Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
Jack

Avatar / Picture

Registered:
Posts: 5
Reply with quote  #1 
On June 26 2019 I was diagnosed with CVS after my 2nd trip to the ER. The first ER visit I was told I had a stomach bug. I knew it wasn’t a stomach bug. I also have Crohn’s disease and use medical marijuana for it. When I go to Massachusetts and smoke recreational marijuana I seem to, every few days, experience a CVS episode. When I’m home in New York and use Medical marijuana (New York medical marijuana program doesn’t allowed smoking flower or eating edibles, only vape oil or tinctures) I don’t have any problems. This leads me to believe the dispensary in Massachusetts uses pesticides that are very harmful when combusted. I don’t believe CHS (Cannabinoid hyperemesis syndrome) is real because people have been smoking marijuana for over 1000 years and CHS is just now a thing? I don’t believe it.

Anyway has anyone tried Valium Suppository in order to abort an episode? When I have an episode it last’s for 12 long and agonizing hours. They never do enough at the ER. Promethazine doesn’t work, reglan doesn’t work... I just want something to abort it before the 12 hours of hell begins.

Thanks for reading.

Edit: I just started hyoscyamine and so far no episodes.
0
scooky1

Registered:
Posts: 132
Reply with quote  #2 
Hey Jack

Welcome to the board!
 
First off were you diagnosed with CVS by your own DR. or a G I or did an E R Dr. say " Looks like you got CVS!" and that's what you mean " I was diagnosed"
The reason I ask is because every person I have ever heard of being diagnosed with CVS has had the same complaint " it took so long to be diagnosed" it took years for me and I have ever heard of anybody being diagnosed after TWO visits to the ER.
Maybe because you have Crones they already had so much info on you or???
As far as smoking pot you got from a store I bet they check what they are selling pretty close. so I think I would look more the canabioid hyper what ya call it.
At least as soon as the ER test's your pee and then it will/can get real nasty in there for you, if you haven't already, don't pee for them! just leave the cup in the toilet, tell them you couldn't go ETC. you can read some of the night mares some users go thru at the ER.
I use the Hyosiamine sulfate but for esophigeial cramping (feels like a heart attack) do you get that one?
VALUM suppositories ha? that's a new one! sounds good.
Two other options- are morphine or dailaudid suppositories those are what they use at the ER in IV but as far as stopping an attack, or trying to stop one.
I use some those- suppositories -Zofran- Sumatripton / Imatrex  (injectable) and hope it works . It's kind of a 50/50 thing on stopping it and I find when the monster wants out there isn't much we can do to stop it.
check out some of the past postings, there is lots of info in there.
Good luck! OH YEA there are these ladies who run this place, They know what they are talking about and have way more info than I do and I am sure they will be in touch soon
0
Jack

Avatar / Picture

Registered:
Posts: 5
Reply with quote  #3 
Yes, I was diagnosed by an ER doctor. I’m seeing my GI soon about this. As far as the CHS, maybe I should be more open minded and completely rule it out. When I use medical marijuana vape oil from New York I’m completely fine. Plus CHS characterized by years of heavy smoking. I used to smoke heavy years ago but I quit and almost never touched it for years and only started again medically in New York. I also started to get sick before I got my medical card (try explaining that to a doctor who really wants to blame marijuana).

I never am able to pee due to dehydration but in New York any doctor can see I’m on medical marijuana. That’s probably why they do the bare minimum at the ER. I’m lucky to get Ativan when I go to the ER. It does help which is why I asked about Valium Suppositories. They see me suffer and will not give opiates for stomach pain...


Edit: No I don’t get esophagus cramping. My pain happened only during an episode right where my ribs meet my stomach on the leftish side. I’m hoping the hyscyamine can help prevent my stomach from cramping and avoid an episode. The ER doctor said my pain was due to cramping (on top of 12 hours of vomiting) so I requested the medication.

What’s helping me besides medications is eating very small amounts of NON GREASY foods but eat more often. I’ve lost almost 30 lbs since this has been happening which is a blessing. I think I overate and that triggered me a few times (I’ll definitely blame the THC for that lol).

This happens too... I’ll feel like I urgently need to poop 💩 but on the toilet as soon as I begin to TRY to poop I’ll feel an episode about to hit. Once I poop it’s game over and I puke for hours and hours... HOT SHOWERS/BATHS don’t help relieve anything. I mean hot water always feels nice but I continue to vomit and suffer my pain....
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #4 
Hi Jack and welcome to the message board.  Wish you were not here.  Scooky had fabulous thoughts and advice for you.

The only thing I want to add is that no one is prejudiced toward or from medical or even recreational cannabis.  CHS seems to occur in long term users.  There is research conducted on the use of cannabis and the possible effects.  Scooky is right about what happens to most of our adults in the ER when substances are found on testing.  Adults have a tough time with ER staff and there are some real horror stories in the MB archives.  We do now have recently published adult treatment guidelines which you can located on the MB or on the CVSA web page.



To be diagnosed with CVS you need to "fit" the criteria  Part of the criteria is running tests to rule out other conditions are similar to CVS.  You will probably be asked to stop using cannabis.

I hope your illness stops if you discontinue cannabis.  Meantime you will need to under go testing to check for other conditions. 

Please let us know how things go for you.



 

__________________
ginny CVSA Moderator
0
Jack

Avatar / Picture

Registered:
Posts: 5
Reply with quote  #5 
Thanks for replying. The ER doctor who told me it was CVS asked me to abstain for 2 weeks which I did (I should have mentioned that in my prior posts) and still got sick. When I was in my early 20’s I definitely smoking heavily but I abstained for many years and I definitely don’t use heavy anymore. Maybe flower buds are just too strong for me because my marijuana vape oils and CBD/THC tinctures never cause problems.

This is gonna be a long road... 😢
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,750
Reply with quote  #6 
You reminded me that I think I recall one or more of the doctors saying that it could be that some people are more sensitive to cannabis and that is why some develop CHS.  



__________________
ginny CVSA Moderator
0
scooky1

Registered:
Posts: 132
Reply with quote  #7 
Jack
When I first heard about pot making us sick I quit for two years and when I realized that smoking wasn't the problem I started again.
But I never would say yes to that question while in the ER. I don't lie I just change the subject and never give them a specimen, just leave the cup in the toilet, if asked "I couldn't go"
They say it takes a month or so for it to be out of your blood and if you are like me it has been a long time since you have not had it in your system.
It would be so cool if what you have was a problem with pot and not CVS.
You might want to try taking enough time off pot to see if you are lucky enough for that to be the problem. it could save you a lot of time and trouble plus give you the rest of your life.
Read some of the files here and some of the life stories of what it's like to live with CVS if giving up that stuff could be the answer. well you get the picture
0
Jack

Avatar / Picture

Registered:
Posts: 5
Reply with quote  #8 
Scooky1

The way you phrased that literally made me get goosebumps and I’m not sure why. I would be lucky if the problem was simply CHS, wouldn’t I? This could very well be a MASSIVELY good thing. I was looking at it very negatively... but you spun it to a positive. Seriously thanks for helping me to think positive because it’s not easy sometimes.

Since my last episode I completely stopped smoking Recreational Flower Marijuana and have only been using a medical vape pen with medical vape oil and I haven’t gotten even a little bit nauseous. I was smoking a lot (comparatively) recreationally but now I only take a few pulls from my vape pen through out the day. It’s dramatically less THC than Flower Marijuana and you can control the dose more.

I tell the ER I use medical marijuana ONLY because they can see that anyway. Since they can simply look up if I’m prescribed marijuana I feel it’s counterproductive to lie to the doctor I’m depending on for relief. If they couldn’t look me up I would 100% not admit it to them. I’m so dehydrated by the time I get admitted into an ER room that I literally cannot pee anyway.


If I have another episode then I’m going to completely stop as an experiment to see if I am that lucky.
0
scooky1

Registered:
Posts: 132
Reply with quote  #9 
Oh now I understand!

When you said more than once "they can see I use pot" I was thinking you went in to the E R in a tie-died T-shirt long hair and shades and red eyes and flashing the peace sign! sorry!
I think that kind of experiment would be a good idea even if it turns out you do have this terrible illness at least you know one way or another.
You would be so lucky if it was just the pot making you sick because you could stop it! although I'm no Dr. I've just seen more than most people as is the same with all the people on this site.
We know all the meds and all the nasty things we get called and accused of in the ER so you kind of came to the right place for info from people like you.
I hope for your sake you are not ONE OF US but if you are there is lots of good info and cheering up and ahh baby it's going to be OK here!

                                                                                                                                 Welcome to the club, Steve

PS. I just looked back at your post and cracked up at the part where you said "if I have another attack"    Change the if to WHEN !
0
Jack

Avatar / Picture

Registered:
Posts: 5
Reply with quote  #10 
Why do you believe it to be when?? 😮
0
scooky1

Registered:
Posts: 132
Reply with quote  #11 
Because the same thing was said to me years ago by a person here on the board when I was sure I had it figured out and hadn't had an attack for a while and was getting cocky and proclaimed myself cured!
I told the girl who was a moderator at the time (I think) that I was cured and YEA ME! then the girl said WAIT it will be back! it never goes away!
I went two years without an episode and then it came back and I have never had that long of a vacation from it again. Now, never for more than a few months.
BUT WAIT there's more! I am now on a bunch of cool drugs that I have been on for a while and I have not been there (ER) in about 4 months.
maybe they are working and maybe not how will I know since there are so many and which one is working so now here I am stuck taking all this stuff that is dangerous not knowing if it's working and so on and so on.
Oh! sorry about that rant but I can get carried away once I get going, but back to your Question.
All I can say is I hope you never have another episode again and sure why not keep a glass half full attitude !
                                                                 Good Luck[smile]
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.