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Kjo

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Posts: 12
Reply with quote  #1 
Hi Everyone! I haven't posted in a long time because I have not been having attacks! I am looking to find any new information on the correlation between CVS and Marijuana. When I was sick/diagnosed I was living in Massachusetts and not smoking/using marijuana. Now, I live in Colorado where it is legal and I definitely enjoy it from time to time. I have been attack-free since March 15 2013. It makes me so angry every time I see some article blaming CVS on Marijuana since I have had the opposite reaction. Any new studies etc?

Thanks!
Katie
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MannionUSMC

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Posts: 137
Reply with quote  #2 

Hey Katie,

People who blame CVS on Marijuana are mistaken.  CVS presents just like another illness Cannabis Hyperemesis Syndrome (Basically saying an illness where pot makes you vomit a lot).  People with CHS when they stop using marijuana will see their symptoms disappear, this is why a good CVS doctor makes their patients stop Marijauna for a while before they can get a CVS diagnosis.  ER doctors confuse the two, people who diagnose themselves or have a doc who doesn't make them try to stop marijuana (or who they were dishonest with about use because of the stigma) confuse the two and we get clumped in as with the "all you have to do is not smoke" crowd.  I still get it in the ER sometimes, but can school any doc on the difference between CHS and CVS and I was not on Marijuana for many years while I had CVS.  I am glad you are in a place now where you found a legal medicine that is helping your quality of life.  The best thing you can do is educate anyone who doesn't know the difference between the illnesses when it comes up (if you are in the ER and the doc is confused when you are better ask to speak with them and explain yourself for next time).  Keep being strong. 

Mannion

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Kjo

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Posts: 12
Reply with quote  #3 
Mannion,

Thank you so much for your reply! I didn't realize it was just that the two were getting confused because they are so similar. I would have given anything in the world to have it be as easy as "stop smoking pot"!

Katie
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MannionUSMC

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Posts: 137
Reply with quote  #4 

Hehe. I feel you there.  Most of us would give up way more then pot to stop this madness (In my case I would give up body parts if it would make it stop).  After I am better in the ER I often explain to the nurses about how I wish I didn't need Narcotics to end an attack, and that if they had something else (even if it took my sight for 24 hours or something) that stopped an attack that they would give me without a problem I would take that blindness med without issue.  They always respond with, "Nooooo," like I don't know my own body or what I am willing to do to get out of attack. 

Those who have never felt pain, seldom think it is felt.  -Samuel Johnson

As a Retired Marine I can also honestly say I would live in Marine Corp Bootcamp as a recruit for the rest of my days, if it meant not having another attack.  I could probably go on all day. 

I just set up home care and need a lot of help from family or I would be out in Colorado as well (While I am a NJ medical Cannabis patient, I can't stand the quality of medication being horrible because of government oversight that made it that way to be difficult).  Stay Well

Mannion

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Jay

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Posts: 211
Reply with quote  #5 

In CO a few good ones for CVS to look for would be the Charlottes Web strain or something else like LSD(lemon sour diesel) i recently tried a good one here in WA called Doctor Whom. 
Anyway Those are all the strains off-hand I can think of which have higher levels of CBDs which is what you really want. The LSD and the Doctor ones also contained higher amounts of THC while retaining the high levels of CBDs(15-18%CBD)

AND THATS THE NEWS FROM WASHINGTON!

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demoncleaner

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Posts: 277
Reply with quote  #6 

CHS is a hypothesis.....that is all.  it is poorly described, over diagnosed, and almost all reported cases lack any credible followup data. And it is a PITFA for anyone with CVS that uses Cannabis for relief.

You will not find much support for Cannabis here from the CVSA, only from patients using it.  The overall stance here, is that Cannabis makes CVS worse.  Some of us know better.

If it works for you, keep using it.  I have used for 30 years and it is the only thing that helps other than morphine. Docs tell my I have CHS all the time based on 2 questions: 1. do you smoke pot. 2. do you use showers for relief. = you have CHS. I ask them to explain how my attacks started 14 years before I took up a cannabis habit, and then disappeared for the next decade when I introduced Cannabis into my body.  DERP.

@jay:  if in CO, there are much better strains than Charlotte's Web to be found in stores and dispensaries.  Strains such as AC/DC, Harlequin, Cannatonic, Dance Hall all have better profiles than CW does if seeking high CBD cultivars.  All that makes CW special right now is it can be called a Hemp plant, thereby allowing for the national sales and shipment of CW products.  the original CW oil was something like 85:1 CBD/THC....but the THC was still too high.  New CW comes in around 35:1... it is not the original plant that was used anymore.  There are better CBD cultivars to be had if THC content is not an issue, which it is not if you live in CO. Stuff like the LSD you mention is probably better suited for us, but all folks are different as are all cannabis strains.

CBD will help with internal healing, spasticity, inflammation in the bowel, anxiety, sleep, and many of the same things that we are rx'd benzos for.  THC is much better for breakthrough pain, nausea and vomiting and the only thing that I can completely derail my nausea with during a full on attack is to dab concentrate. My feeling is we need full spectrum Cannabis, not just CBD with CVS.  I think CBD helps at the root of the problems and THC helps with immediate relief, appetite stimulation, etc. Just my speculation.  I had just logged in to post an article regarding IBS/CHROANS/ Cannabis.

That's the thing Katie.....all of us would stop smoking pot if there seemed to be a genuine link.  for most of us......we cannot find one. If CHS exists, it is in an extremely small subset of users and does not affect the bulk of people.  which leads to the question, do those users have something similar to us in terms of underlying conditions or is it purely and allergic type reaction to certain types of Cannabis? I for one, feel like at least a % are being misdiagnosed.....the same as most of us have been misdiagnosed our entire lives because doctors do not understand what is going on with us.  And they CERTAINLY don't understand Cannabis!

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Kjo

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Posts: 12
Reply with quote  #7 
Awesome thanks for all the feedback guys!!
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