Before I even wake up fully, my ears register the sound of my twelve year old daughter throwing up. It is such a familiar middle of the night sound for me that it has ceased to be alarming. She has been throwing up on a regular basis since she was 2 years old, in episodes that come and go, usually lasting one to two days. The vomiting that comes with these episodes is violent, frequent, and often accompanied by severe abdominal pain. Without medication, she will vomit every 10 to 15 minutes for hours; luckily, for the last few years, we’ve sometimes been able to successfully treat these episodes with medication.
Sometimes her episodes last longer, like one recent very bad episode where she was sick for 6 days on and off. At times during that episode the vomiting was controlled by medication, but not always. When her medication didn’t work, she would lie on the bathroom floor and moan, and say “Mommy, help me,” or worse, “Mommy, I can’t live.” We have been told that the medications we give her—prescription Zofran, over the counter dimenhydrinate (Dramamine), and Tylenol and Advil—are the only options, and that there’s nothing else we can do. But when I see her suffering, I have to believe that there must be something more that can be done, because nobody should suffer like that, especially not a child.
When she was younger, the episodes would come every month or two. She is my oldest child, and for a long time I assumed she was just very susceptible to getting stomach flu, and that she was severely affected every time she got a stomach virus. As my other two children got older, and I realized how unusual the severity of her vomiting was, and the frequency of her episodes increased, I started to suspect it was something bigger than just stomach flu. I mentioned my concerns to her doctor, and he agreed, and suggested it might be cyclic vomiting syndrome.
Cyclic vomiting syndrome, or CVS, is a poorly understood, and under recognized disorder. Although it was originally thought to be a pediatric disorder, it is now known that it can occur in all ages, and that it is more common than previously thought. It is characterized by episodes of severe nausea and vomiting that alternate with periods with no symptoms. Some patients with CVS have symptoms in addition to nausea and vomiting during episodes such as headache, dizziness, fever, sensitivity to light, and diarrhea. For each individual with CVS, the episodes are similar to each other: they generally start at the same time of day, include the same symptoms, and last the same length of time. For my daughter, she always started vomiting in the middle of the night or early in the morning, it lasted about a day, and occurred every month or two. As she gets older, everything about her episodes has become less predictable. They have sometimes lasted longer, or clustered in groups where she can have one episode per week for three weeks, then nothing for three months. CVS is thought to be a part of the migraine spectrum, and sometimes patients are able to identify things that trigger episodes such as certain foods, illnesses, cyclical hormone changes, stress, or fatigue.
Cyclic vomiting syndrome is difficult to diagnose, because there is no specific test for the disorder. Therefore, it must be diagnosed by excluding all other possible reasons for the vomiting and other symptoms. My daughter was referred to a gastroenterologist and an endocrinologist. In addition to her episodes of vomiting, she is very small for her age. After a workup by both doctors, they couldn’t find any reason for her vomiting or her small size. Her gastroenterologist was reluctant to offer any diagnosis at all, even when I asked about CVS.
Because there is no physiological defect that with CVS can be measured by the medical tests we have currently, many times patients are told that their problems must be “in their head,” or just caused by anxiety, depression, or other mental health problems. Similar attitudes are faced by patients with many other functional disorders, which are diseases where no specific defects can be observed by medical tests. Functional disorders include fibromyalgia, irritable bowel syndrome, migraines, chronic fatigue syndrome, complex regional pain syndrome, and restless legs syndrome. It is short-sighted and insulting to patients to conclude that their problems are not real just because current diagnostic tests can’t detect a defect, and in many cases disbelief or dismissal by medical professionals leads to long diagnostic delays, during which time the patient suffers needlessly without treatment.
My daughter was faced with a version of this attitude, when for a time her gastroenterologist seemed to question repeatedly whether she might have anorexia or bulimia. The concern is legitimate, and it is important to rule out the possibility; however, the issue seemed to come up over and over again for us despite our answers. My daughter was asked if she ever didn’t eat because she was worried about getting fat, and she looked very surprised, because she’s worried about the exact opposite—she would love to be bigger. Clearly she doesn’t have bulimia, when she is waking up in the middle of the night and vomiting in her bed, and writhing in pain on the bathroom floor. Sometimes it gets very frustrating when doctors don’t seem to listen to and hear the answers that they are being given, because they have other ideas that conflict with what you are saying.
We were lucky, because my daughter’s pediatrician mentioned CVS as a possibility very early on. Otherwise I don’t think we would have any idea what her diagnosis might be, because her gastroenterologist was content to just rule things out based on test results, and not offer any opinion on what the problem actually is. It has been beneficial for us to have what we think is a likely possibility for a diagnosis, because it has allowed us to figure out strategies for helping her, including trying to avoid her triggers. The medication that was prescribed by her pediatrician is very useful for helping to manage her episodes when they do happen, although it isn’t as much of a complete solution as I would like, and I am still searching for additional treatments that may help. However, her episodes are less debilitating than they used to be thanks to the medication, and overall she is thriving despite her illness: in between episodes she is a happy, healthy twelve year old who loves figure skating, soccer, Glee, and texting her friends.
I have had CVS in severe form since the age of six. We have a major HMO in CA that employs medical staff that is ill-equipped to address this functional disorder. I was with my HMO for 24 years before a diagnosis, with the suggestion coming not from a physician, but instead from a pharmacist who advised me to inquire further about CVS. This HMO bounced me from department to department, including psychiatry when I stated it started about the same time early morning for each of the episodes and had an 8-11 hour prodrome prior to onset of vomiting. I violently vomit, usually for 3 to five days. The vomiting is so frequent and unrelenting that sleep is not possible. The longest episode was 8 days. My HMO sent me to a sleep study, rather than a GI. I was told by me GI at my HMO that he couldn’t do anything for me. My back teeth have been affected by the hydrochloric acid from the bile in the vomitus. I have 2 root canals scheduled next week because of the damage. My throat bulges, bloats, huge lumps appear from mid-chest to to jaw and I bruise throughout this section from the force of the vomiting. My chest feels as if it’s coming apart and the pain is so intense it hurts to take a breath. There is some blood but I’m not certain if it’s from irritation or a more complex internal issue. With the bulging and bruising it’s fair to suspect an unpleasant determination. I am spent during an episode, unable to sit up. I can’t respond to phone calls or speak.
Raising hormone levels, adding CoQ10 with L-Carnitine has lengthened the time between episodes but not the severity of the episodes. I have injectable IM Tigan and injectable Zofran, but the Zofran stopped working. Tigan causes nausea, drowsiness, and shaking, counter to my needing to subdue symptoms so that I would be able to drive. The Tigan was given for nausea, prior to the realization by the HMO neuro that I had a diagnosis of CVS. No, one department does not communicate with the other. In fact, I was told by ER never to come back, prior to my diagnosis. My neuro? She told me I had been vomiting since I was six-years-old and that I “Should be used to it by now”.
I’ve begged for an outside referral to a specialist familiar with CVS. After the last major bruising and swelling episode the HMO GI stated that he would like to perform and endoscopy, although he has no familiarity with CVS or the outcome if I rupture while under anesthesia. I was bounced back to neuro to whom I sent photos of my last episode. I recommend this to help them to understand. My neuro said that I looked like I was having an alergic reaction. I looked like I was in the morgue in one photo. I replied that I have CVS and it is a neurointestinal functional disorder, borne in the brain, manifested in the gut. She just sent a referral to an allergist? Please stay away from HMOs. They are an insurance company that is also a medical provider. It is not in their professional best interest to provide an outside referral. The HMOs loss ratio and bottom line are impacted, which in turn affects the quality of the care of the patient.
Have you considered thiamine? In addition to coQ10 and l-carnitine contributing to CVS, low thiamine may also initiate CVS and with CVS, if one wasn’t low in thiamine to begin with, one often becomes low with the excessive vomiting. Look into the articles on thiamine on this and other sites. It might help.
Reading this has given me new insight to my now 4 year old daughter. I suspect this is what she has. Although I have questions for all of you suffering. Does anyone know if they or their loved one with CVS have a positive gene mutation for MTHFR gene?? If you went through all the evil testing they do, I’m sure you were tested for this. And the doctor could of easily of but told you. My daughter had experienced this random throwing up since 2. She has not grown nor gained weight for over a year. Most of this is due to that gene mutation and her body not processing folate. But when you add CVS to mix it’s a horrible combo. I’ve been researching the links between the 2. So if anyone can let me know. I would highly appreciate it!! Thank you.
I have cyclic vomiting syndrome. I was diagnosed only a few years ago but I have been experiencing episodes for the past 8 years. I do notice a strong correlation between my hormonal status and my episodes. I am very in tune with my body. I am an accomplished natural athlete. My triggers include anything that opens ananamine receptors- chocolate, Marijuana, tylenol, blissful emotions… the only treatment that seems to help currently is IV reglan and fluids. I used to take a herbal drink mix at onset that would seem to stop an episode called “herbal zap”, it stopped working for me about 1 year ago unfortunately. I just thought I would share some of my experience in hopes that it helps someone. I wish there were more research on CVS and doctors who take it more seriously.
I just recently turned 22 and around two weeks after my 22nd bday is when this all started for me. I’m not sure if it is CVS or not but it is the best answer I’ve found so far. At the time of this comment I’ve been sick for 2 weeks and spent two nights in the hospital. I’m exhausted. I feel like I can’t eat and I haven’t been able to stop it, slow it down, or make any improvement. I’m taking odansetron 4mg at this time and it works sometimes. The doctors keep saying food poisoning but I don’t think that’s correct. The antibiotics that the doctors gave me I’ve since had to stop taking simply because I felt they were making me worse not better. Idk what to do and I can’t afford to keep going to the hospital or doc appointments. I’ve had a few friends suggest green tea. Another suggestion was vitamin c pills and a headache nasal spray. I know I was pretty sick as a kid but as I got older it stopped. I used to get really bad headaches sometimes for days at a time and normally several times a week. But since I’ve been sick I haven’t had a headache at all. I really want some answers and I know not everyone is a doctor but maybe someone with CVS has had a better experience with different meds and knows one that might work.
Zoey,
I found that cycling vomiting syndrome (CVS) is also a prodrome that often appears years before the onset of migraines. I had cyclic vomiting syndrome when I was about 10 years old through about age 14 or so (I no longer remember the details) and started migraines in my mid twenties. There are many migraineurs who start with CVS, then follow with IBS, and often anxiety and other conditions, such as Mal de Debarquement (sea-legs dizziness), etc. These are all described in my book Fighting the Migraine Epidemic: A Complete Guide” that I highly recommend you read.
Good luck,
Angela
There are a lot of possible medications for CVS, but your doctors will probably want to do a bunch of tests to rule out other possible causes before treating it as if it is CVS. In the meantime though, 4 mg zofran is a very low dose–I would ask your doctors if the dose can be increased. As an example, my daughter has been taking 8 mg since she was 10 years old. 4 mg is a low dose for an adult. You can also try intramuscular injections of dimenhydrinate (the same medication as dramamine) if it is available to you. We can get it over the counter here in Canada. Sometimes IV or injected medication works better for CVS.
Hello,
My name is Kristen and at the end of 2015 I was told I have CVS before that I was vomiting for more than 5 years. It started in June of 2009 when I found out I was going to be a mother. In June of 2009 I started vomiting 20-30 times a day. I was seeing a family doctor and I told her every time I was seeing her that I was getting sick so much and all she would say is that it’s normal. By Aug of 2009 I was 100lb I was 130 when I it started I was going to ERs weekly and every time a different one in hopes someone would really look at me the last trip to the ER was the worse in Sept 2009 I was not even 95lb and I ended in the hospital for 5 weeks and seeing doctor after doctor to find out what was going on well they got it to where I was fine till I gave birth. Shortly after I had started vomiting again and the only time I didn’t was when I was sleeping I wasnt eating and when I did not even a min after I was in the bathroom vomiting again. In 2013 I had to go in for a disk replacment and it was hard and on me, I stayed i the hospital for 3 days and as soon as I went off the iv and went home I was vomiting all over again. In 2015 I had to go back and see my gi and in past years he never could find anything wrong well this time he had been looking at things that it could be and that was when I found out that I had CVS and he put me on Amitriptyline as of right now Im taking 100mg at night and it has been working ever since. Now im 27 and will be 28 in june I’m wanting to have another baby soon but im scared and I dont want to have to go through the same thing all over again. Can you give me any advice?
Are you able to keep taking your current medication during pregnancy? You may have a different experience this time, since your vomiting is under control. You could also consider adding the supplements coenzyme Q10 and L-carnitine, as described in this article: http://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/
So glad I’ve stumbled on this website. Our son’s symptoms don’t seem quite as severe as what most of you sound like you’re dealing with, but they’re still difficult on him. He is now 13 and his first attack was when he was 18 months old. He ended up in the ER that evening. Every one of his episodes is exactly the same. Every time he gets a cold, regardless of how severe it is, he will start throwing up before the cold symptoms even surface. It always starts in the middle of the night or early morning hours. He will start throwing up about an hour apart for 24 hours. He won’t talk to us because he can’t open his mouth because his throat is full of a crazy thick mucus. When he was little I remember pulling it out of his throat because he was choking so bad on it. Now that he’s older and we’ve been down this path many, many times it’s not as scary each time. We know that it only lasts 24 hours and that he’ll be back to normal in a day or so. One thing we stumbled on by accident was taking Emergen-C packets. He was homeschooled all through elementary school, but when he got older he wanted to try public school…so we let him go, but dosed him up on Emergen-C every day, trying to ward off him getting as many colds since I knew how he’d react to them. He took a packet every day in his water for 4 years. During that 4 year time period he would get colds and not throw up. We thought he must have outgrown whatever was causing him to throw up when he’d get a cold. Well this year he went back to home school and stopped taking the Emergen-C and guess what? He’s had 2 colds now since Sept and thrown up each time. He has decided he’s going to be very diligent on taking the Emergen-C packets every day again. I don’t know how it worked or what it has in it that works, but for him, if he’s on it he doesn’t have the episodes even though he has the same triggers (his being a cold).
I wanted to share my son’s story as maybe it will help someone. And maybe one of you has symptoms like his. We’re talking to his dr next week and see if there is anything else we can do to help prevent the episodes. I so hope his don’t get any worse as he ages. As miserable as he is, at least it’s only for 24 hours at a time now.
Three of the four people in our family have suffered from gagging & cyclic vomit syndrome for years. I believe our bodies are being blasted from all the chlorine, flouride, antibiotics, and steroids and hormones in our water and food.
The only things we’ve gotten relief from are a lot of prayer, magnesium glycinate, and apple cider vinegar. My husband also had emergency gallbladder surgery and feels much better. We are learning to manage stress and wonder why more people aren’t talking about hormone overload in this forum?
I have my son who suffer from CVS for 7 years.. Now he feels so much better because we found an excellent pediatrician and GI doctor who helps us with a strong medication. Lorazepan, zofran at the same time is a treatment that works for my son and help him to deal with this rare condition. He only takes that medicine as an abortive medicine. He takes supplements everyday CQ10, Lcarnitine, and is really helpful. If the patient suffer from constipation you can talk with your physician about probiotics.
I’m glad you were able to find something that works!
I ALSO HAVE HAD CYCLIC VOMITING. I HAVE FOUND I HAVE A GENE MUTATION MTHFR 677 WHICH MEANS CANNOT METABOLISE THE SYNTHETIC FOLIC ACID IN BREAD, CEREALS & SOME MULTI-
VITAMINS. PEOPLE WITH THE MUTATION CANNOT DETOX PROPERLY. I HAD REMOVED MERCURY
FILLINGS FROM MY TEETH. ONLY EAT ORGANIC BREAD WITHOUT THE SYNTHETIC FOLIC ACID.
PURCHASED A WATER FILTER TO REMOVE FLUORIDE, CHLORINE ECT FROM DRINKING WATER.
ALSO TAKING A DIETARY SUPPLEMENT I PURCHASED ON LINE CALLED CHEM-DEFENSE. MADE BY
SOURCE NATURALS. IT CONTAINS MOLYBDENUM/GLUTATHIONE. I FEEL I AM ON THE RIGHT TRACK. STARTED THE CHEM-DEFENSE EARLY FEB 2017 & EACH SICK DAY SINCE THERE HAS BEEN A BIG IMPROVEMENT IN MY SYMPTOMS.
Hello!!!! My daughter is 4. Been trying to figure this all out for 2 years now. She has the gene mutation MTHFR. Which mean she can’t process folate. Thank you for your post. This is what I’ve been trying piece together. These components.
My 22 yr old daughter was diagnosed with CVS when she was 5. Fortunately one of the pediatricians in peds practice was one of the few CVS experts in the country at the time. Our daughter was treated with Zofran and an OTC med, maybe Prilosec? After 7 bouts of vomiting that lasted 4 to 6 days the meds prescribed put her into remssion. Rachel was a very slow, picky eater for years. Where the family would eat in 20 minutes, Rachel took an hour to finish.
Fast forward 14 years. Rachel is 4’11”. Her highest weight was 84 pounds. Two deaths of people very close to Rachel occurred right before she started college in NYC. In 4 months she lost 12 pounds.
She came home, was evaluated and diagnosed with an Eating Disorder NOS. She did not have body dysmorphia, knew she needed to gain weight and was never bulimic. One of her main problems was feeling like she had to throw up at which point she would decide not to eat. 3 yrs ago she started therapy and saw a nutritionist bi-weekly. Three years later, Rachel, herself, said she wasn’t progressing and voluntarily went into inpatient treatment in the Johns Hopkins eating disorder program.
She’s been at Hopkins for 3 weeks and is not doing well. She is actually losing weight. The program focuses first on eating to gain weight. Rachel’s response to the increase in her foodhas been to vomit while eating or immediately after. After initially thinking it was volitional they did blood work, found she had a slightly elevated white count and put her on a bland diet. She couldn’t keep that down either, nor could she hold down the Ensure supplement.
Does this sound like it could be CVS or be in part due to CVS which created some food avoidance to keep from throwing up?
I’m new to this whole CVS thing, but my son who is 19 months was just in the hospital for a 6 day visit. They are leaning towards this syndrome and have treated him with a drug called Periactin (sp?). It is considered to be in the antihistamine category, however, it is used to treat CVS or GI issues as well as neurological issues. He takes it twice a day along with Pecid, and takes Zofran as needed if vomiting does occur. Has your daughter ever been given the Periactin? If not, they definitely should give it a try. My son has had vomiting issues since formula days and it does come in cycles and usually around the same time of day when the “episodes” do occur. I’m so sorry your daughter has to go through this! I hope you find answers for her sooner rather than later! Best wishes!
I honestly don’t know the answer to that, but I have read that some adults with CVS do present with more of a chronic nausea problem than with the vomiting episodes like the traditional CVS. If she is treated with anti-nausea medications does the situation improve? Has she had a gastric emptying test? What about trying medicinal marijuana to increase appetite?
I would definitely recommend Periactin for your daughter. My daughter was diagnosed with CVS and started taking it and gained 15 lbs in 5 months! It not only took away her nausea but it made her feel more hungry. Unfortunately it stopped working after about 3 years and she was switched over to Amitryptiline (daily). That worked for another 3 years and her episodes started again last year and they are slowly increasing her mg to see if maybe she isn’t getting a strong enough dosage. I would highly recommend Periactin for your daughter! I hope she’s ok.
Hi there, I’m a CVS sufferer who has been dealing with it since I was very little. I just now got diagnosed as an adult at age 31. Your daughters plea of “Mommy please help me.” Is exactly what I would say pleading in tears to my mother to make it stop somehow. My heart ached for your daughter as I read those words, because I’ve been there.
Me and my husband found this organization if you haven’t heard of it http://cvsaonline.org it has some really great resources.
Don’t lose hope! I’ve lived through the “it’s all in your head.” And the “”You must just have a sensitive stomach.” Lines from doctors. You have to push to find the right doctor who will really listen and seek for those answers. I’ve read that doctors often use the bulimia and anorexia blame game when trying to diagnose CVS. I’m so sorry your daughters had to deal with that.
A medication that I use that is the only thing that helps is promethazine. It’s a nausea medication. It makes you very sleepy, but I’ve found my episodes can be stopped by sleep if I catch it quick enough, so it’s a win medication for me. If an episode can’t be stopped by it, I’ll go to the ER and usually it’s been stopped by the same medication, but In IV form.
I hope any of what I’ve said has brought hope and comfort to you.
This is helpful. I have moments where I find myself banging my head on the floor, crying out for help. My husband tries to help me the best he can getting my “emergency kit”. It is debilitating. I feel like I’m quickly running out of treatment options. Thanks for sharing yours. I will ask my doctors.
Philippa,
I have always had the same issues all my life. When I was younger I had a heital hernia repaired, so that was what they initially thought it was. But I have continued to have sickness, especially morning sickness, at one point my mom when I was a teenager my mom thought I was bulimic, too.
The stomach pains got worse, the periods of time I got sick got longer and my vomiting became worse. Last year, when I was 22 years old I was at a point to where I would be unconscious in my vomit and have to try and get help. This summer my mom (who is an RN) finally got sick of watching me being sick (I was 90 pounds at 23 years old) and tired of my doctor telling me I had the flu. She suggested I had endometriosis, so I went into the next obgyn with an opening. When I met him I jus cried to him begging to give me a laparoscopy for endometriosis & he did within a week! He found severe endometriosis & removed what he could. My GI pains cut back SO MUCH. I woke up a new person.
Eventually the endo started coming back, so they had me start lurpon. Within days of my first injection I thought I had a heart attack (I didn’t) & my doctor thought is was a stroke so I got an MRI. My pituitary was enlarged, like we thought, but they also unexpectedly found a little benign tumor in my midbrain. They just dismissed it- because of the lupron.
I took it upon myself to go to a neurologist. The neurologist (without me mentioning my constant sickness) suggested the tumor is pushing against a nerve that would cause cyclic vomiting syndrome. This was the first time I had ever heard of such a thing! I’m sure/I hope it is not a lesion growing in the brain. But, I never would have thought endometriosis & an intracranial tumor we’re the causes of my lifetime sickness. But, now that we know some causes we will start working on the management.
Ive also noticed my progesterone only pill also helps my sickness.
Hope your daughter finds something that works for her! I do understand how hard it is to live with the such poor quality of life at such a young age & not be taken seriously. Just remember, you & her are her biggest advocates! Don’t give up!
Also, sumatriptan helps occasionally. I have always had the nasal spray for migraines. It has a horrible drip, though. My neurologist gave me a little shot version to stick myself with when I get sick to my stomach, start vomiting or have a migraine. I haven’t used the shot version yet but the nasal spray works well- minus the awful tasting drip. I didn’t know it could be used for vomiting until now either. But, it makes sense. When I get migraines & vomiting it does help the vomiting & nauseas feeling go away.
Hi Dr. Cook,
Thank you for your story. I was vey moved by it and by your daughter’s bravery in the face of such suffering. I’m a 47 year old man who’s been suffering from what I think is CVS for six years, but like you I’ve experienced the typical MD response to something that can’t be measured which is to assume that it doesn’t exist. I can’t seem to find anybody in NYC to help me treat this thing. I’ve noticed that compazine helps as does dramamine and pepto bismol, but it’s mostly about just riding it out, which is a horrible thing. I live my life in fear of being ill. If you know any doctors in the NYC area that actually listen to patients I’d appreciate knowing about them.
Sincere thanks,
Paul
Hi Paul,
I’m sorry to hear you’ve been suffering–it is such a debilitating disease. I don’t know of a doctor in NYC specifically, but I would check out the Cyclic Vomiting Syndrome Association’s website–they may have a list of CVS knowledgeable doctors on there, and if not you could contact them to ask: http://cvsaonline.org/.
Philippa
Also, I have two other article on this site about a treatment that worked for my daughter–you may be interested in reading those. https://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/ and https://www.hormonesmatter.com/hope-cyclic-vomiting-syndrome/
Thank you SO much for posting this info. I’ve been suffering for years….since about 12, now 35 and no one can seem to diagnose me. I believe after SO much trial and error, research and illness symptom management, increase in episodes that I may have CVS I will bring it up w my MD this week and see if we can try adding amitriptlyine as I already use phenergen IM injections at home when the vomiting starts and ativan for anxiety and pain management through these severely painful episodes. If I catch it fast enough I can have my husband give me a shot then I need to sleep asap to try to sleep through it…..some times it works, and sometimes I end up in the ER withering, crying uncontrollably and vomiting non stop…..oh and then the diarrhea starts and I know it’s gonna be a long few DAYS! PLEASE ANYONE if you have any other advice on how to ease the symptoms I would greatly appreciate it, I definitely need it!
I’ve been doing a lot of research and have found a strong link between mitochondrial disorder and cvs. My son has had cvs since infancy, he has been on cyproheptadine for months which spread the episodes from every 6 weeks to every 10…now on L-carnatine, episodes are about 16 weeks apart…Coq10 is another supplement that is supposed to help…both are supplements, rather then medications
Yes, here is an article with more information about mitochondrial dysfunction in CVS: https://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/
Excellent. I am sure you’ve heard lots of, “Have you tried this…” but we’ve found that one thing that truly helps is being tested for MTHFR. It’s a genetic mutation that has many different ramifications for different people. So far, everyone with Cyclical Vomiting has tested positive. The cure is very simple. It’s an over-the-counter supplement called Methylfolate. We always recommend someone get tested (a blood test can tell you if you have it and which markers you have, which then determines symptoms and treatment). Then find a physician familiar with the condition to adequately treat it (mthfr.net has referral sources). Another thing that helps is Red Raspberry Capsules (not mixed with anything else) and/or Red Raspberry tea. Amazing to get rid of morning sickness and works well with hormonal nauseousness.
Thank you so much for that information! I was not aware of that link.
hi Dr Cook i am izaiah tambanillo 20 years old from Philippines i have been suffering CVS Almost 7 years until now i have been hospitalized every month
my last confined last month .. im here to find some answers on how to handle it and what medicines i would take , but now im taking sertraline zolodin its a anti depressants , i have been handled by a psychiatrist .. all my laboratories are normal all the testing are normal too , many doctors handle me but they cant find anything .
please teach me what to do .. Thank you in advance Doctor cook
you can email me , Tambanillo10i@gmail.com
Thank you for writing this! Our CVSer is also our oldest and hence it took longer to realize that the frequent vomiting wasn’t normal. She started at 7 months old and was diagnosed at 2.5 years. Our pediatrician was also the one who first mentioned CVS to us. I went home and googled it and cried. I knew before any other testing that this is what we’d been living with for two years. It was good to read this and know that our experience is so similar to other parents. Blessings!
My 12 year old daughter had been randomly vomiting since she was 18 months old and a lot of detective work on my part has helped minimize the episodes. We discovered she would vomit from aspertame (diet cola) and artificial food coloring. She would still have episodes that we couldn’t explain and after taking her to a Healing Touch practitioner we learned her fears were causing esophagus spasms. Our HT practitioner explained we hold fear in our solar plexus and at night when she would lie down her esophagus would spasm causing vomiting with no abdominal pain or warning. She now uses Healing Touch techniques on herself when she gets the feeling that it’s coming on and we haven’t had an episode in 7 months!
That is great! Touch and physical manipulation can definitely be very helpful. I don’t know that particular technique, but I am interested in looking into it. Thanks for sharing your experience!
Philippa, thank you so much for sharing your story!
My osn who is 14 now, has similar symptoms but his episodes were little far apart starting at 3 years with stomach virus. He would get sick every 4-6 weeks, lasting 4-5 days. When he was 10 he was diagnosed by EOE but had not symptom of EOE except these vomiting episodes. They gave him Flovent which was not helping but the gastroenterologist (who is the chief of the department at children’s in Columbus) won’t even talk to us to discuss. Just had to talk tot eh nurse. Any way the pediatrician suggested that since he had constipation, it might be due to that. that clue helped and I started giving him a mild herbal laxative and since then his episodes became further apart, though mornings are bad many times. By further reading about his symptoms I realized he has CVS. We are now seeing a nutritionist and realized that he has allergies to wheat and milk so trying to stop that and see how it goes.
Has anyone tried changing food based on allergy and DNA tests? Does it help?
I have tried it with my daughter, not based on allergy tests but on an elimination diet where we took a whole bunch of potential allergens/triggers out of her diet. It turned out that dairy was partly responsible for triggering her episodes. She did a lot better when she avoided dairy. I think identifying foods that you are sensitive to is always a good idea.
I have been diagnosed with Gastric Paresis as well as CVS and a liver disorder. It took 8 years to get my CVS diagnosis and I am currently 56 years young. My question is about essential oils. Have you heard or have you tried any oils that have worked in helping to abort or at least lessen the severity of an episode. I am educating myself and trying various methods in hopes to eliminate the many and often non helping medications. Any information would be helpful and appreciated.
There is a comment from a woman named Jill further down this page, and she has had some success with essential oils. I tried them with my daughter and they did not help, but we have had a lot of success with the dietary supplements I wrote about in this article: http://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/. I hope you can find something that helps soon.
When my daughter was 2-3 she started puking quite a bit at night. She’d puke as much as 13 times a night and right before she’d puke she’d complain of severe stomach pain,this is how at such a young age she knew she was going to throw up. After an episode (these occurred once a month or stretched out to once every few months sometimes) she’d wake up in the morning feeling perfectly fine like she hadn’t just puked for 3 hours straight. She was diagnosed with acid reflux at 3 yrs old and given zantac to take when the epsiodes began although it didn’t do much. Eventually she went a full year without puking so I thought she may have grown out of it. Well 3 weeks ago she was up puking at 3am and maybe puked 5 times and this morning at 4 am she started puking and so far has puked 3 times. I think this may he what she suffers from. Hopefully her new pediatrician can give us some answeres. Glad I stumbled upon this website on my Internet search.
That does sound a lot like my daughter. I hope you can get some answers soon.
Hi! We’re just beginning the journey to hopefully figuring out what is going on with my 3 year old. Her symptoms mirror your daughter’s very closely. She doesn’t complain of pain anywhere, but she acts mildly disoriented and extremely lethargic. I will be bringing up some of these points at her appointment tomorrow in hopes that we can get to the root of this. It breaks my heart and scares me! We haven’t had much luck with any of the other doctors, so I’m hoping this new one will be more willing to explore options. She’s already WELL below average size (under the 1st percentile) and these episodes are not helping her gain weight. I’m not 100% certain is CVS, so I’d like to rule out anything else.
Hi Melanie, Having a thorough work up to rule out some of the other possibilities is a good idea. The disorientation and lethargy do sound like cyclic vomiting syndrome though. I have heard many CVS parents comment on that. I’m sorry your daughter is suffering like this. Pediatric doctors tend to be a bit more familiar with this disease than adult doctors, but sometimes it is still hard to find a doctor who knows how to treat it. If you are on Facebook, there is a private group for parents of children with CVS–you can connect with other patients for support and advice. https://www.facebook.com/groups/176313902555546/
Thank you so much! I’m hoping for some answers soon, but it really does sound like cvs.
Hi Jeanie, it is good that your granddaughter is getting a diagnosis so young. My daughter had symptoms that young also, but she wasn’t diagnosed until she was around 10 years old. In this article I talk about 2 supplements that may be useful: http://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/. These supplements have helped my daughter a lot. There is some research on their safety and effectiveness, if you click on the links in my article. I would discuss them with your doctor
My 2 1/2 year old grand daughter is just beginning tests for CVS. Every 8 days she has an episode of severe vomiting & “stabbing” in her tummy. It’s heartbreaking to watch. Does anyone have any suggestions or . All the threads I’ve read talk of older children. When & what supplements should we consider
Hi Kaytee, I’m glad you found something that works. My daughter had been doing well on L-carnitine and coenzyme Q10, but now she has started getting epsiodes again–further apart in time, but more severe when they happen. I may need to start looking into some daily medication/preventative options. It is really an awful disease.
Hello there! I too have cvs. It started around 9. Which was just about the time I started my menstrual cycle. For me, stopping my period gave me more time between episodes. It used to come like clockwork a week or so before I would start my period. I am on depo-provera shot. I started using it at 17 and still take it at 36. Your daughter’s story reads just like mine. Told its in my head or accused of an eating disorder. Recently I was put on phenobarbital. It has been my miracle drug. I’ve had two very mild, controllable episodes since December 2014 when I was first given pheno. Before that I had been given every medicine in the book with little results. Now I take one pill twice a day instead of 5-8 pills 1-3 times a day. I hope your daughter soon finds her miracle med. I know many don’t like the daily Med idea, but after so many years of pure hell I don’t even give it a second thought. Feeling good is worth it for me. Good luck with the monster and hug to you and your warrior!
Thank you Stephanie, I will definitely look into those pain strips. Hope your daughter feels better soon!
Her story sounds a lot like my 11 year old daughter’s! I am so thankful that her pediatrician knew right away what it was when I finally took her in after she would have a 12 hour vomiting episode once a month for several months. It took me a while to realize there was something else going on besides what I thought was a stomach flu. We’ve tried suppositories and Phenergan with no luck in relief. She’s had to go to the hospital several times for IV fluids. We’re more natural minded, so taking her to the chiropractor has helped decrease the amount of times she has an episode. We have also found these natural pain strips that have been the only thing to actually stop an episode for her and helps her to recover quickly. Have used them for almost 2 years now and has worked every time. She’s in an episode now and we have ran out of them so am trying to find any other remedies until I can get one from my parents who have some (middle of the night right now). I’m upset that we’re out of them and I can’t help her. She asked to have one and was upset when I told her I don’t have any because she knows how much they have helped her. They truly have been a miracle and an answered prayer for us. I will now be sure to never run out of them again! This is a quick clip of what they are and how they have worked for her. I would love to see how they help others too…. https://youtu.be/S97qXQHYVc8
Where do you buy the power strips from?
Most of you probably already have been checked for pancreatitis. If not please do. The tests will show negative for pancreatitis unless you have the blood work done during an episode when you are having abdominal pains. My daughter started with all these symptoms at age 8. Doctors could not figure out what was wrong with her, (1 even said its all in her head). When she was 17 she was hospitalized with pancreatitis.
so far so good. My daughter seems human! She has more energy and can look awake in the morning. The suppliments seem to be helping with energy levels. Too early to see the effects on CVS. The only concern I have is the pharmecist mentioned having my daughters kidneys checked withnthe amount of protein frim the L.Carnitine. Has anyone been told this before?
Thanks once again for all your help!
I hope it helps Jill! Keep us posted! My daughter has only had 2 episodes in 4 months. One was because we ran out of supplements and didn’t buy new ones right away. Within a day she was vomiting. The other episode was when she had a pretty severe virus with high fever and body aches. I think they are helping my daughter a lot. Hope you have success too.
Thanks for the information Philippa. I went to an apothecary and purchased the two supplements for my daughter. Hopefully she has success and I plan to write about it in the future! The suppliments are costly (at least in Canada), but if they are beneficial, it will be worth it.
Hi Jill, There are some natural supplements that may help. I wrote about them in another article: http://www.hormonesmatter.com/cyclic-vomiting-syndrome-mitochondrial-dysfunction/. My daughter has been taking them and they have helped a lot. I can understand not wanting your daughter on a daily med.
My daughter was recently diagnosed with CVS. It has progressively increased since the onset of puberty. She takes zofran and domperadone which seems to lessen the amount of times during an episode. It is not a cure, but helps with maintaining weight. We are completely against any daily meds. The literature seems to indicate that once the body becomes immuned to the low does of amitripthaline, one needs to increase the dose. This causes side effects. The last thing we want is our daughter on an antidepressent when she is a completely happy person. i am searching for natural remedies instead.
Joan, I’m sorry you are suffering so badly. I have written another article about CVS on this website that has discusses some supplements that help many patients with CVS.
I am a 69 year old female with CVS. I have had it for 12 years or more. I had very severe headaches as a young adult. Then the headaches stopped and 10 years the vomiting and diarrhea started. I never know when it is going to hit, but I know stress plays a big part. I have never found any one food that triggers it. I lost 50 lbs in two months a year ago. It makes you not want to eat at all, but I have had the dry heaves with it which is worse then vomiting up food. I have never found any medicines that work. Hope someone finds one soon really tired of it.
Thank you Kelsey! Linda, it is so hard to manage multiple medical issues. I am going to be writing a folllow-up article to this one in January discussing some supplements that have good efficacy in preventing episodes, so keep an eye out for that article!
Just wanting to send you and your daughter my good thoughts and big hugs,
Hi, My teen son has CVS/abdominal migraines. We avoid known triggers for him (there are many, but they include things like overeating, eating after 7pm, constipation, & being overtired). Daily amitriptyline worked wonders (timeframe between episodes drastically increased from weeks to months), but it eventually caused urinary retention. He has other significant medical issues, so this was highly problematic. We tried other meds including daily Periactin & using Imitrix asap, but did not have success with these. I’ve known other parents who’ve used other meds with various success. When my son goes into an episode, Zofran & Ativan given asap help & I take him to the ER/hospital admittance for IV fluids (& Zofran/Ativan given by IV) which really help, too.
Jill, thanks for the idea. I like using essential oils as well but hadn’t tried them for CVS. I agree that natural remedies can be great.
My 11 yo son has had CVS since he was a toddler. Our GI doctor prescribed Cyproheptadine (periactin) when he was 6. We have seen great results with it however I have found a natural approach to be a better treatment for him. I became an independent distributor for Young Living Essential Oils and we use peppermint oil and/or DiGize blended oil topically and it works great. I don’t recommend any other brand of oils because they are not 100% pure and therapeutic grade. I love using God’s medicine instead of man made medicine for all of our ailments now.
Sincerely,
Jill
How much of each oil do use and where do you apply it and how many times a day? I have cvs and I’m 32 yrs old. I have had this since I was 12 yrs old and I went into remission for 5 yrs after I had my youngest daughter. But it came back last year and it is getting progressively worse. I would like to try this option because I can’t keep taking pills daily when they are not even helping.
I’m not sure if Jill will see this as her comment is a few years old, and I don’t know the answer about the oils myself. I would ask at a good health food store that sells the oils, or maybe a ND. You need to dilute essential oils properly before using otherwise you may have a reaction. The undiluted oils are very strong.
I am a Doterra rep a’nd am currently helping a friend that has CVS… We are using Peppermint and Digestzen ( these are Doterra brands)… You may need to tweek what you need, as each person’s needs verify… We are using 4-6 ounces of water with two drops of Peppermint in it… We also apply some Peppermint and Digestzen directly to the stomach area…
You can reach me at Dchriscoe5942@gmail.com or https://www.facebook.com/dmchriscoe if you would like more information or have any questions.
Hi Cassandra, Thanks for your comment. Unfortunately I haven’t found a doctor willing to prescribe her anything prophylactic yet. But you are absolutely correct, and we will be covering that in a future blog post on this disorder. I hope you are doing well. It is a terrible disease.
I have this disorder too (for all my 33 years of life). There ARE medicatiosn that help to prevent the occuring of an episode – check http://cvsaonline.org/ for information and articles.