Erin

Starting in 2008, when I was at Union College, I was throwing up more than normal people — probably every couple of months. I would wake up at about 2 a.m. to puke and would be sick for 16 hours. I always thought it was because of drinking, even though I actually hardly drank at school. When people would just say, “Ugh, I’m hungover, I need a coffee, brunch, and an Advil,” I would think that sounded unbelievable. That’s probably when it started, but I didn’t notice [something was wrong] until my first year of graduate school, and the beginning of my second semester. I was so sick.

At this point, I was throwing up every day, multiple times a day, for two or three months. It was horrible. Then it mellowed out and ended up being once or twice a week, but at the end of my first year of graduate school, I took three months off for medical leave.

To be honest, I was discreet at first [with my family]. I figured it was food poisoning or stress or a sensitive stomach. My father’s a physician and mother is an RN, so when I had these symptoms, my father would call a gastroenterologist he knew and they would tell him how to treat me — but that didn’t work either. My mom would drive 45 minutes to give me a shot at 3 in the morning and she’d come clean my apartment if I couldn’t. When it got really bad, [my parents were] extremely motivated to identify a doctor, acquire a diagnosis, and develop a treatment regimen. We talk a lot about my condition in my family. It helps having a doctor, nurse, and soon-to-be-doctor [my brother] in the family, and it’s funny how they transition from family mode to physician mode; a simple “How have you been feeling recently?” turns into a bunch of clinical questions.

I was going to all kinds of doctors. They found out that I have low immunoglobulin levels, which suggested an immune deficiency. I saw an immunologist, but he didn’t really [have the] answer. I went to a psychiatrist to see if it was something that was related to mental health and they ruled that out, but I thought I was having a mental breakdown. I’m in a PhD program, it’s really high stress, and I couldn’t figure out why I was throwing up all the time.

Then one day, my twin brother who is in medical school sent me an email with just a link to a website on cyclic vomiting syndrome and he’s like, “I think this might be exactly what you have. It seems to fit your symptoms.” I actually have never asked [exactly how he found the link]. My brother is super intelligent and a thorough worker, so I’m sure he just came across it during class. He forwarded it to my parents, and they were able to find me a GI specialist in Los Angeles and then a cyclic vomiting syndrome specialist in Texas. I met with him and was diagnosed.

How it works with cyclic vomiting syndrome is patients have what are known as “stereotypical episodes.” My episodes are almost exactly the same every time — I wake up at about 2 a.m. and I start vomiting. It’s incredibly violent and very painful. This is serious retching. After the first hour, I stop throwing up solids or fluids and move to bile. I’ll drink Gatorade eventually because it becomes so painful to just puke bile. So I’ll just drink and throw up, drink and throw up. I vomit every five minutes until I’m medicated.

As far as treatment goes, it depends. Every day, I take amitriptyline and CoQ10, which work to prevent episodes

I live about 45 minutes from my parents and if they’re around when I’m having an episode, they will drive to me. My boyfriend James, who I’ve been with since October 2015 and live with, will help, but if he’s not around, my parents will give me a shot of promethazine. My boyfriend is really helpful because he’ll give me shots of ondansetron when I get too sick. He’s a former Marine, so he is pretty tough — he has cleaned up all types of bodily fluids.

I also really hate needles, so if James or my parents aren’t around, I’m sometimes forced to take suppositories which are rectally inserted, but unfortunately when you’re puking, it’s just not always possible. Very occasionally, I’ll have episodes in the middle of the day and I have about a two- to three-minute window when I know it’s going to start — I’ll get really pale, salivate a lot, and start shaking — and I can take my pills [Ativan and dissolvable Zofran] to try to stop it, but I’ve never been able to abort an episode.

In 2015 though, I had an episode in Colorado and I had to go to the hospital. It was maybe five hours before I was able to get medication and I puked about 12 times an hour during that time. I actually had to call an Uber to take me to the hospital because I was passing out from dehydration by that point, I was mainly retching with a small amount of bile, so it stopped getting messy, so when the Uber arrived around 5:30, I called him to explain my condition and ask if he was willing to transport me. He was compassionate and understanding; he helped me into the car and into the hospital. He kept trying to distract me by telling stories of college students he’s driven from CU, and it was a nice gesture, but I couldn’t stop retching into the bag. Not my greatest moment.

In the last year of grad school, I had another three months where I was puking almost every single day. By this point, I had missed weddings, family functions, parties, events and exams because I was so sick. Before I was diagnosed, I felt bad too. I was a TA and had to have my colleagues cover for me and you know how it gets in school — I would bail on my friends a lot and I was a flaky person to begin with. It was difficult for my friends to believe me. It really is an unbelievable condition. It sounds like you’re making stuff up! But a bunch of my very close friends had seen an episode at some point.

I started crying at the appointment I was diagnosed because the doctor told us twice that this was a debilitating condition — especially before you start treating it — but that it was not terminal. I feel very fortunate that there’s no long-term prognosis that I should be concerned about, but it’s really made it difficult to function. It is incredible it took so long to receive a diagnosis because it seems so obvious now, but I think that’s typical of cyclic vomiting syndrome patients. It’s a diagnosis of exclusion, so it takes a lot of work to narrow down the conditions.

Having a physician tell me, “This is a neurologic condition with these treatment options,” made me feel unburdened. I was and am really into school, and this has really impeded my ability to be a good student and in the future be effective in my field. And I took a lot of that sense of failure onto myself. I don’t think I gave myself adequate room to heal, so having this big physician at this big hospital tell me that it was OK helped a lot.

I keep a diary so I can track my episodes: what they felt like, when they happen, how long they lasted, what meds I took, etc., and I’m trying to identify triggers. I haven’t noticed any patterns with triggers of episodes, but I’m always stressed out and a lot of people report stress — either happy or sad— is a trigger. The main thing I’ve noticed is that I need to make sure I get sleep. If I try to pull an all-nighter, I will definitely be sick. Also, my period. I get sick almost always around menstruation. I’ve been told it can take up to six months for the amitriptyline and CoQ10 to officially work, but I think it’s getting better.

I guess it’s the same with all invisible illnesses: You can’t always explain to people what’s going on, especially when you’re so sick. I want people who have friends with a condition like mine to know that we really appreciate all the help. It’s gross. It’s a really disgusting condition! It’s hard to get that gratitude across when you’re sick, but I don’t think I’d be able to function right now without my parents, my brother, my boyfriend, and my friends. Having them is a huge comfort that I know I’m privileged to have. Without my parents and brother, the months leading up to and following the diagnosis would have been much more difficult.

What’s amazing is that I feel totally fine when I’m not symptomatic. You have to laugh about it when you’re feeling good, ’cause otherwise it’s impossible to just live.

Ella

My first CVS episode came in 2004, when I was 15 years old, while I was working on a farm for the summer.

In the following years, episodes came at 6 month intervals, like clockwork. They lasted for 5-8 weeks at a time. And every time I ended up in the hospital with IVs in my arm and neck from dehydration. Doctors did all imaginable tests, which revealed nothing. Not a single doctor belived what I said. They all thought I was either pregnant or looking to score drugs.

I woke up one night in intense pain and started vomiting my guts out for no apparent reason. I thought I had food poisoning. Thankfully, I wasn’t alone in the middle of nowhere, and a coworker took me to the nearest healthcare center – an hour drive away – the next morning. The doctor took one look at me and decided I must have been taking drugs the night before. They kicked me out.

While I was working at a children’s clothing store, my boss never belived there was anything wrong with me – she was sure I was just lazy. Every time I had an episode and called in sick I was yelled at, and I had no choice but to show up to work sick as a dog. Sometimes I was the only employee taking care of the store, and I was lucky if I had a break to run to the bathroom. In January of 2011, I had a nervous breakdown at work. It put me in the hospital, followed by pschyciatric care for a while. In March 2011, I finally quit my job.

It wasn’t until 2012 that I was finally diagnosed with CVS and received the proper treatment. I managed to shorten the episodes to 4-12 days, but they became more random. The shortest period between episodes was 7 days, and the longest was about a year. I’m now on disability and have a close-knit group of doctors who know how this nasty disease works. They are more than willing to help me. After receiving the correct treatment and support, I can proudly say I haven’t had an episode in over 16 months! Sadly, I’m always expecting one, and I keep a plastic bag in my purse just in case. The right combination of medications help both with aborting episodes and shortening them. I’ve lost a job, many years, and special occasions in my life, and a bunch of friends and family members, but I’ve gained a community that helps each other out. I will keep spreading awareness in the hopes of helping others.

Every day I thank my mom for all her help and support and all the time she took off work just to get me on my feet again. She never doubted my sickness.

 

Julia

Hello/Moi ?

I’m a cyclic vomiting syndrome warrior from Finland. I’ve been sick since 2015.

At first I thought it was my thyroid acting up again, like it had some months before… but it was fine. I went to our small local hospital a few times. They said everything was fine.

I turned to my friend google and diagnosed myself. I could no longer hold down hot liquids, so I was admitted to a hospital. I was in for a week, during which I was accused of having
an eating disorder or some other psychological reason for my vomiting. At this point
I puked and was nauseous every day, with only a few “good” days here and there. I had a few intense episodes that lasted for a few days. Some people can vomit up to 50 times per hour, and episodes can last from hours to weeks.

I had to temporarily move back in with my parents and leave the city where I was going to uni. It turns out I was never able to go back. Not only had I lost my health, but had I lost my education and the possibility of a career. I also lost the possibility of someday starting my own family. I couldn’t even look after myself most of the time, let alone take care of a child. I’ve always wanted my own dog, but I knew I would even have to get help with that, as I could never afford the vet payments without a steady job.

I was admitted to a bigger hospital the next time. They did all the “ruling out” testing, but I didn’t get a diagnosis from there. Instead, they were happy to send me to a psych ward (voluntarily) as the next step of their “ruling out” process. I only did that so they couldn’t hold it against me in the future. “You look depressed,” they said. Well, I don’t think I’m supposed to look like a happy Miss Universe after puking for months!

I finally got my diagnosis from a private clinic, by a neurologist who had treated a few CVS patients. Unfortunately, I didn’t have luck with meds. When I was admitted doctors refused to try one nausea medication because I didn’t have cancer.

Fast forward to today day. I have found one abortive medication that works fairly well, but it’s really expensive, so I can’t afford to use it often. I have had a few longer breaks of being more stable and having milder symptoms. I’m never completely symptom free, though. And I have other health issues as well, so it seems life is making sure I’m not enjoying it too much.

Something else on list of the things I’ve lost are some friends. Not everyone wants to deal with someone who has a chronic illness, even if they don’t have to do anything more than before. I’m still the same person behind this broken body. I have gained some new friends from my amazing CVS family. These people are the strongest and kindest people I know, and most importantly know exactly what I go through. I want to thank all of them for their love, support and understanding. I’ve also gotten some purpose back in my life. I help others who are sick and I am an advocate and specialist for myself and others my own and others. Mind you doctors hate when you know more than them… ?

And remember, just keep swimming. Xx

Therese

I’m the contact-person in Sweden for CVSA and on the board for CVSA Nordic.

My son Elias has CVS plus. He has had problems with nausea and vomiting since infancy, but became seriously ill when he was just over one year old. For several years, we practically lived at the hospital. On more than one occasion it was unclear if he would survive. The time between the vomit attacks was very short. At their worst, the vomit attacks would last up to two weeks and restart all over again after just a few days. During these periods he threw up approximately 100 times per day, sometimes even more. The medical team was perplexed and could not make a diagnosis. It didn’t help that Elias has autism, is developmentally disabled, and has epilepsy.

When he was 5 years old, one of Elias´s doctors contacted neurologists in the United States, and could, with their aid, determine the diagnosis of CVS Plus.

What seemed like endless treatments with different medications followed. None of them seemed to have any effect. It wasn’t until Elias was given the drug Clonidine that a noticeable effect could be seen. Clonidine was given to him as a sedative prior to a medical test during one Elias´s relapses. The vomiting stopped.

It is my estimation that Clonidine stops the vomit attacks within a day in 8 cases out of 10.

Elias was also given Trimeprazine, which helps against nausea and motion sickness. Now that he is taking Trimeprazine every evening as a preventive, the vomiting attacks almost only seems to occur in conjunction with severe infections.

Now it is much better. CVS is hell but you can find medications which help. I’m glad we did.

Nina

My name is Nina, and I started having CVS in 2005, when I was 32 years old. It would take many years before I was diagnosed. I am a single mom to a daughter born in 2006, and it was during that pregnancy that I first got sick. I am now 100% disabled by migraines and CVS.

When it first started, I had attacks of violent vomiting, often 6 times per hour, diarrhea and horrendous abdominal pain. The episodes were completely disabling, and lasted for about 12 hours. I would get these attacks about once a week. I was completely exhausted during these attacks, and after a while, the fatigue prevails. I was bedridden for about 18 hours per day during periods with lots of attacks.

When I first started having the attacks, they would come weekly. This lasted for about 2 ½ years, then suddenly stopped. It would still take 3 months before the fatigue got better.

Since then, I’ve learned that for me, CVS alternates between being active and in remission. A remission can last from between 3 months to 10 months – which has been the longest so far. The active periods lasts between 3 months and 2 ½ years.

It took 6 years before I was referred to a neurologist at the university hospital I Akershus, Norway. Before that, I had been told by multiple general practitioners, “You know we can’t help you,” and, “You have to realize that medical science doesn’t have an answer for everything.” But I knew that even though I was finally able to be seen by someone in secondary care service, it didn’t mean that had I met a doctor who was familiar with CVS. It was collaborative effort between the neurologist, Dr. Google, and myself that led to the conclusion that I suffer from Cyclic Vomiting Syndrome.

The doctor had never heard of CVS before, and had definitely not treated any patients with it. I had to sit in the driver’s seat and read everything I could on the subject. I contacted the Cyclic Vomiting Syndrome Association in the USA to get information on my condition. Luckily, both the neurologist and my primary care doctor were willing to read the information and let me try the treatment described there.

I’ve ended up with a cocktail of medications:

For nausea and vomiting I take Ondansetron (Zofran), but twice the dosage of what a chemo-patient needs. Sometimes, during bad attacks, I need to combine this with Emend.

For abdominal pain, I take a combination of diclofenac (Voltaren) and Tramadol.

For diarrhea, I take Immodium.

It takes a while before the medication works, and the only way I can prevent myself from vomiting them up is to lie flat on my back in the shower with very warm water running over my belly. The water is so hot that I often have massive blood-lesions afterwards, and I cannot cope with having that warm water when not in an episode. But during an episode I need it as hot as possible. The fact that I basically lived in my shower during my episodes was one of the reasons I was so sure I had the right diagnosis. Compulsive bathing behavior is a symptom of CVS, and I think we all dream of having a bed in the shower.

Like many other CVS patients, I also have migraines and gastroparesis. In fact, CVS is thought to be a variation of migraine. Gastroparesis is so common in patients with CVS that there has been speculation that one might cause the other. There is a high prevalence of gastroparesis within patients who suffer from migraines as well, so there is a good chance that there is a connection here. What they do know for sure is that both migraines and gastroparesis are comorbid diagnosis to CVS.

I am what is called a “calendar-kid” among CVS-warriors. Many CVS-patients have triggers that set of their episodes. I don’t. I have it without fail every 7-10 days, unless I am in remission.

I am quite lucky, I have found some prophylactic medication that works for me. I get good results from what is called “The mito-cocktail,” that is: L-Carnitine, coenzyme Q10 and Amitriptyline. By taking this daily, with no exception, my CVS is almost in remission. I have tried cutting down on these meds a few times, but that always brings on new attacks. I’m not 100% symptom free on medications, but I don’t throw up anymore and the pain is easier to deal with. Fatigue is still an issue. I’ve been taking this cocktail for a few of years now, and though it isn’t as effective as it was in the beginning, it still reduces the impact from CVS by at least 90%.

I do notice that on days when I normally would have had a CVS attack, my gastroparesis flares up, and I have many more migraines when I’m not in remission. My CVS is just being held down by medication.

I have chosen to be listed as Norwegian contact person for CVSA USA, as well as sitting on the board of CVSA Nodic, because I want to use my time helping others with CVS. There is so little information on CVS in Norway, so I figured we need a place to come together and help each other. I contacted the other Nordic contact persons for CVSA USA, and they were willing to start CVSA Nordic with me. If anything good comes out of having CVS, it must be that I am now in a position where I can help others.