Today’s Question of The Day is What is CVS ? A.K.A Cyclical ( Cyclic ) Vomiting Syndrome.
I Get Ask This Question Daily . Starr is HG actually CVS ?
Starr I had Hyperemesis Gravidarum (HG) while pregnant . I read that you know about the two and how they are the same like a sisterhood disease. I’m still sick but I heard you get CVS too in the aftermath?
Every time my period comes I get hit with HG symptoms. It is just like HG. I’m overwhelmed please help explain what CVS is and how you say the word Cyclic does this mean cycle like a period or bike ? Sorry for the stupid questions but your the only one I know of that can answer these questions to educate and not belittle me for not knowing 😉
My family thinks I am going to die …..
~ Anonymously Crazy
What a great question! I get asked this daily .
I have had CVS since I was younger it was triggered from my periods it was so bad, I would end up every month in the hospital due to dehydration it was bad and no one understood me .
I didn’t know for a very long time that it was CVS. Intractable nausea and vomiting they call it in medical terms .
I had my gallbladder removed when I was 22 because they were not sure that was the reasoning why I had intractable nausea and vomiting , sadly just made everything worse .
WHAT IS CVS ?
CVS stands for Cyclic Vomiting Syndrome . Most that don’t suffer or don’t know how to pronounce it. Many suffers will call it cycle but that what Cyclic means . To pronounce it the best way I remember that stuck in my head of a CVS sister Coleen Rice that wrote a book on CVS . I love her , it was the first CVS book I read , before she started CVS Speaks.
I was so happy when I found her book it kept me sane . Rare but not alone you can get on Amazon.
I enjoyed her book , it’s a good book to know your not alone . It has been many years since I read it however a part in her book has happened to myself trying to explain to a nurse how to say it.
If your trying to teach someone how to say the word Cyclic ( Sike Lic ) you would think 🤔 Is this how you say it ? NOPE !!The C is silent! Like physh lick . Some people will say SICK LICK , I had many nurses do this to me saying your sick and you licked what that led to vomiting . Insert eye roll 🙄 here . Tomato tomatoe however try to say it correctly . Otherwise you may get punched in the face .
Cyclic Vomiting Syndrome, also referred to as CVS in short , is an severe nausea and vomiting disorder with sudden, repeated attacks—also called episodes—of severe debilitating nausea, vomiting, and physical exhaustion that occur with no apparent cause. Many CVSer fall into a conscious coma where they can not speak just lay there still and only enough strength to vomit. These episodes can last from a few hours to several days or months at a time or longer! Episodes can be so severe that a person has to stay in bed for days, unable to go to school or work or care for their children let alone themselves . A person with CVS and this can be women, men ,boys or girls including children as CVS doesn’t discriminate .
CVS can get bad , real bad and if you or someone’s out know and love have a attack that won’t stop , you should seek treatment at an ER or a hospital during episodes if they can not abort it in what I call the
“Golden Window of time”
The golden window is a short period that the suffers has to get medicine to abort the attack ASAP. Everyone is different in what works to abort their attacks may not help you as we are all different.
After having HG during my pregnancy my abortive medications changed. I had to have Zofran shot by I.M. Injection which is a muscle injection of the medication to try to prevent me having to go in for IV hydration and IV medication to stop the nausea and vomiting . Others have only pills like Zofran , Ativan, Imtrex pills or injections can sometimes abort an attack . For many of us we don’t want to go to the ER because we are patient profiled. What are we profiled as ?
A drug seeker and not taking seriously about our symptoms. For myself and countless others with CVS get extreme stomach pain in the upper part of our stomach that can leave the sufferer curl into a ball on the floor . Because for this we need pain medication at times and very sadly someone with CVS are often labeled as just wanting drugs and a frequent flyer . Yes the ER will flag you , I have seen it , experience it , and watched this young mom be told as she lied in room 11 crying. I walked in and said sweetie I believe you here is my business card for my organization, I’m here reach out .
You may not here them say it to your face , however you are in their eyes. When I was in the ER for my daughter for 13 days ( yes 13 days in a little ER room 8 will haunt me for life , it was a nightmare for my six year old and us to be locked in a prison , (another story another time ) you will hear people talking about how bad they are treated in an ER with CVS , my daughter was resting and I was walking to the bathroom and this nurse is trying to chase the doctor down to ask for medication consent and I actually heard and saw with my own eyes the doctor say “she faking the vomiting and pain” she was just here a few days ago . “I will not give her pain medication, discharge her NOW!” She a junkie get her out of here . My heart sank because I been there I had to go to her room and say “I believe you”
I wanted to see if this person had CVS or Gastroparesis. Pain is part of what makes CVS unbearable because on top of the nausea it’s so bad you can’t eat or drink. Some with CVS experiences symptom-free periods lasting a few days , weeks to several months depends on the CVS sufferer . To people who have the disorder, as well as their family members and friends, cyclic vomiting syndrome can be disruptive and frightening.
Intensity of symptoms will vary as a person cycles through four distinct phases of an episode: Below are the phases they may vary from person to person but usually go in this order ! HOWEVER , NOT ALL CVS SUFFERER HAVE CYCLES THEY CAN BE IN A CONSENT ONGOING CYCLE THAT WONT END! Any doctor tells you otherwise they don’t know what the hell they are talking about . Chronic nausea that is debilitating and consumes you .
For the sufferer , depending when and how your body triggers CVS your symptoms can vary and change over time :
This is a real problem , CVS doesn’t have a one size fit all diagnosis. if you have CVS and know it but because you really haven’t felt well the doctor will say it’s not CVS and making the suffer feel lost crazy and no valuation. Not all , but many CVSer that have CVS do have Gastroparesis that can makes it more likely of being ” Stuck in a cycle “
I personally like to say attack or episode I don’t like saying cycle even though that what it is. I have some CVS brothers that will not say cycle because they been look at as crazy at the hospital and made fun of being on there man period but it’s not a laughing matter.
If you had semi text book CVS that come and go they usuallly go like this but vary……
Prodrome phase. <<<<<<<<<<<<<<
The first phase, the person feels that an episode of nausea and vomiting is about to start. Often marked by intense sweating and nausea—with or without abdominal pain—this phase can last from a few minutes to several hours or longer. The person may appear unusually pale.
It can go from just nausea then hit hard into the vomiting in a blink of a eye!
Vomiting phase. <<<<<<<<<<<<<<
Intense nausea, vomiting, and retching and pain. Periods of vomiting and retching can last 20 to 30 minutes at a time or longer. For myself when it bad it’s just non stop and I can not speak or move and I lay on my side with my face in my bucket! The person may be subdued and responsive, immobile and unresponsive, or writhing and moaning with intense abdominal pain. An episode can last from hours to days.
Recovery phase. <<<<<<<<<<<<<<
When the vomiting and retching stop and the nausea subsides. Improvement of symptoms during the recovery phase can vary. Healthy color, appetite, and energy return gradually or right away.
When no symptoms are present . CVS is a disorder that can affect a person for months, years, or decades or forever. Each episode of cyclic vomiting syndrome is usually similar to previous ones, meaning that episodes tend to start at the same time of day, last the same length of time, and occur with the same symptoms and level of intensity however this can change . Sometimes a CVS sufferer can get stuck in a cycle that is just daily with only short breaks then the nausea and vomiting come back. I hate the smell of food.
If I smell food it will make me deadly sick just from the smell . I have a very high level of being able to smell anything , I hate it ! CVS before HG was different for me ! Once I was well I could eat and drink and smell food and it was okay . Sadly this has changed as I use to be able to drink so much water in one day and now I hardly can or I vomit it all back up ! I do IV hydration at home and meds in my picc line so I don’t have to be away from my little one . Being on home health care been a saving grace .
A CVSer they can be sick daily as in ongoing and doctors will “claim” this can not be CVS if you have no break , this is false ! Most cvs suffers have Gastroparesis on top of CVS so it mask the two illnesses into one and as why many are left sick and doctors throw their hands up saying “I don’t know what’s wrong with you” . This makes it even more depressing for the sufferer .
A suffer easily can be labeled a frequent flyer at a ER because once we get sick it can last a long time ! For many of us dehydration and malnutrition can be deadly ! Within the last two years in the CVS community we have lost a minimum of 15 CVS brothers and sisters due to CVS that led to serious illness and organ failure ! CVS is no laughing matter ! How many more have to die before CVS is taken seriously!
” it’s not like CVS won’t kill you” these doctors need to learn that CVS can kill you.
can happen by CVS are as followed . Complications
of CVS you must replace fluids that were lost because of vomiting and diarrhea. When dehydrated, the body lacks enough fluid and electrolytes—minerals in salts, including sodium, potassium, and chloride—to function properly. Severe dehydration may require intravenous (IV) fluids and
rritation of the esophagus—can result from the stomach acid that exits through the esophagus during Vomiting. Vomiting blood can cause a tear in the lower end of the esophagus—is caused by severe vomiting. A person with bloody vomit and stool should see a health care provider right away. I have in my medical records Mallory Weiss Syndrome because it happens often , during pregnancy with Hyperemesis Gravidarum it was worse .
Tooth decay or corroding tooth enamel is damage caused by stomach acid. Once you lose the enamel your teeth are not savable. I had all my teeth rot due to Chronic CVS after having a very high risk pregnancy known as Hyperemesis Gravidarum . HG and CVS mimic each other with HG two lives are at stake in less your pregnant with more then one baby . Many moms in the aftermath of HG get CVS.
Anyone anytime and is not rare by any means . If you are unable to get treatment or delaying treatment can cause irreversible damage to your organs and this can kill a person with CVS. As dehydration is hand and hand with CVS. Septic shock is a serious medical condition that occurs when sepsis, which is organ injury or damage in response to infection, leads to dangerously low blood pressure and abnormalities in cellular metabolism. … It can cause multiple organ dysfunction syndrome (formerly known as multiple organ failure) and death. CVS causes extreme nausea and vomiting that can lead to dehydration and malnutrition. However many CVS suffer in silence because we are label drug seekers and some CVS treatment includes pain medications so the medical community points fingers and saids ( nope just wants drugs ) All we want is to be out of pain and to help the Sickness , nausea and vomiting to stop. many with CVS that get Hyperemesis Gravidarum it’s Severe and needs to be treated aggressively many like my CVS brother Dave pictured in this blog , dehydration can lead to serious complications, such as coma and death, particularly if untreated. … ( Dave overcame the odds and is still here praise god but he still sick and fighting the battle every day and refuses to let CVS win !
Anyone with CVS needs to have valuation and good medical treatment.
Dave is a inspiration to me . I am proud of him speaking up about it and being a man it’s not easy . I have another CVS brother Stephen who is awesome too !
Here is his YouTube video
#CVSTRUTH from him . It always makes me cry
As men with CVS most of them suffer in silence. More men need to speak out to show it’s just not in our heads .
Our body needs many things to stay alive . However the lack of aggressive treatment for Cyclic Vomiting syndrome, organs including the kidneys, liver, and brain are often damaged due to severe dehydration. Confusion and coma are often signs of brain damage from dehydration. You may here this is very rare but sadly it’s not.
Get checked to see if you have Gastroparesis because having this on top of CVS is debilitating.
It’s possible to have periods of wellness, but it’s hard on many CVSer. So many things trigger CVS and it’s very hard to pinpoint ones triggers at times even someone who has had CVS for years ! CVS can lead to other life-threatening complications . CVS doesn’t discriminate, it mimics Hyperemesis Gravidarum so if your in the aftermath of your pregnancy and suffered from HG you could have CVS. If your a CVSer and get pregnant and become very ill frequently you could have Hyperemesis Gravidarum . If you have HG you can have a child born with CVS . CVS and Hyperemesis Gravidarum are related by our DNA more research needs to be done on the RYR2 FACTOR to know does everyone have this Gene mutation or only women.
If you need help to explain what CVS is and if you have any questions at all please comment or reach out ! The picture below is someone I know in my CVS groups and survived however he battles CVS as many of us do !
This photo speaks volumes and is a wake up call !
Medication can’t kill CVS nothing will there are vitamins that you can take to help make CVS a bit better . My problem is I can’t take the Mitochondrial cocktail I try and always get nauseated.
CVS on a daily basis keep fighting . CVS is a real thing , don’t discredit someone suffering if they have CVS or have symptoms of CVS and are undiagnosed. Many doctors sadly are not educated on #CyclicVomitingSyndrome as they are uneducated on Hyperemesis Gravidarum . It’s about raising awareness , sharing this post and getting the word out that #CVSIsARealThing. CVS doesn’t Discriminate men get CVS too , I know quite a few men who do and it’s so hard on them too ! This picture below is of a CVS brother Dave ! Please know you are not alone , would you want to see your loved one in the hospital in a coma like this photo ?Because this is the #CVSTruth THIS IS our #CVSReality
Sister Starr Andrews Strong 💕.Founder of Hyperemesis Gravidarum Before During And The Aftermath CVS Truth is a division of HG Before During And The Aftermath http://www.hg-before-during-and-the-aftermath.com#CVSTruth #AreYouCVSAware CVS Is A Real #HGAndCVS