Cyclic Vomiting Syndrome - Kirsten Tillisch, MD | UCLA Digestive Diseases
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- Опубліковано 31 лип 2024
- Cyclic Vomiting Syndrome - The Right Diagnosis and the Right Approach to Treatment
Kirsten Tillisch, MD
UCLA Mellinkoff Gastroenterology and Hepatology Symposium
March 10-13, 2016
Learn more about the Division of UCLA Digestive Disease at www.gastro.ucla.edu - Наука та технологія
The. Most. INTENSE. Nausea. There’s no words for it. Seriously. A CV episode is just … ugh. It’s REALLY INTENSE. The nausea, sweating, panic, racing heart etc. You’re so desperate for it to END!!
This. Absolutely. The nausea was always the worst part of it for me and it lasted for hours upon hours until the vomiting began and even then the time of relief was so short between bouts of vomiting. Terrible thing to go through
My sons CVS was finally SOLVED! 🙏
It’s completely healed now. It was not a stomach disorder like his gastroenterologist thought. Instead, by a fluke, at a new ER, they ran more tests and after imaging his kidneys they found a polyp in his ureter (the tube leading from his kidney to his bladder) that would occasionally block the flow of urine, where it would build up in his kidney and cause excruciating stomach pain (really it was kidney pain that he felt in his stomach) and vomiting. The polyp was removed and he has never had a single episode now in years! I know this may not solve everyone’s CVS, but I hope it will point some of you toward other potential downstream organs, not just the gastro region.
Thank you so much for commenting this
It's so maddening to be accused of faking it!
There's NO faking this!
Complete and total agony!
I'm currently on day 5, two hours from day 6.
I pray for anyone that has to go thru this! 🙏
I’ve watched my son go through these episodes for about five years. They finally stopped when he gave up alcohol and marijuana. This was not easy to do. But now he’s three years sober and one year off marijuana. In the beginning he felt deprived but now he doesn’t mind at all.
@@notnow7973 well then he had cannabinoid hyperemesis and not CVS.
I'm glad he was able to be free from this!
God, this is so reaffirming. The part about being stigmatizing is sooo soo true. everytime it happens to me my family gives me shit thinking im faking or I'm on some drugs. The 1 time i did go to the hospital i got the same response from the nurse. I told him i had CVS, he didnt know what it was or really care. I got the distinct feeling they thought i was there to get some pain medications. I felt so mad bc no one would believe me.
Not that it makes it right but some people get CVS that’s caused by smoking pot and the heavy pot smokers refuse to believe that the THC is causing it and refuse to quit. I bet they thought you were a heavy pot smoker and lying about it.
@@imagin916my son had episodes related to heavy pot smoking. He finally gave it up and the episodes stopped. It’s been almost one year. He was engaged to be married and his fiancé threatened to call off the wedding if he didn’t stop. He stopped. His life is good. Fear still lingers in the back of his mind. The episodes are terrifying. I sat with him several times and took him to the hospital several times. Harrowing.
Cvs is rough to have as a adult i feel bad for the kids that have this
Definitely
Ive had it since i was like 3- i could not count how many times it got me hospitalized
When the statistic showing that up to 50% of people lost their jobs to this I’ve never felt more relieved. I thought it was just me not being able to handle it
I lost my job from it I was sick for months and they fired me in my hospital bed
i was a part-timer at yogurtland and i spent shifts vomiting in the bathroom washing my hands and face and then coming back out to interact with customer like nothing happened adn then five minutes later i would be back in the bathroom again. they never fired me, they just stopped putting me on the schedule until like a few months had passed so i officially quit.
@@rachelarnold5585 I tried to keep my job as a dishwasher while I was having a spell but the smell of wet food and the heat of being in a kitchen was constantly making me sick
I lost my job Bc I kept having to call in sick Bc I couldn’t move I was so nauseous and vomiting
Had this as a suspected diagnosis cause of my symptoms which i've suffered with for over 20 years. More research needs to be done. This is a crippling illness and causes anxiety & depression.
Thank U for sharing. If you need more research or clinical info regarding cyclical vomiting syndrome, please visit the Division of Digestive Diseases: ucla.in/2x69EGt
A. Cat my friend I feel so much affinity with you. The last 15 years have been hell. Hang in there and I hope you find the help you need. ✌️
Couldn’t agree more. It even has deprived me of my will to live. Wouldn’t even wish it on my enemy
I can totally relate to you unfortunately I've had it for 12 years and I have felt so helpless until I just happened to start doing some research with my son today and everything sounds exactly like what I have with this CVS thing going to see a doctor right away thank you for your comment
@Joel Tacadena
Survival shield x2. It's iodine. Try it. It stopped my symptoms, maybe it'll stop yours. I've been cured for about 4 years, and was even able to get pregnant.
incredibly brutal condition , trust me
So gross. Mine comes with intense sweating
@@louisehills5480 so sorry you hav
So sorry for anyone who suffers with this Brutal condition
It really is :( I'm relapsing now.
I have it too. Devastating.
It’s wild hearing how accurate this is to my symptoms. It’s like I’m her case study w/ every detail.. like this blows my mind hearing what I go thru exactly mapped out like this… diagnosed a few days ago & it’s brought a lot of closure finally understanding it all & how to treat it.
I suffered from this for 4 years.
Almost killed me.
God bless all who are tortured by this.
God have mercy in Jesus' name.
How you cured it?
akhil sometimes if your a child you can grow out of it into migraines when you hit puberty
Amen.
8 years before i figured it out... Still deal with it if i dont watch my diet. Dont bother with cbd oil or this 92 shit u guys r talking about
Plax Ge Amen
this has made my life hell. everday
We are sorry to hear that. Cyclical vomiting syndrome can be distressing. If you need professional help, feel free to reach out to a GI expert: ucla.in/2x5Acr2. All the best
92 tele I
92 tele Me too. CBD oil changed my life
Same
Little kids don't usually smoke pot. Why do they have cvs?
If only a dr had cvs for one day. Treatment would deff change!!!
Right? but most doctors don't even care. People are just cattle to them. We are just another # and $ sign that they rush in and out as soon as possible because they purposely pack thier daily schedules that way for max profit. You have to be your own healthcare advocate.
My doctor actually is really good at taking care of my cvs. He gave me medicine that actually keeps me from being sick 24/7
Right. Ya, I've talked to death in the bottom of my shower, im in it right now, have been for 5 days. She is right I will not go to the hospital for it any more, and its because they don't believe me. But always send me home with cvc pack.
I always say this!
i will be a doctor one day i will save me,save us
I've had this since I was 13, I'm 21 now. I've been to the ER so much that I lost track. At one point in high school, I had to miss a month of school because it got really bad. I've been on most of the meds listed if not all. They don't really help, amitriptyline had me looking like a zombie the entire time I was on it. More research needs to be done, a lot of us has been suffering for too long.
Same! Mine started at 9, I’m 23 now. I haven’t been on meds. I’m so nervous about getting help from doctors because when I first went to the ER they said “you’re fine” and my doctor after that misdiagnosed me.. don’t really have a lot of hope when it comes to doctors.
Ondansetron helps abort and prevent my daughters CVS. She is 4. Have u tried this?
Y for same. It's tough.
I can’t stand it. The closest I’ve ever came to suicide was during my episodes. I’m so depressed, I’m in so much pain, I’m such a burden to myself and others and I can’t stand it anymore. Mine lasts about 5 days once a month right before my period and I know it’s coming because I will have trouble pooping and my vision goes blurry.
So very sorry. My son was helped by giving up marijuana and liquor. He takes a psych med, an anti nausea med and the supplement l-glutamine.
Episodes are extremely traumatic. There is a clear causal relationship. The fact that physicians continue to treat patients as having distinct psychiatric symptoms is silly. If someone beat you up every time you went down a certain street, you would be afraid to get anywhere near that street as well.
I've been dealing with CVS for the last 13 years, started as an adult not a child.
I prefer Walgreen's personally
Same. I think i was convinced to have anxiety and thats what triggers CVS when I don't feel like i do have anxiety
Homeopathy medicin.. Bacillinum burnet 1m, single does only... 100persent cure u
@@kamleshbirla6735 No, actually this is a real condition that requires real medicine to treat it. Peddle your scam somewhere else.
You have no idea how happy you have made me and my 42 y/o daughter who has had this forever and no one has been able to tell us what’s going on! It greatly affects everything her life, therefore her life! We feel like you saved us both and we are very thankful to God for answering prayers! I hope we can find a Dr familiar near us here in MB, SC! Thank you!!!
I went undiagnosed for 8 years. Lived in Akron Ohio at the time, lost a good job after 5 years. Going to local ER and transported to the local hospital all to be tested for everything. When they couldn't find reason's for what was going on, I was called a drug seeker and sent home. I finally went to the Cleveland clinic and was diagnosed within a day. Stress is my main trigger. I am on medication for anxiety. After have been divorced for 5 years, I now have been in remission for 4. Keep looking for a doctor who knows about this. There is hope and light at the end of the tunnel.
Thank U for sharing your story, Katie.
This describes my son to a tee. What doctor did you see at Cleveland Clinic? The doctors around Akron keep treating us like we are drug seakers.. we need help
When she said "many people think they are fakers" literally my whole secondary school of teachers
I need to visit Dr. Tillisch asap. To see this much empathy and knowledge is rare compared to my experience, unfortunately!
My daughter has CVS. Thank you so much for sharing. I’ve been researching this illness for at least 5 years and this is the most helpful video/article I have seen.
Try iodine!!!!!
Right?! She’s great
EVERY ER Dr needs to know about this. It took me nearly 10 ER visits over 3 years for Doctors to acknowledge this is it. They send me away saying food poisoning, flu, stress, and other things. Very frustrating.
Robert Nickel I completely agree. I have been battling this for 10 years, over 30 ER visits in 5 states. I still remain officially undiagnosed. I have lost several jobs and live in constant fear of that terrible feeling that goes along with onset. Awareness is vital so we can be taken seriously.
This talk is amazing. I have CVS and am currently 28 weeks pregnant. I'm having so many episodes now that I carry a puke bucket, cleaner for my car and have become the stealth vomiter. I have so many of the triggers but motion, stress, fatigue and lack of eating are the main ones. I just had an episode yesterday that hit me out of nowhere. I was unprepared and ended up puking all over my office and then laid my head on the toilet while my phone rang off the hook.
This is ruining my life and as a recovered addict, people think I'm high on heroin, coming down or in some kind of withdrawal.
Oh man… As a recovering addict also I feel your fucking pain. No way you want people to think that you’re coming off of something especially when you’re pregnant I’m so sorry. What an awful awful thing to deal with.
I’ve had this for 22 years and it is beyond agony. The nausea is worse than I can put into words. Just about ruined my life.
Thank you SO MUCH for this. I have had chronic nausea and vomiting for 20+ years and never been diagnosed. Have spent the past few years undergoing so many tests. I'm going to pursue a CVS diagnosis ASAP.
My son has had this problem since elementary. Falling and hitting his head multiple times. He is now 19 and still suffers from it. This video is pretty accurate on all the symptoms and outcomes. As parents to a child who has this disorder its very very traumatizing. You become a very light sleeper anything wakes you up. Our dog plays a role he went from outside dog to indoor dog and sleeps in my sons room he is the “one” that lets us know my sons sick. Highly recommend a dog that could help in this manner.
This is atopic we can talk about for very long. I pray we find a cure. And for all the children and youth who are going through this may god bless you with strength faith and hope. Your not alone we love you 🙏🏽.
The falling is bad my daughter is experiencing seizures whiles she is out it very scary she not able to do physical activities anymore I find that food with broth is a better choice
I have finally been diagnosed after years of problems, this video really helped me understand my illness. Thank you
Thank you so much. I think this video might change my husband's life. ... he s been diagnosed with everything GI under the sun but nothing seems to stop the vomiting and the doctors don't listen. He was finally diagnosed with Cyclic Vomiting among many other diagnoses but the doctors still couldn't stop it. I'm his wife of 20 yrs and I kept saying to them maybe treat his mind and not his gut.... they wouldn't listen. but I have found everything that you've said to be true and the sleeping past a certain hour, the amitriptyline meds etc all seem to work but the doctors in th ER say no we need to treat his gut. Thank you so much for helping my family. this has affected me, him and out 2 teenagers so much these past 2 years. it just happened seemingly out of the blue. he was 43 when it started. thanks again I finally have a path
I have been diagnosed and it’s all true. I’m going live when I get an episode so you can see for yourselves, she’s telling the truth ! Thank you!
I am a veterinarian and have suffered from CVS for nearly 15 years. My life has been derailed by this disorder. I blog (occasionally). I am the Cyclic Vomiting Syndrome Warrior (wordpress). Thank you for this presentation. I appreciate the focus on the psychiatric and stress components. The brain/gut is the way to shortish it. I believe that research will lead us to conclude that CVS is similar to a seizure disorder. Partial focal seizure activity between brain gut during which the patient is in a "conscious coma".
Thank you for your work.
*The brain/gut is the way to **approach it..
A "conscious coma" I've never heard it described better!
Plus, I think my stomach is literally having seizures during a CVS episode.
I don't wanna do this anymore!
☮️💜
I went one year with out a single episode. I decided I was too skinny and wanted to gain weight and get muscles. I began drinking a protein shake that was made as a weight gainer. It has tons and tons of vitamins and nutrients, I drank 16 oz of whole milk with a big scoop of the protein powder. It seemed to coat my stomach and make it strong and never got sick. Definitely gonna start drinking it again
Brittfield you’re giving me hope.
What protein shake was it?
What protein shake?
Everyone wants to know which protein shake it was!
I, too, have lost too much weight & my tailbone hurts all the time cuz I've got no padding on my rear anymore!
Please respond!
☮️💜
@@sweetmissypetuniawilson9206 Serious Mass from Optimum Nutrition
I am going through an episode right now.
My CVS symptoms started when I was about 11. I'm 19 now, and today I was finally diagnosed.
My journey here has been hell. When it started, my kid brain was too young to process everything logically but not young enough to know that it was okay. Countless hospital trips, immense weight loss, constant worrying about vomiting and pain, and anxiety that hung with me through every meal left me feeling entirely hopeless. Every detail of my childhood for the past 9 years has been impacted by CVS. Anxiety and stress were both catalysts for my CVS and catalyzed by it.
But today, I've been diagnosed. I have the tools and support I've needed for all these years to move past that helplessness and hopelessness. CVS is and will always be hell, but today I have more hope than I have for nine years.
How are you now??
@@mettschannel6574 I'm significantly healthier than when I wrote this! in the last 6 months I've only had a few episodes. I've been having new symptoms though, which might be related to cvs, which have been really disrupting life
My journey is similar to yours but now it’s been 16 years that I have it. I hope we can find full healing and restoration. 🙏🏻
Plz suggest how it control ,My son also suffering CVS from 4 yrs.still he is suffering cvs
@@devakaruna3125 Im so sorry to hear. It's such a hard thing to deal with especially as a kid. I have some advice for diet and lifestyle. I don't eat beef and I try to eat small meals. I do yoga, meditate frequently, and generally try to have the most relaxed lifestyle possible -- time in nature is a huge plus. Long showers or time in a steam room if he has access to one can be therepeutic during nausea. The medications I'm on that have helped are the Emend kit, Sumatriptan, Ondansetron. Support him as best as you can, because this illness makes growing up normally so difficult.
My baby girl has this , she was diagnosed at 1 and a half years old after 6 months of unanswered questions and her suffering with this prior to being diagnosed . And still I get drs that don’t know what it is or believe it , it’s hell . It’s hell to see her suffer , it’s hell not being able to help comfort her , to see her In excruciating pain , for her to wake up randomly every few months vomiting and screaming in pain . All the sleepless nights , the tears , the hurt . So so so hard . I am not a believer of god , but I pray to all of them every day that they ease it and she grows out of it with time . She’s now 3 and only has an episode once every few months .
I've suffered it for years, but only recently got a name to it. I want to die when it happens. I'm currently going through a bout.
This was so informative! Thank you doctor. My 15 year old daughter has this and it’s a nightmare. It’s like you were explaining her to a T!
No doubt
I was okay for years until recently going through alot of workplace anxiety. Fear of loosing job and such... I wake up everyday with nausea and throwing up... My heart starts to race the moment i wake up.. Every morning is such a drag.
I think I have CVS cause it sounds exactly like my problem. I start to feel small stomach pain but barely feel it. After like 3-4 hours it starts to get much worse and after another 3 hours its hurts so bad and I vomit this yellow stuff. But I have never been to the hospital for pain medication. But it does hurt a lot and sometimes i get suicidal thoughts cause I just want the pain to end during that moment but when it passes I feel fine, only some different type of stomach pain, which is normal have i heard after you vomit.
JERROD RICHARD ADAMS·SUNDAY, JANUARY 28, 2018
Handsome Heaves Helpful Hints
1)A Thick Foam Yoga Mat, Inflatable Raft Pool Noodle - really anything to keep your body parts from making contact with Tub or Shower Floor Walls - The protective barrier will keep Tub Sores on your TailBone ,Hipp's, Knee's, Shoulders any point of contact. My Tailbone is Healed and No longer cracks from the Callous YEEAAHHHH. They run from 3$ at Bargin Stores to 25$+ US at Gyms Buy at a Bargin store save 15$- unsure what that translates to in Euro . 2) A Acid Flush - This will drop into belly and Neutralize the Acid inside the belly upon contact and then you yakk up the Neutral liquid instead of Dangerous Acid that will cause Erosion. Think Elementry School Science Fair Volcano . The Main ingredient is Baking Soda it is the Base of ALL the Tums and Stomach Aids on the Market as is Sugar which is the 2nd ingredient it helps soften the water and mix to slide past your gag reflexes taking stress away from that area . I try to Kill outer lyeing problems so that they are not continuing to add to pain and process of CVS. 1st Is Acid Burn- 1 32oz cup plastic- 1/4cup Baking Soda 1/8th or more of Sugar Mineral or Spring Water Cold - Tap Water contains to many Hard Water Deposits and will tear esophagus ,throat areas. Flavored Sports Drink - For Flavor - Many of you I already understand can not stand the Taste of Baking Soda. ----Mix Dry mix together (Sugar and Baking Soda) to stop any clumping ----Add in Water Half way up cup ----Add Flavored Drink Last it sometimes contains Acid in High Amount and will activate the Baking soda before you swallow and you want it to stay inert till it hits Acid in Belly. ----Now Play Time ----Stir Mix Swiftly to disperse the mix evenly in glass and Down ----Do the Hokey Pokey and try not to turn yourself around ----Yakkk it Out ----Finish follow up with a Cup of Cold Sugar Water - As i said before Sugar is to help Soften the Water so if your Diabetic no worries use less sugar also your yakking it out Soo try not to stress on sugar intake ----Try NOT to use Red Gatorade or Any Fruit Punch - Red Dye 40# is Not are Friend also who ever looks into shower after your done will BAD THOUGHTS like you yakked Blood everywhere- LOL They tend to Freak Out LOL3) Being Backed Up- My Advice is Enemma's the laxatizes and stool softners help only so far from above when we are dehydrated are poo track is like Dessert Dry . Do try to keep both ends wet ....4) Pink Sea Salt in Warm Water will Help with Mouth and Gum Pain
5) Magnesium and Potassium are the 1st 2 too go during puking so find a drink you like that has a High percentage to help keep your levels Up.
6) L-Carintine and CoQ10 taken in proper doses will help you absorb more of the pills your taking as well as Speed up to metabolism up to get your Meds worked into the Liver for proper distribution .
I’ve been suffering from CVS for eight years. As a fifteen year old girl this affects my life completely. I don’t even attend a regular school anymore because it’s gotten pretty bad. I hope I’m one of the lucky ones who outgrows CVS and gets migraines instead when I am an adult
I have had this disease for over 15 years. Only recently diagnosed within the past year. I will go for two weeks to two months vomiting every single day 6 to 10 times a day. It is absolutely hell.
Cyclic vomiting is probably the worst thing I have ever experienced. I have slept in my car for hours covered in puke due to this disorder. It has hit me randomly throughout the day with no rhyme or reason. One thing I experience which is probably the worst symptom is the unrelenting fatigue that accompanies an episode. I've slept on bathroom floors for hours, in my car if it happens when I'm driving or on the road or at work. I have thankfully not had an episode for a couple of months but I know how it goes; it will happen. I wish I could get some time with Dr. Boles.
At last someone talking about fatigue. I had to study for a very important exam and I was complitely unable to study because of how tired I felt.
Ever see dr boles?
I know exactly what your talking about. I was a mail carrier for USPS when CVS first hit. Spent many days on route, parked, sleeping, and covered in vomit. Wasn't good. :(
Stop drinking and smoking, it worked for me!
Wow I need to meet this woman. She'd have a field day with me and my symptoms. I've been to the hospital over 8 times over the past 2 1/2 years for CVS, and still am not diagnosed. First time had my appendix removed, second visit was told I was throwing up from free fluid in my stomach due to after surgery, third time was diagnosed with basically food poisoning. Then with each coming visit I kept getting the same treatment and tests done but nothing was really coming about. I need help :( these doctors don't understand.
JFour2zero I'm 12 years old and I've had CVS, gastritis and abdominal migraines since I was 1.
I'm pretty sure I have this, not diagnosed yet but I fit the symptoms of CVS pretty spot on. CVS is no fun and I dont wish for anyone to have this.
@JFour2zero @Adriana B CVS can be stressful to manage. If you need professional help, feel free to reach out and consult with a GI expert: ucla.in/2x5Acr2. We wish you all the best.
Hi Mercedes,
We are sorry to hear about your situation. If you feel a need to treat CVS, please reach out and consult with a GI expert: ucla.in/2x5Acr2
Do you smoke weed?
I got diagnosed with an idiopathic CVS- found four YEARS later it was cannabinoid hyperemesis syndrome. I was very up front with my doctors and my heavy cannabis use yet they still missed it.
I had all the EGD and colonoscopy stuff done too. After the second round of them they just started managing my symptoms instead of trying to find a cause. But then I started heavily researching my symptoms and the pieces started falling into place when I discovered CHS.
As someone that was recently diagnosed with CVS, I am extremely grateful for this speech. I have been diagnosed with 4 different GI issues and I'm not certain that CVS is the correct one, but thankyou for this information. I can relate extremely well to the social issues caused by this ailment, being unemployed for a year. Although I have a fit at least once a month. I get accused of canananoids, even when I was 13 and first started presenting, long before I even knew what canabis was.
Thank you for bringing awareness god bless
Allyse Hanton Which God? Please be specific as there have been thousands of gods worshiped over time and I want to know which god can cure this. Have you actually spoken to this god or do you just speak and he can hear you? Your really lucky to have this supernatural being helping you. You are so lucky. Religious beliefs are ignorant primitive superstition grow up.
I've been dealing with this all my life, I'm 25. I cant find a docter that will for sure diagnose me, but they all say they "think"i have it. I know I do. I live in my bathtub and have no life.
This disease is ruining my life, and because of my race whenever I do go into the hospital people think I'm just trying to get drugs which leads to me ALWAYS getting "forgot" about and treated pretty rudely. Im going to do whatever i can to actually get diagnosed so i can start treatment and dont have to miss work or social functions and end up in hospitals
I am so sorry for your negative experience. I hate it when ER staff always mistake us for a bunch druggies especially if you visit them at least 5 times a year. It’s like they have no empathy or basic knowledge.
Find yourself a good gastroenterologist and get diagnosed!
Even the Mayo clinic recommends nausea & pain meds in the ER to treat CVS!
I’m so sorry… My girlfriend deals with the same thing. Very frustrating.
I hope you’re doing better now. I’ve dealt with the same thing myself for years and it’s so sad and disheartening and makes you feels so hopeless and alone. My prayers are with you. 🙏🏼 hugs
Away to get an endoscopy and ct scan done to rule out anything else but two docs have mentioned cvs to me and I honestly think I have it, I got rushed to hospital in an ambulance in July the gp thought I had appendicitis but they couldn't tell me what I've been suffering with for the last 6 years. Got admitted to hospital again last weekend and thats when they mentioned cvs. It ruins your life for atleast half a month whilst your body recovers and leaves you to pick up the pieces. I applaud everyone who deals with cvs because wow its relentless. Hang in there everyone, we will get through it 💪
Got CVS during my pregnency 1992.
I have been tied to the bathtub since then.
My hole working life was over before it even began. I am now on wellfare.
No doctor could tell me whats was going on.
So in 2012 I found this diagnos on Google & finally got my diagnos .
Stress and alcohol is a big no no. Red meat seldom.
I developed this at 27 years old. Took 2 years of testing before the Mayo Clinic diagnosed me. I'm 39 now and keep hoping something better than just treating the symptoms comes along
Definitely a living hell. Iv'e had this since 1982
One thing that all of these medical professionals never mention when talking about cvs is that the episodes are not always acute. I was diagnosed with cvs about a year ago but have been suffering with it for almost 2 and my episodes last up 6 or 7 months with a 2 month absence between them. More people need to understand that the episodes are not 14 days at the absolute maximum many of us have longer episodes.
Totally agree! I've been feeling sick since october. I'm not feeling sock every day but at least twice a week. Sometimes an entire week with migrane and fatigue or stomak pain or weird sensations in the abdominal region.
My 9 yr old grandson has suffered with this for 3 years or longer. His episodes last sometimes up to 6 weeks with numerous ER visits and hospital stays. He is sick and in the hospital more days than he is in school. Wish all his Dr.s would reach out to experts on CVS.
this is so bad it's unbearable I feel helpless but today,I came across CVS this day today after wondering what could I possibly have that the doctors can't find after 12 years I'm going to the doctor right away and seeing if this is what I have the symptoms are all right on point with me thank you for your video
See i watched this to learn more about it cause i figured ive read all the articles (ive had cvs for 4 years now) and nothing has really helped me and yet everyone whos been diagnosed with cvs has sort of different response to it as i do like “only happens every couple months blah blah blah” for me thats not how it works it happens to me on a daily basis randomly and she said they average around 4 a year that means im way above the average and its starting to really affect me mentally since i dont wanna say my age since this is the internet but regardless its just really confusing now more than ever
I can't believe there's other people living with this. I can't stop crying. This shit isn't fair.
I came here after atleast 13 years of dealing with cvs just to finally meet others who suffer from cvs. I finally feel like im not alone.
yup i had this too. i'm like 90% sure i saw this doctor from UCLA although i could've sworn her last name started with a Z. this disorder is truly a hell on earth. the saddest thing was when it came back with a vengence after 3 years of no symptoms and absolute perfect health. And the medicine i used before didn't work anymore and the symptoms had evolved in their pattern. i have improved a lot lately and im now at a great college, UCSD, but i often mourn the loss of my high school years. high school is only 4 years and i lost 2 and a half of them. the state of my existence during those years was no better than death. I was never suicidal because i had hope that i would improve, but if i thought i wouldn't improve i think i would've seriously considered ending it.
i definitely felt stigmatized by physicians and friends. doctors always seemed to downplay me/dismiss me or just say that i was anxious.
8:30 i feel so heard and justified when she said that other patients experience relief from hot showers/baths. if i was quick enough, i could occasionally abort an episode. fellow stomach pain havers, you guys should try taking super hot baths and showers. they helped me a lot. the one downside, I got really dependent on hot baths for a while and would spend sometimes 12 hours a day in the bathtub with my computer, drinking water, and barf bucket nearby.
I appreciate this video. I have brutal episodes of CVS. It's unbearable man! I wish everyone who suffers from this disease the best.
Brutal is almost an under statement!
I wish for death every time I go thru this!
Someone cure this!! 😩
☮️💜
Ive had this since I was 3. I only gathered the balls to google it now at the age of 20 and I'm honestly so baffled how so many people in comments and different videos have such similar triggers, episodes and symptoms to me. I literally thought I'm the only one out there like this because I've never heard of anyone throwing up every 15 minutes without being able to talk, drink, eat for 4-7 days on end
My sister has been suffering this for a decade now. And she can't gain much weight because of this. I really do hope she gets well soon. Watching this while we're at the hospital rn.
I don’t get abdominal pain, but I do get bloating and gut disturbances. I start with fatigue, tachycardia, neck and side head pain and very nauseous. Head feels like it’s going to explode and once I vomit, I feel so much better. Then feel fine for weeks, then again. I do notice stress or food triggers. I always thought it was food poisoning. I did have h pylor, then Sibo and now IBS. But these episodes started way before. Started off once a year, then a couple times of year. Now every other month. I’ve told my docs, and never really been treated or diagnosed or anything 😞
I don't even bother going to emergency room anymore unless i really really have to
Thank you very much!!! ❤
I have Cyclical vomiting syndrome to
Thank you for doing this
JERROD RICHARD ADAMS·SUNDAY, JANUARY 28, 2018
Handsome Heaves Helpful Hints
1)A Thick Foam Yoga Mat, Inflatable Raft Pool Noodle - really anything to keep your body parts from making contact with Tub or Shower Floor Walls - The protective barrier will keep Tub Sores on your TailBone ,Hipp's, Knee's, Shoulders any point of contact. My Tailbone is Healed and No longer cracks from the Callous YEEAAHHHH. They run from 3$ at Bargin Stores to 25$+ US at Gyms Buy at a Bargin store save 15$- unsure what that translates to in Euro . 2) A Acid Flush - This will drop into belly and Neutralize the Acid inside the belly upon contact and then you yakk up the Neutral liquid instead of Dangerous Acid that will cause Erosion. Think Elementry School Science Fair Volcano . The Main ingredient is Baking Soda it is the Base of ALL the Tums and Stomach Aids on the Market as is Sugar which is the 2nd ingredient it helps soften the water and mix to slide past your gag reflexes taking stress away from that area . I try to Kill outer lyeing problems so that they are not continuing to add to pain and process of CVS. 1st Is Acid Burn- 1 32oz cup plastic- 1/4cup Baking Soda 1/8th or more of Sugar Mineral or Spring Water Cold - Tap Water contains to many Hard Water Deposits and will tear esophagus ,throat areas. Flavored Sports Drink - For Flavor - Many of you I already understand can not stand the Taste of Baking Soda. ----Mix Dry mix together (Sugar and Baking Soda) to stop any clumping ----Add in Water Half way up cup ----Add Flavored Drink Last it sometimes contains Acid in High Amount and will activate the Baking soda before you swallow and you want it to stay inert till it hits Acid in Belly. ----Now Play Time ----Stir Mix Swiftly to disperse the mix evenly in glass and Down ----Do the Hokey Pokey and try not to turn yourself around ----Yakkk it Out ----Finish follow up with a Cup of Cold Sugar Water - As i said before Sugar is to help Soften the Water so if your Diabetic no worries use less sugar also your yakking it out Soo try not to stress on sugar intake ----Try NOT to use Red Gatorade or Any Fruit Punch - Red Dye 40# is Not are Friend also who ever looks into shower after your done will BAD THOUGHTS like you yakked Blood everywhere- LOL They tend to Freak Out LOL3) Being Backed Up- My Advice is Enemma's the laxatizes and stool softners help only so far from above when we are dehydrated are poo track is like Dessert Dry . Do try to keep both ends wet ....4) Pink Sea Salt in Warm Water will Help with Mouth and Gum Pain
5) Magnesium and Potassium are the 1st 2 too go during puking so find a drink you like that has a High percentage to help keep your levels Up.
6) L-Carintine and CoQ10 taken in proper doses will help you absorb more of the pills your taking as well as Speed up to metabolism up to get your Meds worked into the Liver for proper distribution .
I'm starting to feel the same exact way man I've been to ER and a guy I know and he's got it forsure and they think of it it now
I also have cvs + ibs I developed it when I was 17. Was treated like shit and couldn’t work and started doing Heroin. No one understood. I once wretched so hard I tore a hole in my throat. 💯 points if you knew that’s called Borhov’s syndrome. It’s an extra rare syndrome on top of a rare syndrome and I signed papers to be anonymously used in a text book as a case study and lots of doctors came to see me. I used to search for info about this and 10-15 years ago there was NOTHING. I’m encouraged that people are catching on. For the children’s sake.
I was 17 years old
A young man I was tough and fresh
It nearly killed me the 2nd episode was epic bad. So I can’t imagine a child going through this.
HOLY SHIT ! Excuse my language, but this hit me like a ton of bricks. I'm almost 40 and am just now finding out that this is what has been wrong with me for the last 15ish years. I'd just randomly start feeling nauseas and then puke ever few hours for at least a full day. After I'd puke up everything I happen to have in my stomach I'd start puking up actual bile. Not 1 of the 'over the counter' anti-nausea meds helped even a little. Almost everytime I'd end up having to go to the ER to get injected with fluids. From all the heaving my throat would get sore, my stomach muscles would hurt, and it would just put me out of commission for a day or 2 after the episode which has cost me A LOT of jobs. I'm calling my doc 1st thing in the morning. TYVM !
After 6 years since my first memorable episode, i got diagnosed this year, 16 years of age, even though we told the doctors we thought I had it so long ago. If you want to hear my story reply :)
Jessica Cole I would please I think this is what I have and hearing people stories is making my life make so much sense.
Please tell ur story and if u have found relief
My 9 year daughter has this disorder . She was initially diagnosed being acute lactose intolerant when she was 15 days old we switch here simulac formula to vegetable based formula it worked & went away for 8 years now it has come back as sickle vomiting syndrome her trigger is lactose intolerant again. but it took me 6 months just to get it diagnosed now we are good cow products have been banned from our house and we are only using almond or coconut milk no cheese. she is doing great. The cow produces a protein that triggers the wicked syndrome so for you parents out there remember lactose intolerant isn't only milk and cheese there are alot of products made with that protein...good luck guys im working on curing my daughter without harmful medications
In and out of ER the past 10 year, I am now 30 and it's been really bad this year I have had 7 episodes alone and it's the first day of June :(
The doctor told me I have it just yesterday. I wanna cry this sucks
I have had this since I was 17 and I’m 24 now. Been in and out of the hospital so much I had to stop going to college my Junior year and just getting better enough to go back 3 years later. I first had my appendix removed, then had my gallbladder removed then had my an exploratory gi surgery. She hit the nail on the head and sounds like me. I found out after years that it was anxiety triggered mostly. I would constantly go into in episodes whenever I had a major life event like Birthday party’s, exams, holidays etc. We can definitely feel it come on a lot of us start to feel hot and begin to sweet and our stomach begins to feel like it’s twisting. I have a couple videos on my account if you’re interested.
Thank u so man I’m going thru it right now
Do you get abdominal pain?
I have cyclic vommitting syndrome & I have a very severe case.. I wish I could of gone to UCLA ( oddly I was never referred there) but I wanted to let suffers know & Doctors that may read this that I suffered for years & was told it was my depression ( ya I was depressed I got to a point where I couldn't even eat. Cause during an episode mine could last for days & if I did stimulate my stomach with food the severe pain would return.. I am treated with opiates because I have this & a very bad back .. I have tried anti depressants migraine meds but my quality of life was suffering in the worst way I was in agony in 2004 they did a gastric bypass surgery thinking if they could shrink my stomach the pain would ease.. @ the time of the surgery I was 5'8inches tall & only weighed 116 pounds .. I have been thrown to psychiatrist so many times through the years it was crazy .. The hospitals would think I was drug seeking & I was in agony I can't even tell u what it felt like to have this & then not to be believed .. I am 48 now & so many years of my life were consumed with un imaginable pain.. The only reason I am out of the hospital for a little over two years now is because I have the meds @ home to stop it.. I'm very stress sensitive because I know what's coming .. I lived so many years alone in my own head with this.. It is damaging to get the diagnosis so late this does not happen to me 3x a year it happens 3x a month.. I honestly feel like someone who was put in prison for a long period of time only to find out there innocent the way I was treated @ times were just wrong.. The only reason I was diagnosed I feel is because of Greys Anatomy did a show on this because one of the Doctors on the show her daughter has this in real life.. When I was diagnosed I was a mix of emotions happy finally someone was gonna believe me but mad for being not believed.. I'm scared my meds will be taken away because of stricter drug laws that throws me into severe episodes marijuana has helped me but I don't use it now because my treatment works.. But I also know that sativa marijuana is what u want to avoid if your taking that route for the pain & nauseas.. I wish doctors would believe patients that came back repeatedly with the same symptoms instead of almost getting mad at the patient .. I just had a dr less than 6 months ago say to me take your cyclic whatever & go to a mental hospital & get it cured there.. I live in CA I am moving to Florida where I have support but I have to deal with new Doctors if they don't believe in this or are unwilling to help I will have no choice but to return to CA where at least they are treating my symptoms.. I'm so sorry for the people that suffer with this.. I understand completely.. & wish everyone the best.. Thank u Dr for taking the time to talk about this .. Its so important to the people who are suffering & if u don't have support u could take your life over this .. I live in the shower!!
I think I am suffering from this as well. I thought I got a stomach bug last year and went to the ER 2xs. This was last June. I am still struggling and I have lost 50lbs. Zofran doesn't really help and I was taking it 3 times a day before this happened. Found this disorder trying to figure out what's wrong. Now that I'm hearing everyone stories I would think I have a good poison or allergy maybe once a week. I just used pediolite and Gatorade. Takes a week to recover from the sorness. This is making my life make more sense. I can't even think with the nasea and pain. Everything aches. I am sending prayers. I have my first GI appointment today.
Lisa Black thank you for sharing I thought I was the only one
I understand everything you say completely. My girlfriend has had this for years, and can understand and relate to seeing this all happen. Prior to this she had UC and her colon removed. Since then those issues are fixed and it’s hospital after hospital, she made it almost 4 months with the help of adivan, but is now in day 17 in the hospital, long cycle, and needed a feeding tube, (not her first) to keep her from losing even more weight, as she struggles already. Luckily she is able to go to the Mayo Clinic hospital and is now (for the most part) listened to by doctors, and avoiding the ones that think your crazy.
I hope things have gotten better for you in the last few years. Keep pushing.
I was diagnosed with cvs and my episodes used to be such hell. Never have i experienced nasuea and discomfort of that level. My symptoms definatly have gotten better with dieting and exercise
If you go to Dr. tillisch’s website, There are some very instructional videos. She has this 3 1/2 minute animation, called the “Brain Gut Super Computer” that just explains so much.
I can’t get anyone to listen. They never want to answer any of my questions and I need someone to help me learn to live with this.
Try iodine! I used to have this and the iodine stopped it. The iodine i take is survival shield x2.
I have this and had pyloric stenosis surgery as a baby, is there any research done into the relationship between these
While still one of the many undiagnosed, I believe I have had this since the age of 3. I went to GI doctors for about ten years, and was finally told I was just crazy. Was eventually given low dose alprazolam which was a miracle worker for me. Now, with multiple other conditions, the nausea is back and worse yet every GI doctor I see will not even consider this because I have never used Marijuana, and therefore cannot have it. I am going to try and find a GI Dr who will listen to my decades of missing out on things because I am tied to a emesis basin.
My 4year old son had episodes for a year before he was finally diagnosed with CVS.Back in June he was hospitalized and had test ran to find that it was CVS we also found out that he had a very low lactase enzyme so we have changed his diet to non dairy and he is now 14weeks without an episode. For a year it was every 6 to 8 weeks having episodes. Longest vomiting episodes 1 week diarrhea 1 month. We try and keep him out of the heat too and make sure he is drinking water. Thanks for this video.
This is the same thing with me. I cut out dairy and episodes went away.
Do you think it was the dairy causing this. Because everytime I eat dairy now I get the feeling as if its unwanted in my body ? And would feel weird eating it when it led up to it.
Next time i am asking for bensoduzepen IV, shaken, not steered, and NO NARCOTICS!
I wish I had cvs only 4 times a year when I have it once a month, people who don’t have it can’t possibly understand how stressful it is and the amount it can depress you.
Hopefully more kids parents are aware so they don’t end up like I did. I complained about back pains about before kidergarden. My parents didn’t believe me so I had to go to school and they finally took me to the doctor when they realized I puked like 15 time one day. It took 1 and a half years to diagnose. Soooo many test and different doctors it was miserable. It took so long to diagnose because usually people don’t have the back pains it’s stomach pain
I got relief from Hot baths and showers too. A few puffs of Cannabis allowed me to eat again after not being able to watch food commercials or smell food.
I just have been diagnosed with CVS, however mine is less severe and I just have nausea every single day. But when I go out I start vomiting all over the place but it seems that after I go out and settle for an hour the nausea lessens to manageable
I'm 24 and just started having cvs at 23 and non of may family has it so it's scary living on ur own not knowing what's causing this
I Have this I had it since I was 12 months old I’m 14 all most 15 and it got better I use to have to go to the hospital every month but it got better I was told I had it 6 years ago but one thing I can’t do is sleepover at friends house or I get sick
My loved one with CVS had major surgeries in his first year - g tube, roux en y, j tube, esophageal atresia repair, tracheostomy, esopholaryngeal cleft repair - plus he had a hell of a time withdrawing from meds (there was an incident where a doctor halved his dose then halved it again and made the withdrawals horrific, worse than the others) and a near death experience. It’s hard to not think these had something to do with it. Also, is anyone aware of a study that showed rats on ranitidine have an autonomic nervous system dysfunction invoked? Fight or flight would switch on and not turn off. Sounds exactly like what happens in a lot of CVS. They told me his nervous system was immature yet they gave him a medication since birth that may cause nervous system dysfunction? Every loud noise had him jump then he’d shake for like 30 seconds afterward all while on this drug that caused rats to have a nervous system dysfunction. 🤔 Wish we had more research and answers.
Mine started when I was 7 I’m about to be 37 and I’m in a active episode now it’s been my 3rd one this week.. yesterday I felt fine I take lots of meds but my GI dr retired and since then I have been lost.. my new GI dr doesn’t understand what I have.. so right now life pretty much sucks!!
I have this and it really takes a toll on life it hurts
Haven’t had an episode since I was in the 5th grade after I started dealing with it when I was in the 3rd. Now I am 20 and today I had an episode worse than any that I would remember. I have been have migraines for the last three days and this morning after I took meds to help the migraine that’s when it all started. It sucker bc I never thought it would come back. Ok does anyone else end up throwing up bile and stomach acid? Like I always get to a point where I’m heaving and gagging but literally the only thing coming out is foam.
I think I have this. I have had random bouts of vomiting for about ten years. Really intense episodes but fine in between. About 8-12 episodes a year lasting only a few hours each. It looks like there is some blood in the vomit now. Maybe throat damage from the vomit, I don't know.
I use a heater blowing on my back and a fan to keep cool. The heat stinging my skin causes adrenalin producing endorphins for pain. Fighting pain with pain. I'm diagnosed with gastroparesis. I wake up sick everyday.
What about someone who doesn't really deal with pain and it only happens when you eat because it sounds like something I have and I'm 16 so I'm trying to find out what's wrong with me I get headaches and a little bit of pain
She is saying that between episodes there aren't any synthoms. But i do have them. I have some stomach pain and incomodities related to the digestion almost every day for like two or three months. Anyone here with the same problem as me?
I am diagnosed with CVS and I swear my symptom schedule is opposite of what they say. It's constant stomach problems with occasional days of feeling better. I have noticed a difference for the better after doing the mito cocktail daily.
@@robsweetleafbendixen4337 i've been found with two ulcers in the ileum with the possibility of an infection. So it might not be the vomiting syndrome after all. We are still not sure of anything though. I hope you get better.
I am living in the cayman islands and my bf is suffering frm cvs he has an episode basicall every day whether he eats or not sometimes it takes only water to trigger him sometimes he wakes up n it starts out of nowhere. Any advice
It's disappointing that a patient can go to 3 UC Headache Centers for 20 years and they couldn't diagnose CVS.
Oh boy, but this sounds so absurdly familiar....I just had an episode last week after not having one for four years and went to the gp cause the new drug she prescribed did not work when my aura started up and I quickly went downhill.
My go to drug to bring this to a screeching halt is Phenergan, which I got a shot of.
Anyway, my gp has passed on the info about my episode to my gastroenterologist.
I now have an endless supply of Phenergan in the fridge and it will be interesting to see what gastro says.
I don’t have a diagnosis for this. But this literally sounds like exactly what I live with and have lived with for the last 10 12 years? At least 10 years. I didn’t develop it as a child though. Mine developed in my early adulthood. Maybe around 19 or 20. I wonder how one can obtain a diagnosis for something like this. Can you get a blood test for it or how does that work?
I wondered about the difference: I didn't have CVS cases in adults even haven't heard... Usually CVS occurs in children 1-7 years old. I'm confused because CVS in adults besides the reasons and pathogenic
Mine starts with vomiting at night and feeling sick waking up at 5 am with sore throat the 3 hours later non stop vomiting about 20 to 25 times a day and It only lasts a full day started when I was 8 and now im 13 and it still affects me
This happened to me over night. I never had problems and one morning I woke up and started vomiting until about noon. This happened everyday that summer and went away at noon to point I thought it was morning sickness but I wasn't pregnant at that time. I started taking prilosec which I think helped alot but not completely. My sister had died a few months prior to the first episode I had and I was also planning my wedding I lost so much weight that my dress was falling off me. It's been 4 years and I still get episodes not everyday anymore thank God but every month or every few months. I got pregnant with my second child and the episodes stopped completely until I wasn't pregnant anymore. The episodes got worse then they were I have a sulfer burp and tons of burping and then vomit consistently like 8 times every 30 minutes for hours and also diarrhea just as bad so I get dehydration very quick and usually need an iv and it sucks because I also have 2 kids to take care of. I've also had an endoscopy and it came back normal.