Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 3      1   2   3   Next
Boncol

Registered:
Posts: 2
Reply with quote  #1 
Hi---I am trying to find out if anyone knows of people who stopped smoking marijuana and remained episode free. All that I seem to find are a few people who say they have abstained and are doing better but it is usually only a few weeks later. I am assuming that most people, when they get better, may not return to sites such as this....so I can't find any one.
I haven't heard of anyone saying they've abstained from smoking and then continued to have episodes. I am desperate to find people to speak to a family member who has been very sick for years and is convinced marijuana is helping him. He is in the hospital, usually for a week, every few months for years now. 
He does not believe me but he told me if I found actual people who have been sick like him (severe adult CVS) and are now better (after stopping marijuana), he would talk to them. He thinks the research about cannabis is just anti- legalization hype. 
I try to explain although he has been diagnosed with CVS for five years now---he may really have Cannabinoid Hyperemesis Syndrome and if he would just try to stop he (and his family) may be released out of this cycle of hell. 
Any info would help. Thank you very much
0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #2 

Have you tried a msg board search.  The search link is in the upper right corner of this page.  Honestly when people are doing better, they generally stop posting.  I know that a few had tried stopping, but I don't recall if they posted the long term effects or if they remained episode free.  There are cases where the use of MJ does help, we have others who are prescribed marinol.  MJ is like any other drug, helps some, makes others worse or has no effect at all.  The ulitimate decision to stop or not lies with the patient.

 


__________________
I may have CVS but CVS is not me.
0
ginny

Moderator
Registered:
Posts: 4,375
Reply with quote  #3 

Recently published paper by Choung on the CVSA referenced on the recent papers page, published September 2011.  Might be helpful to look up the paper. 

 

First time I heard about this possible problem was at the Boston Scientific Symposium.  I think that none of those in the study had vomiting problems prior to using marijuana.  The problems developed after using for a period of time.


As Pattie suggested, there is information on the message board and also on the CVSA web page.

 

 


__________________
ginny CVSA Moderator
0
Doc

Registered:
Posts: 444
Reply with quote  #4 

I smoked quite a bit in college so I considered cannibinoid hyperemesis since my episodes began in my 20's. I did completely stop smoking for a 3 month + period, during which my episodes continued with no change. When I smoked again my daily nausea decreased as it did when I smoked previously, and I was able to eat more food without feeling so uncomfortable and terrified of vomiting. It does help me to feel better in general most of the time. When I do have an episode it doesn't help at all and isn't worth the misery of even attempting to smoke while actively vomiting. However, it is very valuable to me as a treatment for my daily symptoms. I wish so much that I didn't have to resort to something illegal to help me get through the day without vomiting. However, it is the #1 most effective medication I have used, (with the exception of nortriptyline which kept me episode free for 3 1/2 years until recently when I have had 3 episodes in the last 9 months) and I will continue to use and hope that this herb will one day be made legal to help people who are suffering.


__________________
Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
0
Deborahlynne

Registered:
Posts: 22
Reply with quote  #5 
Dear Doc,

After reading this ' nortriptyline " kept the episodes away. You may need an increase in dosage. Just a thought.



__________________
"You can do things I cannot do, I can do things you cannot; together we can do great things."
— Mother Teresa
0
Doc

Registered:
Posts: 444
Reply with quote  #6 
Thanks Debrahlynne. That's what we did very recently. Increased the dosage some. the only problem is that my testing blood pressure is already so low, and the
nortrip causes it to drop even more. I've been faint a lot since the increased dosage so a have to wait and see if I adjust enough to be able to handle the increase.

__________________
Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
0
Doc

Registered:
Posts: 444
Reply with quote  #7 
* resting blood pressure


__________________
Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #8 

Thanks ladies for posting, I too have often wondered this.  Since I don't partake, mainly because of hubbys job, I had no idea.  I have know of a couple of cases in my almost 7 yrs here where teens started smoking herb and it turned out it was increasing their sx., but never really heard how it went after they came off  it.  I know one  young man ended up going into rehab.    Thanks again for providing some valuable information.

 

Pattie


__________________
I may have CVS but CVS is not me.
0
jmeveringham

Registered:
Posts: 32
Reply with quote  #9 
What is "sx" ,Pattie?
 As in, "increasing their sx."
Thanks.

0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #10 

sx=symptoms


__________________
I may have CVS but CVS is not me.
0
islandman

Registered:
Posts: 17
Reply with quote  #11 

 I use to smoke when I was a teen....I had been clean for last 15 years...I was seeing doctors, who, as you know...say its a flue, or all in your head. I wasn't given any meds for the last couple of years. I tried smoking again to help with nausea, and stimulate my apatite..works most the time...now I am scared of the cannabis hymes's. Finally got diagnosed, and have a good Doc, he is working out a plan for my treatment. Amitriptyline , nausea pills...I feel that my disease was here before I started smoking again...any one with any knowledge about cannabis sickness, agree or disagree..  I really would like an opinion.

  Thanks

0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #12 

Islandman,

I have seen the gamut, for many it helped, but for others it had no effect or made it worse.  Its like any other pharmaceutical, it depends on the individual.

 

Thats the extent of my experience... listening to what others have reported over the yrs.

 

Pattie


__________________
I may have CVS but CVS is not me.
0
islandman

Registered:
Posts: 17
Reply with quote  #13 

 Thanks Pattie,  so I am guessing the docs will be trying diffrent meds..to see what works for me. I am begining to understand, that we all share alot of the symptoms...but treatment is tailor made.

 Harry

0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #14 

That is correct, you hit the nail on the head. 

 

Pattie


__________________
I may have CVS but CVS is not me.
0
demoncleaner

Registered:
Posts: 277
Reply with quote  #15 

@islandman

 

there are some good threads on the forums here.  in my case, cvs preceeded the devil weed by 10 years. first cvs attack, more than likely age 4. lots of "fearful vomiting" in youth. first classic cvs attacks from age 14 to age 18. started smoking herb daily at age 16. have consumed approx 1/2 gram/day for the last 24 years steady.  age 18 to 28, cvs dissapears completely from my life.  age 28 to 34ish, cvs comes back. age 34 to 36, cvs gone again. age 36 to 40, cvs back.  for me, i see absolutly no correlation between the 2. none, zip, zero, zada.  my use of the herb has been constant, my cvs has not. additionally, during times of abstinance over the years, again, no effect on my cvs. for me, its one of the things i thank my lucky stars for, as i feel pretty much just like Doc put it. its been a blessing for me with cvs.

 

i encourage anyone concerned with CHS, to take the time to actually read these reports. ..... draw your own conclusion. there have been ZERO formal studies, because you CANNOT legally study herb.  read the latest mayo report, its REDONKCULOUS, lol.  it declares among other things that "Researchers have found clear associations between marijuana use in young males and cyclic vomiting syndrome " and "When this was adjusted for age and gender, males using marijuana were 3.9 times more likely to be in the CVS group and women using marijuana were 1.2 times more likely".  one would think if it was the substance, then it would be equally represented among both sexes as we all metabolize them the same way, regardless of gender. in fact, women tend to have more bodyfat and one theory is that since it builds up in the fat, CHS is the expression of that. one would think they would also use an equal pool of each sex when trying to determine such a figure. one would think.   

 

 

the disturbing thing is like what happened to me 4 monthes ago at the ER. i present with vomiting/pain. i mention that the only way i can find relief without pain meds is taking showers. !!!!RED FLAG, RED FLAG!!!! i am then asked "do you smoke pot?". i say yes. i am then told that i have CHS. this, despite the fact that i just handed the doc a STACK of CVS lits, DR F's essays, etc. this despite the fact that beyond unexplained vomiting and hydrotherapy, CHS in no WAY duplicates the host of symptoms that a panic induced CVS attack produces, and this despite the fact that i know based on my own experiance that cannabis has no impact other than positive on my CVS. HOT SHOWERS+VOMITING+HERB = CHS diagnosis. are you kidding me???? how much usage. what defines usage. what defines heavy usage? and so immediatly, in the eyes of the ER doc, i become a drug seeker, seeking opiates, with drug induced vomiting simply because i use cannabis and showers to help treat my cvs. and that is complete BS. the doctor declared that she had 4 other CHS patients that were frequent flyers, and i wanted to say "and you used the same diagnostic criteria you just used with me to arrive at that conclusion?" lmao. of course, she had never even HEARD of CVS, but she knew about CHS. that is what is disturbing to me. a real condition, that people actually suffer from, being less know than a completly speculative condition, linked to a substance that cannot be studied and with 80 years of disinformation and stigma associated with it.  this same doctor then presumed to chew my ass for not taking a reglan prescription i got a decade ago when my gi had given up and didnt know what other pill to shove down my throat. this despite teh manufacturer saying that no one should even take reglan for more than 3 monthes, let alone a decade. they have had so many problems with it.

 

there seems to be some sort of overlap. cannabis makes some users anxious, and cvs stems from anxiety at times? on the other hand, CHS is attributed to "heavy use", whatever that entails, and generally, "heavy" users are not affected by cannabiniod induced anxiety. all strains are not the same,, there is huge variety in cannabinoid makup from strain to strain. to broadbrush stroke it and say all herb will result in CHS is fairly ignorant. there are around 70 cannabinoids. we know a little about one of them and very little about the rest.   at some point, especialy with the brewing synthetic drug epidemic where we are seeing what ultra high doses of some of the cannabinoids can do in humans, an explanation may/will come out of this, but at the moment there seems to be an awfull rush to put the cart before the horse and we have seen it time and time again with this particular substance. "causes damage to memory".  and now most recent studies show that endocannabiniods provide a key role in the function of memory. anybody that is concerned about CHS, just look up the reports and be your own judge and also listen to your own body and be truthful with yourself about if you think it is having a positive or negative impact on your CVS symptoms. even THINKING that it may be a negative could cause you to turn the experiance into an anxiety building one, which is a no -go and should preclude its use.  

0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.