My 5 year old daughter was diagnosed lately with CVS (after more than 3 years of trying everything). However, they put her on Amitriptyline with no luck. I really appreciate it if one of the parents who say that their kid did not have episodes for a year or more after treatment(?) guide me in teh right direction. Tank you so much in advance.
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.
I've had CVS since I was 5 and now I'm 53. It is a horrible illness to have and with no cure or even any help from medication, it has killed me twice. I only got diagnosed in 2019 and looking back at my life makes me cry. Emotions are my kryptonite so I try not to have any. I was on benzos since I was 13 so it was easy to be a zombie. Being a zombie wasn't working for me anymore and I quit taking benzodiazepines in 2019. I spend alot of time, every day of my life, crying in pain, very nauseous and most days vomiting as well. I have never been a sleeper, I sleep at the most 3 hours, if I'm lucky. My mornings start at 4 am, I am usually sick until 10 or 11 am. If I don't come out of the morning situation, I go into a full blown episode and I've had those that lasted 16 days. CVS has taken my teeth before I was 35. I flatlined 2 times and now I have a pacemaker with a defibrillator built into it. I remember being young and being told 7 or 8 times every year that I had intestinal flu and nobody has it that many times or more every year. I am currently on CoQ10, L-carnitine, turmeric/curcumin capsules, B vitamins and I'm also on Amitriptyline but it doesn't really help. Since starting the medicine plan, I haven't had any episodes lasting longer than 8 days. So I feel blessed because I get a couple hours every day that I can do my chores and take care of my husband, he's in a wheelchair and he's in stage 4 kidney disease. CVS has made me a Warrior but it's also going to kill me. Please say a prayer that no one in your family gets CVS because it is a death sentence. While you're praying, please say one for me. CVS sucks!!!
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.
I've had cvs since I was 10 and some tips are to keep multiple anti emetics on hand, not just zofran. Also keep cold lift your shirt up it really helps
I had this years before a diagnosis. My parents searched for one, and it came after a very horrible episode (I was six at the time), when I was vomiting for two days straight to the point of dehydration and vomiting up blood, which resulted in a hospital ER visit. I would lose weight, and being a kid at 60 pounds back then, that was a serious issue. The episodes before the diagnosis were my worst cases, and ever since we got the diagnosis, we've been able to control it. Now, the episodes are rare and not as severe. Get a diagnosis if the symptoms are consistent. It will save you from a lot of pain and suffering.
I was diagnosed a few years ago. I don't remember when. But it was first encounter when I was just a newborn. I would have died from it. Due to vomit non stop. Not allowing me to breathe but we survive the worst of cvs
I was diagnosed as an adult in 2008. I also have Periodic Paralysis. If it wasn't for CVSA, and Dr. Boles information online, I would have died. Mine went into remission for 5 years. 6 weeks ago, it started again. I spent almost the whole time in hospital. My new GI doctor doesn't seem to care. I wish their were docs who cared.
I was just diagnosed with this a week ago. I have suffered with this for 15 years.... even being accused of med seeking. this sickness is sooooo awful... poor kids that have this.....
how long did it take to get diagnosed. I have had this for 14 yrs i know of but also had migraines yrs ago. I hope to be diagnosed quickly. everyone says I'm a ass most the time
I've had CVS for 10 years now. Unfortunately for me, I have no pattern, so my attacks come unexpectedly. I am on so many medications, and none of them seem to work. I can be sick for anywhere from 2 hours to 2 weeks. It's very hard with school. I've already missed 15 days, just within the first month of school. Everyone said that it would get better as you mature, but for me it is getting worse.
I have has CVS for 12 years that I can remember. I was undiagnosed up until last year. I have been on 2 medications every night for 9 months and I have had NO episodes!!! I used to get sick every 3 months or so. The only times I have felt sick is when I have forgotten to take my pills. Im on Elevil and Inderal. I hope this helps at least one other person. I had almost lost hope and now I can plan my life instead of this disease planning it for me :-)
Ive had CVS since I was a baby until I was about 10 years old. I went into remission for 9 years straight. I am now 19 and have been having episodes for the past year and have been FINALLY diagnoised with something I already knew I had. My episodes are spontaneous and dont have a pattern or cycle. So, I never know when I will have an episode.
My fiance has had CVS all her life. 40 yrs. I'm pretty sure she wasn't toking as a baby. She has a video she made on Facebook. Check it out. Her name is Cathy Clayton.
My Cyclic vomiting has been presenting sense I was 8 (I am now 51) Diagnosed 2007. Dr have found the cause of mine, but there is very little know about CVS, and even less known about the genetic disorder triggering mine (FMF Familial Mediterranean Fever). My daughter age 28 also has had it sense about 9 years old. She is only one of my 6 children with signs of it
I have had it since i was a baby, now i am 13. I was ill for days and it occurred every month. I have been to hospital multiple times. I once ended up on a drip. When i get ill we never know if its cvs or a bug.
I'm pretty sure my son has this hes 3 bad will have the spouts of vomiting every 2 months like clock work and after he vomits for about an hour hes exreamly weak and tired.
I have that disorder. It would always last a day with my nausea pill. Or. Whatever it is the first time I felt it was when I was playing minecraft on my computer with mods and then I felt a massive stomach ache. But then I realized I asked my mom to get me a bucket. Then. I gagged 3 times then I puked at the 3 gag. My gag is a weird cough. If I do it 3 times looking up and down from it. It means im gonna puke. But my pill is a dissolve pill under my tongue. It helps alot. Sometimes it takes 2 instead of 1. But it hurts. BAD. I haven't had it since months
But when I was in the car. I banged my head LIKE CRAZY BACK AND FORTH. it surprising worked then when I went into the hospital. I had to puke. And I rushed outside. And puked out the water I drank. And that was the last puke of my first episode of cyclical vomiting
my friend rung an ambulance two weeks ago cos I was being I was let out of hospital two days ago with no apparent cause still being sick I was diagnosed with cvs and im still being sick now
I’ve had it since I was 7 I have multiple episodes monthly just went threw a bad one.. I can feel it coming and it will wake me up early mornings I hate it so much we thought I would grow out of it but I never have.. I’m almost 37 now.. CVS is the worst nausea feeling you could ever think of and then times that by 100.. Pain gets just as worse too.. anxiety goes threw the roof and depression.. I don’t even wanna get into depression cause days can get very horrible and I don’t wanna even be here anymore cause I know when it does go away and day it will come back! I just want it to go away forever.. just gotta pray I guess..
For while it was thought that I had MD (CVS) myself, but it turned out to be something more acute rather than chronic. Nice clip. BUT! Once again as in many of these medical videos, too much emphasis or bias on women! This is almost portraying that CVS is female gender disease exclusively! Except for one sloe reference to male, hence ONE picture of BOY in Superman jacket, this clip only centred on girls and adult women, not one case of MALE sufferer had been featured or interviewed! Again, I am 24yo Japanese male and had something similar that turned out to be acute rather long lasting. But I must assume correct that many boys and men ALSO have CVS as well!
My 5 year old daughter was diagnosed lately with CVS (after more than 3 years of trying everything). However, they put her on Amitriptyline with no luck. I really appreciate it if one of the parents who say that their kid did not have episodes for a year or more after treatment(?) guide me in teh right direction. Tank you so much in advance.
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.
To quote an Internist, "Doctors seldom diagnose something they have never heard of."
I've had CVS since I was 5 and now I'm 53. It is a horrible illness to have and with no cure or even any help from medication, it has killed me twice. I only got diagnosed in 2019 and looking back at my life makes me cry. Emotions are my kryptonite so I try not to have any. I was on benzos since I was 13 so it was easy to be a zombie. Being a zombie wasn't working for me anymore and I quit taking benzodiazepines in 2019. I spend alot of time, every day of my life, crying in pain, very nauseous and most days vomiting as well. I have never been a sleeper, I sleep at the most 3 hours, if I'm lucky. My mornings start at 4 am, I am usually sick until 10 or 11 am. If I don't come out of the morning situation, I go into a full blown episode and I've had those that lasted 16 days. CVS has taken my teeth before I was 35. I flatlined 2 times and now I have a pacemaker with a defibrillator built into it. I remember being young and being told 7 or 8 times every year that I had intestinal flu and nobody has it that many times or more every year. I am currently on CoQ10, L-carnitine, turmeric/curcumin capsules, B vitamins and I'm also on Amitriptyline but it doesn't really help. Since starting the medicine plan, I haven't had any episodes lasting longer than 8 days. So I feel blessed because I get a couple hours every day that I can do my chores and take care of my husband, he's in a wheelchair and he's in stage 4 kidney disease. CVS has made me a Warrior but it's also going to kill me. Please say a prayer that no one in your family gets CVS because it is a death sentence. While you're praying, please say one for me. CVS sucks!!!
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.
I've had cvs since I was 10 and some tips are to keep multiple anti emetics on hand, not just zofran. Also keep cold lift your shirt up it really helps
I had this years before a diagnosis. My parents searched for one, and it came after a very horrible episode (I was six at the time), when I was vomiting for two days straight to the point of dehydration and vomiting up blood, which resulted in a hospital ER visit. I would lose weight, and being a kid at 60 pounds back then, that was a serious issue. The episodes before the diagnosis were my worst cases, and ever since we got the diagnosis, we've been able to control it. Now, the episodes are rare and not as severe.
Get a diagnosis if the symptoms are consistent. It will save you from a lot of pain and suffering.
Corinne The Anime that's scary
I have CVS I've had it for 22 years. I was diagnosed in 2008.
Aww im sorry
I was diagnosed a few years ago. I don't remember when. But it was first encounter when I was just a newborn. I would have died from it. Due to vomit non stop. Not allowing me to breathe but we survive the worst of cvs
Angie Crooks I was diagnosed when I was 3
My fiance has had CVS all her life. 40 yrs. Check out her video on Facebook. Her name is Cathy Clayton.
I was diagnosed as an adult in 2008. I also have Periodic Paralysis. If it wasn't for CVSA, and Dr. Boles information online, I would have died. Mine went into remission for 5 years. 6 weeks ago, it started again. I spent almost the whole time in hospital. My new GI doctor doesn't seem to care. I wish their were docs who cared.
cbd oil and your problems will leave forever
Hell on earth.
I was just diagnosed with this a week ago. I have suffered with this for 15 years.... even being accused of med seeking. this sickness is sooooo awful... poor kids that have this.....
how long did it take to get diagnosed. I have had this for 14 yrs i know of but also had migraines yrs ago. I hope to be diagnosed quickly. everyone says I'm a ass most the time
Jason Jennings I hope you get the diagnosis soon
I've had CVS for 10 years now. Unfortunately for me, I have no pattern, so my attacks come unexpectedly. I am on so many medications, and none of them seem to work. I can be sick for anywhere from 2 hours to 2 weeks. It's very hard with school. I've already missed 15 days, just within the first month of school. Everyone said that it would get better as you mature, but for me it is getting worse.
How are you doing now??
40 years of this took 20 year for my diagnosis hospitalized more times than i can count
I have has CVS for 12 years that I can remember. I was undiagnosed up until last year. I have been on 2 medications every night for 9 months and I have had NO episodes!!! I used to get sick every 3 months or so. The only times I have felt sick is when I have forgotten to take my pills. Im on Elevil and Inderal. I hope this helps at least one other person. I had almost lost hope and now I can plan my life instead of this disease planning it for me :-)
I have CVS. If there is a test I'd love to try it - I live in UK. Anyone know if/how we can get tests over here?
Ive had CVS since I was a baby until I was about 10 years old. I went into remission for 9 years straight. I am now 19 and have been having episodes for the past year and have been FINALLY diagnoised with something I already knew I had. My episodes are spontaneous and dont have a pattern or cycle. So, I never know when I will have an episode.
That doesnt sound like CVS kiddo.... Just putting that out there. Dont self diagnose until you complete at least 8 years of formal medical study.
+Kyle Currier I didnt self diagnoise. I was diagnoised by a doctor.
I love Chandra Wilson :)
I have also been told that CVS could be mistaken for cannabinoid hyperemesis syndrome. Is this true? How do you know which one you have?
It says that but it's most common in women and children at such an early age I doubt they were on cannabanoids
If hot showers help you than it’s CHS. If not then it’s something else like CVS
My fiance has had CVS all her life. 40 yrs. I'm pretty sure she wasn't toking as a baby. She has a video she made on Facebook. Check it out. Her name is Cathy Clayton.
My last attack was Friday after 3 years of it not happening.
My Cyclic vomiting has been presenting sense I was 8 (I am now 51) Diagnosed 2007. Dr have found the cause of mine, but there is very little know about CVS, and even less known about the genetic disorder triggering mine (FMF Familial Mediterranean Fever). My daughter age 28 also has had it sense about 9 years old. She is only one of my 6 children with signs of it
I have had it since i was a baby, now i am 13. I was ill for days and it occurred every month. I have been to hospital multiple times. I once ended up on a drip. When i get ill we never know if its cvs or a bug.
I'm pretty sure my son has this hes 3 bad will have the spouts of vomiting every 2 months like clock work and after he vomits for about an hour hes exreamly weak and tired.
Thats the key for cvs the reoccurring on schedule
I have that disorder. It would always last a day with my nausea pill. Or. Whatever it is the first time I felt it was when I was playing minecraft on my computer with mods and then I felt a massive stomach ache. But then I realized I asked my mom to get me a bucket. Then. I gagged 3 times then I puked at the 3 gag. My gag is a weird cough. If I do it 3 times looking up and down from it. It means im gonna puke. But my pill is a dissolve pill under my tongue. It helps alot. Sometimes it takes 2 instead of 1. But it hurts. BAD. I haven't had it since months
But when I was in the car. I banged my head LIKE CRAZY BACK AND FORTH. it surprising worked then when I went into the hospital. I had to puke. And I rushed outside. And puked out the water I drank. And that was the last puke of my first episode of cyclical vomiting
But it has to meet the exact conditions. For me. Excitement. Sadness and anger in one day. And the next day. It happens
Where do you get the test?
my friend rung an ambulance two weeks ago cos I was being I was let out of hospital two days ago with no apparent cause still being sick I was diagnosed with cvs and im still being sick now
I have this
Pure torture , 10+ years of brutality
i have cvs its awful :-(
I can sympathize. best of luck to all of you. we cvs sufferers love you
What is this test and how do I get it?
Same thing for me Abby
i have that to
I’ve had it since I was 7 I have multiple episodes monthly just went threw a bad one.. I can feel it coming and it will wake me up early mornings I hate it so much we thought I would grow out of it but I never have.. I’m almost 37 now.. CVS is the worst nausea feeling you could ever think of and then times that by 100.. Pain gets just as worse too.. anxiety goes threw the roof and depression.. I don’t even wanna get into depression cause days can get very horrible and I don’t wanna even be here anymore cause I know when it does go away and day it will come back! I just want it to go away forever.. just gotta pray I guess..
I would honestly kill myself immediately after diagnosis. My respect goes out to everyone with this.
For while it was thought that I had MD (CVS) myself, but it turned out to be something more acute rather than chronic.
Nice clip. BUT! Once again as in many of these medical videos, too much emphasis or bias on women! This is almost portraying that CVS is female gender disease exclusively! Except for one sloe reference to male, hence ONE picture of BOY in Superman jacket, this clip only centred on girls and adult women, not one case of MALE sufferer had been featured or interviewed! Again, I am 24yo Japanese male and had something similar that turned out to be acute rather long lasting. But I must assume correct that many boys and men ALSO have CVS as well!
Going VEGAN reduced my episodes