CVS Is Not Just A Pharmacy

When people hear C-V-S, they first thing they think of is the pharmacy and convenience store with the same namesake.  They certainly don't think of the illness that robbed me of my good health, thus, changing the course of my life forever.  The acronym, CVS, stands for the functional disorder called Cyclic Vomiting Syndrome (CVS), which is characterized by recurring attacks of uncontrollable vomiting, relentless nausea, and excruciating abdominal pain.  Some other symptoms include: sensitivity to light, noise, and sound, lethargy, profuse sweating, and hyper salivation.

There are a number of things that can trigger an episode.  Some triggers include both positive and negative stress.  In fact, I can’t tell you how many times I became ill and ruined celebrations because I got excited or elated over an upcoming vacation or birthday.  Another trigger is hormonal changes, which is one trigger I can’t escape from because it is beyond my control.  With that said, I get sick ever month around the time I ovulate and when I am menstruating.  Other triggers include: food allergies, colds, infections, anxiety and panic attacks, motion sickness, sinus problems, physical exhaustion, eating too much or too little, and a drastic change in barometric pressure.   

Vomiting during a CVS episode can be so severe that I can vomit uncontrollably up to five times an hour for a period of minutes, hours, days, or even months. When I have nothing else left to vomit, I will start dry heaving and chucking up clots of blood from the forceful vomiting.  If you ask CVS sufferers about their vomiting, they will always tell you that the dry heaving is much worse than the vomiting. To avoid that, most CVS sufferers will drink fluids so that they can vomit the fluids instead of dry heaving.  I do this as well because I can’t manage the pain of dry heaving on top of the stomach pain I have already.  It is less taxing on my body if I vomited the juice I just drank instead of dry heaving.  Furthermore, CVS sufferers will also tell you that they sometimes make themselves vomit so that it wouldn’t be so forceful and painful.  This behavior though should not be confused with the eating disorder, bulimia.  It is just a means for us to lessen the intensity of vomiting.  

In addition, the pain involved during an episode can be so excruciating that even the strongest painkiller won’t adequately treat the pain and normal activities, such as talking and walking, become difficult to manage. The pain is so agonizing that some people with CVS have no other choice but to be sedated throughout the episode so that they can escape the intense misery that CVS brings.  For me, the pain from CVS is more excruciating than the pain I experienced when I was in labor.  It’s the type of pain that no one should have to experience.

Even though Samuel Gee discovered this disorder back in 1882, it is still unknown to most of the medical world.  In fact, every time I go to see a new doctor and tell them my diagnosis of CVS, they almost always tell me that they never heard of it. For the past fifteen years, I can honestly say that it is rare to meet a doctor who is knowledgeable about CVS.  With that said, most of my doctor visits seem meaningless, because I usually spend my visit educating the doctor about my illness while I get nothing in return. 

However, there are some overzealous doctors that are fascinated by this obscure disorder that they take me on as a patient just to treat me like a lab rat. They end up trying all types of pharmaceutical therapies to see if it may help manage my CVS.  The sad thing is that when they have exhausted all their options and I show no improvements, they end up losing interest in me and become inaccessible. Consequently, they end up discharging me as their patient, and pass me along to another doctor who will most likely do the same thing, and this hopping around from doctor to doctor becomes a vicious cycle.

While I have episodes every two and a half weeks, I still can’t get used to the intense misery.  One of the worse things about this illness is that it can rear its ugly head at anytime.  Actually, one time when I was returning home from work with my colleague, I started to feel the pain creeping, and the more we drove, the more my nausea worsened.  Then, the symptoms progressed so fast that I had to stop on the highway and ask my colleague to call the ambulance to take me to the hospital.  My episodes get so bad that sometimes I think it would be better if I died because at least I won’t have to suffer. Unfortunately, almost all of my episodes land me in the ER, where I am often met with disbelief and abuse. 

Some doctors in the ER never heard of CVS so they don’t know what to do, so they test me for all sorts of unnecessary things which delays treatment, and there is another set of doctors that don’t even believe in CVS.  These doctors are famous for putting sufferers through hell because they believe that it is all in our heads and would rather not treat us for our symptoms.  They get annoyed with seeing us over and over again with the same complaint.  Also, there are doctors that are abusive because they assume that you are a drug seeker looking for a way to get high.  These are the worse type of doctors to encounter because their actions and language can be extremely traumatizing. They refuse to test you for anything because they only think you are looking for a fix and refuse to treat your symptoms with narcotics.  Lastly, there are doctors that know about the illness and do their best at treating you promptly so that your symptoms don’t worsened.  Finding doctors that know about this disorder, though, is like finding a needle in a haystack. 

Because I am so used to going to the hospital, everything now is second nature to me. I know exactly what to expect.  I would wait for hours in misery in the waiting room of the ER, and at some point, they would call me in to the back where the rooms were located.  There, I had to wait again for the doctor to come. The doctor would come and assess the situation and order the medications that will make me better.  Then, the nurse would come and access my port-a-cath, pump me up with IV fluids, and give me medication for the nausea and pain.  They would continue to give me extra doses if I didn’t respond to the medications.  Once I started feeling better, they would give me something to eat and drink to make sure that I truly aborted the episode.  After that, they would discharge me.  If it were a severe episode, they would admit me and observe me for a few days where I was treated around the clock with medication until I recovered. 

I would go to the hospital so frequently that I joke around with family and friends and tell them that the hospital is my home away from home. Everyone in the ER knows who I am although I wish that were not the case.  I didn’t want to be in the hospital that much, but I have no choice.  It is as if I am a prisoner in my own body because now CVS controls my life.  

In conclusion, CVS is something I would never wish on anyone, not even my worse enemy.  It takes over your life, thus, robbing you of all your dreams and aspirations.  When I got diagnosed, I was so happy that they finally found what was making me so sick, but that elation was only short lived because the doctor continued to tell me that this is a chronic illness that I might have for the rest of my life.  I couldn’t imagine continue going through periods of intense misery over and over again, but CVS was here to stay and I had to accept that. Therefore, I had to learn how to cope with my new life.  So the next time you hear CVS, just know that it is not only the name of a pharmacy, but also a devastating disorder that changed my life forever.