I'm new here on the forum not the site......Sorry for the lengthiness: Here's my 2 cents:
I probably have this disease. My first "experience" with this disorder hit me in my early twenties. I was a champion mountain biker and rock climber with extremely low body fat. I was married and smoked quite a few b's every day. I woke up one night with indigestion and threw up and got in the shower to relieve the terrible headache that I had accompanying the nausea. I'd been sick plenty of times in my youth but the difference this time was I continued to throw up for two weeks. I was forced to go to the hospital. Iv's saved my life because my blood had congealed and the nurses couldn't pull any blood because it was so thick. I didn't sleep a wink for the two weeks prior to being hospitalized. The pain was EXTREME! No amount of pain meds or anti-nausea meds worked. Even a whiff of food sent me into extreme vomiting. Seeing any pic or commercial with a food image made me gag. I begged my wife to not cook on her lunch breaks. I threw up bowl after bowl full of acid, bile, and the water I was trying to keep down. I drank gatorade some because it tasted better than bile coming back up. My pulse raced at 120 bps. It was exhausting. I became delusional with pain and sleep depravation. I talked to God to ask him what I had done to cause this - no answer. I really thought it was punishment for drinking. The cycle was something like this: throw up, break out into sweats, then chills, then b-line to the bathtub. I'd bring a big bowl to puke in with me. I'd stay in until I ran out of hot water. Then quickly I'd dry off and get into bed. The heat from the bath would make me sweat and I'd lay there for an hour or so until I could almost relax and then, boom, serious vomiting would hit me so hard that I would barely make it to the bowl, sink or toilet I was closest to. This repeated the entire two weeks until and during the hospitalization.I was hooked to the IV tubes but begged the nurses to let me shower with tubes sticking out of the shower. They let me a couple of times. I believe I was in the hospital a week. My gastroenterologist was considered to be the best in my city
.he was old and mean. I had upper gi scope done and other than swelling in my stomach, there were no ulcers or serious problems. My doctor discovered I had H-pyloric stomach bacteria that can cause ulcers in the gut. He treated me with what he called a triple antibiotic therapy. I was release and I recovered and fought back into shape (I had dropped to 120 lbs. from 155). After two or so weeks I had a follow up appointment. The doc looked into my eyes and thought he saw something wrong. Of course, I was paranoid that he was seeing marijuana use but no, he dismissed it and declared me "well". I had resumed smoking during the recovery
it worked wonders for helping me get my appetite back. Life returned to normal for two or so years and then the #2 attack hit. This time, being that I had no insurance I didn't seek medical help. I began to learn ways of getting through with enemas, hydrotherapy (baths/showers/hot tubs). These episodes would hit every two or so years. Generally after about a week to two of vomiting I could start the process of running water in at both ends to try to meet in the middle. I could definitely tell that there was some blockage, obstruction or kinking of my small intestine. It would take drinking about a gallon of water, all at once after putting two or three big enema bags of water in my rectum. It would feel like a dam breaking in my gut and the most foul black tar and diarrhea would come out. I would have to manually push the fluid around my gut with my hands to work it out. I would cry my eyes out with joy when the bowels would exit and I would drop from ten level pain to more like a two. I could tell the substance or chemical properties of this tar like bowel were very toxic because wherever it would be in my intestines I would cramp and have pain. And not just in my intestines, my rectus abdomens muscle would cramp so hard that it would look like a scene from Alien.
Some of the things I tried:
My first attack was nearly 25 years ago. I became convinced it had to be a liver problem (or at least part of the problem). I did a liver flush and passed hundred of gall stones. I passed one slightly smaller than a golf ball. I led a very organic, almost pure vegetarian lifestyle for most of 90s. I had a colonic and passed a HUGE tapeworm. I took neem oil pills to kill parasites. I could always get back into my athletics and compete at the highest local levels. I went to acupuncture school. I studied Tradition Chinese Medicine and became familiar with 350 Chinese/Indian/Native American herbs. I made formulas for myself and others (until mice got into them and I stopped working with them.) I received lots of massages and acupuncture. I practiced yoga and meditation. I bought out a naturopathic doctors inventory of supplements, herbs and extracts. I could list a lot of the things I tried medicinally but that would be ridiculous. I would still have an episode of vomiting every year or so. I had to go to the er several times for IVs. They gave a Xanax on one visit that was like a gift from heaven because I could sleep for a change. The IVs saved my life several times. Other that during an episode, I continued to smoke (and even during if it was a light attack). My parents live in another state. They were perplexed and seemed to think I was doing something to myself i.e. hard drugs or heavy drinking. In truth, I cut down further and further on beer and weed. They had not seen me go through this. I went to visit and spent the night. I was sober and not high and they could see I was healthy. I then had an attack in front of their eyes. About 5 in the morning my father made me get out of the tub because he was sick of water running all night . It was a typical horrific attack with massive vomiting. They were shocked. My brother had to drive my vehicle and they had to lay me in a van and drive me home. we stopped many times on the highway to empty the gallon bowl. Anybody who has witnessed my attacks has said they have never seen anyone as sick. After that, they got behind me a lot more. Family and friends would give me very powerful meds or tranks during my attacks (i never took scripts, pills, or anything between episodes unless it was natural or herbal based partially because my stomach seemed hypersensitive to anything dissolving in my stomach and I've always gone natural). We were all so confused how quickly I could go from 100 to 0 so quickly. I had to dissolve all pills under my tongue because of the vomiting. I cut out all caffeine (coffee). I then cut out ALL drinking for several years. I cut smoking weed, as well. Since this was about a dozen years ago I can't remember how long I went without both but I did. I really felt about the same as when I was using as when not (except I didn't need as much sleep). I assumed it was the booze and probably decided to have a puff instead. It seemed to work so I though the problem was solved and then boom, another attack. So, I ruled out the booze at that point. It never occurred to me it could be something in the smoke because usually your body will have an instant reaction to a substance it rejects. I then went to a local college of medicine and the did very detailed questioning of my condition. The doctor ask me about an hours worth of questions, many about my bowel consistency. I told him the closer I got to an attack the smaller the diameter of my feces would become. It was an indicator that my heath was slowly going south. Also, brushing my teeth would cause a gag reflex if I brushed my tongue. I would try to ignore it because what could I do? Laxatives and fiber could throw me into an attack I discovered. The doctor set me up for tests. Upper and lower gi, gall bladder scan, x-rays, ultrasound, etc. I didn't have to have my gall bladder taken out because I had done the flush (saw that one coming). I did the scopes on April 30, 2001. As I type, I have the pictures from the gi scopes in front of me. I had a normal stomach, normal duodenum, another section of normal stomach, mild esophagitis/erosion, a sessile polyp (removed), two sections of normal colon and an amebiasis ulcer. The amebiasis is a amoeba that causes dysentery. It kills 70,000 people a year. Now, this seemed like a more probable explanation of my condition. They gave me a powerful chemotherapy prescription to deal with it. After taking about 2/3 of the chemo, I was thrown into another attack (one of the huge reasons I hated taking any pills). I assume I had enough chemo run through me to kill the amoeba, Got through another one and got back to my life. Incidentally, I went to another doctor, an old bootcamp D.O. who would treat people for next to nothing (no insurance). He wanted a urine sample. I was so dehydrated I told him I couldn't pee. He told my wife behind my back that he suspected cocaine use because I wouldn't/couldn't pee. Ha! I told him I could squeeze a little puss out of the tip but nothing else. He determined I had a massive staph infection, the worse he had ever seen. After moving on from his coke theory he said he thought I had Crohn's Disease. I figured I had Irritable Bowel or some variation of it, as well. Then one day I saw a commercial for a class action suit against a pharm company for the complications being associated with taking Acutane, the drug I was prescribed as a teen for acne. I almost fell out of the chair. I quickly called my parents with news. What else could it be, right? People who took this drug had been having massive problems with their GI and had to have parts removed. It gave them Crohn's and IBD problems and some were awarded millions in the suit. I (of course) took the Acutane so long ago that I couldn't get in on the suit, but at least I had a plausible theory about myself. Acutane was developed as a strong chemotherapy. I didn't know that until I did research. So, I had been on chemo twice in my life and never had cancer (you see why modern medicine and I don't get along). The D.O. doctor died and my original gastro doc retired, I still didn't have insurance or a doctor. I then went through an unexpected divorce. I'm sure she was getting pretty tired of witnessing over a decade of my roller coaster ride and the financial problems it caused from not being able to work. I started dating and drinking again, the old wine and dine. I looked good, was healthy and had fun dating. I went for about three years of great heath. My parents assumed it was all caused by stress associated with the marriage. I started drinking more with the ladies and smoking less (didn't want some knowing I smoked and kissing is kinda a giveaway). I met a special lady after a couple of years and we've been together six. After three years I then became very very sick and had to go to the hospital once again. I broke down and went because I knew I would die if not. They asked me upon admission if I drank and I stupidly said yes. The nurse made kind of an "aha" sound and I knew I was screwed. They discovered I was in full renal kidney failure. This was very bad for me because I only have one kidney (from birth). They said my blood was the worst they had ever seen and every spec was backwards from normal. They assigned a nephrologist and he told me I would die. I said "bullshit" to myself and wanted water! He told me if I did pull through that I'd be on dialysis for the rest of my life and they scheduled me for three dialysis treatment over three days. They did one and I started producing urine and they were shocked. I was in for five days and three in ICU. The nurses were terrible because they thought I was some hobo drunk (having not shaven for weeks). I pleaded for them to listen but they scoffed and told me alcohol was going to kill me. At one point I showed my closed minded doctor a small light scar on my stomach where I had pressed so hard with a wood rod to try to get the pain to stop that it left a scratch scar. I showed her to demonstrate the main area of pain and that it was not an esophagus problem (they theorized that drinking messed it up and made me vomit). She wrote in my chart that I was self mutilating. That was a terribly frustrating experience and they based all this on NOTHING other than me saying I drank. They never even got me a gastro doctor. They did save my life but I'm sure they really screwed me on my med chart. They handed me a $35,000 bill and I went on my way. Now, after this hospital stay things have been different. I have some slight waves of numbness that go down my left arm on about a five minute cycle. My eyes have gotten so tired from sleep deprivation that it's been hard to focus. My energy level has been down. I went from an athletic lifestyle to focusing on music. I helped start a country band as the lead guitarist and started staying up late practicing. I theorized that if my health didn't improve that I would have to find multiple ways to make a living. I knew I might have to contend with a stage fright problem so I cut way back on smoking (was afraid of freezing up). I began to drink more because I started to have terrible problems sleeping and wanted to be loose to play for crowds. For the next year I had no attacks. Then I quit drinking and smoked more. Then came the attacks again. I actually started to drink myself to sleep because of the symptoms. My symptoms have been less severe since my hospital stay three years ago. They have been more constant, though.
Other things:
The pain and anxiety of the 10/10 scale attacks is horrible. The other peoples testimonies show me where their pain is in relation to mine. During a 10, I can't sleep, see food, smell food, or get comfortable I can't talk more than a sentence, my stomach pain is horrid, the back pain is just as bad, and I'm spending as much as 20 hours a day in the tub. My muscles cramp to the point that my hands gimp up and I have to use my opposite hand to jerk my finger straight. Any muscle can cramp at any time and constantly does. I become beaten down by charlie horses. I begin to lightly hallucinate, I set up stations on couches and beds and next to the tub with gallons of water, barf bowls and blankets. I can't focus or text, watch tv, or keep track of time. My house plants begin to die and I can barely feed my dog and often don't. I often ponder when other people would have thrown in the towel and killed themselves. I become highly manic and confused. After it's over it's a blur. At a pain level of five I'll roll around on the floor for hours on rubber balls to push into my sore back (my back feels broken). If I arch my back and hold my breath and squeeze my diaphragm and lungs I pass out. I've passed out on my couch and reflexively kicked everything of my coffee table, bong included. Interestingly, this gives a minute of relief until the blood goes back to my brain. At a level three I barf every day or so but it's mostly back pain that keeps me from working. I maybe take four or five baths a day. I can do short tasks. I take a bite or two of food a day or every other. I can maybe get in four hours sleep. As I type this, I'm at a level two and can watch tv, go to the store and talk on the phone. My level has not been over a five since my hospital visit three years ago. I can't quench my thirst and my mouth feels like cardboard. My taste buds don't work well and I shake making typing and touch pads difficult. I recently checked myself for diabetes and I'm ok there. Most of these symptoms are due to dehydration, electrolyte imbalance and potassium deficiency. The epicenter of the problem is about two inches above my naval. It feels like there is a softball sized ball of tension and pain there radiating to both sides but nothing has shown on an x-ray. I threw up today and yesterday and a few days before. I didn't work today.
Even stranger things:
Most of my attacks seem to be during cold times of the year. They seem to happen during dry spells. My feet are very important in all of this. If I step onto a cold floor I'll start choking and gagging. I bathe so much that I often am drying towels. When I walk out into my cold garage to do so I heave. I have to keep the perfect balance of clothing on to fight these differences in temp. Heavy socks work wonders when it's cold. Congestion seems to be a problem because of cough/gag reflex. Sinus drainage does the same, as well. Walking into any room with a temp change can cause this. If I dry heave even once or gag and squeeze my gut it is as if something is released into my blood that makes me shake and tremble. My veins disappear in my arms. My jaw completely realigns to where my front teeth start to touch and my molars wont at all making eating, even if I could, very hard and strange. The shift in my skull causes compression around my left ear that makes it feel like there is water in there and reduced hearing. My lower body feels disconnected from the top. I sometimes have cloudiness in my urine which I'm sure is staph. I've sat in apartment whirlpools for so long I've seen the seasons change before my eyes. I often practice taking hot showers and then switching to ice cold for as long as I can bear. I do this to conserve hot water, to pump blood around my body and to keep from sweating as much. Remember, it's about keeping my body temp consistent. Sex and female touch speeds up the healing process when I finally can.
On a positive note:
It has led me to an extensive look into my body mind and spirit. It has helped shape my career path. I look a decade younger than my mid-forties age (so I'm told). I have never been overweight. After I recover, my senses are superb, especially smell. My ability to think improves dramatically as does my singing voice, artistic side and guitar/music as if something that has locked down opens back up. I'm happier, joyous, talkative and very emotional and thankful to be alive. My anxiety drops and I slow down. I can eat anything and almost never have problems. I feel the way I was designed to feel in my natural state and I feel like I have extra perception. Then, I slowly start going south with constipation and diarrhea alternating.
Why write this:
I love cannabis. I think it has wonderful properties and has and will help many people. I do not advocate quitting if it is helping with pain or other problems. I have had great luck with it in the past, even while sick. I think breeding and testing and isolating its chemical properties might be huge in the field of medicine in the future. I am not a disinformation agent. I don't work for any agency and have been self employed for over twenty years. I am not trying to scare monger. I have nothing to gain anything by writing this but the sharing of information and the thought that it may help someone figure out there own puzzle. If you read the above, you should realize how many things I have tried. This disorder has wrecked my life. I plan to post this on forums and send it to doctors who might figure out what others are going through. That is why this information is so lengthy because I don't want to write this over and over.
Dispelling some notions:
I have only just recently quit. It wasn't until I bumped into an article like so many other have. I am going to use myself as an experiment. I hope that anybody that is curious can follow along with my progress. As you could probably guess, having known people who smoke TONS more than me and not have problems has led me to believe (in the past) that it could not be a problem. I considered smoke trapped in the stomach as a potential reason. I'm sure I have had some other theories but I can't think of them right now.
1.It is not a pesticide problem unless pesticides stay in your body for decades. I've smoked the full spectrum of weed but have not had to touch anything with a pesticide for probably 15 years and what I have had was almost all organic. When I was younger we mainly got Mexi stuff that probably did but the amount of cleansing I've done should have gotten rid of it by now. I'm sure veggies have the same pesticides.2.It's not exclusive to men. I've read plenty of female posts.3.It's a cumulative effect. I, for the last several years, haven't smoked every day. Probably .5 g (two or three hits before bed if I do).4.It has to be a chemical that is stored a long time, maybe filtered by the liver and released when the body starts to detox.5.It's not a choke till you puke situation. I've had attacks far removed from actual smoking.6.It is a morning sickness but it can be an all day for weeks problem.7.It's not a poor diet problem. I had better luck at times on a bachelors diet than a whole foods diet.8.Stress seems to coax it out faster but some terrible attacks have hit me while not being stressed.9.You don't have to smoke tons if you are susceptible to this. I used to but haven't for years.10.Bathing during symptoms is not an OCD. It's survival.11.I could be wrong but I don't think it's an allergen as much as a toxin. I've known/heard of people who were allergic to it and had instant reactions to it, even in it's unsmoked state. If it's not a toxin it still has to be a chemical that shuts down or squeezes the intestines in some people. Maybe the combination of late night binge eating coupled with a tightening of the intestines is too much for some people handle by morning. 12.I don't think it is strain specific. I have changed it up enough to figure this one out. It may be a chemical that lesser quantities are produced in some strains.13.People that are suffering with this are not kooks. It is very real. I can't explain the way the other testimonies and case studies have paralleled mine.14.People are not the same. If you don't have a problem but your friend does it shouldn't come as a surprise. People have lots of reactions to different substances. People have been killed by eating peanuts.
What am I going to do now:
STOP!! I'm going to give myself plenty of time to clear my system and find out once and for all. It's about the only thing I haven't tried. If it doesn't work then I guess I'll shift back to thinking it has to be a Constant Vomiting Syndrome, Crohn's, IBD or dysentery. I will have to keep looking. If I do have Cannabinoid Hyperemesis then I'll be cured and be able to help others. I am sure there is someone out there that has been misdiagnosed and suffering longer than me, but I am perhaps the longest case study of anyone who has come foreword on the internet.
In conclusion:
I just found out that others have been suffering in a similar way. I used to think I was the only one on the planet until three days ago. I was incredibly shocked. The kicker was hot baths. I guaranty (with no way to prove) that I have thrown up more than anyone you will ever meet. I have had more attacks over the last 25 years than anyone I have read about. I am so thankful to see some hope and to know I'm not alone in this. Please feel free to contact me if you have questions.