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dbalentine

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Reply with quote  #16 
I was just recently diagnosed with CVS at the age of 22. I have been suffering since about the age of 5. When diagnosed I chose to self medicate with Cannabis as it helps TONS with the nausea and can help abort an episode. My  Doctor had brought this up but after much reassurement she is convinced this is not the cause of my CVS. I am currently looking to try the CBD oils in place. 
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Dawn Balentine
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betsiam

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Reply with quote  #17 
It definitely helped me for quite a while. But over time it started to make it worse. The doctors believed I had built up a toxicity to it now I can't even touch it.
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betsy
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MannionUSMC

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Reply with quote  #18 

What happens is to get a proper CVS diagnosis you are supposed to go through a phase of not smoking for several months to rule out CHS as a cause of your condition.  CVS is a rule out diagnosis (meaning everything else must be checked first).  When this does not happen patients who have CHS go around claiming they have a CVS diagnosis, when they in fact are getting sick because of Cannabis.  Then they stop cannabis one day and get better and every doctor who cares for them sees "CVS as just caused by pot and if you stop you get better," when in fact it was a misdiagnosis in the first place to diagnose the patient with CVS (suspected CVS would be better until the patient proved through urine testing they had clean urine long enough to show their illness COULD NOT be Cannabis).  When that is on file your doctor can alway look back to those months you were sick with no cannabis in your system.  Anyone with a good CVS doc, and a valid CVS diagnosis (has been through this process).  It hurts CVS patients who have gone through the process of making sure it is CVS and not CHS when you don't check because when a CVS patient needs help and comes across a doctor who has seen only a Patient who claimed CVS but got better by learning what CHS was and just quitting, they treat CVS patients like it is our fault (something I get a lot as a Cannabis patient, and it sounds like you guys are currently going through).  I recommend, having your GP monitor urine for a few months with no Cannabis in it to prove you still get sick without cannabis and to have a copy of that info for your own records.  I have found certain strains help better then others (I do better with indicas or blends then Sativas, but everyone is different), and even some strains if they jiggle the GI tract are not good during attacks. 

CVS care teams are a constant struggle of getting people to understand, so try to have your doctors be people who listen.  If you have to wait in the waiting room that is good because she is not concerned about staying late she is concerned about patient care and is caring for her current patient while you wait.  I see that as a good sign. 

I use my Cannabis to keep my pain management needs low, and get people giving me BS for both medications.  There really is no relief.  And for a people pleaser like me it can be hard, sometimes I wish I was more the type of person who did not care what people think, but I think being this sick makes you a more empathetic person (full sized candy this Halloween and toys for kids who can't have candy, empathy chip is turned to high).  Just keep swimming.  Be well

Mannion

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ginny

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Reply with quote  #19 
Well said Mannion.  Thank you.  So sorry you have been so ill.
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ginny CVSA Moderator
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xAllMadHerex

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Reply with quote  #20 
While I don't think that cannabis was the cause of my CVS, I can say without a doubt that I think it made mine worse.

I started experiencing symptoms in 2007, before I started smoking cannabis (so it's safe to say it can't have caused my case).  I smoked cannabis regularly from  2009-2011 or so, usually at night to go to sleep or sometimes when I was feeling sick to combat the nausea.  

Those were the worst years for my CVS... I was having episodes 1-2 times per month, and during my episodes I'd be sick and vomiting for 3 days (typically one of the three days I wouldn't even be able to hold water down), followed by at least 2 days of weakness and nursing my stomach back to solid foods.

In 2011 I stopped smoking cannabis, and by 2013 my symptoms were greatly reduced.  Now I have episodes about 3 times a year, and they are a lot less severe than before.  

Part of this is likely due to cultivating a lifestyle focused around stress reduction on both mind and body... I exercise regularly, do yoga, meditation, and watch what I eat.  BUT, I do think quitting cannabis helped a bunch... every once in a while I'll smoke weed, and the past two times I've done that I've vomited the next morning.  I don't know what it is, but it messes with my stomach.

I highly suggest your wife try not smoking for 6 months to a year... if that doesn't change her symptoms, it's probably not cannabis and she can return to it.  I know it sucks to let go of habits, especially when they can be helpful in a lot of ways (it certainly masks the nausea well) but desperate times call for desperate measures.  It's like a lifestyle elimination diet... you've gotta cut everything out except for those things you know are good, then slowly add things back and see how your system reacts.

One last thing before I go... considering that no one really seems to know what causes CVS, I think it quite possible that there could be multiple causes for it.  If that's the case, something like cannabis may not effect everyone with CVS in the same way and your wife might be fine with it.  Nevertheless, I think it's good to rule things out for certain.

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Natasha
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Sean

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Reply with quote  #21 
I first got sick in January of 2012. I had horrific nausea, irretractable vomiting and excruciating abdominal pain. The ER doctor and I both agreed that I had food poisoning due to a visit to a fast food restaurant the night before. 3 days later I was back in the ER with the same symptoms. This time a different ER doctor diagnosed me with a stomach virus. I went home but was back in the ER within 3 days. Now they had no answer and I was referred to a GI doctor. At this time I had never heard of CVS at all. It took about 2 months to get in to see the GI doctor. After an endoscopy and a ton of tests and lab work he said that it sounded like cyclical vomiting syndrome. I was clueless and asked for him to explain. He kind of glossed over the CVS and stated that I was probably smoking far too much marijuana stating that I more than likely had CHS. I told him that it wasn't possible as I didn't smoke marijuana. He gave me a look and attitude that conveyed that he didn't believe me. At this point I had to,push back stating very clearly that they had my blood and urine that he had taken as well as my lab results from my ER visits and I asked if there were any results showing THC in my system. He said no but he was sticking with his CHS claim even though there was no evidence of my having smoked marijuana. I also explained to him that after retiring after 23 years in law enforcement that I hadn't decided to start smoking weed or taking any other drugs rather than playing golf or fishing. I was fairly insultted and sought a better diagnosis from a more competent doctor.

The only plus after seeing that joker was that I was able to research CVS thouroughly having first heard it from him. I had been diagnosed with PTSD, depression and anxiety after working for 5 months straight in lower Manhattan as a first responder on 9/11. I had been diagnosed years earlier and had never had any physical issues because of the PTSD. I do have several health issues due to my exposure to the toxic cloud that we worked in that did exacerbate the PTSD, anxiety and depression. I discussed this many times with my psychiatrist who stated that the anxiety and nightmares that I experienced could be triggering the CVS. I saw several other doctors and another GI doctor who ran many other tests. It took probably close to another 2 years before ruling out any other conditions and finally diagnosing me with CVS which was then certified by NIOSH, the CDC and the World Trade Center National Health Monitoring Program which was a great relief as the government now pays for all of my medications, doctors appointments and ER visits.

I had been having cycles every 3 months like clockwork. The main problem which I have stated on here before is the harsh treatment that I receive every time I go to the ER. I'm sure that there are many on this site who have experienced the same treatment. I am sleeved with tattoos and I have a lot of scarring on my veins due to monthly blood work and having IV's established every time I go to the ER. When I get a cycle, take multiple Zofran ODT tablets and make a futile attempt to stop the cycle, I finally concede defeat and many hours after the cycle has begun I go to the ER. At this point I'm extremely dehydrated and look like hell. I can barely articulate to the nurse and doctor just what exactly is wrong with me. One look at me and the condition I'm in, the pain I'm experiencing, coupled with the tattoos and scarred veins gets me labeled as a drug seeker every time, especially when I tell them that I need Dilaudid and Ativan to break the cycle. This is also when I get accused of smoking marijuana and having Cannabinoid Hyperemesis Syndrome. I know when they start asking me if I take a lot of hot showers or baths for relief that that's where they are heading. I always make sure that they test me for THC but that does little to assuage their suspicions. I always bring the empiric guidelines for treatment of CVS to the ER with me and not one doctor has ever even bothered to glance at them. After over 30 trips to the ER for CVS, only 2 doctors had ever even heard of yet let alone knew how to treat it. They all seem familiar with CHS and have no problem trying to diagnose me with it. Ironically I've had two doctors recommend that I use marijuana to help the nausea. Living in CA at the time it was easy enough to get the medical recommendation and I did try it. It was helpful but the smoking of it exacerbated the vomiting. I tried the cannabinol oil which worked well and stopped the cycle on several occasions. I just didn't like the chance of going to the ER and testing positive for THC. They would then insist that I more than likely had CHS and I certainly didn't need that stress on top of the anxiety that I experience during those ER visits. I would do anything possible to stay out of the ER knowing how I've been treated in the past and almost knowing for sure how I'm going to be treated due to the lack of knowledge of our disease.

I moved to Texas from CA at the beginning of August. I go to a pain management doctor due to a severe injury to my leg that happened to me in NYC. In CA my pain management doctor also prescribed me the Dilaudid for when I would get a cycle as I have been successful stopping them if I take the Zofran ODT tablets, Imitrex and then if I can keep them down, the Dilaudid. That combination when taken expeditiously has stopped my cycles cold. Then I take Ativan. After that I take Thorazine so that I can get some uninterrupted sleep. I also take CoQ10, Lcarnatine? and at bedtime I take Amytriptaline and promethazine at bedtime along with Prazosin. Because of that routine along with a somewhat radical alternative medication, I hadn't had a cycle in over a year. I was hoping that I was I in some type of remission. However, a day after Christmas I ended up in the ER with horrific nausea and vomiting. The doctor here in Texas and the nurse were both very familiar with CVS and CHS, I hadn't used the cabbinol oil since CA so no THC basically ruled out the CHS. The only difference was that I had diahera along with the vomiting which is unusual for CVS and the doctor pointed that out. Because of that along with the abdominal migraine concerned her and she ordered a CTscan. That only showed an umbilical hernia which I was already aware of. She determined that it was CVS coupled with a virus of some type. I took Zofran and Promethazine for the next 5 days and was feeling better after that.

Sorry for the lengthy post but I haven't posted in awhile and thought I'd share my experience with the CHS vs the CVS.

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sean franklin
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ginny

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Reply with quote  #22 
Hi Sean, good to hear from you and happy that you went for a year with no cycle. Lots of CVS patients do have the diarrhea.  Dr. V states that CVS patients often have rapid motility (something I read about seldom on the Message Board).  I asked for clarification and I am told that the rapid motility is between cycles, as a cycle approaches the patient will often experience delayed gastric emptying.  Then some do experience the diarrhea.

The new adult treatment guidelines are coming soon.  Progress was reported on in the CVSA newsletter, Code "V".

It sounds like Texas has a far better understanding of CVS than did CA.

Good luck and please let us know how you are doing.

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ginny CVSA Moderator
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Sean

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Reply with quote  #23 
Hi Ginny, although I miss the beautiful weather in San Diego this move to Texas is proving to be a great decision. I was slowly being priced out of San Diego as the cost of living seems to increase daily. Overall I'm paying about 50% less and there is no state tax on my pension or SS. I've read on here several times about people experiencing some type of remission from CVS. I'm hopeful that I may be in that category since it was well over a year between cycles. I posted how I had one on the day after Christmas which wasn't nearly as severe as the one prior to that. I had an epidural for the chronic pain in my severely damaged left leg on 12/19 and felt horrible after the procedure which did absolutely nothing to relieve the pain. I think the overall stress from that shot that did nothing coupled with still settling after the move, Christmas and our anniversary the following day stressed me out enough to trigger a cycle. Having a virus on top of all of that wasn't helping either. My new psychiatrist isn't familiar with CVS but at least she's educating herself on it which has already helped her with another patient who has all the symptoms. I finally get to see my new GI doctor tomorrow, I can only hope he is as well educated about CVS as my last GI in California. Since I haven't had the CVS in such a long time and because TX isn't so free with prescribing so many different medications, I have eliminated some of my meds which so far is making me feel better. I believe I was taking 18 different prescription medications. My psych won't prescribe Xanax unless it's absolutely necessary. I was only using the Ativan during cycles and now that I'm finally out of that medication she may prescribe me Clonazepam or whatever the longer acting benzo is called. Texas is pretty strict with any scheduled narcotics which is a good thing. I'm in pain management for my pain meds and that doctor is one of only two PM doctors in a city/town of 100,000. He switched me from the Dilaudid to Opana which I already take as a ER med, he said it has the same chemical formulation. His reasoning was that the Dilaudid is extremely abused and selling for some astronomical prices n the street. I'm certainly not going to be peddling my pills as I need them for my chronic pain but I guess if the wrong element somehow caught wind of me having them I could be target of a burglary. I still don't get that logic as the Opana is actually stronger than the Dilaudid. Perhaps the dealers or their customers aren't aware of that yet.

Besides that episode in December, as I had said, I'm hoping that I'm in remission from the CVS, that would be a true blessing. I have to check my settings as I didn't receive an e-mail regarding your comment. I like to stay up to date on any new or helpful information that is posted on here. I'll let you know if this GI is receptive to the meds that my previous doctor had prescribed me and what his treatment plan is. First and foremost is the colonoscopy that I am overdue for. I'm not looking forward to it but I'd be foolish not to have it done.

Thanks and take care.

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sean franklin
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ginny

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Reply with quote  #24 

Such good news all around Sean!  the idea of your combo of chronic pain, moving, holiday, anniversary, virus etc exhausts me!  I hope that perfect storm was the exception to your remission.
Yes, a lot of people are experiencing remission.  My daughter is one.  My best guess is that she is now well over 10 years cycle free.  She has had many changes in those ten years and she is remaining well.  We never ever forget what CVS was like and never ever want to have anyone go through it either.
Your psychiatrist sounds fabulous! Let us know about your GI.  Can you bring him or her the Empiric Guidelines and Dr. Fleishers study about adults?  Maybe refer the doctor to the NASPHGAN guideline for pedi, the adult study is hopefully coming along soon but meantime there is a lot of good info in the pedi study.

I will keep the secret about Opana.  The med name does not matter as long as it works.  A good pain doctor is great.  Our pain centers do not prescribe any medication.  They evaluate and they do shots but no medication is prescribed.  My state might be even more strict than Texas.
Good luck with the colonoscopy.  As you know, the prep is the worst part of the procedure.


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ginny CVSA Moderator
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FloraFlabulous

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Reply with quote  #25 
For those of you who quit smoking cannabis... how long did it take for you to notice a change? I'm on day 12 and have been nauseous and throwing almost everyday since I quit. (And no it's not withdrawals because I've gone 5 days without smoking before and I was fine)
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ginny

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Reply with quote  #26 

Try searching the cannabis forum and a message board search.  I think I read 3 months but I am not sure.

There might be some research on this on the CVSA web page.  Dr. V was doing a study.  I also have a copy of a study with some reference to Cannabis that I will try to scan and post.


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ginny CVSA Moderator
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kalenbrianna

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Reply with quote  #27 
I personally was first mis diagnosed with CHS and stopped smoking marijuana for a couple months, my symptoms persisted and at times were even worse. Once diagnosed and treated for. Cvs my improvement is substantial.
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FloraFlabulous

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Reply with quote  #28 
Thanks Ginny. Once I hit the two week mark and I was still throwing up I decide to start smoking again and I haven't thrown up or been nauseous since. I've quit taking other prescribed medication and I've been feeling better in the last two days than I have the last two weeks which were smoke free. 
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FloraFlabulous

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Reply with quote  #29 
Quote:
Originally Posted by kalenbrianna
I personally was first mis diagnosed with CHS and stopped smoking marijuana for a couple months, my symptoms persisted and at times were even worse. Once diagnosed and treated for. Cvs my improvement is substantial.


That was my experience as well but I couldn't go a third week of puking daily, I just couldn't do it. I have been much better since I started smoking again so I'm not convinced that cannabis isn't causing the vomiting it actually helps me cope with my symptoms. 
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Smokeater42

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Reply with quote  #30 
I NEVER use MJ before CVS and I have had CVS for 27 yrs now and just got on it a year and a half ago and I CAN SAY IT SAVED MY LIFE !!!  I was having CVS attacks 5 days a day  down with the oil I am down to just one a day a aweek and its not as bad as it was before my attacks lasted 12 to 20 or more hrs now just 4 or 5 and no where near as violent, and I use the wax for pain  works GREAT
Smoke

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When you have CVS life is one puke after another
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