The Cyclic Vomiting Syndrome Association (CVSA) serves the needs of cyclic vomiting syndrome (CVS) sufferers, their families, and professional care givers by raising awareness and providing education and support to those affected by cyclic vomiting, abdominal migraine, and related disorders, while advocating for and funding research toward a cure. CVSA wants to inspire hope, awareness and education of cyclic vomiting syndrome with personal experiences that include tips and tricks of living with CVS, but professional presentations that can help support our mission and community. We hope that you will share information about our organization, cause and the videos that have meaning to you.
I think it must be a reason for this. I can tell you for example when you use cannabis it slows down your peristaltic process and have obstipation as a result then you must vomit. Gall/ Kidney stones, appendicitis and colon/stomach problems make vomiting. Some must vomiting when they have migraine. I need to shower when I have to vomit.Sensitive people wich are very emotional are effected from this disease too.
amazing presentation, individualizing treatment based on complex genetic variants is very difficult but absolutely the right approach, unfortunately our current health insurance model is unlikely to cover any of what he is doing, it would be amazing to hear a conversation with him and the Harvard psychiatrist Dr. Chris Palmer the author of Brain Energy, who has had a lot of success improving mental health with a ketogenic diet to improve mitochondrial energy production in the brain. Thank you CVSA for this presentation, please bring him in back in the future.
My 17-year-old daughter has had all the symptoms for the last two years. It comes and goes. The only thing is, she doesn't vomit all the time. She will occasionally vomit. But not non-stop. Could it still possibly be CVS?
The number of times I was told this sickness was from smoking pot. Even tho I wasn’t smoking pot the first 20 years I suffered with this before I had to go to the er. I have ptsd from the crappy drs I’ve had to deal with about this.
We just finally after 3 years of fighting found out today that my 8 year old daughter has this and because of the way this has been going the doctor does not think that she will be one of the kids that will grow out of this but we have finally gotten an answer after so many many many different doctors and appointments and I cannot tell you how much of a weight was lifted from me the moment our doctor said “we finally have a diagnosis!” It was so overwhelming in a happy way that now we know and can try to fight this thing, this monster, with the right weapons and get her back to being a normal 8 year old little girl! Thank you Chandra Wilson for being an advocate for this and in the coming weeks while watching everything you have put out there about this I cannot wait to learn more about it.
Thank you so much for this! My son I now realize has coalescent CVS. He has had severe nausea for a year he can barely get out of bed most days. He has episodes of severe vomiting as well.
Hi everyone. I just found this video. I've been suffering with CVS for over 20 years. I'm a severe case. I've had episodes that last over 2 weeks long. I was at a point that I was being hospitalized at least once a month. I was symptomatic every single day from the moment it woke me up to the moment I was able to fall asleep. CVS was controlling my life. If you are suffering I will tell you this: your main triggers are: lack of sleep, fasting/not eating enough and stress, good or bad. We all have specific food triggers as well. Haldol is not a recommended treatment for us as it is an antipsychotic medication with horrible lasting side affects and its actually ment for cannabinoid hyperemesis syndrome which is often mistaken for what we have. My life has been given back to me with Topirimate 150mg. It is a migraine medication which makes sense seeing as CVS is now known to be a derivative of migraines. I beg you all to find a doctor to treat you with it as it has changed my life. I only have a life because of it. I started it in September of 2023 and I haven't had an episode since and I haven't been able to say that in 20 years. I'm willing to give any of you my personal info to help you with this because CVS untreated can ruin your life but it doesn't have to. I wish you all luck.
Anyone suffer with cycles of horrific nausea but can’t be sick? My cycles last up to two weeks and I’m totally fine in between. The nausea isn’t just “feeling a bit sick”. It’s EXTREME. The only way I can describe it is as such a severe discomfort that you can’t think straight, you’re lying on the floor squirming and begging for it to end, trying to make yourself sick for relief, and if there was a button to end it all you would press it! No anti emetics work. It’s a living hell.
Anyone suffer with cycles of horrific nausea but can’t be sick? My cycles last up to two weeks and I’m totally fine in between. The nausea isn’t just “feeling a bit sick”. It’s EXTREME. The only way I can describe it is as such a severe discomfort that you can’t think straight, you’re lying on the floor squirming and begging for it to end, trying to make yourself sick for relief, and if there was a button to end it all you would press it! No anti emetics work. It’s a living hell.
I just asked if that was possible in another comment! My 17-year-old daughter will spend a week feeling extremely exhausted extremely nauseated to the point that she can barely eat. And every now and then she will actually throw up but mostly it just feels like she wants to throw up. The first time was 2 years ago.that lasted for a week. Then it happened about 6 months ago, now she's going through it again. Each time less about a week.
@@joes-girl4eva291I finally found my cure, at first I'd take a Zanax and go to sleep. I'd sleep it off. Then I took Topamax daily, it worked. Also Vyvance has worked. It took me 6 docs and many years for a diagnosis. I had to find my own meds to solve it. When I was in a desperate situation, urgent care gave me IV Valium.
Are there groups where people share their experiences? After being sick for seven years I was just diagnosed with CVS, but after years of no answers I still feel skeptical. I guess I am seeking validation of having the disease from others who suffer.
Hey. I just saw your comment. I'm 37, been diagnosed since 17. I'm a very severe case and I have so much experience. My mother and I have been doing extensive research on top of 20 years of living through it. I'd be happy to share my contact information to help you. I was at a point of being hospitalized at least once a month but my GI started me on Topirimate in September of 2023 and it's changed my life. I'm on a mission to help anyone and everyone I can. CVS once controlled my life but not anymore. I'm here to help if you want and I really wish you the best.
@@KyraLucia I would contact the Cyclic Vomiting Syndrome Association to see how you can use your experience to support others! Check out their online support groups and interact with others there! cvvsaonline.org
@cyclicvomitingsyndromeasso8646 thank you, I will definitely do that. I feel like I have so much to share and so much support to offer after so many years of suffering. I never thought I could feel the way I do now and I just want to use my journey for good. I know what works for me might not work for all but there's hope for all of us. Thank you kindly 🙏
If you haven't already, reach out to the CVSA office to see if they can recommend a knowledgeable physician near you. Find info or a form to request on the cvsaonline.org website!
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I have yet been found a diagnosis for me because the few Drs I have seen, do not either understand CVS or do not believe it. I am 42yrs old now. I started this SEVERE vomiting at 23yrs old. It happened evert month or 2. I'd throw up every 20mins or so, for 4 to 6days. I was In and out of the hospital, 5 or 6 times a year. I could go more but honestly, I try to just get through it and now, the last 10yrs, I know the process and the local hospital does not seem to know what to do with me. Ill be so dehydrated that my hands cramp up and I tingle all over. Yet the Drs never tell me what they think it is. 20yrs ago they gave me nausea meds in my veins that burnt soo badly and it would bust my veins. Now, they do not give that medicine through IV anymore because it ruins your veins. That is what happened to me. For the 1st 10yrs I got soo much through my IVs, this medication, that busted my veins,and literally now I have none. So the past 10years I almost always need an ultrasound machine to find a vein, to start an IV and even do a midline, to get blood and get my fluid and meds. But before that, they try n try to stick me with 4 to 6 nurses, trying to find a vein 1st. It does not work. Even after I say that my veins are busted. It is not ok. But about CVS, about a year n half ago, going through my research of what could be wrong with me, CVS came up. It was like a BRIGHT LIGHT shined bc I hit every symptom. I do understand it is hard to diagnose but going this long, struggling this long, throwing up n suffering this long, to FINALLY see something you can look at and say " that is me". Again, it has been VERY hard, in my small town to get this diagnoses. I am fairly close to Columbus Ohio. I have heard of a specialist there just recently. I PRAY I can get this diagnosed so when I have episodes, the Drs know what what it is, know what to do. Plus possibly, get to a better "normal life". I saw this video and recognized you from Greys. I think it is AMAZING SO AMAZING, you are speaking out about CVS. I PRAY for your daughter bc I know how HARD, TOUGH, IT HURTS, the throwing up is intense, I would NOT wish it on ANYONE!!. Again , thank you for your video and with your platform I hope others see more how this disorder is something that NEEDS more attention. My goodness Lord, it is sooo very tough. Thank you again and bless you for speaking out ❤❤❤❤❤
Thank you so much for your studies in your information! I am so grateful to cvsa my daughter was diagnosed 10 years ago at 18 a healthy child up until then but has had chronic abdominal migraines and vomiting 5 days every two weeks moshe's finest a month and we will never give up hope for a cure. Cvsa Warriors are the bravest and strongest and most discriminated people with chronic illness even doctors don't understand like you said sometimes it's very hard I feel it's taking a turning point with all this information in the last year especially thank you thank you thank you sending love and prayers for wellness to all
when I was a kid I tried recreational drugs now when I get an episode I use opiates to knock me out so h0pefully I can wake up sort of re-set, this has only worked once out of about fifteen times
How do you find the help. How do we get the doctors to listen? That’s been the hardest part of dealing with this. Just getting the doctors to listen Has been an uphill battle.
My daughter has cvs during first day of her menstruation. Ondasterone, doxinate, and ganatone a week before thrice a day also didn't work..she has her final exam on Feb 24 which falls on her period..I am hepless...no medicine seems to work..please help
Have you considered going to the CVSA monthly support call or contacting the CVSA office at cvsa@cvsaonline.org to get more information or have an extended conversation about your daughter's struggles?
Prescribed THC for CVS since I dealt with it before I even touched cannabis. Cannabis stops the vomiting and numbs the abdominal pain. It also regulates temp for me which keeps me from having GRAND MALS during my CVS attack. It depends on the patient.
My daughter (f/31) is currently in week 3. Urgent care, ER, and 5 nights under observation w/IV therapy. Antivan, zofran, protonix, lexapro and promethazine. She hasn’t had a meal since august 31. No bm for 10 days. Very drained and exhausted. No providers understand this. Sadly…
So I'm still learning about CVS, my daughter who has Down syndrome has been diagnosed with this. We are trying the amitripline and is up to 30 mg and still having severe episodes. It gets so so bad. I've tried finding someone who has dealt with this CVS and Down syndrome. Any one please help...
I'm sorry to hear this,.... so much for your daughter and yourself to deal with! My son is my cvs carer, also often 3 times monthly, I couldn't get through without him! You are doing quite a job, even without proper support!
Hope you are doing ok.... I think she has more stomach issues. So I'm having to take away foods and make diet changes, of course for us all. She actually in a episodes now been going on since Christmas Eve.
I am 43 years old and have had cvs since I was seventeen. I have had numerous ER visits, primary care, GI doctors and have yet to be treated or find a doctor that’s truly knowledgeable with the specific nature of CVS. That said is there a way that you can be contacted for consult, cash/insurance? I would absolutely love to figure this nightmare of a syndrome out, as I sit in the bath recovering from my most recent episode of about 56 hours. Also my episodes have progressively became worse and more frequent as I age. I’d estimate I’ve had a minimum of 100 episodes, and with being treated as a drug seeker, which has never been stated but eluded to, so for years my wife and I just load fluids to vomit and hot shower, which don’t do much to negate symptoms or shorten the episodes. I would absolutely love the chance to speak with an educated doctor such as yourself for a consult? If that’s in anyway possible I would appreciate the opportunity and as I said am willing and wanting to pay for it. Thank you for the information you have provided on this misunderstood ailment.
Did you find help yet...Debbie's An angel but the doc i went to lied about multiple forms of treatment i got there and doc said just 1 treatment for all. Im 6'3 130 he had my heartbeat upto 166 and told me i needed more. Unfortunately docs cant tell u what works anymore. Its very dangerous the give so many ppl this medication without a cardiac assessment test. Only 1 pill works for me and unfortunately i had to do my own research to find it. I can eat anything without vomiting the heat dosen't trigger noise ,weather, the sun. If your still stuck LmK it sucks to suffer like this. God bless debbie and down with the bastards that have let us suffer for so long
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.
That is one very important reason to have the rule-out testing done. Many conditions can be misdiagnosed as CVS and CVS misdiagnosed as something else. Very important information to share!
It took 51 and a half years for me to get a diagnosis.... I had to get my partner to video tape an episode ( the beginning, the middle and the end) he sent it took a mystery diagnosis website, where doctors from around the world watch it, then they talk among themselves, ask a few questions and then give you a diagnosis, but then you have to get your doctor to confirm it... I live in Canada and the doctors here are either completely clueless, or their personal bias against the medical use of marijuana, even when prescribed by a doctor or specialist, prevents them from seeing the true cause of my illness... They say " just stop smoking pot, and it will go away" as if my parents were blowing me bong hoots in my crib...and because of their bias against drug use, they refuse to give you ANYTHING, not even a iv line, pain is your punishment for being a 'drug addict'...that's how nasty they can be to anyone using medicinal marijuana.... I hope you are able to get a diagnosis for your child sooner than I have...as these episodes are deadly... Amitriptyline 25 mg works for me, I had my first full blown episode in 16 months, and it was a bit milder than normal...my abort meds we are still working on a program, so far I haven't found anything besides Ativan that works to put me to sleep...a warm bath and watered down ginger ale or pop cycles help...
Been dealing with CVS for years and only recently found out that's what has been bothering me. I'm really happy to have found these videos and will be subbing and watching them all.
My husband and I were just talking about starting a channel about cvs . So the fact I found this is awesome. I would love to talk about how he deals with it and how I care for him with it. To show and educate everyone.
Very good stough here. I have been plague with this disorder my whole life Im 52. I thought I was on to something when I learned I had mthfr , mtrr, mtr gene variants which causes persistant high homocysteine levels. I thought that might have been my problem. watching this broadcast I think it might more of a contributor. I started taking methylfolate with other B vitamins I feel better than ever. I need to check if I have the variants that Dr. Boles says in this episode. I going to start taking the vitamins that Dr. Bole suggested. Thanks!
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.
This is exciting work by such a great researcher like Dr Levinthal! My daughter has had CVS episodes for 30 years and we've stopped looking for a miracle drug and been approach it using the same "bucket" or "pie" approach as migraineurs. Dr. Levinthal brings such expertise to pull this theory all together. I hope CVSA will assist Dr Levinthal in getting more funding for his much- needed research efforts. I would also love to see CVSA establish a relationship with a center of excellence in each state so we can get researchers and diagnosticians in each state to support CVSers and their drs, instead of each family having to fight their way multiple drs to get effective and sympathetic treatment. Strength in numbers, such as we have, to gather data and support good research like Dr. Levinthal's!
