NORD - Cyclic Vomiting Syndrome 

Happy to help! ❤️

Me too💕

I am an Arab, and I suffer from this disease, but it is severe... it affects me every two weeks... no doctor has diagnosed my condition, and there is no Arab research on this subject. He found it when I searched in English and listened to many videos... I suffer a lot from this disease, there is no one here He understands how I feel

​@@nonasosa4918 I'm so sorry you're suffering. I too have been suffering for 20 years. I am also a sever case. I used to be in the hospital at least once a month. I was sick every day. Find a doctor who will prescribe you Topirimate 150mg. That medicine changed my life. It gave me my life back. I never thought I would be as healthy as I am now. I started it in September of 2023 and I haven't had an episode since. I haven't been able to say that for 20 years. I really hope you find relief. I am making it my mission to try and help as many people as I can.

Hi, I believe I have this too, based on my own research and the 6-7 nausea attacks I’ve had in the last 3 years. Going to see a gastro to rule out other causes first, though I’m expecting them to diagnose me with this. Is there any hope? Anything you’ve done that you found prevents or lessens episodes? Thanks..

They did the same thing to my husband. He had esophageal cancer surgery that was botched (they broke a rib & punctured a long) with a staple that was left behind. He puked every morning and every meal for 5 years. They found & removed the staple on his last scan and took him off his ulcer meds the same day. Within a few months he became gravely ill and needed to be hospitalized. He had sepsis from bleeding ulcers. They put him back on his medication for ulcers and said he would be on it for the rest of his life. He was doing better until the VA ordered a stress test and administered radioactive dye during a procedure. Within 48 hrs he had a severe reaction and was brought to a hospital with uncontrolled vomiting. They didn't find anything wrong so they released him within 4 hrs. The next morning he was brought back to the hospital where he was admitted with pneumonia and was told he was borderline septic again. The dr tried to blame it on marijuana, not the staple that had been left behind or the radioactive dye. Either these doctors are clueless imbeciles or they refuse to admit the truth. It's unreal what he and I have gone thru.

I have had this disorder my entire life, I'm now 53... It had taken 51 and a half years to get a diagnosis because most dr stop looking once they find pot in your system... I try to tell them " it's not the pot" and they insist it is, so I then say " I guess my parents must have been blowing me bong hoots in my crib or hot boxing me at birth, because I have had this MY ENTIRE LIFE!! " My partner of 17 years got so frustrated with the Canadian medical system he video taped a couple of my episodes, sent it to a mystery diagnosis website where dr from around the world examine the video, talk to the patient and give a diagnosis based on what they see,...( You still need confirmation by your own dr) As soon as my video was played, five minutes in the dr from India KNEW INSTANTLY what was wrong with me after asking me and my partner a few questions...it seems so easy, for him where 30 visits a year to the hospital, in several different provinces, even our largest hospital nor the PhD students from the graduating class for medicine knew what it was, ( I was a case study ) yet this dr halfway across the world KNEW INSTANTLY???!! When I present at any Canadian hospital, I get the same b.s.... Left without any help, no medicine and often no iv line, belittled and berated by every nurse or nurses assistant that comes within ear shot of me...I am so done with this treatment...it should be a human rights issue he way we are treated or not treated by hospital staff who think they know better than my specialist.. We are the unseen...there is no visible markers which show our illness beyond its symptoms... We suffer in silence because we often do not have anyone to fight for us during these moments when we can't fight for ourselves...and doctors and nurses are so very quick to judgement... If I had a nickle for everytime some uneducated healthcare professional told me to stop smoking pot and it will go away, or told me it's CHS a pot smokers disorder, I would be filthy rich today...😢

Thank u!!! Let me tell u if ur force ur fiancee to continue smoking it will stop the epsiode I use to think when I'd smoke a bowl or its not stopping the episode then something told me keep smoking. Now I smoke about 3 grams back to back and it stops the episode. Idk if your girl will need that much but I promise just keep smoking(in my finding Nemo voice) and it will go away

That has happened to me both times I was hospitalized. But I said I'm throwing up for 8 days in a row. I don't think marijuana causes that.

@@robynburgess3995 it's infuriating and disappointing while ur laying there already feeling miserable they throw that into the mix. Mind you they've only done ONE study on this and had 12 people withstand from smoking marijuana for a long period of time out of those 12 people only one of their cvs episodes stopped the rest still remained having cvs and my thought on that is what if that person actually had chs and that's why they for better when they stopped smoking

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 am sorry to hear that. Really rough disease and very unpleasant to deal with..

The pain is like nothing I’ve ever felt.

I believe I have this as well. 6 hospital trips for me. Has anything helped you prevent or lessen the severity of episodes?

Thank you and we hope so too 🙏🏻

Plz help me my son is also suffer from this

Same

What kind of treatments did they use to prevent or reduce severity of your son’s episodes? I believe I have this too and am just becoming aware of it as a 33 year old

Thank you for adding this comment. I'm 45 years old and suffered CVS for half my life. Any additional info like this is invaluable and another avenue to explore, thank you.

So happy for him and you.

Omg thank u for this!!! I will look into this at my next apt .

We hope that this video was able to help, Srikrishna! 🙏🏼

My sons CVS was finally SOLVED! 🙏 It’s completely healed now. It was not a stomach disorder like his gastroenterologist thought. Instead, by a fluke, at a new ER, they ran more tests and after imaging his kidneys they found a polyp in his ureter (the tube leading from his kidney to his bladder) that would occasionally block the flow of urine, where it would build up in his kidney and cause excruciating stomach pain (really it was kidney pain that he felt in his stomach) and vomiting. The polyp was removed and he has never had a single episode now in years! I know this may not solve everyone’s CVS, but I hope it will point some of you toward other potential downstream organs, not just the gastro region.

Thank you this helped a lot💕

We hope that our video was able to help, Brooke! 🙏🏼

We're glad that this video made you feel recognized 🙏🏼

Hot shower works for me too.

We're happy that this video is helpful 🙏🏼

Thanks for sharing and we're keeping you in our thoughts today. 🙏🏼

I hear ya! I just went thru this, again! Went to the hospital twice cuz I couldn't take it! Still recovering, it takes SO much outta ya! ☮️💜

Btw I'm in the process of finding a therapist! I would do just about anything to prevent this from happening again! Therapy for stress, meds, meditation idk & idc I'll do anything to avoid this!

@@sweetmissypetuniawilson9206 it’s unreal!!!

@@sweetmissypetuniawilson9206 I take meds for everything so it helps cause before we found this med combo I was in hospital every week.. I’ve had cvs since I was 7 been to many children specialist adult specialist and finally found someone that cared but he retired about 5 years ago the new drs don’t know how to treat it so I’m just in same stuff.. I hope things get better and you can find the meds Combo that works for you.. I don’t need a therapist I’ve been threw psycho meds they love to just throw meds at ya.. my primary care Dr is controlling or trying to control my depression but it’s treatment resistant so it sucks.. but I take anxiety meds that help a lot especially to calm me down… hope things get better do you have a GI dr.

We hope that our video was able to help, Carolyne! 🙏🏼

Im right there with you. Once ingot an upper endoscopy. During the procedure while unconscious i began to violent throw up. Over an hour to get me back to normal. My results: everything looks good… Gee thanks.

Lol its people like you that sometimes help us keep it in. I hate to make others uncomfortable.

You're very welcome, Heidi! ❤️

Always our pleasure to help, Bella! 🥰

Hope it helped! 🙏🏼

Wow, thank you, Chiman! We're glad that we're able to help! 💖

We hope this video was able to help 🙏🏼

Glad you think so, Lisa! 💖

Our pleasure! 🙏🏻

I can't believe they didn't mention this in the video! I recently found out this is what I'm suffering from and nothing has helped me, exwpt one very weird help: a really hot bath or shower. For me it takes the nausea from extreme down to almost nothing in just a few minutes. Imagine the relief. I really really hope this can help someone out there.

Ya I found hot showers also help take the debilitating nausea away for atleast 30 mins or so.

@@oleschmeed3916 I stayed in for about 2 hrs. Then no vomit.

Oh I’m so sorry 🥺 13 days is so long to be suffering and dehydrated. I wonder if there are any IV clinics near you? My friend has a local one they go to on day 1 or 2 of an episode, and the iv clinic is well educated in CVS. I hope you rest and recover well form your flare. 🧡

Thanks for your recommendation! Our team will be taking this into consideration. Have a lovely rest of the week! 💖

If taking a hot shower relieves your symptoms, and you happen to consume any cannabis related products then you most probably have a condition called cannabinoid hyperemesis syndrome. The only treatment is stopping the consumption of any cannabis products.

I take hot baths a lot. And agree it can help.

It's actually not as weird as you might think; consider the effects a hot shower/bath has on the circulatory system, including that of the brain: "For people who experience a lot of muscle stiffness or tension, hot showers are great because it helps relax tight muscles which will sooth discomfort. Hot showers can benefit anyone! The steam from hot showers not only helps to loosen and clear out oils and dirt within the pores of your face, but it also helps relax and open up your nasal passages to relieve nasal congestion. Hot showers can even help reduce stress and anxiety because the heat can stimulate the brain’s release of a hormone called oxytocin, which is known to be correlated to anti-stress effects, or relaxation."

Lucky you I throw up in the shower 😂😂

I have literally laid in the bathtub and let hot water rain down from the shower head for hours during one of my episodes

I accepted my sickness as a child after doctors didn’t know. It became a part of my life and i just sorta ‘took it easy’ with everything. My 8 year old told me she experiences symptoms that i know exactly how she feels. Im devastated rn. Depression is hereditary and some people think that could be part of the link.

Yes.

Pretty much what every doctor zeros in on, if they even hear you tried pot to help with the nausea. I personally believe the two are separate symptoms and not really related.

You gotta find a really good gastroenterologist! Good luck! ☮️💜

I agree

Don't believe that dead guy, he's not here, hun. Zofran is the answer

@@ashleelarsen5002 Zofran doesn't help me. I gotta use Promethazine. This is by far the worst thing in my entire life I've had to go thru..... Repeatedly 😩 Looking for answers for prevention! Somebody cure this!!!

Zofran also does not help me. Med mj can help some but not after it comes on

Trust me, it's worse. Have you ever felt nausea in your very SKIN? They mention the frequency of vomiting in this video, but that frequency ( at the same 11/10 nausea level) can be over many days. My first hospitalized episode, I was puking 6 times an hour and got maybe 3-4 hours of broken sleep a night. I could not keep down any food. Literally none. This went on at the same intensity for 10 days. It only ended after I had an endoscopy in the hospital. The nausea was so bad, and my nervous system so keyed up, that I was fully conscious and aware during the procedure- even though they maxed out the sedation dose. CVS nausea is worse than chemo nausea. There are some supportive meds, but if the episode is in full swing by the time you go to the hospital, they are much less effective. CVS is to the stomach flu as a stab wound is to a paper cut.

@@18thcenturyfan I couldn't have said that better! You're not exaggerating! CVS compared to the stomach flu IS like a stab wound (very large knife or gun shot wound) compared to a paper cut! There's no comparison CVS is a whole other level!! Unimaginable pain!! It's like your stomach is having seizures, it's crazy painful!!

While it may seem similar, it's not really the symptoms itself but the severity of them, bad episodes for me could get as bad as vomiting every 3-5 minutes and could last for hours before having to go to the hospital or falling asleep from exhaustion. These bad episodes had certain triggers that would make them more likely like lack of sleep, overheating, or severe stress. When I was younger bad episodes could happen a few weeks apart or a few months if I was lucky. Less severe episodes would happen every few days and would range from severe nausea to vomiting a few times.

​@SuperBakaotaku IDK if I would say it's worse than chemo sickness. I would say they are equal just for the fact that every body handles both sicknesses in different ways. Assuming you've had chemo..? I'm guessing you handled it fairly well compared to others.? I only got sick to the point I was vomiting for a few days, but I still felt sick. At the Florida Cancer Specialist and Research Institute I witnessed several young adults as well as old adults pretty much with CVS from the chemo. I am lucky enough not to have CVS myself, but my fiancée has it and I personally witness it about 3-8 times a year. Each lasting about a week to 2 weeks long. They are equally similar.