22 November 2011

Marijuana and Cyclic Vomiting Syndrome


I have been working as an ER doctor for over a decade, and in that time I have come to recognize that there are certain complaints, and certain patients who bear these complaints, that are very challenging to take care of. I'm trying to be diplomatic here. What I really mean is that there are certain presentations that just make you cringe, drain the life force out of you, and make you wish you'd listened to mother and gone into investment banking instead. Among these, perhaps most prominently, is that of the patient with cyclic vomiting syndrome.

The diagnosis of cyclic vomiting syndrome, or CVS, is something which is only in recent years applied to adult patients.  Previously, it was only described in the pediatric population. It has generally been defined as a disease in which patients will have intermittent severe and prolonged episodes of intractable vomiting separated by asymptomatic intervals, over a period of years, for which no other adequate medical explanation can be found, and for which other causes have been ruled out.

That is not seem to exist much in the way of good literature about this disease entity, which is surprising, because it is something that I see in the emergency department fairly regularly, and something with which nearly all emergency providers are quite familiar. These patients are familiar to us in part because we see them again and again, in part because they are memorable because they are so challenging to take care of.

Some things about the cyclic vomiting patient that pose particular challenges:

  • The intensity of their vomiting symptoms tends to be very severe, and refractory to most standard antiemetics. 
  • The amount of affective distress the patient demonstrates is usually quite disproportionate to the severity of their symptoms, which is actually saying something, since they can at times be fairly ill. This often manifests itself as a patient who is ultra-dramatic, writhing on the gurney, or hyperventilating and sobbing in a knee to chest position, refusing to talk to the care providers. This can create the perception among care providers that the illness is psychogenic, a perception which is reinforced by the fact that there does seem to be significant association between CVS and mental health diagnoses
  • Patients often will engage in behaviors which seem to be willfully making their symptoms worse, such as compulsively drinking water or being seen to induce vomiting by putting their fingers down their throat. 
  • Coexisting with the vomiting is often a fairly severe complaint of abdominal pain, for which no clear diagnosis can be established, requiring in some cases high doses of intravenous narcotics. CVS patients are interesting in that sometimes the only agent that will stop the vomiting is hydromorphone. (For the nonmedical readers, it is worth noting that hydromorphone has no anti-vomiting properties, and in fact causes many people to vomit.) This requirement for narcotic medication supports a perception that the patient is drug addicted or drug seeking, itself reinforced by the fact that patients tend to come back to the emergency room several times in quick succession for recurrent vomiting. (For this reason, some have referred to CVS as an "Abdominal migraine.")


All of this makes management difficult in the setting where there is fairly little in the way of evidence-based guidelines, or even much in the way of expert recommendations or academic agreement on the definition of the syndrome. My observation, over the years, is that while Zofran and Reglan and Compazine can in some cases be helpful, in most cases they are not. I have however, had very good success with the use of benzodiazepines such as lorazepam or midazolam. Benzodiazepine seem to work in 2 ways: they are well known to have anti-emetic properties, but they are also quite sedating, and the patient does need to be awake to vomit. Interestingly, while use of normal vomiting medications seems to drive patient requests for narcotic medications, when I use the benzodiazepines, I almost never have to co-administer a narcotic. Since I have made these observations and implemented them in my personal standard treatment protocol, I found that CVS patients are much easier to care for, both in the sense that they're less emotionally draining for me and in the sense that they get better quicker and go home feeling better. It's not clear to me whether this treatment protocol results in fewer bounce-back presentations to the emergency room, but I would be very interested to find out if that is the case. (Interestingly, the use of hydromorphone seems to increase the likelihood of bounce-back presentations.)

I'm a little curious whether propofol could be used to manage the vomiting of CVS, since it is also known to have anti-emetic properties, but given the demise of poor Mr. Jackson, I suspect such off-label uses of that medication are not going to be encouraged.

One thing which I've recently become aware of, in part through our good Aussie friends at Life in the Fast Lane and in part from a journal club that I recently attended, is that there seems to be a fairly strong association with marijuana use and CVS. In fact, there has been proposed a disease entity called cannabinoid hyperemesis syndrome which may possibly represent the same clinical syndrome of CVS, or at least a significant overlap. This is particularly interesting because marijuana is in fact generally perceived to have antiemetic properties. Leon Gussow, a toxicologist who blogs at The Poison Review, has a nice write up over at Emergency Medicine News, where he speculates:
Because cannabinoids are lipophilic and have long half-lives, they may accumulate with chronic heavy use to the point where they start to exert a paradoxical effect. This may be related to their well-described ability to delay gastric emptying and decrease gastrointestinal motility.
However, I would temper that against the observation that in CVS patients gastric motility and gastric emptying is often increased.

Since I have become aware of this association between marijuana use and CVS type presentations it has been my “good fortune” to care for nearly a dozen patients in the emergency department who self-reported diagnosis of CVS. Curiously, of these patients about 10 admitted active marijuana use, and the 2 who denied it had positive urine screenings for marijuana. This does not exactly make a case series, but is certainly another interesting observation. Of course, since the prevalence of marijuana use in our Emergency Department seems to approach 100% sometimes, this also may not be a statistically significant association! Each of these patients was counseled about the possible causal relationship and advised to stop smoking the devil weed. Lord knows whether they will or not, but maybe it will actually do something to reduce their ER visit frequency.

I'd be interested to hear your observations on this matter, whether other ER folks have noticed the same thing.


UPDATE: Comments closed as they have been getting excessively abusive.

72 comments:

Dave said...

Until we can establish legitimate trials with standardized dosing, we're forced to accept "marijuana use" as smoking marijuana. The simple facts are there are many ways of dosing the drug BESIDES smoking it: vaporization, ingestion (brownies?), sublingual use, and of course PO marinol. Smoking anything increases the likelihod of stimulating the gag reflex. The same goes for inhalation of heated vapor. But what about ingestion of pot brownies? And what potency brownies are associated with what side effects?

Not House said...

One ER staff I did a shift with told me he used Clonidine on these patients - his logic was that it was slightly sedating (useful in the way you mentioned above), and the anti-sympathetic action promoted gastric emptying (even I thought that was a bit of a stretch).

Anonymous said...

When I worked at a large teaching hospital in Virginia I encountered one patient reporting cyclic vomiting syndrome and it immediately struck me as a great option for Munchausen by proxy. The patient was a 12 year old girl who arrived with her rather large family and reporting a recent period of uncontrollable emesis. The medication list that was handed to us included all the usual suspects (compazine, zofran, reglan, phenergan, benadryl) and a number of sedatives (ativan top among them). The young lady was startlingly thin, pale and looked sullen and introverted, avoiding all eye contact and responding only in a whisper to greetings or questions. The girl's mother fit the model of the ever-vigilant caregiver, carrying with her a binder featuring copies of her discharge instructions from various hospitalizations in reverse chronological order and with a pre-printed packet explaining her various medications, drug allergies, food aversions, triggers, hospitalizations, full medical history and full family medical history.
Having a hypervigilant caregiver isn't necessarily a sign of some form of abuse (a la Muchausen), but something stood out about this family. Shortly after the patient was brought into the room with the full family in tow, the mother sent the husband and several other children to find something for them to eat. Before leaving the husband asked for suggestions for a family friendly restaurant near the hospital, informing me that they were from out of town. Indeed, they had traveled here from Michigan. For a vacation. In February. Now, central Virginia is a great tourist site, but not when the weather's lousy, it's the outdoors that sell this place. Looking over her hospitalization history painted a similar picture of stays at pediatric hospitals all across the Midwest and up and down the East Coast.
Hoping to draw a little more information from the family I asked whether they had seen some of our more popular attractions, or had any interest in our university, and it was clear that they weren't even remotely familiar with the area, aside from the presence of a pediatric hospital.
Bear in mind, that I was in the room for upwards of 30 minutes, obtaining vital signs, initiating an IV (I was advised to avoid her right arm because of a recent PICC line that was removed), drawing labs, and collecting the various records the mother had brought. Throughout this period the child showed not a single sign of being nauseated or having any abdominal pain. Despite being carried in by her father, the child seemed in no distress whatsoever. So, it was with some surprise that just a moment after I stepped out of the room the mother came running out to tell us that her daughter was vomiting violently and writhing in pain.
No amount of anti-emetic seemed enough and the mother was insistent on high amounts of narcotics to control her daughter's pain. And every time they were left to their own devices, another panic ensued and more drugs were needed. It just so happened that the patient was in a double room, with the second bed vacant. So we tried an experiment. We moved a second patient into the room, a young teen that had injured his leg. Suddenly, the mother came out and insisted that they be discharged. Not a few moments earlier she had been asking about when the CT scan would be, when the pediatric gastroenterologist would see her, when she would be admitted, and now with company just a thin curtain away, she was insistent that they be discharged.
The physician convinced the mother to let them complete their studies and the CT scan went off with out a hitch, the GI doc came and went noting that the child showed no signs of nausea or abdominal pain and even commented that he was surprised the girl was able to stomach the gastrografen. And so, she was discharged with and left. I don't know how long the family planned on "vacationing" in Virginia, but I was glad to not encounter them again. I just hope the girl is ok.

Suz said...

Just wanted to add a few comments from the perspective of a CVS sufferer. It started when I was about 12. It would recur fairly frequently until I was in my mid-20s, then gradually tapered off to less than once a year now.I quit going to the Dr for it when I was a teen because it never seemed to help much.

Regarding "compulsively drinking water or ... by putting their fingers down their throat". When I would have an episode, I would deliberately drink a lot of water because the dry heaves were much more painful than actual vomiting was. And I would induce vomiting because the pain would go away altogether while I was vomiting. It would return immediately after I finished vomiting.

"The amount of affective distress the patient demonstrates is usually quite disproportionate to the severity of their symptoms." It was much more painful than vomiting from other causes such as stomach viruses.

Thanks for the article. I never new this problem had a name until today.

Anonymous said...

I too have treated several of these patients. Usually post smoking cannabis but not always. In those others it seems to occur in very highly-strung people. My feeling was that sedating agents such as BZD and chlorpromazine were more effective because this is at least partially an anxiety related syndrome. High dose cannabinoid use is potentially anxiety inducing...

VinceRN said...

Gotta love a diagnosis with no objective criteria that patients can say only responds to enormous doses of opiates, and that actually includes faking the symptoms as part of the illness.

Maybe I'm just to cynical.

Austin said...

I'm not a doctor, but I do know there was a chapter about a CHS patient in Lisa Saunders' (of NY Times fame) book Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis. Interestingly, in both that book and the NIH paper you link to, it's reported that these patients often find relief by taking very hot showers or baths -- to the point that they bathe compulsively, multiple times a day! Any idea why that would happen?

I'm a big fan of the blog, by the way! I think I've been reading for a couple of years now.

Anonymous said...

I'm a fourth year medical student who saw something similar in that I saw a patient with a history of Type I DM who had come in with multiple episodes of a similar presentation, vomiting and lots of emotional distress. It almost wasn't vomiting, but looked as if it was a forced attempt to bring something up. He was relatively young and had been given the diagnosis of "gastroparesis". Ativan was the only thing which stopped the repeated episodes of dry heaving, but he eventually had to be admitted. Not sure on the marijuana use.

Ted said...

I've seen or reviewed several cases of persistent vomiting that wound up with a diagnosis of CVS (as opposed to those with a more definitive diagnosis, like diabetic gastroparesis). In every case where someone checked, marijuana use was documented. I do not recall any cases that included a negative tox screen.

Interestingly, in my experience the marijuana users deny RECENT use. The typical patient seems to be a heavy user who has been "clean" for several days (either volitionally or for economic reasons). Given marijuana's antiemetic properties, I wonder if this isn't a withdrawal syndrome.

ExpatDoc said...

A lot of our intractable vomiting winds up being cyclical from marijuana use. Ondansetron doesn't seem to work well, but a good slog of iv droperidol (yes, we still have it) seems to do the trick. It seems that sedating these people seems to be as important as reducing nausea.

Dr. Greenbbs said...

What i've been trying to figure out is how many of the cvs patients are truly narcotic bowel syndrome patients.....

Nurse K said...

I second droperidol, the drug of choice for Crayzee Vomiting.

Anonymous said...

Marijuana relieves nausea....patients with CVS often experience nausea. Sometimes smoking marijuana prevents a visit to the ED.

EndoDoc said...

The two CVS patients I saw during my internal medicine residency, were both heavy marijuana users. This seems to be the common factor uniting all these folks. Despite exhortations by multiple providers, the patients were very reluctant to curb the marijuana abuse, insisting this is the only thing that helps.

One of my patients had catamenial CVS, related to menstrual cycles with monthly exacerbations. Now I cannot recall if my patient was symptomatic in the luteal phase and if its just a super-bad form of PMS or something else. I also agree, most of it is of supratentorial origin.

pdx rn said...

I think lots of the CVS patients are from an abdominal migraine type of syndrome. There is some sort of physiological component. But in some people, the ones we tend to see in the ER, they like the effects of the dilaudid they were given and they develop drug seeking behavior. They want more of the dilaudid, beyond what controls the vomiting, in an attempt to get that buzz they felt the first time they got it. Thus they continue to retch as hard and as loudly as they can in an attempt to look as sick as possible. Need more dilaudid. Just like the migraineurs who are nodding off yet insisting their headache is still 10 out of 10.

I'm always amazed by the people who vomit loudly and publicly. When I need to vomit for whatever reason I don't just sit there in public with my head in a bowl. I go into a bathroom. Why do people just sit in the lobby of an ER and vomit instead of going into the bathroom? If they have diarrhea they don't just shit in their pants in the lobby? Well, usually not.

I think perhaps ED waiting rooms need to have some sort of vomitorium. A men's bathroom, a ladie's, and then a third room: a large vomitorium with a big trough where the barfers can just line up and retch as loudly as they want to their hearts content without grossing eveyone else out.

I think what's hard to remember, working in the ER is that we only see the non-copers. There are thousands of people out there that vomit now and then and deal with it on their own. They call their doctors and get prescriptions for phenergan suppositories.

There is a reason why there are shelves of OTC medications being sold at local pharmacies. Some people, when faced with a head cold don't go to the ER. They actually go to RiteAid and buy a bottle of Nyquil. Sometimes its easy to forget that those are the majority of people. We just see the ones that don't have any problem solving skills.

The marijuana connection is an interesting one but someone would have to do an actual study on it to see if its significant or not. What percent of CVS patients vs the general, length of time between last use and vomiting? Is it withdrawal. Is it a lifestyle issue rather than a connection. Is it that people who like to come to the ER and get dilaudid for whatever reason, also like to smoke pot?

Anonymous said...

Anonymous, regarding your suspected munchausen by proxy in C'ville. You do know that mandatory reporting laws required you to report that mother for child abuse.

Bianca Castafiore? said...

Shucks. I was laughing, yukking it up, reveling in being a non-medico in a world wherein cyclic vomiting syndrome does not, O praise God, even remotely figure.

Then I hit the comment section, where, you gotta admit, the tenor of things just out-and-out changed! I read "Anonymous" commenter [11/22/2011 2:51 PM] followed by good Suz, who now knows this problem has a name (Thanks, Shadowfax!) and soon I was just blue.

Dear Anonymous -- while I surely don't support condemning a mother based on pre-suppositions and 30 minutes of observation, I'm even less supportive of child abuse left intact when encountered. Did you not report your suspicions? It sounds like you thought it some cool novelty, a notch in your experiential belt. However, if you were right, and you know you make a good case for being right... why the hell didn't you do something? Because she was pale and sullen doesn't mean she wasn't IN THERE, SOMEWHERE...

Ahem.

I need to get off these steroids.

Thanks for a great post, Shadowfax. It was terrific fun for a while!

My word verification is "drudge," and I resemble that remark...

Silver said...

The cannabinoid/hyperemesis link is very interesting, and there seems to be a distinct subset of these patients within the hyperemesis patients overall. Heavy, heavy smokers - Dave, at an eighth per day, I think one is over the line, standardized dosing be damned. I see it with PO ingestion too, haven't been able to standardize the dose yet, because, unsurprisingly, people who are chronic vomiters apparently -don't eat all that much in the way of brownies.- Intriguingly, some of the synthetic cannabinoids (not all, and there are a myriad) seem to be linked with increased N/V in more people; due to the massively higher doses, due to the full agonist properties? Not known, to my knowledge, but I think it's worth tracking. I'll have to go back through the tox literature and posters and the last two years' case notes to see which specific compounds were associated.
Great point about benzos making someone too sleepy to vomit, and maybe this is part of the rationale for amitriptyline as well - although that may also address a migraine-type syndrome, it seems unlikely, as my experience 'upstairs' in the house is that amitriptyline works within 1-2 days. (But never, ever as well as a benzo. Except, wait, it does, when we look at the objective data.) Clonidine is nice too.

Seeing a lot of "diabetic gastroparesis" patients who appear to have something more along the lines of narcotic bowel syndrome these days, question if this is another consequence of pain-as-the-fifth-vital-prescribing. Kind of wondering if cyclic vomiting isn't taking the place of FM or other somatoform disorders [preparing for the angry comments.] It just seems to be moving into that niche in terms of the consults I receive and the patient profiles. Distinct change in the past... 2-3 years, maybe. Anyone else, or is that just me?

radioactive girl said...

My son has cyclical vomiting syndrome. He started when he was about 5 or 6 and we finally got it under control a few years later. Those years that he vomited like that were horrible for both me and for him. The vomiting is unlike anything I have ever seen, and he would just lie on the bathroom floor whimpering in between vomiting so violently I thought he was going to expel all of his insides. He did this for several days at a time, then was completely fine for a few days or weeks only to do it all over again. It was a miserable time in his and my life. Watching him go through that broke my heart, especially because we couldn't seem to make it stop and had no idea what was causing it. We finally got it under control with daily medicine to prevent it and he did fine until a few years later, when all of a sudden it came back. The doctor said he probably outgrew his dosage, upped it, and he has been fine. There is absolutely no doubt in my mind that this is a real illness and it's unfortunate that some people choose to fake it and make it seem like it is another one of those "made up" or overexaggerated illnesses. We have never been to the ER for my son, but I hope if we ever do need to go or if as an adult his symptoms continue, he won't end up having the doctor think he is faking to get drugs. I realize your post didn't say anything about that, just from reading other posts (not yours) I guess it seems to be a commonly held perception that when people have this they are faking/want drugs. It breaks my heart to think that people are suffering through this, which is bad enough, but then going to the ER to get help and having the doctor/nurses think they are faking or drug seeking. I understand that people do make this up for drugs, but I just feel so awful for the person who isn't and ends up with the pain from not just the actual illness but also the embarrassment of knowing what the doctor/nurse is thinking they are really there for.

pdx rn said...

radioactive girl. I think CVS is well documented in children. And my guess is many adults suffer from it too.

But I think there is likely a subset of these people that learn to like the dilaudid and either fake the symptoms or convince themselves they have it again and retch to their little hearts content to get it.

A few years ago I had a patient in the ER and she had a history of cyclical vomiting but no ER visits. We treated her with compazine and felt better. She complained of minor abdominal pain from the retching when asked. The doc said give her some dilaudid. I cautioned him, do we really want to go that route. She's feeling much better already. He insisted saying she was having pain. I gave her the dilaudid and she said. "wow, I feel better now than I've ever felt in my life."

She was visiting from out of town. I'll bet she's frequenting her local ER now every time she feels the slightest bit of nausea. Made me sick that the doctor wouldn't listen to me. We did her no favors.

How many "drug seekers" are we in the medical professions responsible for?

Anonymous said...

I'm a big fan of benzos and, if not improved, haloperidol for CVS/idiopathic gastroparesis. It really helps knock the anxiety component down. The hydromorphone connection has created a huge number of people who go into withdrawal when they have their first vomiting episode and can't take it PO, which of course makes the vomiting worse. Good times.

Rachel said...

I work in the ED of a veterinary specialty center. Since marijuana was something-like-legalized in the area, we've seen MORE pets (dogs, usually) having ingested massive amounts of "medical cookies" (or brownies or candies). They typically present leaking urine, bradycardic, and ataxic. The bradycardia temporary abates if you stimulate them (clap loudly, move them, offer them food..) The doses are MASSIVE, since we're talking about a 5-7kg dog eating more than one dose meant for an average adult male or female human (70-80kg?). Turns out, at that rate, you CAN see an overdose.

We see plenty of hypersalivation, urinary incontinence, bradycardia and ataxia in canines, but I've yet to see nausea following any of the tox events. If anything they remain very interested in food, even when too high to do more than lay there on heat support, ECG and BP monitor. They DO panic a bit when the alarms go off, but the panic fixes the bradycardia and the alarm stops...

I don't know that vet med has really looked into (or sees any cases of) patients with long-term exposure. Personally, in eight years as an veterinary ED nurse, I haven't seen any long-term /marijuana consuming canines. :)

Anonymous said...

A very informative information regarding 4 Common Drugs Named to Cause Emergency Hospitalizations among Older Adults. Please read it at http://blog.pulsestore.com/post/2011/11/28/4-Common-Drugs-Named-to-Cause-Emergency-Hospitalizations-among-Older-Adults.aspx

Upstate NY said...

Oi, vej.

Obviously, as ER docs, we only see snapshots of these patients, so it's hard to say in any given case whether it's narcotic bowel syndrome, depression / anxiety / other psychiatric illness, or a definable gastrointestinal disorder (gastroparesis, Meckel's come to mind.

My personal experience is that thorazine is very effective, occasionally the addition of a benzodiazepine. After the patient is feeling better, I generally have a frank talk with them out the possibility of narcotic bowel syndrome, and psychiatric components to their disease, and how coming to the ED over and over will not ultimately help them find a way to live with their symptoms. Then I call the PMD to encourage them to address the anxiety issues, and to avoid narcotics.

Very few of the patients attempt to spit in my face at this point. Very few, but some.

Anonymous said...

Please visit the Cyclic Vomiting Website: www.cvsaonline.org/

CVS is a debilitating illness and to have medical providers doubt, and blame the patient for an illness just because they are unfamiliar with it is unconscionable.

The attitude of some makes the illness so much worse for patients to endure. . Ignorance is no excuse....please be educated and stop the negative speculation. I'm addressing you VinceRN; and especially pdx rn..have you ever considered a different career? I dare you to educate yourself on CVS.

Thank you to those who are having thoughtful discussions on CVS....most, if not all of your questions have been researched and the literature is posted.
To answer questions about Dilaudid: https://mospace.umsystem.edu/xmlui/bitstream/handle/10355/5147/EssayManagementAdultCyclicVomitingSyndrome.pdf?sequence=1

For a Treatment Guideline:
http://www.cvsaonline.org/pdfs/2008%20Empiric%20Guidelines%202045-3.pdf

Please read all the literature provided in the resource section on the CVSA website. There has been a lot done in the last 6 years. Please visit the Cyclic Vomiting Association Website:
www.cvsaonline.org/
Thank you.

Gary said...

In regards to the ridiculous comments made by VinceRn and especially pdx Rn,...I can imagine the type of nurses you both must be and I can easily imagine the shoddy, judgemental and selective care you administer..

I have been an Attending Emergency Medicine Physician for 17 years and before that I was a fully trained General Surgeon. I have administered care to countless patients with CVS,..I assure you the disease exists and there are volumes of objective criteria, you simply have to look.

VinceRn,..I don't think you're too cynical, I just think you're uninformed and ignorant to the data that is available to you.
PdxRN,..I think you're a terrible nurse and an even worse person. I suspect for both of you, your jobs are less a "calling" and simply a means by which you earn a paycheck.

If you worked in my ER, you attitudes would be different or you would be a fleeting memory of behavior not tolerated.

FREDDY FISHER said...

THE CYCLICAL VOMITING MESSAGE BOARD IS FULL OF POT SMOKERS IN THEIR ADULT FORUM ON THEIR CVSA WEBSITE . 9/1O OF THESE PEOPLE,WHO WHINE LIKE BABIES BY THE WAY, WOULD HAVE TO HAVE GOOD GOING CANNABINOID HYPEREMESIS SYNDROME.

Anonymous said...

I've had at least two adult-onset CVS patients in the last 4 years. The first was an 18yo male on my pediatrics rotation who no one could figure out (multiple hot showers a day, extreme abdominal pain, repetitive vomiting). I had seen several articles about Cannabis & CVS and noted that he was a heavy smoker- mentioned this to a few folks but they thought I was nuts. I still feel that I was right.

Later, I began working in OB and had a lady with a history of CVS, heavy cannabis use, and multiple showers a day. I asked her to lay off the pot if she wanted to make the nausea better. She also thought I was nuts.

The physiology behind Cannabis related CVS is theorized to be a reaction to the pot. Episodes increase with heavy smoking, not with withdrawal.

FREDDY FISHER said...

LOOK IN PUBMED AND TYPE IN CANNABINOID HYPEREMESIS AND YOU WILL FIND THIRTY PAPERS ON IT FROM AROUND THE WORLD, I MEAN THE STATES,CANADA,UK, NETHERLANDS ,SPAIN GERMANY,AUSTRALIA.THIS IS NAILED MAN.ANY AE DOC WHO DOES NOT KNOW THIS IS NOT ONLY IGNORANT BUT NEGLIGANT TO BOOT. U SHOULD BE DOING DRUG SCREEN AT THE DOOR FOR THESE MOTHERS AND THEN BEAT'EN WITH IT.

Bulrush said...

"Coexisting with the vomiting is often a fairly severe complaint of abdominal pain, for which no clear diagnosis can be established, requiring in some cases high doses of intravenous narcotics."

If you have ever vomited every few minutes for 24 hrs consecutively, like I did with a stomach virus, you would know that constant vomiting can really make sore abdominal muscles. And that's all it is. Sore muscles.

Anonymous said...

Hi there,
Just fyi, I have this cyclical vomiting problem and I have smoked pot only once in my life, about 12 years ago. It made me feel sleepy and dumb and I never tried it again. I'm in my 40s now, had vomiting episodes for about 6 or 7 years now. Been to the ER several times for it.

Shelli said...

I have an 21 year old daughter that five years ago out of nowhere
became sick. She began vomiting and in severe abdominal pain. She can
vomit up to 20 times in one hour and the pain is unbearable. At first it
was her gallbladder but we went to a wonderful surgeon who said that he
wasn't sure that this was her problem and sent her to another doctor. At
one point the doctors in our small town felt like it was psychological.
Finally I said that she was a normal, active girl with no reason for this to
be the case. I kept on them and test after test would show things here and
there. She is lactose intolerant, she has mild sludge in her gallbladder,
she has an extra ureter, etc., nothing that would cause what my daughter was
experiencing.

She is currently being treated at Sinai hospital in Maryland by a wonderful
pediatric neurologist (Dr. Yuval Shafrir) and a pediatric gastroenterologist
(Dr. David Tuchman). They have determined that she has cyclic vomiting
syndrome and abdominal migraines.

Samantha was on home/hospital schooling due to this disease, she graduated high school in June 2009. We have kept journals and tracked her every move, there doesn't seem to be any correlation with this and her habits. She has episodes were she can be sick for almost the entire month. She has learned to jump back into life when she is feeling better but when she is down it is bad. She is in so much pain along with the vomiting that she can't function. She has never gone 5 complete weeks in a row without an episode. It has thrown our family into a nightmare without an ending. It is heartbreaking to see her suffer like this.

She was sick for almost the entire summer in 2009 (she did have two weeks in a
row symptom free) and in the hospital six times by that Christmas.
We went to Milwaukee and she was seen by Dr. Venkatesan and she confirmed her diagnosis. Samantha is also in a study by Dr. Bole’s.

We now know that she isn’t the only one out there that has this and the more
we talk to people the more we see that there are plenty of others that could
use some support. My daughter's life that she had planned for herself ended, college? Couldn't stay out of the hospital long enough to complete a semester. She is currently on disability and is begining to see that this may be her life.

Anonymous said...

I also have this condition, (i believe mine is connected with my monthly cycle) and have encountered many Drs and Nurses of the same opinion in the ER. I just wanted to make a few points concerning the article and the comments thereafter. Regarding the comment from the oh so compassionate and empathetic Pdx RN on the issue of public vomiting. When having an episode, any movement, even the slightest of movements, even so much as a deep breath can set it off. With such frequent vomitting, running back and forth to the bathroom just isn't practical and considering the fact that the patients have most probably endured 2-3 days of continuous vommiting before they felt they had no choice but to visit the A&E, they are extremely tired, very weak and are physically not capable of running back and forth to the bathroom let alone keeping up appearances. All we want is for the vomiting to stop and for our pain to subside. It infuriates me to hear how you all think this is drug seeking behaviour, first of all, it is very difficult to fake violent vomiting, second of all, who would even want to? I'm sure there are far easier and more effective ways of tricking the Drs. Thirdly, anything we do, is to relieve the pain. Drinking water or inducing vomiting with a finger are as Suzi quite rightly stated, simply ways of relieving the pain and discomfort. You try vomiting for 6hrs straight followed by another 24-48hrs of dry heaving, retching and bringing up stomach acids and tell me that you wouldn't drink something to ease the friction and lubricate your already dry, sensitive and burning esophagus. It is always less painful if something actually comes up. Having vommitied for 3 days, there is nothing left, even the bile has already come up. (This is all apart from the fact that having been vomiting for so long, we are extreemly dehydrated and very very thirsty! So even if the water doesn't stay down it does provide some relief on its way down. To the 4th yr med student who mentioned seeing something similar but felt it was forced. Again, i must reiterate, by the time the patients present to the A&E, they have been suffering for at least 24-48hrs, so yes, the vomiting is not as visible, in that there isn't much coming up, and that is simply because everything has already come up in the days previous and yet the need to vomit is still there and thus they are forced to come to the hospital because they don't know what else to do. Just because someone is retching and nothing is coming up does not mean they are faking, It simply means they have held out and suffered at home for as long as they physically could, before troubling the A&E department.

End of the rant...promise! said...

To have the medical profession treat us with such contempt and cynicism whilst we are writhing around in pain is beyond reprehensible! Get educated!!! Just because you are not familiar with a condition, does not mean it doesn't exist. Thats what the Drs said for years about all those women suffering from fibromyalgia, and yet it is now a fully recognized condition. Regarding the marijuana connection, i must admit i am very interested and quite surprised to see such a high correlation between smokers and CVS. I myself am also a smoker and while i find that smoking does help to prevent an attack from coming on, as well as sometimes preventing the episode from lasting as long as it could, nothing, not even smoking can stop my attacks when they do come. Although it does indeed help me recover far quicker by making it easier to eat and sleep, i have found that pretty much anything and everything exasperates the condition. But at least smoking helps calm my stomach (and me) and at best helps me to doze off for a little, which in turn, helps me to keep still, thus helping to somewhat reduce the urge to vomit so excessively for that period of time. I would very much like to learn more about the connection, if anyone could direct me to any relevant studies. Im wondering weather it might have something to do with the connection of the gut and brain. I believe it is the Vagus nerve that connects the brain to the enteric nervous system, and its the Vagus nerve which is responsible for the gag reflex. I think it originates very near to the respiratory center of the brain where there are many other receptors, the stimulation of which can lead to vomiting. i haven't really thought this through properly, i'm just thinking out loud. Anyway if anyone has any info id much appreciate it. I just feel people are far too quick to make judgements and assumptions based on societies conventions. Smoker=drug user=not to be trusted=worthless lier. When i am forced to go to the hospital, i am not given anything (nor do i ask for anything) but an antiemetic and a drip and yet i am still accused of and treated as though i were a bogus patient!! It is ridiculous!!! I honestly and truly would not wish this on my worst enemy but sadly it appears as though, some peoples closed minded opinions and assumptions will never change until they experience something similar for themselves. I hope you will at least think of us if you are ever afflicted with such violent and painful attacks of vomiting. One last thing, I'm not sure how ethical this is, but have any of you ever considered using a placebo to confirm the veracity of your patients claims? if you really do have reason to believe your patient is bogus, could you not give them saline instead of the anti emetic and if they recover you know they were faking or it was merely psychosomatic??? At least then, If they don't recover, you can jump down off your high horses and safely get to treating them properly, with the due respect and compassion they deserve.

Anonymous said...

Interesting....

3rd time lucky? said...

The lack of knowledge, understanding and empathy from the medical profession is quite frankly disturbing. I can understand that you see many many people coming through your doors using every trick in the book to get drugs but i personally believe you are all so precoccupied with not being made to look the fool that many genuine patients are being descriminated against. I have experienced nothing but contempt, mistrust and cynicism when going to the A&E with this issue. You think we enjoy coming to the A&E? We come because we have no choice, we come because we have been vommiting non stop for 3 days, we come because no anti emetics are able to stay down and we are unable to ingest anything with out it coming back up. What would you like us to do? Slowly wither away and die? Ofcourse we have to come and get hydrated and in this state, the ONLY way we can do so is with a drip. Regarding the commentator that said the patients come because they like the taste of the Dialudid. People are only human after all, if someone is in pain and you give them something that takes away that pain, of-course they will like it! Nobody likes to be in pain, there isn't a human on this entire planet that doesn't enjoy relief from pain! And its not drug seeking behaviour if they ask for it the next time they are ill, its called human nature!! Anyone suffering will ask for WHATEVER it was that relieved their pain the last time. Be it an opiate or not. My goodness, in that state, if you told me it was cow urine that relieved me last time, i'd be asking for it without a second thought! (the entire ordeal is that bad, that uncomfortable and that stressful) Regarding the point made about patients wanting medicine even after the vomiting has been controlled. After vomiting non stop for 3 consecutive days, everything hurts, all your abdominal muscles ache, your sternum aches, you are completely and utterly depleted of any and all energy, you are weak and fragile and have just come out of a very stressful ordeal. It takes quite a lot of energy and force to eject the contents of your stomach, even more so when there is nothing left in there. The problem with this condition is, it is not like a stomach bug where something has upset your stomach, your body ejects it and you feel better. This is non stop and while there is slight relief on vomiting, the nausea returns within minutes if not less. No matter how much you vomit the nausea is still there. Your stomach is in spasms, you are retching, dry heaving, all of which are very painful and not at all pleasant. Regarding the comment about the distress being disproportional, you try spending two days with your head down a bucket, purging your insides, not being able to eat anything, drink anything, not gaining any relief for even a minute and tell me you wouldn't find it distressing. Combine that with the contempt and distrust received from the medical profession and of course the patients are in distress.

Am rather perplexed as to what it is about this particular portion of the rant that you wish to censor....

Anonymous said...

As a woman who has suffered with CVS for six years, I must say that I was shocked at the callous nature of the original post AND some of the comments. I have been to the ER about 7 times in all the time that I have had CVS. Each ER visit was after I had been vomiting for at least two days. My episodes can last 4-5 days and believe me, it's pure hell. I went because I knew I was dehydrated and needed an IV. I don't want to die from dehydration! I have never been given dilaudid or any other narcotic. I've found that the only anti-nausea medicine that SOMETIMES works is a high dose of clonazepam. I have never been given dilaudid or other narcotic. If I HAD been treated with dilaudid and it worked at ending the bout of CVS then you can bet that I would ask for it again. Who wouldn't? I would never fake symptoms to get drugs... not everyone with CVS visits the ER to get high! As far as the original comments about people having an attack of CVS and seeming overly dramatic about it...I'm pretty much speechless. I am very glad that I have only encountered empathetic hospital staff. Now that I know that some of you doctors don't like having us as patients, I feel even worse about having it. I'm SORRY we are such a pain in the butt to you to treat but YOU as doctors should have thought of that before you became doctors and took the Hippocratic Oath. This syndrome is very real and very debilitating. Try being nauseous and vomiting for 4-5 days with no sleep or respite. It is absolutely unbearable! As another person posted here, I wouldn't wish CVS on my worst enemy. Please, PLEASE realize that each person with CVS is different and isn't necessarily seeking drugs. They are seeking relief from something that is so awful you cannot even imagine. My life has been affected severely by CVS for the last six years. I am at my wit's end with it. I hope and pray that there is more research done on this awful syndrome. One thing I'm glad about is that I am the one suffering and not my child... No child should have to suffer like this. Something simply HAS to be done to find out both the cause and a cure. I am losing hope knowing that I cannot seem to be able to prevent an episode from happening. Simply eating food and feeling too full even though I've hardly eaten anything will set it off.

Thankfully, I visited a new gastroenterologist who seemed genuine in his desire to help me. I am going to start on a low dose of clonidine to see if it helps. If I have to go the ER again, I sure hope that I don't get hospital staff that think I am faking it. It's very real to the person suffering. Thank your lucky stars that you don't have this because knowing you have to live for the rest of your life waiting for the next attack is anxiety-producing in itself. I can't even plan a trip because I'm never sure when it's going to strike. Life seems bleak because of this disease. Knowing there are doctors and nurses out there that don't like treating us makes me sad, too.

Anonymous said...

As a woman who has suffered with CVS for six years, I must say that I was shocked at the callous nature of the original post AND some of the comments. I have been to the ER about 7 times in all the time that I have had CVS. Each ER visit was after I had been vomiting for at least two days. My episodes can last 4-5 days and believe me, it's pure hell. I went because I knew I was dehydrated and needed an IV. I don't want to die from dehydration! I have never been given dilaudid or any other narcotic. I've found that the only anti-nausea medicine that SOMETIMES works is a high dose of clonazepam. I have never been given dilaudid or other narcotic. If I HAD been treated with dilaudid and it worked at ending the bout of CVS then you can bet that I would ask for it again. Who wouldn't? I would never fake symptoms to get drugs... not everyone with CVS visits the ER to get high! As far as the original comments about people having an attack of CVS and seeming overly dramatic about it...I'm pretty much speechless. I am very glad that I have only encountered empathetic hospital staff. Now that I know that some of you doctors don't like having us as patients, I feel even worse about having it. I'm SORRY we are such a pain in the butt to you to treat but YOU as doctors should have thought of that before you became doctors and took the Hippocratic Oath. This syndrome is very real and very debilitating. Try being nauseous and vomiting for 4-5 days with no sleep or respite. It is absolutely unbearable! As another person posted here, I wouldn't wish CVS on my worst enemy. Please, PLEASE realize that each person with CVS is different and isn't necessarily seeking drugs. They are seeking relief from something that is so awful you cannot even imagine. My life has been affected severely by CVS for the last six years. I am at my wit's end with it. I hope and pray that there is more research done on this awful syndrome. One thing I'm glad about is that I am the one suffering and not my child... No child should have to suffer like this. Something simply HAS to be done to find out both the cause and a cure. I am losing hope knowing that I cannot seem to be able to prevent an episode from happening. Simply eating food and feeling too full even though I've hardly eaten anything will set it off.

Thankfully, I visited a new gastroenterologist who seemed genuine in his desire to help me. I am going to start on a low dose of clonidine to see if it helps. If I have to go the ER again, I sure hope that I don't get hospital staff that think I am faking it. It's very real to the person suffering. Thank your lucky stars that you don't have this because knowing you have to live for the rest of your life waiting for the next attack is anxiety-producing in itself. I can't even plan a trip because I'm never sure when it's going to strike. Life seems bleak because of this disease. Knowing there are doctors and nurses out there that don't like treating us makes me sad, too.

jen RN said...

This subject raises alot of strong feelings obviously. As an ER RN I have come to know a number of pts with cyclic vomitting diagnoses. They are a challenging group, as many pts with chronic illnesses are There does seem to be some anecdotal evidence connecting these pts with certain "personality" types, much the same as you would see with fibromyalgia pts. However, in the end, they are in the department and it behooves us all to research and implement a best practise protocol for ease of discharge and speedy delivery of care. We were never guaranteed that we would "bond" with every pt. were we?

Sue T said...

It has taken me 20 years to finally get a CVS diagnosis. I'm now in my 40's. I've previously been diagnosed with gall bladder disorder, endometriosis, menier's syndrome, migraines, psychosomatic disorder... The list is endless. Triggers include stress, foods, catching a cold, weather and smells, but some mornings I wake up sick with no explanation. I can't work full-time because I can't predict when I'll be functional. I don't go to the ER unless it is absolutely critical. My last visit was after 7 days of vomiting. My husband had to pick me up off the floor for the second half because I was so exhausted. The literature calls it the waking coma stage. I spent the 8th in the ER getting IV fluids back into my body. I don't use marijuana, but have worked with my doctor on keeping up on research literature that examines propylaxtic treatments and since I do also have migraines, the list of what I take daily is extensive. When vomiting, I find that sipping water, chewing on ice cubes, or eating popsicles not only soothes my throat and helps me rehydrate but also can help slow down the severity of the nausea sensation thus postponing the heaving. I am in possession of a prescription for flexeral and one for lorazepam, but I always try other options first: laying on my stomach, taking a hot shower or bath, ginger cookies or saltines, excedrin migraine, maxalt... then I'll try flexeril and if that doesn't work I give up, take the lorazepam and go to bed cause it knocks me out for a full day. I have to severely limit what I do on a daily basis and only schedule myself to do things that can be cancelled or rescheduled. When I have to travel to see the specialists twice a year, I take my list of meds and the four page handout from the CVS website that explains the phases and appropriate treatment for each with me. Just in case I end up collapsing. It is a horrible way to live. I too wouldn't wish this on my worst enemy. It's debilitating, depressing and hard on my whole family. Most people don't even realize it because I am so good at pretending to be okay it's only obvious if the episode is very, very bad. I encourage you to look at the research literature on CVS. I do every time I have an episode and am happy to see that some progress is being made to limit the length of episodes as well as their severity. Thanks for the opportunity to tell my side!

Anonymous said...

Shadowfax, you and others like you do a grave injustice to CVS patients seeking help! My daughter has suffered with this for years! (She's 31) I have lost count of the number of visits to the ER - 50+. 6-12 episodes a year. When she was little, we thought it was motion sickness, it happened every vacation. Even mild, pleasant excitement can set it off in some CVS patients. The worst thing about thinking she is exhibiting "drug seeking behavior" is that she is undertreated, discharged too early, only to have to go back again!! This time, she has had to go to the ER 4 times in 3 days. I have witnessed her vomiting as many as 20 times an hour. The abdominal pain is severe, the nausea unrelenting, and eventually she passes out. Do you suppose she is FAKING that? I do believe that's called a vagus response. Other times her blood pressure got dangerously high in the ER. She gets tingling in her extremities, and it is difficult to slow her breathing. I have been with her many times in the ER, only to be disappointed YET AGAIN at the LACK of EDUCATION and compassion some caregivers exhibit. People with CVS have a chronic thirst from dehydration, and at some point it dilutes the acid that is coming up. And yes, they WILL stick their fingers down their throat when desperate enough to try to make the nausea STOP! She will spend several minutes in the shower, multiple times a day during episodes. A bath does not have the same effect. Do yourself a favor and educate yourself about this disorder. My daughter has been throwing up blood for over 24 hrs now and also has tarry stools, which also indicates some sort of internal bleeding. Faking you say? Tonight my daughter WILL be admitted to the University! Dumb f***s at the last hospital tried to get her to drink contrasting dye DURING AN EPISODE, so they could do a CAT scan. I'm not a Dr and even I could have told 'em where THAT was gonna end up....DUH! You can't give them anything ORAL stupid, they wont keep it down. PERIOD! The only thing that turns this mechanism OFF is SLEEP! That is WHY they wish to be sedated. They need something for nausea, something to calm them, and preferably left alone in a dark room to sleep. Research shows there may be a mitochondrial component as well, and a family history of migraine. It would be a whole lot easier and less trouble to go out on the streets and find drugs if a high was all they were after. Get a fricken clue! Her personality is nothing like I have seen described here. She is easy going, all sunshine and light, with not one high maintenance bone in her body. I never thought I would wish this disorder on anyone, but you make me want to re-think that.

Anonymous said...

It had been a year since my daughter had an episode. She was admitted to University tonight. The first thing they did was put a tube down her nose (I was told) to check for bleeding. Then they gave her morphine and dilaudid. I know this is the first time she has had dilaudid. I certainly hope she can get some sleep finally - she has had maybe 8 hrs in 4 days total. If the proper intervention had been given at the first ER, this could have been STOPPED!!! Once this thing gets a foothold, there is almost NO stopping it. She was admitted tonight because her potassium levels were way off. Faking?? Geez, shadowfax, hope yer kids never get a chronic condition like this.....think about it! Personally, I think all Dr.s should have to face their own mortality at least once while they're practicing. It gives people a healthy respect for life, and an even greater respect for compassionate strangers....

Anonymous said...

i started having episodes when i was 6 months old. i started smoking around my freshman year of high school(either 14 or 15). when i was 6mo to around 2 or 3 years i went 30 days between episodes. from 4 to about 7 i went every 60, 8-12 it was every 90 days, and the beginning of my teens was about every 100. i started going through puberty when i was 11 or 12(6th grade). when i entered high school, and experimented with marijuana, i started going almost a year between episodes. i am now 20 and have gone as long as 2 years without an episode. show me some statistics on that.

Anonymous said...

I wrote two previous letters dated 2/16 about my daughter, and decided to try to EDUCATE people who read this blog. We only speak of my daughter's pattern of CVS, and history of what has worked. By the time my daughter was finally admitted this last time, her potassium levels were so low she was in danger of having a heart attack. (She was successfully treated at the University Med Center here in Omaha, where she was diagnosed a few years ago.) This after being prematurely discharged twice from another hospital ER, seeing her primary care physician once, and also one prior visit to University ER over a 4 day period - before this ONE episode had passed. Essentially they sent her home. They had tried to give her potassium pills, but alas, they ended up in the emesis basin. They also had tried to do a CAT scan, after she drank the contrasting solution and promptly threw it up as well. Her symptoms were minimized at the first hospital, and we knew the drill, she has been treated so shabbily over the last few years when she was DESPERATE for HELP. The girl is a real trooper, not a "non coper" as a previous poster suggested.
This episode began with vomiting 30-35 times a day the first 2 days. The unrelenting nausea is the absolute worst, and the hot showers seem to relieve the symptoms, only as long as she stays in the water. This seems to be a very common element in relieving nausea for many sufferers of CVS. My theory is the body is so desperately dehydrated the brain will try anything to get water IN. She suffers a lot of burning in her esophagus, and occasionally during episodes debilitating abdominal cramps. The disorder continues without her being able to sleep for days at a time, or if she does sleep, it is only briefly, for a couple hours or so, then the nausea and vomiting starts all over again.
After being diagnosed she was put on a daily dose of amitriptyline, which eventually did seem to help lessen the frequency of episodes. She was also given promethazine suppositories, zofran dissolvable oral tablets (quickly absorbed) she would use as soon as she knew she was in the throes of an episode. To her it feels completely different than the flu. The major difference being the horrific nausea accompanying CVS episodes, and frequency of vomiting. (More below)

Anonymous said...

(Continured) This past year she was successful at warding off episodes AT HOME before they got a firm foothold. When she does have to go to the ER they usually have to give her a couple bags of IV fluids, an anti nausea agent usually Reglan, Benadryl, Phenergen, Promethazine or Zofran. At times she has had all of the above during ONE visit just to get it to stop. Ativan is usually also administered as by the time she finally gets to the ER her distress is heightened, also common to sufferers of the disorder for a multitude of reasons other than the obvious symptoms. 1) They feel so horribly out of control over their own bodies, and destiny - she has lost jobs because CVS caused her to miss days in a row. 2) They fear the ER staff either will not know how to treat CVS, so they will have to educate the DR's. 3) They've had enough CVS episodes/visits to the ER they can spot a skeptic from a mile away, the "drug-seeking barferphobes".
Over the years we have never been able to pinpoint a specific trigger. When she was little, we suspected it might be connected to an allergy to certain food coloring - one time after ingesting blueberry syrup, another fruit punch - both times we were on vacation and traveling in a car. She was sensitive to carnival rides and could easily get motion sick. It does seem that prolonged stress can bring on an episode, but other times it could be pleasant mild excitement - like first day of school, first day new job (boy, that one doesn't go over well at ALL!) This time we have not been able to pinpoint any trigger at all, it is pure speculation. The only thing out of the ordinary was she got a nice fat income tax return and was going to shop for a car!
This time the "magic potion" at the University was first Zofran, Morphine for esophageal pain (she'd also had an NG tube inserted to check for internal bleeding), Dilaudid and Imitrex. She received 2 bags of saline and 1bag of D5 (saline with sugar),6 potassium pills in the ER and a slow drip overnight of potassium. Along with a Percocet in the middle of the night, again for esophageal pain. Over the course of 4 days she estimates she vomited 80 times at least. This particular episode lasted longer than any other - usually lasting only 24-36 hours.
Need I now educate you on the toll this can take on families? She is 31, a single mother of an 8 yr old son - they both live with us, her parents. She will never be able to live without another adult in the household, unless she is able to get this condition under control. When she faints someone needs to call for an ambulance - this happens almost every episode now. Also, someone needs to care for her son when she is indisposed. It has taken a financial toll on her as well as us. She has a hard time holding a job because of the CVS, it impacts her attendance affecting her ability to support herself and her child.
But for you Shadowfax, and all other medical personnel out there....the MOST IMPORTANT thing you need to know is if you undertreat these patients, or mistreat them by your "judgements", or discharge them too early (malpractice in some cases)- IT CAN LEAD TO A LIFE THREATENING SITUATION!!!
By the way, my daughter is a Certified Medical Assistant, studying for her Bachelors in Nursing. She is ONE OF YOU!!!

Anonymous said...

(Me again) Forgot to tell you, (dunno if pertinent or not), there IS a family history of migraines on both sides. My husband gets the awful debilitating ones that make you puke and can put you in bed for a day or two - but rarely. Me? I get the ocular aura type lasting 20-30 minutes, with minor headache afterward, on rare occasions I will get a real throbber, but not as bad as husbands. When daughter was newborn, colicky first 2 weeks with projectile vomiting. Frequent flu as a child, not long lasting. At 23 she had the worst pregnancy on record, probably 30 trips to the ER, CVS-like episodes and needing hydration. She was hospitalized twice for dehydration, and was also sent home with IV's multiple times, with home visits by an RN. Before her pregnancy she would have 2-3 episodes a year. After that, at its worst perhaps 8 times a year. Diagnosed at age 24 after endoscopy and history type questions ruling out any other causes.
The most significant difference in how she was treated at these two hospitals....Our University is one of the very best, and they did not disappoint. She was tended to very quickly, cared for compassionately, listened to intently IN ORDER TO LEARN.
One surprise...in THIS part of the country Midwest, aside from the University, every other ER Dr and staff plays dumb - like they've never even heard of CVS. After reading the other posts here, cannot help but wonder if Dr's just like to act myopically obtuse about CVS sometimes. Lazy? Uncaring? Certainly lacking any level of understanding, or recognition of misery and suffering when they see it. And the good Dr wants to whine about how draining CVS patients are for HIM. Instead he needs to be concerned with how drained the CVS patient is!

FREDDY FISHER said...

DEAR ANONYMOUS,HERE'S THE DEAL :CYCLICAL VOMITING +MULTIPLE HOT SHOWERS = CANNABIS HYPEREMESIS///CONGRATULATIONS, YOUR DAUGHTER IS A DRUG ADDICT.STOP WHINGEING AND GET HER SOME TREATMENT FOR HER MARIJUANA ADDICTION.

bs said...

god, this is really depressing. i have cvs. it took me 8 years of seeing various doctors, including specialists, before a friend in nursing school diagnosed me. here's the thing, i have smoked marijuana. and my consumption of that drug doesn't seem to have a thing to do with my episodes. i have them when i quit: i have them when i use. i definitely don't go to the er just to get morphine, since it makes me hallucinate and that's almost even scarier than staying home during an episode and trying to deal with it myself.

over the years, i was also counseled to avoid alcohol. no, that's not right... i was treated like a drunk, which i'm not. even so, hoping for relief, i quit drinking for 2 years and i still had episodes. once when i went to the er, i was accused by the admitting nurse of forcing myself to vomit. if i hadn't been so incapacitated, i would have punched her in her face.

seriously, i know that there are people who abuse drugs and feign illness to get them. but i'm not one of them. after my experiences trying to get a diagnosis, i think it's very likely that the doctors i saw were both ignorant about the existence of this condition and conditioned to be suspicious of their patients as "fakers." and that's pretty disgusting. we need to do more to create a culture that allows patients to be honest with care providers and for care providers to treat those patients like adult and for care providers to treat those patients less like children or criminals. that helps no one. i truly hope you have a follow up article on this subject instead of just mean conjecturing.

for those with cvs who are commenting, i had tremendous success with massage and meditation during an episode. i had already vomited a few times and was in the nursing station of a convention i was attending. a friend trained in reiki ( i think) worked rubbing my back and talked me through some soothing imagery and breathing exercises. it worked! my episode subsided, returning a few hours later, but much shorter in duration than it normally was. my episodes definitely seem to be stress induced and i hope others who have the same trigger find this useful!

freddy fisher, thanks for typing with the caps lock on. it makes it easy to skip your idiotic contributions.

bs said...

having browsed more of your blog, i can see that you aren't some kind of suspicious drug crusader... but seriously, it would be nice to see some kind of comment acknowledging that cvs patients aren't all needy potheads. i was looking for blogs about cvs and yours came up first in the search. that's probably why you're getting so many personal anecdotes from sufferers and their families.

FREDDY FISHER said...

LOOK HERE U POT SMOKING HIPPIES, I'M NOT QUITE SURE IF U PEOPLE ARE STONED OR JUST COMPLETELY STUPID. YOUR CVS AIN'T DUE TO MOTION SICKNESS, MIGRANES OR MITOCHONDRIA. I'TS DUE TO ANOTHER THING BEGINNNING WITH M - MARIJUANA!!!.COOL DRUG BUT NOT SO COOL WHEN U HAVE YOUR HEAD IN A BUCKET!!!- AND REIKI AIN'T GOING TO FIX IT EITHER. EVERY TIME U SHOW UP TO THE ER THROWING UP , EVERY SHOWER U TAKE, EVERY POSITIVE DRUG SCREEN U HAVE, WE WILL BE WATCHING U. WE WILL SMOKE U OUT !!!.

bs said...

ok freddy, then why did i have my first episode before i ever smoked pot?

i eagerly await your analysis! this is JUST LIKE HOUSE!

Anonymous said...

Oh Freddy Fisher, you seem to know SO much about CHS but NOTHING about CVS. If you are such an expert, your studies should be all over the internet. All those so called studies you mentioned were hardly science. No control groups mentioned in any of them. One of em followed 9 patients for a short while, another reported one guy being a pot smoker etc. The CVSA boards you referred to as "being full of" pot smokers is a bold faced lie. Some have tried pot to alleviate their symptoms - PERIOD! You simply cannot explain away the fact my daughter started having symptons as a CHILD, she has had numerous clean UA's for jobs etc, and a surprise UA for her nursing program as well. FYI, she learned on the CVSA message board that the showers might help. They do help her, but not everyone with CVS.
Nice of you to blame her though for her CVS, and nice of you to blame me for her alleged "drug addiction".
I have a diagnosis for you however. Combative, confrontational behavior + projecting what you think is true onto others + screaming + delusional thinking = borderline personality disorder aka BPD + insisting you are always right = true narcississm!! So there ya go Freddie - yer ALL WET! Go "fish" somewhere else.

FREDDY FISHER said...

HERE ARE SOME FREDDY FACTS ABOUT THE CVSA :FACT 1-THE POT SMOKING HIPPIES FROM THIS WEBSITE ARE SO WORRIED ABOUT CHS THAT THEY HAVE EVEN SABOTAGED THE WIKIPEDIA PAGE ON CANNABINOID HYPEREMESIS SYNDROME-HOW SAD IS THAT!!!.FACT 2-IF YOU ACTUALLY GIVE UP SMOKING DOPE AND GET BETTER THEY KILL YOU OFF AND DELETE ALL YOUR POSTS-HOW DEMOCRATIC IS THAT!! FACT 3-HERE IS JUST ONE EXAMPLE FROM THEIR CVSA MESSAGE BOARD [FROM DEMONCLEANER ON 01/25/11]TALKING ABOUT HIS LOVE OF CANNABIS "GO FOR THE MORE CLEARHEADED UP SATIVA STRAINS,SOME LIKE A LEMON TASTE,SOME LIKE A BLUEBERRY TASTE OR STRAWBERRY" THIS GUY IS A GODDAM CANNABIS CONNOISSEUR!! STICK THAT IN YOUR BONG AND SMOKE IT !!!.

Anonymous said...

Freddie - you quoted one guy and have painted everyone else with CVS with a very broad brush. You previously referred to pot as a "cool drug"...did you perhaps OD on THC and find yerself throwing up while taking a hot shower?? You claim to know more than GI specialists and physicians who have who have thoroughly examiuned CVS patients, taken thorough histories, and run numerous tests, only to arrive at a CVS diagnosos. Yet you INSIST on arguing with the facts. Sounds like you have a personal problem to me.

Anonymous said...

Freddie - you quoted one guy and have painted everyone else with CVS with a very broad brush. YOU previously referred to pot as a "cool drug"...did you perhaps OD on THC and find yerself throwing up while taking a hot shower?? You claim to know more than GI specialists and physicians who have who have thoroughly examiuned CVS patients, taken thorough histories, and run numerous tests, only to arrive at a CVS diagnosos. Yet you INSIST on arguing with the facts and calling it CHS. Sounds like you have a personal problem to me.

Sue T said...

I am looking for support as I deal with cvs. It is hard enough dealing with chronic illness without someone assuming I use thc. I don' t and won't. The vitriol and cannabis commentary here are not helping my stress levels nor my interest in actual medical research and individual experiences regarding cvs. If you know of a blog that will be proactive, please privately contact me with referrals. Thank you.

Anonymous said...

CVSA online offers a message board, with many suggestions on what helps some with CVS. The empirical guidelines by Dr Fleischer (retired) from Missouri are very helpful - he seems to be right on the money as per our experience. There is also a Facebook page for CVS sufferers, many postings there.
Find a GI specialist who will prescribe meds for use at home, anti nausea suppositories, meds that dissolve under the tongue - anything to ward the episode off before it gets a good foothold. We have had considerable success with this approach for a long time now. Once in a while an episode will still require a trip to the ER, but rarely now., thank God!

Anonymous said...

My husband suffers debilitating migraines, and also reports that soaking in a hot bath and putting something cold on his forehead will sometimes provide relief. It might be interesting to see how many migraine sufferers find help this way. Anyone consider the connection between "abdominal migraines", and typical migraines? Most CVS sufferers DO have a family history of migraines.

Anonymous said...

http://emedicine.medscape.com/article/933135-overview

One of the most comprehensive articles I've ever seen online, includes many statistics and studies!!! Helpful for CVS sufferers and would be very education for Dr's who are not GI specialists!!!

FREDDY FISHER said...

HERE'S ANOTHER GREAT PAPER-CANNABINOID HYPEREMESIS: A CASE SERIES OF 98 PATIENTS BY DOUGLAS A SIMONETTO ET AL.[G.I. TEAM FROM THE MAYO CLINIC],PUBLISHED THIS MONTH IN THE MAYO CLINIC PROCEEDINGS JOURNAL AND FREE ON LINE. READ IT AND WEEP-OR PUKE IN YOUR CASES.

Anonymous said...

Freddie, perhaps you'd care to attend the CVS conference this summer in Wisconsin, and argue your "theories" with the experts on CVS. You persist in confusing two completely separate disorders. If you bothered to read the aforementioned website, you would see all the details, etymology etc of CVS cpelled out so clearly you'd feel like a complete idiot. This data is not from one study over a short period. It is information that has been gathered for years and years. The legitimacy of same is beyond question. These physicians have devoted their careers to studying this disorder, and trying to HELP sufferers. People like you who have no compassion or empathy are typically sociopaths, and certainly have no business in the medical profession, unless yer name is Dexter.

FREDDY FISHER said...

THE SO CALLED CVS DOCTORS U SPEAK OF ARE,FOR THE MOST PART,A BUNCH OF CLOWNS WHO HAVE COLLUDED WITH THEIR PATIENTS IN THE CULTURE OF CANNABIS WHICH NOW PERVADES THE CVSA.QUITE FRANKLY,DR.CONRAD MURRAY'S BEHAVIOUR[MICHAEL JACKSON'S DOC]IS MORE ETHICAL THEN THEIRS.

Anonymous said...

I GUESS YOU KNOW ME BY NOW AND I HAVE AN AXE TO GRIND! I LOST MY LICENSE TO PRACTICE - GOT CAUGHT WORKING UNDER THE INFLUENCE OF CANNABIS SATIVA(MAUI WOWIE TO BE MORE ACCURATE). I HAD NO IDEA SURVEILLANCE CAMERAS IN THE PARKING LOT WERE FILMING ME IN MY CAR TAKING BONG HITS DURING MY LUNCH BREAK. (NOT TO MENTION THEM FINDING MY ONE-HITTER IN THE POCKET OF MY SCRUBS - I WOULD HAVE TO SNEAK A TOKE IN THE UTILITY CLOSET EVERY CHANCE I GOT) BASTARDS EVEN TOOK MY PERSONAL STASH! EVEN WORSE, NOW I CAN'T STEAL THE ATIVAN & DILAUDID I WAS SUPPOSED TO PUT IN THE IV'S OF ALL THOSE FAKING CVS PATIENTS...SERVED EM RIGHT, THE POT SMOKING HIPPIES WOULD COME IN PUKING THEIR GUTS OUT. YOU THINK I WAS GONNA DO ANYTHING TO RELIEVE THEIR SUFFERING? WHAT ABOUT MINE HAVING TO TAKE CARE OF THE WHINERS? I NEEDED THE DOPE A WHOLE LOT MORE THAN THEY DID!! OH WELL, NOW I'LL HAVE MORE TIME OFF TO GET HIGH EVERY DAY! AND I WON'T EVER HAVE TO TAKE CARE OF THE WHINERS LIKE THE OBESE WHO HAVE HEART ATTACKS, THE SMOKERS WHO GET LUNG CANCER, THE DRUNKS WITH LIVER DISEASE,THE GAYS WHO GET AIDS,ETC AGAIN!(WHAT DO YOU SUPPOSE FARRAH FAWCETT WAS DOING...HMMM?)PERSONALLY I THINK ALL SICK PEOPLE BRING IT ON THEMSELVES ANYWAY WITH THEIR NEGATIVE ENERGY. BOB MARLEY LIVES!

Bianca Castafiore? said...

i really enjoy this blog, and usually also enjoy comment threads, so that i often subscribe to a comment feed.

the current discussion, though, is an insult to Movin' Meat's usual quality and good humor.

Anonymous said...

gee, I thought that last post was not only "quality" but "funny" too. It was at least as funny as a blog by an ER Doctor entitled "Movin' Meat".
Signed,
Just Another Slab

Anonymous said...

Even though there are CVS patients in Sandusky, there is no CVS on Tralfamidor! Billy said so.

(Dwayne Hoover was here)

Anonymous said...

I have been researching CVS trying to learn as much as I can for my daughter who has suffered with this for years. She does not smoke pot nor does she get any drug at the hospital other than intraveinous Zofran, except for one time they used Droperidol as she had a severe headache as well. We try to get by with Zofrin pills, but they are not always helpful. Most of the time she suffers in silence because she is concerned about the cost of the ER. I thank GOD she has never had to endure a condesending ER doc that thinks she is there for the high. Im also glad I have never had the misfortune to have my concern and involvment characterized as Munchausen by Proxy. For those of you who are sympathetic or at least dont throw generalizations around I am sorry for the rant. We have enough pain in our lives without arrogant A**h***S adding to it. If you have any love for your profession perhaps you could put some energy into being helpful and finding solutions, otherwise do us all a favor and listen to your mother - get into investment banking!

Anonymous said...

Exactly...i hav cvs but some drs want to say its cannabus causing the issues...it isnt..i have been on amitriptilyne for almost 2 years..2 years free from er...guess wat? Still smoke when I feel sick, but not in hospital..some drs. Just want you to feel helpless..too bad I did more research then them!

Anonymous said...

We are not drug seekers! Never had dilaudid in my life until I was staying in hospital for a week every month..on stays where doctors like you wouldnt give me medication I was in there 3-6 days...with medication 1-3...do some more research before you call people drug seekers...have some compassion for things you do not understand!!

Anonymous said...

In regards to the connection between marijuana use and CVS. My son has had the opposite experience. He has recently(little over 3 months now) quit smoking and since then his symptoms have become dramatically worse. He said one of the reasons he smoked was it was the only thing that relieved the nausea he has had since he was 10. He is now almost 19. I am really hoping they can figure out what triggers this, watching him suffer is a very hard thing for a mother to do.

Jessica said...

This is really interesting information for me. I have occasional bouts of CVS, always brought on by dehydration, which is usually brought on by alcohol use - in other words, some nights I drink more than I realize I can handle and don't have enough water in my system, and I wake up in the middle of the night and begin a day-long bout of repeated vomiting that is identical to descriptions of a CVS attack. During the attack, I have a pounding headache, my body hurts, and I'm sensitive to light and sound. I know it sounds stupid because I get myself into that situation by drinking, but the attacks are rather unpredictable and do not happen every time I drink heavily. (Sorry I sound like such an alcoholic, I recently finished college.) Anyway, during these attacks, the only things I can do are lay in a dark room hoping it will pass, sip water so the dry heaving isn't extremely painful, and......smoke pot. It was truly the only thing that could soothe the symptoms for years. The first time I went through one of these attacks without any access to marijuana, it lasted for 15 hours and I had to go to the hospital because I was in so much pain. They gave me a prescription for Zofran, which I take now during attacks because it allows me to sleep it off, but I still like to smoke afterwards because it ensures that the vomiting won't resume once I'm awake again, and speeds up my recovery time. I'm shocked that there is such a high correlation for the opposite of this calming effect.

Unknown said...

@Freddy Fisher ...do some research and actually educate yourself on Cannabis...until then fuck off...fall off building ..jump in front of moving traffic..or all of the above...thank you