Registered: 1491685543 Posts: 21
Reply with quote #1
I have suffered with CVS for nearly 30 years. Seen my share of emergency rooms. When the doctor comes in and asks what the issue is I generally tell them I can't stop puking. And of course they try everything to stop it. Some ask what works. Very rare they lisen. Recently I went 3 years without an episode. When I relocated to Florida it all started again. I went to a gastro doc only to have to go through test after test. Going next week for gastric emptying test. Still doctor refuses to call it what it is until all test are complete. In the mean time I have been prescribed meds. I also use cannabis for the nausea. So each time I go to the ER the doctor says my episodes are a result of cannabis. So I tell them no I went 3 years without an episode but continued to smoke pot. It's not CHS it is CVS. So my question is what do I say to these doctors in the ER who continue to pump meds into me that dont work. When they ask what can we do for you to help I am afraid to say anything in fear of being labeled a drug seeker. So I suffer through it til it passes. Now I am 52 I can't deal with it like I did when I was young. What do I tell these doctors. I went on to even tell them contact my gastro doc bit that seems to fall on deaf ears. My gastro doc is in the same hospital bit my episodes always take place in the evening when gastro doc is off. So what do I say or how do I advise them?
Registered: 1111176341 Posts: 4,532
Reply with quote #2
We were in a similar position when our daughter could no longer be treated as a pedi patent.
The ER must test for the possibly reason for the vomiting and marijuana vomiting seems to be far more known that CVS. CVSA is working toward an adult study being published in a respected medical journal as soon as possible. Hopefully this upcoming publication will help but that does nothing for the problem now.
I think I would set up a meeting at the local hospital, bring someone to help advocate for you, and go over CVS, your GIs treatment protocol, what has worked for you and what will not work for you. You can offer anecdotal information using some of your past treatment records with what worked and what did not work. I think that for now, anyone with Cannabis showing up is being lumped into a category of CHS. Recently Wynnak spotted an online article where the author discussed CHS and CVS as the same disorder. She was able to get in touch with the author and the article has been changed. Our adult GI instructed the ER to call her as soon as her CVS patients arrived. She was ignored. She finally handed out her cell phone number. Maybe your GI would allow that and you could call or send a text to him/her?
You can always refuse themes being offered. You could bring information to the meeting as to why certain meds are not helpful. if you only smoke during the nausea phase you might be able to offer to be tested while well and not smoking.
Please let us know how this works out for you. __________________ ginny CVSA Moderator
Registered: 1491685543 Posts: 21
Reply with quote #3
I think the ER uses this as they don't have a answer as to why I vomit. The fact I had no episodes for 4 years rules out CHS. Even my doctor sees it that way. If I thought for a second marijuana was the cause I would have stopped long ago. I cant see doing something that would cause an episode. The downside sucks. I have one more test before my doctor has to make a finding. I do that soon and once that is clear I have to make sure the ER and my doctor are on the same page. If not I'll move on to na doctor who actually is more in touch with CVS. Thanks for your advice.
Registered: 1350591217 Posts: 785
Reply with quote #4
We've change doctors a lot. But that doesn't help with treatment in the ER. If the ER would take treatment recommendations from your doctor.. it being in your records, that could be helpful. I also am a huge supporter of contacting the patient advocates at the hospital and for the ER, even when well, to provide them information on your treatment in the ER along with CVS materials and brochures. I have really made a push to talk with the ER department physicians to have them consider CVS and not just CHS.
__________________ Blynda Message Board Moderator Monthly Support Call Moderator
Registered: 1447310673 Posts: 17
Reply with quote #5
What works for me cable guy is oxycodone and Ativan taken daily as a preventative. It seems to keep the attacks away. I am five years between attacks now where they used to happen every 2 to 4 weeks.