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Reply with quote  #1 
Hi everyone! I wanted to share my story in hopes that someone will read it and be helped by it. I also thought it might get people talking about what works for them. I know when I was researching CVS, it really helped me to find out what was working for people and new treatments that were successful. Sadly, since many doctors don't acknowledge or know much about CVS, medical information is fairly scarce. Here's my story:

As a child, I suffered from migraines that were debilitating. They were accompanied by nausea and usually vomiting. I managed to learn my triggers, and if I took medication early enough, they were not as severe. I also got motion sickness very easily and had several embarrassing vomiting incidents on back-road car rides and county fair rides.

I struggled with nausea off and on all through my 20's. The nausea would be so severe I usually threw up. If I didn't throw up, it was equally terrible dealing with unrelenting nausea. I started waking up in the middle of the night (usually around 1 am ) with nausea that almost always caused vomiting. I tried tracking my foods to see if there was a correlation, but that wasn't it. I tried sitting up in bed at night, thinking maybe I was having acid reflux, but that only helped stop the severity at times.

It wasn't until my 30's that it really began disrupting my life. Waking up at 1 am or 2 am with extreme bouts of nausea and vomiting was becoming a regular occurrence. Out of seven nights, I was nauseated (and usually vomiting) at least four of the nights. My primary care doctor referred me to a gastroenterologist. He could not find any kind of correlation between the foods I was eating and the symptoms I was having. He also thought it was odd that it always happened around the same time of day/night. He began ordering blood tests, abdominal ultrasounds, gallbladder ultrasounds, gastric emptying studies, and endoscopies. Everything kept coming back normal. I had been doing some research on my own and asked my gastro doctor about CVS. He said "Well you better hope it isn't that because you can't do anything to treat that." He summed it up to GERD and prescribed me omeprazole to be taken daily and zofran to be taken as needed.

Time went by, it seemed like the omeprazole and zofran helped to some degree. The zofran would take away queasiness and could sometimes thwart the vomiting. There was no progress being made with the help of my gastro doctor, just more tests. At one point we thought maybe probiotics were the key. But that also didn't pan out after trying them for several months.

I didn't experience my first true CVS attack until I was 32. I was on a trip with my wife and we were staying at a hotel. I was woken up at 1:30 am with sudden nausea. The vomiting happened, but there was no relief whatsoever. Every five minutes or so, I had to vomit again. The zofran had no effect. Soon it was only pure bile coming up. It burned horribly and I couldn't understand how my stomach could be producing so much bile. My wife was trying to figure out what to do to help me and was asking me if we should go to the hospital. She was looking up what to do on the phone and suggested I take an ativan (a prescription I had that was hardly ever used). I put one under my tongue and threw up a few more times. Within an hour, I had a total of 20-25 bouts of vomiting and retching before it stopped. I was exhausted, my stomach and abdomen felt like I had been punched a hundred times, and my throat sounded like I had a terrible sore throat. It was the worst experience of my entire life.

I immediately made an appointment with my gastro doctor. He agreed I probably had CVS, but said it was so rare there was nothing we could do about it. He said it was probably just a mental thing and that I was "making myself throw up". That's when he did the second endoscopy (because he had forgot the biopsies the first time). Of course, everything came back normal except I had a "J-Shaped stomach" and some erosion in my esophagus from the vomiting.

Three months later, it happened again. Same time of night, same extreme symptoms of throwing up 20-25 times within an hour. Like the first time, it took a couple days to recover. It was like I had been beaten up and ran over by a car (and was recovering from the stomach flu).  I told my doctor, but nothing was done. A few months later, it happened a third time. I gathered as much information about CVS treatments as I could. I printed off all the info and brought it and my wife to an appointment with the doctor. He again agreed it was CVS, but said nothing could be done. I showed him the different treatments that were having some success, but he dismissed them. My wife testified to the attacks and how extreme they were and that there was no way that I was somehow "making myself throw up" as he had suggested. I told him they were so awful that I literally wanted to die when they happened. With tears in my eyes, I pleaded with him to at least try one of the medications that had been successful for some people.

He eventually agreed to try a low dose of Amitriptyline. I didn't have high hopes that it would work, but at least I had some hope. It was to be taken once daily and taken at night (because one side effect is drowsiness). One year later, I have not had an attack nor have I hardly had to take any zofran. I'm 34 now and I am so grateful that I am not feeling nausea nearly every day of my life. I've thrown up for more than ten lifetime's worth and now I'm not getting sick anymore. I am thankful beyond what words can describe.

I know this medication is not the answer for everyone. My hope is that someone going through what I did will read this and it will be the answer for them or they will have renewed hope for a cure. I know the suffering CVS can cause and it is something nobody can understand unless you've been through it. I live in a smaller city, with only one gastroenterology office to choose from. The frustration of going to doctors that don't believe you or don't even try to figure out why all your tests are coming back normal when you're obviously sick is something I don't wish on anyone. But it happens all to frequently. If people don't know they have CVS and doctors aren't diagnosing and sharing more information on treatments with each other and the public, then nothing will change and people will keep suffering. My doctor will not do anything with my situation to help others, so I'm reaching out on my own in hopes that at least one person can be helped. If you're suffering with this disease and you can't get any assistance from your doctor, then my heart is with you and don't give up. Do your research and seek out a doctor that is more knowledgeable in CVS (hard to find, but bigger cities have more doctors familiar with rarer diseases). Amitriptyline worked for me and may not for you, but the point is that there are treatments that work and doctors are learning more about CVS daily. There is hope! Don't give up and please reach out until you find a treatment that works for you. We need to share our pains and successes so others can benefit. Thank you for reading this and although I may not know you personally, I truly do care and hope you can overcome this awful disease.



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Reply with quote  #2 
Thank you for sharing. 

It does seem to be the same with people and their Journey.. Taking the info to the doctor, and the doctors not knowing much about it. We ketp changing doctors. We pushed the info and options for getting info (through CVSA) so much that at the hospital we go to now, even the nurses know what it is. No one had heard of it when we were first going there. Now, there are 2 doctor on the list and several more wanting to get on the list. We went through GI's and pediatricians and finally ended up with a Neurologist. It is quite a journey. Thank you for sharing.

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Reply with quote  #3 
Thank you for sharing your story.  I am so happy to read about your success!    I hope things continue to go well for you.  

ginny CVSA Moderator
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