My husband is in the middle of an episode, and I'm digging through all the research online to try and find some kind of relief. Thanks to all who are sharing what has worked for them!
Something else to consider -- for a while, I thought he might have Cyclical Vomiting Syndrome, because the symptoms are indistinguishable. The only way to diagnose CVS is to show that they are free from mj use. Well, my husband is a heavy smoker, 41, with a history of smoking (eating, vaporizing, etc) since he was a wee lad. So it is more likely that he has CHS. He has just started having problems in the last few years, with these particular issues manifesting about 3 years ago. He's been to the hospital for 7 days while they ran every test, and to the ER or Urgent Care where they treat him like he is crazy, or seeking drugs. I just bought some capsaicin to see if that will help, as I discovered the poster presentation by Dr. Lapoint this morning and figured we could give it a try. He's taken over 50 hot showers in the last 3 days, but now that is not working very well either. My dad gave him one of his sleeping pills, which at least got him to sleep for a few hours, and he just took another one. Sleep often seems to 'restart' him so the pain is gone when he wakes up. Fingers crossed that is the case this time.
One of the things I am wondering is if the people who end up with CHS have an underlying mitochondrial dysfunction the way many with CVS do. That might explain why so few people who are heavy smokers end up with this syndrome -- it is epigenetic. CoQ10 and L-Carnitine are a successful treatment for many with that issue, so I've ordered those too, and will try them with my husband. Unfortunately, quitting mj seems to the be the foolproof way to stop the attacks, but I know that he really struggles with quitting. He says he wants to quit, but even this pain he gets into several times a year is not enough to motivate him. (I'm an occasional smoker too -- I support mj legalization, I have no issues with adults engaging when it works for them. But this clearly isn't working for him!)
I'm kind of curious if others have the same issues he has, though, between episodes. He has terrible insomnia/chronic fatigue and bowel/lower GI issues. The weed does not help either of these, although I don't know that it hurts them either. Some articles I've read about mitochondrial dysfunction indicate that these, along with migraines, fibromyalgia, chronic fatigue syndrome, and others, can be related to mitochondrial dysfunction.