er after less than a day of being sick (when I was young my parents would wait at least 4-5 days of constant vomiting) and even though the pain sucks and it's so bad I can't move or talk I really don't think pain meds are necessary in most cases and it's more important to stop the vomiting for dehydration and I know some people with cvs ask for pretty heavy stuff when honestly their episodes aren't that bad yet which I think makes a lot of doctors think it's a drug seeking problem

ahhhhAHHHHHH i will do ANYTHING to not throw up. everyone's like "you'll feel better afterwards" and i want to PUNCH THEM IN THE FACE. i would down ALL THE MEDICATION ANYONE GAVE ME FOR THIS.

It's really not that bad. It's like being afraid of bee stings; most people who are scared rarely have it happen and it's just the anticipation that's scary. If you just don't think about it it's not bad especially if you're just throwing up a couple times

Hey, I don't really have a question, but I do have a gastric illness and have to use medication as well just to function as a normal human being. So I really sympathize with you. It sucks having to live with side effects of medications and what not, as if the illness itself wasn't bad enough. Anyways, I hope your new medicine works out well with a minimal amount of side effects so you can live a normal life. Crossing my fingers for you.

Thanks! I'm hoping it works too and things work out for you too!

Is there anything that sets it off? Or does it just show up like an annoying neighbor that ruins your rug?

I honestly can't figure out anything that sets it off. I've been tested for various allergies and have tried removing foods for intolerances and there seems to be no pattern. For some people with cvs it's related to migraines and I know migraines can have physical/mental triggers so some people know they have triggers and can avoid it but I don't have any. Usually I'll feel fine all day and then I'll start getting a familiar stomach ache and know I'm going to be really sick in an hour.

With the vomiting being so frequent, do you actually get used to it or is it just awful every time? I really feel for you right now, it's terrible enough vomiting on and off for a day, but to having to constantly live with this... I hope the new meds help!

Thanks! I'm pretty much used to it. I also generally have stomach pain that comes before the vomiting which is the part that's really bad for me; except for when I barely have a chance to breathe when I'm vomiting super violently every few seconds for the first hour or so I honestly don't mind throwing up. Sometimes I randomly throw up like once or twice and I barely even think about it and just keep on doing whatever I was doing (unless I have to clean up lol)

How does this condition affect your social life?

I have to cancel plans suddenly a lot which sucks especially if it's people I don't know very well in which case I say I got the stomach flu. My close friends know what's going on/most have seen me get sick so they understand but it sucks because I've had to miss out on a lot of fun stuff.

I am also an emetophobic. For me its the nausea thats the worst. Does your vomiting always come with nausea or does it happen with just pain. I guess Im asking if your condition makes you nauseated all the time?

I'm nauseated sometimes but not all the time. Like sometimes I'll be nauseous for like 10 minutes but usually i throw up because of abdominal pain and I might be nauseous but can't tell since the pain is so bad

Hey! I can sort of fell your pain. I have severe gastroparesis and a feeding tube, and went through horrible vomiting from the GP until I had a G tube to vent from. We take some of the same meds. Don't worry about the amitriptyline! I take a similar drug, imipramine, for narcolepsy with cataplexy and it's really not bad. Just because a drug lists possible side effects doesn't mean you will get them! Are they using the amitriptyline in case you're having silent abdominal migraines? I've heard it's good for migraine. I take topamax for migraine because the amitriptyline wasn't strong enough for me. I hope it works for you!

Also, have they ever given you Levsin (hyoscyamine) or bentyl for the abdominal pain? Those drugs specifically target GI pain and are amazingly helpful! I get the hyoscyamine in sublingual dissolving tablets like your ondansetron.

Thanks! My doctor kind of scared me about the amitryptyline haha. She kept going on about how she doesn't want to prescribe it so we tried lots of other stuff before this because she didn't want to prescribe it. I'm not sure what exactly the amitriptyline is targeting; i do get abdominal pain but my doctor is in accordance that abdominal migraines aren't really migraines like head migraines (if that makes sense) so she doesn't think they should be treated like head ones since she thinks the cause is different. She said she was prescribing it since it's commonly prescribed for cvs; so it might be for the pain! So far I've only had the vomiting targeted and not the pain (except for during testing) but I think at my next appointment I'll ask her more about that since you've found stuff that helps! It's what bothers me more than the vomiting so I should try ask about it. Thanks for your advice and I hope everything goes okay for you with your medical problems!

I had GP and for now it is gone, amitryptyline is prescribed for insomnia, depression, anxiety as well as function dysepia (unknown stomach pain) The first week I was on it was horrible but after that it got better, I hope it helps!

thanks I hope it does too and I'm glad it helped you out!

Does this affect your ability to maintain a healthy weight? Does it result in you having to eat a lot more just to get in enough calories/nutrients daily?

In general I've never eaten a lot. When I was really sick last year I went down from 108 pounds to 95 but now I'm back at my normal weight. I was anemic when I was younger but I'm fine now in that regard and usually eat really healthy foods so being sick for one or two days a week isn't a huge problem nutrition wise.

How has it affected your dating/love/relationship life?

Similar to social life, I have to cancel plans a lot. My last bf who I'm still best friends with is very supportive and was always helping me out if I got sick/asks me how I am and about doctors stuff. I only had one other boyfriend when I was an underclassman in high school and I didn't get sick too often then but he knew that I "got the stomach flu" a lot and was nice enough about having to cancel plans

Do you have a Mac?

I used to but right now all I have is an ipad mini haha. I use the school computers for stuff I can't do on my ipad. I don't like windows and my computer broke and I couldn't afford a new Mac so I decided on an ipad and it works out well enough.

I am thinking about getting a MacBook Pro or air but not sure which is better. They are both expensive. What do you think?

I'd go with the air! I'm getting that in a few years when I can afford it. Unless you need it for super high powered stuff for work I don't know why anyone would need the pro over the air; I always assumed the reason more people had the pro was since the air was more expensive but it's not! My old one was the regular white MacBook and I loved it.

Seems like they are both the same price. Thing is the air is lighter but pro has a retina screen which is supposedly way better. Also the pro has a hdmi port which I might use. Why is this decision so hard?

I don't know then! I'd probably get pro if they're the same price. I used to want a pro instead of air before they took the cd drive out of the pros but them doing that made them the same to me besides price. My friend who is really into computers doesn't really like apple but got a pro just for the retina screen and I can't see a difference but he says it makes a huge one so if that's important then go with that! But if you plan on taking it tons of places then the air might be better since it's lighter.

Maybe I should just wait a bit huh?

Yeah I'd probably wait a while! I'd only get the ipad instead of laptop if you have access to other computers since there definitely is some stuff I can't do on my ipad and need to go to a computer lab at school for. If you're not desperate I'd wait a year or two to see what they come out with

Sorry to hear about it. How has your roommate situation been in college? Did you have to explain to her?

My school actually has mostly single rooms (at most schools it's hard to get a single; I requested a double and didn't get one!) so I didn't have a roommate. This year I'm in an apartment with roommates so they know about it because I take up the bathroom when I'm sick and we were friends last year so they knew about it already and they're really helpful when I'm sick! They go pick up work from professors for me and help me get to the health center if I need to.

Do you drink alcohol at all? If so, does it affect your condition in any way?

I'm sure you've heard enough questions about your illness. Do you have any hobbies? What's your favorite food?

I do but I don't go out usually more than once a week and don't drink too much. When I was regularly on the antiemitics I wasn't supposed to drink a whole lot since then if I needed to throw up it would be bad.

I am starting to run a lot now! I'm hoping to do a half marathon this summer. I used to swim competitively so I still do it when I can but the pool hours at my school make it hard. I also read, watch tv, etc. nothing super cool! My favorite food is probably smoothies (even though it's a drink haha). I make one every morning!

God the worst part is being labeled a drug seeker. My husband has dealt with this for all his life. I actually have to take the time to dress nice and have perfectly applied makeup when I take him in to the hospital so at least I look professional and it has helped. Since our move a few years ago and having to go to e new hospital he was treated by an er doc familiar with the CVS and has been treating him for a while now. He actually started him on COq10 and it seems to have helped considerably.

I hope it keeps working for him and he'll find something to really help eventually! I haven't been to the er for it since I was little and would have week long or longer episodes and mine only last like 3 days max now so the only doctor I see for it is my gastroenterologist and the school doctor so luckily I have had problems with it. I've also never asked for pain meds or narcotics so I think that's helped but luckily I've never had anyone think I'm a drug seeker. I always read about how that happens to people with cvs though and it's so upsetting.

[deleted]

No, I haven't. My stepdad and brother both smoke and the smell makes me sick to my stomach (my brother has a card and he takes it for chrons and I know it helps him a lot). I really don't have any interest in weed and I am also concerned about it because there is a condition very similar to mine http://en.wikipedia.org/wiki/Cannabinoid_hyperemesis_syndrome that is actually the main cause of cvs in adults (although it's very very rare still to happen to regular weed smokers) and results in doctors not taking you seriously because they have a very curable form of cvs. Not wanting to take the chances of getting combined with my lack of interest/the nauseating smell I don't really want to.

I'm a 23 year old girl with CVS as well. I feel your pain! Have you been able to pinpoint triggers for you? I know for myself stress/anxiety and certain foods are big for me. Also, did doctors have difficulty diagnosing you in the beginning? I was diagnosed when I was about 8 or 9, but that was after a couple of years of trying to figure out what was wrong.

hi! I was diagnosed when I was about 9 after I'd already been hospitalized for the stomach flu like 10 times lol. I just started at an adult gastroenterologist and did more testing to still make sure it's not other things as chrons runs in my family and my older bro developed it about this age but from what I remember my testing wasn't bad! my pediatrician told us I might have it but it is rare and then my gastro did like five tests from what I can remember and then said I had it. I really don't think I have any triggers; it seems completely random. I'm never stressed or have eaten a specific food or anything. 90% of the time I wake up after having slept for like an hour and am really sick

Does this have any negative health effects other than throwing up? Is there any damage to your teeth and throat? Also, sorry you have this condition. I hate throwing up.

I have slight heartburn sometimes but otherwise luckily no! My teeth are really good (no cavities in my adult teeth yet) and I always get compliments on them. But it's obviously not good for you so it's important to try and get it figured out

Thank you for replying! If it continues and you feel you're at risk for enamel damage there's pronamel brand tooth paste out there.

Thanks I think I might start using it! it sounds dumb but my teeth are my favorite thing so I've always been scared about them and in addition to needing to be able to not be sick and miss stuff all the time I want to get it figured out so they'll be okay too haha

You might want to also think about getting to see your dentist more often (every three to six months, depending). They'll probably give you fancy toothpaste that is specifically for repairing enamel.

I go every six months but am not sure if insurance will let me go more. I know dental and health aren't connected so maybe I can see if dental will let me go more if they're told about what's going on

i recently have just been overcoming a form of cyclic vomiting brought on by cannabinoid hyperemesis syndrome (which i know sounds rediculous but it's basically smoking so much weed that your body loses its ability to regulate your gastric motility or blah blah). anyways, they gave me some pamphlets that said it would often lead to compulsive bathing, which i then realized i was doing because i had been showering 3-4 times a day without realizing why i was doing it. turns out hot showers affect the same cannabinoid receptors as the ganja or something. anyways, do you find a hot shower helps?

I posted about that earlier! apparently a major cause of adult cvs is cannabis hyperemesis syndrome. when I am sick I genuinely do not have the energy to take a bath or shower because I am vomiting so violently I can't move from where I am and I can't walk or anything all I can do is lay down. I usually take a shower after I've stopped and I've slept a couple hours just since I feel gross but I don't know if it would help! my nausea doesn't last long enough before I get sick to take a shower or bath

Thanks for doing this AMA!

I can somewhat relate as I have COPD, and almost every morning I'll spend about a half hour or so mostly dry-heaving as my body tries to expel the sputum I've inadvertently swallowed during the night. (Blah... sorry for that info.)

Anyway, how are your eyes? I'll have days where I don't want to leave the house as the strain makes me look like a tweaked-out junkie.

aww I'm sorry that sounds so horrible! my eyes get messed up sometimes but usually if I was sick enough the night before that my eyes look super bad I'm too tired to go to class and work so luckily no one sees haha. I'm not looking forward to when I have a real job and will have to go out looking crazy

Does it ever come on unexpectedly, say when you're mackin' on some dude?

Have you ever met someone else with the same condition? Would you share a toilet/bucket romantically like the Lady and the Tramp spaghetti scene?

haha no it hasn't! most of the time it happens after I've bee sleeping an hour or two. otherwise I get a really bad stomach ache for like an hour so I know it's coming luckily.

Have you gotten an MRI/x-ray of your head? Not to say "oh you have cancer" but it is theorized that tumors in the motor cortex can induce repetitive vomiting or seizures.

(Hope this doesn't get downvoted to oblivion)

I had an MRI when I was younger for something unrelated but I'm guessing they would've seen it if I did

When you have an episode, is there anything that you do to help get you through it? Like thinking of a happy memory or cuddling with a pillow that has Nicolas Cage's face on it?

haha not really! To be honest I can't really think much when it happens. It's really weird and hard to explain but I can't really think/even talk to anyone when it happens and I guess I kind of turn into a robot? Not sure the best way to word it haha

[deleted]

I've always been very light but I'm not sure if it's because of this. even in high school when I got sick about once a long I weighed 108 pound the whole time but I've also always been very active except for last year when I was at my most sick 4-5 days a week. I lost 13 pounds then but am now back at my normal weight

I think have the same medicine, but luckily I only have to use it once a year at the most for nausea related to kidney stones. Does it make you really really sleepy? I feel like I'm being put under once I've taken it, I feel my body parts 'go to sleep'. Really eerie feeling.

The first medicine they gave me made everything worse (I couldn't drink water to get it out) and I ended up losing seven pounds in a week, but you know I was wanting to go on a diet /s haha.

The times I've used it for just nausea it makes me sleepy but when I'm going to be sick it doesn't really do anything to me! I feel like it's similar to Dramamine though which I take for motion sickness and even the nondrowsy of that makes me really really sleepy in the super weird way you described. It's bizarre because sometimes I'm awake but my body parts are asleep.

I will have to check the label to see what it is called for sure then. Its works fine for nausea, but not so great when you feel fine otherwise and need to go to school/work.

Yeah mine works for nausea but not vomiting for some reason! I think it's probably because I vomit from the pain I get and not from nausea. Not sure. I'd guess they're probably the same medicine! This is the generic zofran which is the typical antiemetic used for cancer patients, people recovering from surgeries, people with nausea for whatever, etc.

Have they tried other "big gun" anti-emetics besides zofran, like Emend or Kytril? I had some bad cv after a stomach surgery that wouldn't respond to IV zofran with enteral domperidone (same family as Reglan, if you've tried that), and they got some Emend from the cancer hospital for me which worked wonders!

I haven't yet! I've been on zofran for about a year now and am taking amitryptyline for about a month to see if it works. If it doesn't I don't know what my dr is having me do next! I'll see if she suggests those

Apologies if this question seems a bit naive, I have never heard of this syndrome before!

What do you do in terms of eating if you have more severe episodes where they last for a day or more? I imagine it might be hard to keep food down if something like this was to happen.

I just don't eat and try to drink water as much as I can. When I was little and my episodes would last for a week or more (now they are very max three days, usually only 3-5 hours) I would have to be hospitalized for dehydration. I'm not really hungry when I'm sick so not eating isn't a big problem!

How is your voice quality? Have your teeth suffered any decay?

I've answered this before (I'd try and link but I'm on mobile so it's hard!) but basically the answer is luckily my teeth and ever hung are actually in pretty good shape

Do you ever have to run to the bathroom and vomit when you're in the middle of lets say work or class? Have you every just vomitted out of no where in the middle of something? How do you feel when this happens?

Yes, I've had that happen before but I pretty much always make it to a trashcan or toilet on time. I usually have about an hour of stomach pain first too so I know it's going to happen

How's your oral hygiene affected by your condition?

http://www.reddit.com/r/IAmA/comments/1tdch1/iama_19_year_old_with_cyclic_vomiting_syndrome_ama/ce6xv4i

answered here! basically my oral hygiene is luckily still good

How has this affected your health ? As in, do you never gain weight ? Do certain foods trigger episodes ? Have your teeth been damaged by the the vomiting ?

http://www.reddit.com/r/IAmA/comments/1tdch1/iama_19_year_old_with_cyclic_vomiting_syndrome_ama/ce6wwzu http://www.reddit.com/r/IAmA/comments/1tdch1/iama_19_year_old_with_cyclic_vomiting_syndrome_ama/ce6xv4i http://www.reddit.com/r/IAmA/comments/1tdch1/iama_19_year_old_with_cyclic_vomiting_syndrome_ama/ce6t2pf

I answered these here!

Do you also feel nauseous or is it just basically a reflex you have no control over, like hiccups?

I sometimes feel nauseous but most of the time I get a really bad stomach ache first and vomit from that. I think I throw up more easily than most people from other things though and if I don't have a stomach ache I'll be nauseous for like 5 minutes max and start vomiting

Hey, I had this when I was younger too! Finally got over it in my junior year of high school and now that I'm 21 I haven't had an episode for about five years. It sucks, doesn't it?

yeah it does! I'm glad you got better! we were thinking I outgrew it in high school but then it got so much worse I don't see any chance of it soon but I hope it happens

[deleted]

I don't think either? like I just throw up very hard. If you've ever had the stomach flu or food poisoning it's very similar. might not be understanding the question though!

Hey! So, I was diagnosed with this prior to figuring out that my vomiting issues were significantly much sinister than pure vomiting. (Sphincter of Oddi Dsyfunction, Gastroparesis, and Severe Chronic Pancreatitis are my ultimate diagnosis) Do you also get horrible abdominal pain with your episodes? Do they require short term ER visits? (I know you said when you were young it required hospitalizations) For me when I had "just" cyclic vomiting it was so bad that even at 20 years of age I'd have to visit the ER every 4-6 months for fluids for those horrible episodes. So, I'm just wondering.

Also vomiting is the worst. My issues got so bad they had to install a feeding tube and I must say it sucks but one of the highlights is being able to vomit through the tube vs. having it come out through my throat/mouth. So I sympathize with you greatly.

I'm sorry to hear about that but i hope you're getting the medical help you need and can improve! I so get abdominal pain so bad I can't walk/stand or talk. I have not had to go to the er in years since my episodes last about five hours to three days max so I don't get severely dehydrated so there's no need to go. When I was little my parents would take me after I'd been sick for 4-5 days and were worried about dehydration and I'd get fluids there.

Would you like to try another approach?

http://www.thrivingfamilyhealth.com/blog/2013/01/cyclic-vomitting-testo

I've been tested for celiacs and have done food trials removing various different food items from my diet (including gluten) and it did not change anything

[deleted]

Oops I blocked that out on one medication list but not the other! The minocycline and orthotrycyclen lo I take for things not related to my cvs. I'm not on the minocycline anymore but it didn't make me get more nauseous than when I wasn't.

What's the best way to get rid of the taste after an episode?

I always drink some water and then fall right asleep and after I brush my teeth and it's gone

what's your favorite animal?

Turtles!

Has anyone ever accused you of being bulimic? I know this is really late sorry :/

It's okay I'm still answering questions! I'm on winter break so I have a lot of time to periodically check especially on my phone haha

No doctors or anything have but sometimes when I tell people about it they'll say "that's really not good. You shouldn't do that" like they think it's something I try to do/am bulimic. A school psychologist also thought I was bulimic when I had to go see her about it and it was really frustrating

Have you considered medical marijuana?

http://www.reddit.com/r/IAmA/comments/1tdch1/iama_19_year_old_with_cyclic_vomiting_syndrome_ama/ce6tydi

Answered here!

Since you blocked out mediations except one. I couldn't tell without you possibily getting asked at least 10x if you take Zofran to help with the nausea?

Never mind. My preggo brain forgot that you mentioned Zofran. What are the other two meds that you take that you blocked out? Does the Zofran help? Are you on the 4 mg or 8 mg? I'm on Zofran myself due to the horrible nausea that many pregnant Mamas gets. Will this be a life long disorder? Take care, girly!

When I was blocking out my stuff I was worried about accidentally leaving in too much personal info haha. So I blocked out my medications that I take that are not used to treat cvs (gastroenterologist keeps a record of all medications you're on whether or not they prescribed it; it's a birth control and a skin medication). I didn't need to block them out looking back on it but was worried haha

I take odansetron which is generic zofran. When I'm just nauseous without vomiting (which is rare) it helps but it doesn't help when I'm actually going to be sick. I am on the 4 mg dissolving one that's the first picture! It really doesn't help me much but I've been using it for about a year. I've had this condition since I was little and a lot of people outgrow it which my doctors thought I was but it came back last year much worse and doesn't seem like it'll get better soon.

[deleted]

yess

im a girl btw

haha I wanted to say it so people knew what to address me by or else they'd keep saying he