Cyclic Vomiting Syndrome

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Cyclic Vomiting Syndrome
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Cyclic Vomiting and unneeded texts

So I want to start by saying “Hello.” I am new to this platform and looking forward to learning and interacting with others.
Cyclic Vomiting Syndrome is also known as Abdominal Migraines.
For the record I am not a doctor or nurse. I am a former EMT but what I’m writing is based on mine and my sons story along with some things you can try to get the treatment you need.
My son was 3 months old when he started vomiting nonstop for weeks at a time. I’d take him to the doctor and was aways told that he had the flu! Urg! This was happening every 3 weeks like clockwork. Well it doesn’t take a genius to know that if something happening this often and he’s Vomiting 30-40 x’s power hour for 4 days, it’s clearly not the flu. So I did what I learned through all my years in the medical field. I started documenting Everything!! From the moment he woke up until the moment he woke the following day. I wrote down every wet diaper, dirty diaper, wake up times, play times, everything he ate and so on. I had to do this everyday no matter what. I wanted to be able to take him to the Dr and have everything on paper so I wouldn’t keep hearing it was the flu.
During the time of logging everything I noticed a pattern. My son would get constipated and I would have to give him one of the baby suppositories. Remember this is all between 3 months old to age 2. After the suppository was in he would immediately start crying this horrid cry and I could only hold him and cry with him. He would push so hard that his face turned bright red and he would shake uncontrollably while having that pain scream that you’ll never forget.
I finally decided to go outside my health insurance network and to a Pediatric Gastroenterologist Specialist. I walked in with baby in tow, explained to the Dr everything and handed him two years of daily logs and episodes.
Within about four pages the Dr looked up at me and said “Your son has CVS” and went on to explain it to me.
Here’s the 1st thing and most important thing he said to me, “There is no test available For CVS patients. Many don’t get diagnosed for years and years while having every awful test known to man is being done to them. Don’t subject your son to these and tell every Dr he sees that he has Cyclic Vomiting Syndrome period.”
I also learned that women who suffer from migraines have a higher chance of there Child having CVS. I explained to the Dr that I have migraines every month and that are hormone induced. I would get one the days before I started my period, 3 days and 3 days after. I had been that way since I was 12. If I couldn’t break the migraine then it would stay until the following menstrual cycle. I was shocked to hear the Dr tell me that I actually had CVS also.
This is where he told me MOST DRS DON’T EVEN KNOW ABOUT CVS. My son is 23 now and hasn’t cycled in awhile but he grew up cycling every 3 weeks. I learned that the moment he would vomit were just needed to go to the ER. 30-40 x’s an hour for a week isn’t safe. At first the ER Dr would say it was the flu but on one visit it was a different Dr. I told him my done diagnosis and he was pretty familiar with it. So up until 8 years ago, when I would have to take him to the ER, the Dr made a huge note in his chart as to what he had, the symptoms he presented with and the treatment. Got to the point I’d just tell the drs so they didn’t have to go through his large chart.
So speak up if you have been diagnosed with CVS. Tell the drs they can find the information on an app they often use called MedScape. Chart symptoms and times and so on. Always try to bring in what you’ve worn down. You know the difference between what the flu feels and looks like vs am episode so don’t let yourself get bullied. If you know your treatment that works tell them. And most importantly, CVS patients are looked at as drug users with withdrawal symptoms but no drugs show on a test, and are turned away. ALWAYS ALWAYS if a Dr says no to you, for instance you know the treatment for yourself but Dr refuses to do it, tell your Dr that you want it logged in your chart that you asked him for (whatever it is) and that he refused. Then tell them you need a copy of it before you leave.
I apologize for any and all errors


Anyone heard of this woman??

Hi everyone! My name is Amy and I was recently diagnosed with #BorderlinePersonalityDisorder . Just like when I was FINALLY diagnosed with #CyclicVomitingSyndrome it’s weirdly refreshing and freeing just to have a name to put on the thing that has controlled my life and destroyed my relationships. I found this site by accident. I am in healthcare, so I am an research (peer reviewed, empirical, stories, videos…whatever will help me understand) so I typically end up spending hours going down multiple rabbit holes.
I doing this, I ran across videos from a lady named AJ Mahari. WOW! If I didn’t hate who I was and what I did to those I love before, I surely did after watching some of her stuff!! I realize her videos are more directed towards the partners of those with BPD, but she is brutal and so off course on several things. The two videos that stopped me in my tracks (because all of the research and articles I read say the exact opposite, and I know what I feel) discuss that 1) “Borderlines Don't Cant & Won’t Love You or Attach To You”, and 2) “ Loving a Borderline Is Impossible”. Well if my inner demons weren’t screaming already, they certainly were after seeing and hearing her video. Has anyone else “experienced” her? #BorderlinePersonalityDisorder #CyclicVomitingSyndrome #Depression #Anxiety

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Experienced yet confused

I have suffered from depression and anxiety for as long as I can remember. I also have seizures and Cyclic Vomiting Syndrome, PTSD, been told I was bipolar by a shrink I have sought help and now take medications to help. Even though I myself for the most part can handle myself I have recently found out my 16yr old son is so depressed he is suicidal. I knew he was depressed I guess I didn’t realize how depressed he really was. I got him to see a counselor but they only meet for 30 min every 2-3 weeks. I don’t feel like it’s enough am I wrong? He doesn’t want to take meds. Should I make him? Should I have my Pastor counsel as well? Can anyone please give me any advice? It would be much appreciated. Any ideas or advice anything would help. I’m so worried and it’s making my anxiety and depression worse but I would never tell him that. Does anyone have any ideas that could also help me? I’ve seen about drawing or coloring, reading, and writing. Does anyone find that these things help for themselves or for teens? Again any advice or ideas would be so great. Thanks in advance.

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Disability shaming again?! Ugh👎🏼 #Disability #InvisibleDisability #ChronicPain #ChronicIllness

Have you guys seen this story making its rounds in the news, TMZ and NY Post? A young man in Australia was at a McDonald’s, in a handicapped parking spot with his placard displayed and had an elderly woman confront him to ask if that was his placard and If he legitimately needed that spot. He then gets out of his car and shows his prosthetic leg… She claimed she had “the right” to ask him if it was his placard or not and if he needed it. What are your thoughts? 💭
How many have had this happen to them or a friend? 🙋🏼‍♀️ Where someone assumes and questions the validity of your handicapped placard and the need of a spot or the need of a mobility aid? ♿️
I know I have, being a young person having a placard and mobility aid I’ve gotten so many dirty looks and head shakes. It use to bother me more when it happened to me but usually I’m in too much pain to care!!! 🤣🤷🏼‍♀️ What infuriates me is when this happens to others in our disabled community. Haven’t we come further as a society with our education to know that not all disabilities are visible?! This can be so damaging to us. I figured until someone has limped a mile in my walker and in our place, they don’t have the right to question our validity. Just my hot take 🙌🏼♿️ We are stronger and mightier together, wishing the best week for you all ❤️🙏🏼 #ChronicPain #ChronicIllness #BackPain #MastCellActivationDisorder #RheumatoidArthritis #sciatica #Migraine possible #ComplexRegionalPainSyndrome #Costochondritis #SpinalFusion #Anxiety #Insomnia #CyclicVomitingSyndrome


Advice for trying not to eat when you throw everything up? #Gastroparesis #ChronicIllness #CyclicVomitingSyndrome #ChronicPain

I’m not able to eat at all without throwing up and in turn being in excruciating pain after. I get cravings and get hungry like everyone else, so I just give in and eat knowing i will regret it. Does anyone have advice or tips for ignoring wanting to eat/ignoring the cravings or trying your best not to eat?
#Gastroparesis #ChronicIllness


How can I get rid of heavy periods and pms?

Every time it's the same. My periods and my pms are always heavy and cause many side effects like, pain, cramps, nausea, dizziness, exhaustion, and sometimes passing out. Another problem is that I often have it twice a month and that hormonal medication doesn't work well and causes uncomfortable side effects. How can I get rid of it? #Dysmenorrhea #Period #Periods #NauseaAndVomiting #CyclicVomitingSyndrome #PMS #exhaustion #Passingout


Easy Food Recommendations?

I’m on TPN because I have an undiagnosed Stomach Disorder that my Doctors are still trying to figure out.
The thing is that I try not to eat as I get severe pain from it and I throw up every single thing I even try to eat because I can’t hold it down.
Does anyone have any recommendations for foods that are easy to come back up?
#TPN #ChronicIllness #Food #Gastroparesis #ChronicPain #Advice #Recommendations #CyclicVomitingSyndrome #Other