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Cyclic Vomiting Syndrome CVS

Misdiagnosed
0 Recommendations

Hi, my name is Jodie and I have been suffering for 20 years with CVS cyclic vomiting syndrome, it is severe bouts of nausea and vomiting can last any where from 1 day to months at a time nothing takes the nausea away or the vomiting i have tried it all it is absolutely horrible to go thru especially when it lasts for days and weeks you cant eat or drink nothing stays down for more than a few min. i am pretty much throwing up every 10 mins. all day everyday, really sucks for me and my family, it could me lookin on the comp to basically diagnose myself and then try and convice drs. to listen to me about it but all the drs. had no idea what this was or for that matter never heard of it before, so i got no help medically except for my family dr. thank god, finally 2 years ago i seen another stomache dr. and he heard of the disease and sent me to Hamilton Ontario to see a dr. at the university and he diagnosed me with cyclic vomiting syndrome, it took 18 years of suffering and thinkin your crazy and others thinkin the same, they come by the diagnoses when all tests have been done, i have been checked head to toe inside and out and nothing every came up with any test, seen every specialist for every part of my body, it is nice to finally have a diagnoses, but there is no know cause or treatment for this disease just try and find something that helps get you through, and i havent quite found that yet, hot baths and lots of them and something to make me sleep which doesnt all ways work up for days sometimes, but i carry on i have to for me and my family. thank you for listening

Explore topics in this discussion:

Levetiracetam Anxiety Sjogren's syndrome Topamax Lupus Clonazepam Mastocytosis Cortisol Stress Nausea and vomiting Allergies Cyclic vomiting syndrome Diabetes Seizures Pain Lorazepam

18 replies

chiilin

Hi;
I suppose there could be more than one form of CVS (as with most diseases) but mine is quite different from yours. My CVS does have a cause, and a treatment. The cause is migraines, and the treatment is prevention of the migraines. Also, my symptoms are very different from yours. With me, when an episode starts, it comes one suddenly, violently, and doesn't let up until I am admitted to the ER, given IV fluids and sedated. I am totally non-functional during an episode, and could actually die if not treated. I become semicomatose, and unable to walk or talk. I'm really surpised to hear that your episodes last so long, and that you are able to eat during an episode. Mine could not possibly last more than two or three days because I would die. Just goes to show how different illnesses affect people differently. I hope you find a cause and a treatment soon. You must be pretty miserable. I did a search on the web & found a protocol for doctors to follow when I'm talken to the ER, because at the time I'm not able to tell them what it happening. It takes a lot of research, but I found quite a bit of info on it. Some of it was on childhood CVS, which actually seems to be more like your symptoms. It's supposed to be rare in adults. Not rare enough for me. However, I have found relief with propanalol which prevents migraines.

caringcounterparts

My sister has CVS, and she is nauseous all day every day -- and she has diabetes, so it's a struggle to want to eat, but she has to. She takes Clonazepam 1 mg and Lorazepam 1mg, and most of the time it can prevent her from throwing up. This has prevented her from going to the ER for years.

She gets very anxious, almost irrational, and overwhelmed when she throws up -- I guess there is a relationship between anxiety disorders and CVS. It's important to see a psychiatrist to be evaluated for anxiety disorder.

Along with having a relationship with migraine, CVS also seems to respond to anti-seizure medication. To quote an medical article I read recently: "Newer antiepileptic drugs, specifically zonisamide and levetiracetam, appeared beneficial as maintenance medications for nearly three fourths of adults with cyclic vomiting syndrome.

I would also suggest being evaluated by a competent neuroendocrinologist, such as Dr. Pejman Cohan in L.A. My sister also has adrenal issues that cause cortisol issues, and I have an self-educated theory that cortisol may have a role in CVS. (Cortisol affects most major systems, and can cause nausea, anxiety, seizures, migraines, and much more.)

Dr. Feldman, a gastroenterologist at Cedars-Sinai was very kind and knowledgeable about CVS. He also mentioned a doctor in Atlanta who dedicates his entire practice to helping CVS patients.

I hope this helps...

Ellen

jimmperry

My wife has CVS. She is in the hospital in NY right now cuz of it. She went for a 1 day trip and has not come back (we live in Boston). This is the 3rd attack in 4 months. All 3 attacks happeded durning a vacation or party. She gets excited and BAM...sick for a week.

None of the doctors Ive spoken with think she has that (too rare, only in children). Even her primary care doctor doesnt think its this. But she has all the symptoms. She's been like this from age 10 on. But only about 10 vistis to the ER (she's 26 now).

Its frustrating. We try to stop it when it starts. She like a hot bath, real hot. But thats only temporary. We end up in the ER each time.

Just needed to Vent!

amy101

My daughter was diagnosised with CVS at the age of 7 after suffering for 5 years. The doctors plainly did not know what to do with her. We were at one of the top children's hospital in our area and they still did not have a clue. Her onsets were special events (birthday parties, vacations)and any type of stress. She was put on migraine medications which did for a time help but the onsets got worse. We went to see Dr. Li in Chicago who I have to say was top notch. He does have a long waiting list. After reviewing her history and evaluation her (see did have an attack while we were their with him) he suggested Mitochondrial Testing (metabolic disorders). After seeing Dr. Cohen(Cal.) and Dr. Schoffner(atl) she had a muscle biospy and did have a mithochondrial disease. Alot of research is being conducted to see if there is strong link CVS with Mito. It might be worth your will to check into this.
I know your frustrations! It took us over 9 years to get the proper diagnosis but the down side is that there is not set treatment. We have had to do alot of trial and error. Also, over the counter proboitic (Cullturell) has work along with presciption
medications. Keep the faith.

jimmperry

My wife had an attack at work today. She is friends with an acupuncturist who works in the same building. The acupuncturist told her to come up if it happens again. I dont know how/why, but 10 min. into the session her pain began to dull. She now feels great and went back downstairs to work. Its only been 3 hours, but usualy by this time we would be in a hot bath to help the pain.

Now Im not sure what this is all about...phycological? But we have been popping pain pills (Dialoted) every time she has an episode. These pain pills would work, but make her a zombie. Im glad she "aborted an episode", but we cant carry a acupuncturist around with us all the time.

Ill post with more.

caringcounterparts

Hot showers / baths are proven to be helpful with CVS. And there is often an anxiety component that triggers attacks. In fact, anti-anxiety medications like clonazepam can be tremendously helpful... I highly recommend contacting Dr. Feldman (mentioned above) -- he was able to give my sister back her life, and reassure her that she wasn't crazy, in one visit. And he treats people around the world from his office at Cedars-Sinai.

Leriene

There is only One type of CVS.
There are different symptoms for different sufferers but it is all the same Illness.
CVS is thought to be linked to Migranes however that is not a cause.
CVS if left untreated for a prolonged time could kill but the time depends of that person.
There are many people who have been mistaken for other illnessed but instead they have CVS. That is just one of the Journey's we have to go through but other than that all CVSers suffer in mostly the same way.

Leriene

Have you Tried Zofran (Ondansetron)?
Many people with CVS find this helps. My dose has only just been raised so it now works for me. Some other CVS sufferers are taking a higher dose of Zofran thank chemo patients.

Maybe you just need to find a dose that works for you,

psjaquith

I am glad to have stumbled onto this subject matter..a friend of mine has had this problem and never has had a real diagnosis to her stomach problems. This may fit the bill for her.
I hope this finds everyone in good health and spirits.
psjaquith
Lupus & Sjogren's Syndrome

jaysmom

My daughter was diagnosed anout 2 years ago. She was on Topamax for a little over a year and this summer her neurologist recommended she be taken off of it. She is 14, nearly 15 and they thought perhaps it was hormone related and the meds were not needed. Exactly 4 weeks from her last dose of Topamax, she had her first cycle. Just in time for her second week of high school. She has had 2 more episodes in the last three weeks. This week's cycle landing her in the hospital for 3 days. It seems a little different this time around though. A lot more abdominal pain and much less vomiting. This is her second day home and she is still in a lot of pain. I am praying the Topamax, which she went back on after the first relapse, helps again. It was truly a lifesaver for her 6th grade year. She had a couple of migraine headaches, but no CVS episodes when taking it before. I hope those here who have been prescribed Topamax experience the same good results!

Misdiagnosed

thank you all so much for sharing your lives with me and i really appreciate the med. suggestions, and just knowing that i am not alone does help, i felt alone for a very long time and this site and the cvs site has made a big difference in my life just knowing there are people out there who can understand and try and help you, i couldnt say thank you enough.

tdhssp

My beautiful daughter has since passed on following cardiac arrest... She was 13 years of age when this occured. She was born with a rare chromosome 18 duplication. My daughter was non-verbal.

We discovered that she was having seizure activity, auras. This had apparently been going on for years, but was not treated... (long story but, we did not know this was the case.) Shortly before our daughter died, she had an episode during the night when she vomited profusely. She was not ill before or after the event. (She had always had a strong gag reflex.)

2 weeks later, out of the blue, she suddenly took ill at school and began retching. This continued throughout the day, but she did not vomit much. There was no temperature. She rested, but in the evening, she was not responding to voices and was pronounced in cardiac arrest at the hospital.

Another child with the same syndrome as our daughter, has experienced similar symptoms: Perfectly healthy, but episodes of vomiting during sleep. This child, fortunately can speak and complains of headache.

The events are believed to be related to seizure activity combined with possible CVS...

Can anyone expand?

caringcounterparts

I'm so sorry about your daughter, and what you've had to go through.

I know CVS is associated with migraine headaches (it's sometimes referred to as "abdominal migraine"). It is also associated with epilepsy/neuromuscular disease. There also seems to be a link to genetics (mitochondrial disease), and dairy/eggs/soy allergies.

Here is a link to a helpful article:
http://www.thedoctorsdoctor.com/diseases/cyclic_vomiting_syndrome.htm

It is common for nausea to begin in the early morning, during sleep. There also seems to be a strong correlation between anxiety and CVS, and someone who is throwing up may seem overly upset about it, overwhelmed and "out of it" or lethargic.

You might try postponing bedtimes until after midnight, and avoiding getting up early in the morning, to see if this helps.

Other posts in this string mention Dr. Edward Feldman at Cedars Sinai in LA (one of 7 or so doctors in the country who know much about CVS). He will definitely work with you over the phone. I know clonazepam and lorazepam are medications that help. If you haven't already, you could also look up CVSAonline.com.

I hope this helps,
Ellen

tdhssp

Thank you! I have passed suggestions to the other family who is similarly affected and I am currently corresponding with a physician who informs that issues are related, but with the chromosome mix, can be difficult and complex to interpret.

I have also been alerted of a condition where some people are more prone to involving the vagus nerve. A whole lot of medical terminology to further define, but the general gist involves a slowing of heart rate.

You know, I just want to ensure that no one else suffer the same consequences and if this can be prevented, then it will make my daughter's too early demise much easier to live with.

Blessings!

DENTRO

Hi Jodie,

You should check how well your stomach empties, my son has had cvs for 13yrs. You may have gastroparisis, this triggers his cvs. Make your doctor listen, they often loose interest when they feel they can't help but keep your spirits up.

Dentro

sickguy101

OK, i have been sick since march. i have had my gallbladder out and every test known to man with no answers like so many of us. i have been diagnosed with cvs four months ago and am in the study outta Cali.. i have some advice on how i control it daily. I am executive chef or i was till i got sick. I am 29 and never had a symptom till now and was in the hospital every two weeks for a week. I get severe abdominal pain so the doc'c gave me perc's and when i was taking them everyday i was fine they ran out and bamm i had a attack. At first i thought nothing of it, i received another script and i had no attacks. this was before the diagnosis, now the doc's have caught on and i only will get attacks if i forget to take pain medd's like when i go to sleep and wake up sick. it has worked for months now and you don't need heavy stuff. i started on 10mg percs they worked good but now i take 20er oc's, 2 a day and have great results. i am not messed up or high from them cause i need them, nor is addiction a worry because i need them. when taking pain pills chances are u wont become addicted when u take them IF YOU NEED THEM. I hope this helps you some at least to have some control. the pain medd's slow the function of the brain that causes attacks but does not interfere with daily tasks. If your doc dis-agrees ask what he plans on. My bet he has as many answers as he did yesterday so, tell him you willing to try anything because CVS is a real painful unpredictable disease and if it might help then it would be worth it. I really hope you try cause it has done wonders for me. I should tell you that i have had my esophagus reattached four times and two of them had me ICU for weeks and please go to the hospital when the severe vomiting starts because it is super dangerous. Best wishes.

Poetessa

In reading all the posts I just want to say how sorrow I am to hear of the loss of your daughter, my heart goes out to you and I'll keep her in my prayers. I can't imagine the pain you've endured.
In reading all this it's like reliving my childhood, I was diagnosed with CVS when I was five, I would vommit uncontrollably for days or even over a week without keeping anything down and no one knew what to do. I would turn into a skeleton. They tried sticking a tube down my throat to pump my stomach and I still managed to throw up with the tube. With me it's possible it was partially an allergy to ASA though I didn't take ASA every time, I know stress was involved for sure and my stomach would bleed terribly.
As I got older I was able to control my nausea a bit better with meds or I would have continued. 2 years ago I was diagnosed with Systemic Mastocytosis which strongly affects the stomach and stress sets it off so I am thinking it was most likely that, combined with stressful life events. I'm not sure if anyone has been tested for that or have any of the zillion symptoms.
My least favorite thing in the world is throwing up... I feel for all of you! I wish you all the very best and you feel better soon.
Healing hugs to all,
Poetessa

tdhssp

(((Thank you)))

Now that I know about CVS and migranes, I have spoke with many of the parents in our 'family' of chromosome 18 kids and there is definitely a pattern! The children who are verbal are able to report their symptoms which are in keeping with what others have described here. I also believe in 'our children' that the CVS is closely related/tied into to seizure activity.

The knowledge is bittersweet in that it can obviously not benefit my little girl, but at least now, physicians are taking the episodes very seriously in the other children.

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