Ten Years of Misdiagnosis
I have CVS. No, I don’t own the pharmacy, but Cyclic Vomiting Syndrome (CVS). Imagine a scenario where sudden episodes of intense vomiting occur regularly, leaving both sufferers and their loved ones bewildered and distressed. This is the reality for individuals living with CVS, a rare but debilitating disorder that is poorly understood and difficult to manage.
I experienced my first episode while living in Denver, Colorado, and the doctors initially diagnosed it as cannabis hyperemesis syndrome. It's worth noting that I had used marijuana before moving to Denver without experiencing these symptoms. Chronic marijuana use is linked to CVS because some individuals use it to alleviate nausea. However, long-term use of marijuana can result in a condition known as cannabis hyperemesis syndrome, characterized by persistent vomiting. This syndrome can be mistaken for CVS. To rule out cannabis hyperemesis syndrome, it's recommended to discontinue marijuana use for one to two weeks to observe if the vomiting subsides. If not, it is essential to have a trusted advocate when discussing CVS with the doctor.
Over a decade passed before I was finally diagnosed with CVS. The process was incredibly challenging and took ten years to navigate. One of the primary reasons for the delay in diagnosis is the fact that CVS symptoms can closely resemble those of other gastrointestinal disorders, making it difficult for doctors to differentiate. Additionally, the absence of specific lab tests or imaging to definitively confirm CVS means that the diagnosis heavily relies on a detailed clinical history and the meticulous exclusion of other potential conditions. Furthermore, there is often an association between CVS and migraines, with many individuals, myself included, experiencing both conditions concurrently. This overlap can further complicate the diagnostic process, potentially prolonging the time it takes to pinpoint CVS as the root cause of the symptoms.
Managing CVS focuses on alleviating symptoms and preventing future episodes. Acute treatment includes IV fluids and anti-nausea medications, which are often required during severe episodes to manage dehydration and other symptoms. There are some preventative measures, such as identifying and avoiding triggers, stress management techniques, and medications used for migraines (like amitriptyline or propranolol), that may help reduce the frequency and severity of episodes. Lifestyle adjustments like ensuring a regular sleep schedule, maintaining a balanced diet, and reducing stress can also play a significant role in managing CVS. My primary care physician prescribed me amitriptyline, but I’ve only been on it for four days, and the medication can take up to one month to go into full effect. I’ll let all of you know how it goes in about 26 days.
Living with a chronic condition like CVS can be challenging, to say the least. Learning about the condition and connecting with support groups, like the Cyclic Vomiting Syndrome Association (CVSA), provides valuable information and emotional support. Furthermore, building a team of healthcare providers who understand CVS is crucial for effective management and support. Also, despite the challenges, many individuals with CVS can achieve a good quality of life with proper management.
Research into CVS is ongoing, aiming to uncover its underlying mechanisms and develop more targeted treatments. Collaborative efforts between patients, healthcare providers, and researchers are essential to improve diagnosis, treatment options, and, ultimately, the quality of life for those affected by this enigmatic syndrome. Cyclic Vomiting Syndrome remains a complex and often misunderstood condition that significantly impacts the lives of those affected. By increasing awareness, promoting research, and enhancing support networks, we can work towards better understanding and managing CVS. For individuals living with CVS, hope lies in ongoing research advancements and the supportive community rallying behind them.
As we continue to unravel the mysteries of CVS, let us foster compassion and empathy for those navigating its challenges, striving towards a future where effective treatments and, eventually, a cure may one day be within reach.
I’ll keep you all posted through my journey with CVS.