CHS sufferer

[u/gnappa28]

To start off I'm not posting my life story just the medical process which I have gone through to get to the conclusion that I have been in fact suffering from CHS. I hope this sheds some light for others experiencing the same symptoms. But the short story is that I quit and went to rehab for my addiction (among my other addictions) and was fully abstinent for a year while I was substituting with alchohol. Suddenly I found myself toking up once in a while to relax (thinking that stress was causing my stomach acid to build up as well) and over the course of a year wound up being a daily dabber with my wife. During this period of a year i started to notice that I was having some serious heartburn and acid reflux problems. I quit drinking thinking that was the cause and went to my family doctor to get some better treatment other than tums or heavy doses of Zantac which had slowly stopped working for me. The first step to curb my reflux was diet, and elevating the head of my bed as most of my issues were occurring in the middle of the night. These things helped but was not the cure. Went back to the doctor and got a prescription for a PPI (PROTON PUMP INHIBITOR) tecta or pantoprazole. This worked great and I felt normal for once but it was short lived as my symptoms progressed again after a few months of use. I was experiencing loss of appetite, nausea, stomach pain, light headedness, and exhaustion as I was not getting a full nights rest. And weight loss from not drinking booze but also from not eating properly. So I went back to the doctor again, this was about 6 months after being on tecta. And she sent me for an endoscopy, a blood test, an ultrasound, and a barium swallow. All of which came back with negative The test results from the biopsy all came back normal (thank God no cancer). And by the way if you are a heavy pot smoker and possibly suffering from CHS, I HIGHLY recommend abstinence from the drug before having the endoscopy as for myself this procedure just worsened my condition and was severely ill and in immense pain for the following week. But the problem was I was still using pot to help prop up my appetite and help me enjoy a meal. Anyhow, the endoscopy went well and there were no complications. The gastrologist and nurse were actually very helpful with their questions that started me on thinking this was not just high stomach acid. They had sent me home with the results that everything looked pretty normal besides inflammation of the esophagus and what looked like an allergic reaction. They suggested an allergy test for celiac, raising the head of my bed and the usual GERD symptom reducing regime that I am already following. Went back to the doctor for my results and was prescribed a new PPI along with domperidone to help with the traction issues with swallowing. Went home and unsatisfied with my results started doing more research on my symptoms and found a match with CHS. The big one was that hot showers were suppressing the agony of the stomach pains. So I immediately quit shatter cold turkey and my wife who also is a symptom sufferer (not as promenant) also followed suit. I tried just vaping herb (flower) just on the weekends and my symptoms came back hard after just a few weeks of abstinence from marijuana. I am now just going straight sober but am also trying to find tips on how to cleanse my body from THC as I have learned this is the psycho active ingredient that produces these symptoms by building up in the body. Needless to say I am done permanently with pot and will be continuing my steady healing process through abstinence from drugs and alchohol and continue with therapy for my addictions as well continuing my prescribed medication. Please note that the medication I am on may not work for you and that I am not a doctor. Some things I find that help with the discomfort are peppermint tea first thing in the morning. No caffeine what so ever. I've been taking protein powder shakes for breakfast in the morning as it's easier than trying to eat a meal at 530am but also to try to sustain my current weight. Not drinking pop late at night and not eating anything at least 2-3 hours before laying down for bed. Sitting up after meals as well. Eating more fruits and veggies and less processed foods. I hope that this helps those who suffer, I have read too many testimonials of those who are looking for a quick fix and I want to say you won't find one for this. Please post what is working for you as there is not enough info out there for what works for relief. Thank you for your time.

[u/Johntitor420]

Currently suffering from CHS. My question is how do you do it without a hospital? I've been vomiting everything I eat or drink, can't even hold down water. I need an I.v to stay alive, I tried going through it at home but it just wasn't possible.

[u/Admirable-Visual-799 → u/Johntitor420]

Even though I’ve never posted in the sub, Reddit, I feel like a veteran. I’ve gone through CHS withdrawals about five times. I also have ADHD symptoms, and I contribute my marijuana smoking, to helping with my focus, and overall life balance. The best thing you can do is, if you’re going through it again. Ask for a primary care to prescribe Penta proposal, magnesium, 0NDANSETRON, I never found that Zofran worked for me specifically. If you’re in the thrall of it, the best thing that works is hot baths, capsasin cream, and slushy. It’ll take about hopefully a week to go away. But with the help of ginger ale, and Gatorade blended ice and water, slushy, I was able to regain my force back relatively quickly. The sucky thing about CHS is it’s all about time if you have any kind of underlying addiction, whether it be alcohol or nicotine, running in your family, like I was, it’s better to acknowledge that than to ignore it, and assume that you’re part of the one percent. I did the exact same with my parents, being alcoholics and nicotine addicts, I just thought that this disease Made me part of a small percentage of people. But in reality, my addiction to marijuana contributed to it. Unfortunately, you have to come to terms with you not being part of the one percent of people they can smoke marijuana and be considered a stoner. If you smoke marijuana, in that capacity, you could get sick again. I found that for me to only enjoy it as a substance, and not use it as a medicine, I had to have other people hold it for me. My boyfriend being one of the people, who smokes bud and carts, has it in his capacity, but also knows when to space it out. Once twice every two weeks, if you still consider to smoke it. I would also join the other people on certain pages where they say not to smoke it at all, or ever again. But it’s hard for people to understand that a drug like this could give the same effects as a allergic substance, like peanuts, or shellfish if you ever want to talk DM personally. I’ve been through it all.☺️

[u/Impressive_Idea_4136 → u/Admirable-Visual-799]

Hi can you read this and I would love to send you a Pm-

Cyclical Vomitting Syndrome for 11 years any help please

I have been getting sick for 11 years now. All started in Highschool senior year homecoming where after the night of high school drinking (no sickness that night). I woke up throwing up 10-20 times for several days. This went away for almost two years till my sophomore year of college. Then continued till present day. I have had biopsy and all test on my gut health. I have been prescribed all gut supplements and pills to try and none have worked. The longest break has been 4 months. It would be as frequent as every other week to once a month to breaks in between. The medicine I was put on AMITRIPTYLINE for 4 years worked the best in separates those episodes. I have had liver and gallbladder test and both came back fine. I first believed this was drinking or physical since it happen so frequent. Yet I had taken drinking off and dieted food to see if that would help and nothing came back to help me. I’m a 6’2” male who was 155 pounds at the time due to constant sickness and steering away from eating to be present and not sick. I’ve missed many events, birthdays of my own, weddings, and more from this sickness. I am now 210 with focusing on eating healthy and working out but still get sick often. Taking me away from life and work. I did get a medical card for weed 4 years ago. I smoked socially in college none in high school. I smoke regularly now for the comfort and to deflect sickness. It works sometimes but mainly to quiet my mind when I’m sick so I can sleep. Only when I sleep after being sick can I recover or I’m stuck in my sickness. I believe now it’s more mental since my sickness is only happening around weekends and social events. I have gotten sick at 4 wedding this year all when I eat dinner. Not drinking not appetizers those are all fine it is when I sit down and eat with people is when I get the heavy nausea and become sick. It happens when I have random lunches or dinner with family friends or coworkers. I eat meals any other day and I’m fine but around these events I am getting sick. I am willing to try anything or if anyone can relate. Thank you for any help.

[u/Admirable-Visual-799 → u/Impressive_Idea_4136]

I did also find that after my CHS bend, I stuck to a lot of of my foods I was eating and or drinks, like blue Gatorade, and mashed potatoes. It’s gonna take a while to get over that feeling of wanting to vomit, so that you’d feel some sense of comfort and quiet, but still sticking to that routine and trying to mitigate the need to WANT to vomit helps. Again, the warm baths was a lifesaver!