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Sunday, August 26, 2018

Stories of Hope From Gastroparesis Warriors

I know there is a lot of negativity involved when you have a chronic illness. It is hard to push negative thoughts out of your head when you cannot go out to eat with friends like you used to, you cannot go to see the latest movies, and you are basically stuck at home, sick all day. It requires a lot of energy from people who are suffering from Gastroparesis to even walk across the room, some days. In the process of coming to terms with an illness like this, Gastroparesis Warriors tend to lose friends, either because the friends do not believe them or because they are too sick to go and hang out, like I mentioned above. Gastroparesis is a very isolating illness, and it hurts us not to be able to do the stuff we once did.

I started having a monthly movie night at my house, scheduled on every second Saturday of the month, so my friends can come over and we can watch movies, play board or card games, and just hang out. It means a lot to me that my friends are willing to do that. I thought I would mention it in here in case someone would like to do something similar. I may not be able to go out all of the time, but it's nice to have people who care about you enough to come over and spend time with you. I wanted to turn the negative into a positive.



Source:Wisdom Quotes and Stories



I wanted to share some Stories of Hope for you, from other Gastroparesis Warriors, in case you are feeling down.


My friend Jen writes,

"I was a very healthy 38 year old woman when I got sick suddenly in March 2017. I fainted a few times and broke my nose badly and suffered a severe concussion. I had surgery a few weeks later to fix my nose and the following day felt even worse. It was as if over night I could not pass gas, could not have a bowel movement, could not eat solid food or drink anything except Coke. I thought it was related to my narcotic painkillers I was prescribed after surgery. However, it got worse over the next few days and being concerned that I had a ruptured appendix, I went to the ER. They did a CT scan and found a large ruptured ovarian cyst. They gave me more pain meds and sent me home. It didn't get better, only worse. Two weeks later, I went back to the ER suspecting a small bowel obstruction. My CT was negative and they referred me to a GI doctor. I ended up having a upper/lower endoscopy, abdominal ultrasounds and a HIDA scan. At this point, being an RN myself, I suspected I had gastroparesis. I pushed for a GES, which showed more than 80 percent of my 'meal' still in my stomach at 4 hours - severe GP.

At this point, I still couldn't eat food and could only drink Coke and sips of Ensure/Boost. I was getting IV fluids and IV zofran as an outpatient 3-5 times per week. In early June I got an implanted port and home health care, which helped a great deal. I was on 2L D5NS a day plus 8 mg IV zofran every 8 hours. In late July, I started Domperidone. After a couple of weeks, I found I could slowly eat a few "safe" foods and my oral intake improved.

By the end of October, I was off my IV fluids/meds and eating a little bit better. I managed to put weight back on after losing so much. I had been off work as a labor and delivery nurse on disability since March and in late December went back on a very part time basis, slowly increasing my hours over the following few months.

It is now June 2018 and I am doing well, all things considered. I can eat a small amount of my 'safe' foods and the only liquid I can drink remains Coke (even water makes me vomit). I am at a healthy weight for me finally. I am off the domperidone and only access my port once a month to flush it with heparin (off all IV fluids/meds). I am hoping to get my port out later this summer if I continue to do well. I receive vitamin B-12 injections every six weeks and take prescription vitamin D supplements as nutritionally I'm still recovering from severe malnutrition. I still battle some pretty severe fatigue and ended up having to reduce my hours at work from full time to part time to accommodate my lower energy levels.

I am so thankful that I (narrowly) avoided a g-/j- tube and have managed to improve over the last year on my own. My GP was considered idiopathic, meaning they don't know how or why I developed it. They suspect it was either due to damage to the vagus nerve in my repeated fainting episodes or that it was viral in natural. Given that it's improved, I'm leaning toward viral, but we won't ever know for sure.

I received SO much amazing support in the Facebook groups I belong to over the last year and while I haven't been posting in them much lately, I think about all of those people very often. I want others to read my story and have some hope. I know when I was really sick, I had very little hope and it was stories like this that made me think some sort of recovery might be possible for me. I continue to watch many of my friends struggle with GP and my heart goes out to them."


She also included her before picture:



Here is Jen's after picture:


I want to thank her for being brave enough to share her story of hope.




The stories below were sent to me a while ago to include on my website, but I wanted to put them in my blog too because these people deserve to be heard. Plus, you never know, you might relate to some of these stories or they may help you.

The first story is about my friend Kerri, whom I lost this year. It hurts me to talk about but I wanted to put it in my category of "Stories of Hope" because I think she would have wanted that. She would want people to take a positive message from her story and to keep fighting. I believe she would want her story shared so that the same thing does not happen to someone else. Therefore, I present to you, Kerri's story.

Taken from GP STORIES.


Here is Kerri's story:

"My good friend Kerri passed away day before yesterday (in March). She was only 40 years old. She used study Human Development and Family Studies at Colorado State University, with degrees for the Deaf and Blind to help them. I feel like I've lost too many friends over the year.

This is going to be long but a mutual friend wrote this and I thought it summed up how I feel:

'She didn't have to die yet, the state of medical care in this country killed her. Kerri and I originally met on a service dog forum many years ago. She was an amazingly talented person as well as selfless and with a childlike innocence and sincerity.

She trained her own seeing eye dog!

Those in the SD (seeing dog) community understand how difficult and special that is. When she needed more mobility assistance she was unable to get another guide from an organization.

Kerri's medical care was complex due to the multiple disorders she had and especially by her blindness. She was dependent upon a form of IV nutrition called TPN to live and many IV medications. Being blind obviously complicated this and she relied on a home health nurse to come daily and set things up for her to be able to use safely and continue to live independently. She struggled with frequent hospitalizations due to life threatening infections. At her last one it was determined she was no longer able to live at home alone. She would need to find a skilled nursing home to be discharged from the hospital.

That discharge never happened, after being turned away from 51 different skilled nursing homes. They refused to take her in due to her TPN requirements. Insurance didn't allow for any further assistance in her home than she was already receiving.

Kerri had many friends both online and in her assisted living apartment complex. She continued to work from home for jamberry until not too long ago. In her younger years she was a competitive ice skater despite the blindness. Had also recently been correctly dx (diagnosed) with conditions that explained symptoms and complications she'd experienced for MANY years and started treatment (it takes way too long to receive correct diagnosis). Now we will never know how much function she could have gained back. Especially, the improvement of the immune system to prevent the frequent life threatening infections.

Due to the inability to find medical care in the form of a safe place to live, she made the only choice she had, which was to die. It didn't have to be this way. She decided upon the next infection she would not treat it. That was taking too long, and she began to discontinue treatments that sustain life such as the TPN and IV hydration (she was completely unable to use her gastrointestinal tract). She has now passed on.

We need to improve the medical options available for complex patients. We need to improve insurance so people can receive the care they need. We need to stop the incentives for doctors to refuse care (for fear of litigation and punishment from the government. Today in medicine it's safer for doctors to walk away from complex patients rather than open themselves up to the risk, something I've experienced myself as well). We need to incentivize medical professionals to provide the best treatment they're able.

We need to improve.

We need to change.

We need to save the Kerri's of the world, allow them to live as long as possible to contribute to the world.

No one should die simply because people weren't willing to TRY. She didn't die because her condition got worse and not because there were no treatments available. She didn't die waiting for a medical breakthrough (though one that could have cured some of her conditions instead of maintaining them is a future goal).

She died simply because no one was willing to provide what she needed and was available. She had so much more to give the world. She is survived by family, including her amazing Labrador guide and mobility assistance service dog Sophie as well as her daschund Mandy, and many friends.'"


Kerri in the hospital via Facebook.










Trish's Story of Hope:

"Trish’s Story of Hope

Written By: Trish


"My name is Trish Rhodes, and one day back in April 2011, I woke up one day with nausea and constipation. So went to work and it was awful the whole day. That weekend I was so sick, I had started vomiting, major stomach pains and slept most of that weekend. So I went to the doctor that following week, then the tests began. I did a CT scan of abdomen area, MRI of bile ducts, EGD, MRCP, many blood tests. All tests came back normal. This was hard to take so I went back to my GI doctor and it seemed like he had given up on me. So I went to my PCP and told him how I felt about the GI doctor and previously I had done some research and came across the GES test. So got that scheduled and it came back abnormal. Finally I knew an answer. But I sure didn't know the extent of this awful condition. My GI doctor was no help so I fired him and got referred to another one 2 hours away.



I would say about a year later I went to this 2nd GI doctor and I like him, he spent the time to talk to me about how I was feeling, what I was eating, my weight, etc etc. Then he wanted more tests. Blood tests, Colonscopy, another GES. Everything was good besides the GES. So that was hard hearing that information again for some reason. So then I dont hear from this doctor for almost a year and finally schedule another appointment which I think are pointless because these doctors are no help whatsoever! Now he is all concerned about my weight, which I weighed the exact same as the 1st appointment. Another depressing appointment. He did put me on some pancreatic enzymes because I had pancreatitis when I got my gallbladder out 6 months prior to these symptoms starting. It feels like they may be working but not sure. Also they have no idea on why I got this.



So I decided to go to a chiropractor. My initial thought was to try acupuncture but my insurance doesn't cover this. So I went to appointment anyways and I feel almost 75% better. I still have my moments and have a lot of stomach pain and nausea. I have to take Tramadol for the pain and it takes care of it for the most part unless I am having a bad flare up. Those usually lasts weeks. But I feel like something has changed since going to this chiropractor. I am very limited on what I eat. Hardly ever eat out and when I do its really hard, lots of anxiety I may eat something wrong or whatever. I also have a 4 year old daughter so I have no time to be down. She just won't allow it. She has Chiari Malformation (rare brain disorder) so she needs me to be healthy and strong for her on the days she has headaches, neck pains, leg or foot pains. I am 5ft and weigh 94 lbs. So I am very underweight. But I still want there to be more research. I do take Domperidone and there needs to be more testing on that drug or it be available in the United States because it works for me. It definitely takes away my nausea. Please help us find a cure!!! There are so many people that suffer from stomach conditions and we all need help!"


Brie and Trish.









Here is Leanne's Story of Hope:

"Leanne’s Story of Hope

Written By: Leanne



Hi Everyone, I was asked this past Sunday to write a short bio of myself, and to explain why I think it's important to fight gastroparesis.


I'm 42 years old and live in a small town called Tillsonburg in Ontario, Canada. I have a wonderful boyfriend, we've been together a for a couple of years, and we have two cats and a dog. I also have amazing parents who have advocated and fought for me every step of the way.


I've had GP for 30 years, but went misdiagnosed for the first 20 years. I kind of consider myself a GP veteran with this many years under my belt, but in no way do I think that that makes me an expert. My GP symptoms began around the age of 12, after I incurred a a pretty bad back injury, spondylosis with severe degenerative disc disease and spondyloarthritis. My injury also went misdiagnosed and worsened over time. While it's been speculated that this is the contributing factor to my GP, no one is sure. I also have severe IBS.


The first 20 years were tough. Doctors, meds, tests, and lost opportunities. I ended up having to drop out of University in my 3rd year due to GP, I had hoped to get my PhD. in psychology. I learned pretty quickly that life doesn't always turn out as one hopes. For the last ten of those 20 years it was "all in my head" according to the doctors, and I often found myself in that medical paradox, asking for help from the medical community that I was at the same time constantly fighting.


At this point, I had given up. I was horribly sick, I had lost over 100 pounds (my weight has always fluctuated, I've gained and lost over 100 pounds 5 times now, with smaller fluctuations in between). My doctor refused to give me another feeding tube, because my "issues were psychological" and not medical. To be completely honest, I thought I wanted to die. I'd had enough and I had come to the realization that no one was going to help me.

There I sat, looking out the window, at my lowest point, thinking about how absolutely horrible my life had turned out to be. Then, out of the corner of my eye, I spotted a hummingbird. I watched her going about her business, going from flower to flower, doing her thing. Suddenly, I noticed something. I WAS SMILING. Here I am, at the lowest of the low and something so inconsequential as a hummingbird was able to put a smile on my face. It had brought me a moment of joy, something I had not allowed myself to experience while I wallowed in my misery. I had gotten so caught up in my fight with GP that I had forgotten to allow wonder and beauty into my life. I suddenly realized that my spirit, while beaten up and bruised, was not broken. I was and am far tougher some shitty illness.


I pulled myself up, got myself together, and started to REALLY ADVOCATE for myself. I found a specialist on my own, went in with an agenda and plan of what I wanted and what I was willing and unwilling to do. To make a long story short, my advocating made all the difference, and I was finally diagnosed soon after.


Since my diagnoses, life has been better. It's still really rough at times, as everyone with GP knows. It's very easy to allow oneself to get completely caught in the medical misery of it all. The one thing I'd like you to take from my story is, to take a moment, a breath, if you will, and allow yourself to see the wonderment and joy life has to offer, no matter how fleeting that moment may be. Those little moments are the things that make the fight worthwhile.


You'll realize that you are tougher than you think, and you just may find yourself smiling.

Much love."


This is a picture of Leanne.







This is Daniel's Story of Hope:

"Daniel’s Story of Hope

Written By: Daniel


Last night was a good night. I felt well enough after work to clear the snow from our neighbor’s driveway as well as our own. It took a long time and was heavy, wet snow (got to love New England) but I didn’t even have my usual wiped out feeling after. My son watched me with the “tractor” (snow blower) out the window and I gave him snowballs to eat, his favorite. When I was done I came inside, wrestled with my son in the living room, ate dinner with the family and watched a movie with my wife before bed. Unfortunately because I was feeling so good and having fun, I made some bad food choices.


Today was not a good day for my Gastroparesis. I woke up in the middle of the night with the usual nausea and beyond full stomach. I woke up this morning and knew it would not be a good day. I was wiped out, my nausea was terrible and I just wanted to go back to bed. But I got ready and went to work. Things only got worse from there as my nausea increased. At one point this morning I did not think I could make it through a meeting for fear of vomiting. But I pressed on.


I kept telling myself to just make it a few more minutes, to just focus on a specific task, to just calm down and keep going a little more. It reminded me of when I used to run. When I would get so tired I would say to myself, 'just make it to that next tree,' then, 'just make it to that next pole.' It’s a constant struggle, almost like a game, albeit a terrible one!


My wife and son came to visit for a minute and that made me feel a little better, emotionally if not physically. I was discouraged for sure. A great night turned into a bad day and I am tired of that. But I also felt better by trying to remember to pray when I was discouraged so that my illness would not ruin my relationships or my testimony or my joy in life. It is so easy to be consumed with being sick or with discouragement. That is a daily and ever present struggle for those of us with a chronic illness. A good night can turn into a bad day tomorrow. For some of us, we know how a good hour can lead to 10 bad hours, we never know what to expect.

My encouragement is to keep going for just one more hour, just one more task. Use those you love for support and encouragement. Above all, continue to pray that you would not be consumed with your illness. Do not let it rob you of your joy and keep pressing on!"



Source: Above, In image



Here is Jennifer's Story of Hope:

"Jennifer’s Story of Hope

Written By: Jennifer


Hi my name is Jennifer I am 45 years old. I have had stomach issues since my teenage years, starting out with what doctors said was Colitis. I always had either diarrhea or constipation, and the doctors also thought I had IBS. In 2008, the problems were just intensifying! The doctors believed my Gallbladder was causing my issues so they removed it. After the surgery, it just went downhill. The Surgeon that removed my gallbladder knew there was something else going on and he was worried but said I had to go to a GI specialist. There was nothing more he could do for me.

I found a GI specialist and when I walked into his office, he looked at all of my records and without doing any tests told me I had IBS. He gave me Reglan and sent me home. When I let him know it was getting worse and medication wasn’t working, he basically told me it was all in my head and nothing more could be done. That was in 2009, so I was done with doctors. I was beginning to believe it was in my head. I went the next few years dealing with the flare-ups and the ups and downs, and it was hell!

Then in 2011, I received the worst news that anyone could get. I had a very rare cancer that only one in a million people get (dermatofibrosarcoma protuberans). The only way to treat this is with MOHs surgery. They removed quite a big section out of my shoulder and were able to get clear margins. I will be cancer free for two years in September of this year. Yea! Needless to say, the healing was excruciating and my stomach issues were put on the back burner.

In November of 2012, I had a flare up that would not go away and it also came with new symptoms (extremely nauseated, lost weight quickly, etc.). I went to my family doctor who sent me for a EGD. It came back normal but the doctor felt he needed to do one more test which was the Gastric emptying test. I thank God he ran that test because that's when I finally got diagnosed with GP (not a good thing but at least I knew it wasn't in my head, I was not CRAZY).

I am a small person to begin with weighing at around 100 pounds and 5 foot tall. At this point I was at 92 pounds. After being diagnosed, I found a good GI doctor who put me on Reglan again. Of course it didn’t work. He told me there was nothing more he could do for me and recommended that I stick to a strict diet.

At this point, I had been on just a liquid diet due to the pain and extreme nausea and I was getting weaker and weaker. He told me that I was not a candidate for a feeding tube because I had not lost enough weight. WOW! I couldn’t believe that.

Within two weeks I was declining quickly, and becoming more and more malnourished. I was very weak and I lost more weight until I was down to 87 pounds. I called the doctor and that day. He saw me and set me up with an appointment the following week for a feeding tube.

The day I went in to get the feeding tube, it had been one week since I had seen the doctor. I found that I had lost more weight - four more pounds. I have the feeding tube now and I know it will be very helpful. It doesn't seem that way right now but I know it will.

I have to fight to live. I mean I fought cancer and I beat it! Now, I know that this disease will not go away as there is no cure but I’m a fighter! I need to fight for the ones I love and I need to show this disease that it’s not going to take me down that easily!

Some days I break down and just sob, though. This illness has taken away so much from me in such a short amount of time. But, it can't take my four wonderful daughters, my extended family, my grand kids, and my best friend of all my soul mate (my husband) away. They are my life! Bless their hearts!

This has taken such a toll on them watching me go through what we all go through with Gastroparesis. No matter how hard it gets, please know God is there with you and he will carry you when it gets too hard to walk. Please know that there are wonderful support groups that will walk every step with you! All of us GPers are family! May God bless each and every one of you!"



Source: Google Images







This is Shannon's Story of Hope for Conflict Resolution:

"Shannon R.’s Story for Conflict Resolution

Written By: Shannon R.


I know many people have issues with others who may not understand Gastroparesis and they may act horribly towards you because your outward appearance seems fine. Here’s my advice:

When you are angry with a person please try to find the solution to the problem, don't let it fester because when it does it turns into anger, and when we are angry it turns into depression. So in order to resolve our daily conflicts there are some very easy things that we can do to not carry it around with ourselves and make us sicker than what we already are.


There are some simple ways to rid us of it:

1. When we are in argument we must play the tape back and see the part that we played in this situation. We always have played a part not one of us is totally innocent.

2. When you see that you don't want to forgive that person we should pray for that person for 30 days and if that doesn't work we must pray for them even longer at times.

3. The third thing we can do is look for a good sized rock and carry it around with us to remind ourselves if this is a regret we would like to carry around with us for a long period of time or short period of time.

4. The next best thing that I really have a lot of respect for is that when we are ready to forgive that person is that we say: I forgive you, Thank You and I love you.


Number 4 will be the one that really catches a person off guard because they are not sure how to respond to it and the other party will feel pretty good about it and they might just forgive you for it."




Source: https://bravefragilewarriors.wordpress.com/2017/08/18/we-cannot-lose-hope/



This is Charline's Story of Hope
Written By: Charline


"Three years ago my daughter, 13 at the time, had just entered junior high. She started having terrible stomach pains. I thought it was anxiety or something was going on in school. It was neither. Her GP even thought she was exaggerating. Then the time came when I became fully vested in finding out what was wrong.

My heart hurt for her.

She was missing school and dance which she loved. Her friends didn't believe her. So after a year of research, many doctors appts, testing and changing her diet a few times we finally found out that she had Gastroparesis.

Knowing made it so much easier to deal with. FINALLY!

The specialist put her on all of this medication that I wasn't overly thrilled about. The GI Doctor also had her go to a counselor to help her deal with this. That was a brilliant move on the doctor's part.

My daughter not only figured out how to deal with this medically but also mentally. She ended up getting off most of the medicines and is now on Pro bio tics-Ginger root-and enzymes with every meal. She started putting weight on and gained her confidence back.

This will be something that she will have to deal with for possibly the rest of her life, but once you find out what works for you then stick with it. Only keep good positive people around you. Your stress level will play a major role. Stay strong and positive. I am happy to say she is doing well and I am sure you will find you path. It may take a while, but never give up. You are so worth it!"




Source: https://www.quotemaster.org/images/35/358024357f0db0b85059c876e966ad3d.jpg


If you have any Stories of Hope that you would like to share to be added to this article, please email me at: emilysstomach[at]gmail.com.



Thursday, August 23, 2018

Bringing Awareness to Cyber Bullying

There has been a lot of bullying going on within the chronically ill community, a lot of which has been in the gastroparesis community, which is the only one I can really speak on. Furthermore, I cannot speak on behalf of my friends, but I can tell you that I have been cyber bullied to the point where I wanted to leave all social media altogether. I thought that since we are all chronically ill, and that we all share the diagnosis of gastroparesis, that we were supposed to be united. Instead, people or groups who are chronically ill find a person to target and make their lives a living nightmare.

We, the chronically ill, face enough adversity from doctors, nurses, family, and friends; people who do not understand gastroparesis or think it is all in our head. I had this notion that we should be working together to promote understanding and educate those who may not know about our illness. I never, in a million years, thought I would be the target of cyber bullying by the people who were the ones who were supposed to understand more than anyone, by the people who were supposed to be there to be help to support you, and by the people I thought I could count on. I never thought that I would be the victim of cyber bullying. I wrote this in August of 2013, but I think it still applies: http://www.emilysstomach.com/2017/08/cyber-bullying-and-gp-community.html



Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=imgres&cd=&cad=rja&uact=8&ved=2ahUKEwi3t9f7oITdAhUvneAKHd4WBzIQjRx6BAgBEAU&url=https%3A%2F%2Fwww.slideshare.net%2Fparulata%2Fabhishek-cyber-bullying&psig=AOvVaw2p615526q1dftVgPza3vZ6&ust=1535150920149901



Cyber bullying is a big deal. There have been cases of people committing suicide over being cyber bullied. The first person that comes to mind is Gabriella "Gabbie" Green, who committed suicide in January because of cyber bullying.

I wanted to bring this into the light and talk about this issue because words do hurt, more than people realize, and cyber bullying has become a BIG problem. I want to bring awareness to this issue because it might help save someone's life.

There is NO excuse for cyber bullying. I was just so shocked to learn that it was happening in the chronically ill community, not just the gastroparesis community. I understand that we are all sick and that we all have bad days, and that does happen when you have a chronic illness. However, that does not give a person a right to bully someone else. I do not understand the reason behind the cyber bullying or why people need to hurt others like that. With gastroparesis, this kind of stress for days (in my personal experience, I was cyber bullied across all of the social media sites I made an account with) can cause a horrible gastroparesis attack that may land people in the hospital.




Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=imgres&cd=&cad=rja&uact=8&ved=2ahUKEwiCmqn4oITdAhUnneAKHYvvD0YQjRx6BAgBEAU&url=http%3A%2F%2Fwww.girlsarepowerful.com%2Fwhat-is-cyberbullying%2F&psig=AOvVaw06_ZcH1jHEf3UY5CNmcaRL&ust=1535150913398991



People need to understand that words hurt and can do some real damage. You never know what struggles the person on the other end of the computer may be facing. All people see is what is posted online, and that is it. The people who are cyber bullying may not realize that the person they are terrorizing just had a death in the family, had surgeries, or just found out they have another illness which could kill them at any moment. Like I said, you never really know what is going on in someone else’s life. I guess the chronically ill are easy targets for cyber bullying because people assume we are too weak and sick to stand up for our principles on the matter, but we are not.

I always envisioned ALL of the chronically ill, from fibromyalgia to gastroparesis, working together to get information out there and to help others whom battle chronic illnesses, especially if they are newly diagnosed. It is not about ganging up on people, controlling groups, pages, who has the most members on Facebook, etc. It is great to have so many options for support, and people can join more group. Joining groups on Facebook should not be a competition and the person should not be cyber bullied for making a decision on a group that fits them.

It's about support, pure and simple.



Source: https://west.ite.edu.sg/_layouts/showcase/2016/mwd/junhong/images/cyberbullying_diff_1.jpg



There are so many obstacles that we have to go through with gastroparesis, we shouldn't manufacture more, we should stand united. We need to educate those who may not know about gastroparesis and what that entails. It's August, Gastroparesis Awareness Month. We should rally together to educate, not tear each other down. Divided we fall, united we conquer.

I want to talk about cyber bullying, since I'm experiencing it firsthand, and what it's doing to the gastroparesis community and other chronic illness communities. I also want to help others who may be going through the same things. It's hard being bullied, especially if Facebook will not listen and you don't have any other recourse. I'll share some things I have learned and some tips from an anti-bullying site that I found. We should be lifting each other up, support one another, and working together to make a difference. All of this in community fighting hasgo ton stop before someone is pushed to suicide. While having gastroparesis is hard enough, and I will repeat this again because it’s important, we face enough adversity from doctors, nurses, ER staff, etc., we don't need it from each other.




Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=imgres&cd=&cad=rja&uact=8&ved=2ahUKEwjFuMPtoITdAhUQPN8KHQJcAToQjRx6BAgBEAU&url=https%3A%2F%2Fwww.slideshare.net%2FYumnaAli6%2Fcyber-bullying-72410753&psig=AOvVaw0gw3aE5Gs7aMvX67PpT1of&ust=1535150890025499







Source: Imgur




So, here's what you can do to avoid cyber bullying.

1. Do not feed the troll. What I mean by that is, do not give the person fuel for their fire to keep attacking you. As hard as it is, stay silent. These people crave attention and will try to get it by any means necessary. There is a wonderful article that states,

"Narcissists and Psychopaths Online: The Narcissism of Cyberbullying and Trolling
by Shahida Arabi

Cyberspace provides malignant narcissists and those who have antisocial traits with easy access to victims and minimal effort. A recent study showed that online trolls demonstrated high degrees of sadism, psychopathy and Machiavellianism. Conclusion? In the words of Dr. Golbeck, internet trolls are narcissists, psychopaths and sadists.

This should come to no surprise to anyone who has encountered trolls or cyberbullies – they are notorious for attempting to provoke people in order to derive sick feelings of satisfaction that they apparently can’t get anywhere else. Their lack of compassion, tact and empathy when bullying others online is evident in the way they brandish their ill-informed opinions indiscriminately regardless of context, eagerly hoping to get recognition for their malice.

Cyberbullying and trolling are strategic ways for narcissists who lack adequate narcissistic supply or who are experiencing boredom to get a quick “fix” without being held accountable for their abuse.

In the context of intimate relationships, survivors of narcissistic abuse, an insidious form of psychological and emotional abuse that can cause what psychotherapist Christine Canon de Louisville calls “Narcissistic Victim Syndrome,” may be stalked, harassed and cyberbullied for years even after the ending of the relationship, especially if they were the ones to discard the narcissist first by exiting the relationship altogether.



Source: http://www.pngdown.com/research-paper-on-cyber-bullying/the-real-effects-of-cyber-bullying-nobullying-cyberbullying-research-paper-infogr/




When a narcissist suffers from an offense to their false sense of superiority and entitlement, they endure what is known as a narcissistic injury, often followed by narcissistic rage. This rage is a result of an injury to their ego when something or someone threatens their delusions of grandeur and “false self.”

Since survivors often implement No Contact with their abusers, narcissistic abusers feel a loss of power and attempt to regain that power through tactics like provocation, hoovering and post-breakup triangulation techniques.

On the internet, narcissists and those who have antisocial traits employ similar manipulation tactics in cyberspace to provoke and harm complete strangers.

Bullying in any form, especially anonymous bullying, can lead to devastating results. Research indicates that cyberbullying in schools leads to a higher rate of suicidal ideation and suicide attempts in victims of cyberbullying. There have been a number of suicides that were triggered by the words of anonymous sadists – the suicides of many teenagers, for example, were a direct result of cyberbullying.

Cyberbullying and trolling leave such a terrible psychological impact that there is even a movement against anonymous comments sections on media outlets. Since there is little accountability for cyberbullies and the laws against it in each state may not protect victims entirely from emotional abuse, it often goes unchecked and unpunished. If cyberbullies are ever reprimanded, it is usually after the fact of a tragic suicide or another form of publicity that draws attention to the consequences of cyberbullying.

Cyberbullying can also be retraumatizing and invalidating for survivors of abuse and trauma. Specifically, in the narcissistic abuse survivor community, narcissists tend to support other narcissists and both survivors as well as professionals may come under attack for speaking their truth about narcissistic abuse. There is, unfortunately, a great deal of victim-blamers and enablers online who support the actions of abusers or vilify advocates that expose the predatory nature of abusers with Narcissistic Personality Disorder or Antisocial Personality Disorder."
The article can be found here if you would like to read then rest of it: Narcissists and Psychopaths Online: The Narcissism of Cyberbullying and Trolling by Shahida Arabi




Source: Located on the Image.





2. Block these people. They have no control over your life unless you let them. You are better off without these toxic people in your lives. You ARE important, and don't let these people have control over what you do.

3. Write yourself an email. Every time these people hurt you and you want to say something back, write yourself an email and send it to yourself to get your feelings out. That way, you don't bottle it up and you can get out what you want to say. You don't need to send it to anyone else, this is just for you.

4. Do not be scared. Don't be scared to login to Facebook or wherever these trolls might be lurking. That would be giving them power over you. Don't let them. You're better than that, and like it or not, these people are going to be everywhere so there is really not a way to avoid them.

5. Do not give in. These people want something from you, don't give it to them. Bullies usually won't stop until they can get what they want. I will give an example. This is a popular one - in movies and T.V. shows - bullies want lunch money. They will not stop punching you in the gut until they get it and run off. So, don't give the bullies your "lunch money."

6. Do not stop living your life. The thing with bullies is that they will try to interrupt as much of your life as possible. Do not let them. The world spins on. You should keep living your life and do not let them make you deviate from it, because that is their goal.




Source: https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=imgres&cd=&cad=rja&uact=8&ved=2ahUKEwjFuMPtoITdAhUQPN8KHQJcAToQjRx6BAgBEAU&url=https%3A%2F%2Fwww.slideshare.net%2FYumnaAli6%2Fcyber-bullying-72410753&psig=AOvVaw0gw3aE5Gs7aMvX67PpT1of&ust=1535150890025499





I would also check with your state and see what laws they may have in place about cyber bullying. If you are currently being cyber bullied, do not give up. I had to block many people on Facebook when I would first log in. You can also report those people, located on a drop down menu on their cover page, before you block them to let Facebook know. You can also look up their guidelines and there is an email address they give you to send your difficulties to them. Additionally, there are support groups on Facebook for cyber bullying you can join. I would also recommend talking with a psychiatrist about it, because your mental health is important, especially with gastroparesis, or any chronic illness.
















According to http://heyugly.org/cyberbullying,





This is another great article! You should read it in its entirety.


According to https://www.bullying.co.uk/cyberbullying/how-to-deal-with-cyberbullying/,



"It's very upsetting to get abusive emails, instant messages and to have nasty websites or social network profiles set up to invite people to post offensive remarks about you. This is called cyber bullying.

dealing with cyberbullying
There are ways that people who send emails can be tracked by internet service providers and the police. All emails carry information which shows the path the email has taken to get to your computer.

Internet service providers (ISP) have contact email addresses for complaints about email and Cyber Bullying coming from their network and this will normally be abuse@hotmail.com, abuse@btinternet.com or whichever system the sender is using. Don't reply to the email or delete it, get your parents to forward the whole thing to the sender's ISP.

We closed down a series of message boards in the Hertfordshire/north London area where pupils were being identified by name, school and year and others were invited to post abuse about them. These boards have been reported to Hertfordshire Police following complaints to us by parents and pupils.

Among problems we identified were:

A death threat
Numerous bogus messages posted in the names of people being targeted
A boy who lost all his friends as a result of postings made in his name
Numerous threats of violence
A girl who tried to kill herself due to abuse
a teenager on anti-depressants and afraid to go out due to threats
Sending abuse by email or posting it into a web board can be harassment and if this has happened to you then your parents or carers need to make a complaint to the police.

All message boards run by private individuals are hosted by firms and you can often find an address to complain to in the 'help' section of the board. In our experience firms usually act swiftly to shut down the board because allowing abuse to be posted is against their terms and conditions."



Source: On Image





Source: https://edtech4beginners.com/2017/03/21/how-do-you-deal-with-cyber-bullying-in-schools/




Source: http://sybasigns.com.au/digital-resources/web-2-0/digital-resource-freedom-from-cyber-bullying

Monday, August 20, 2018

Cyclic Vomiting Syndrome (CVS) and Gastroparesis Part 1

As someone who suffers both from Cyclic Vomiting Syndrome (CVS) and Gastroparesis (GP), it is sometimes hard to tell the difference between the two. It is so hard to get control of my vomiting once it starts because of Cyclic Vomiting Syndrome. This will be a two part article because there is a lot of information about CVS. The second part will be about living with CVS and Gastroparesis, and how one effects the other. Let me explain what CVS is, and how it can be dangerous on top of Gastroparesis.







According to the Mayo Clinic, Cyclic Vomiting Syndrome is defined as follows,


"Cyclic vomiting syndrome is characterized by episodes of severe vomiting that have no apparent cause. Episodes can last for hours or days and alternate with symptom-free periods. Episodes are similar, meaning that they tend to start at the same time of day, last the same length of time, and occur with the same symptoms and intensity.

Cyclic vomiting syndrome occurs in all age groups, though it often begins in children around 3 to 7 years old. Although more common in children, the number of cases diagnosed in adults is increasing.

The syndrome is difficult to diagnose because vomiting is a symptom of many disorders. Treatment often involves lifestyle changes to help prevent the events that can trigger vomiting episodes. Medications, including anti-nausea and migraine therapies, may help lessen symptoms.



Symptoms

The symptoms of cyclic vomiting syndrome often begin in the morning. Signs and symptoms include:

Severe vomiting that occurs several times an hour, continues for hours to days, but lasts less than one week
Three or more separate episodes of vomiting with no apparent cause in the past six months, or five or more episodes occurring at any time
Severe nausea
Intense sweating



Other signs and symptoms during a vomiting episode may include:

Abdominal pain
Diarrhea
Fever
Dizziness
Sensitivity to light
Headache
Retching or gagging
The time between vomiting episodes is usually symptom-free.


Causes
The underlying cause of cyclic vomiting syndrome is unknown. Some possible causes include genes, digestive difficulties, nervous system problems and hormone imbalances.


Specific bouts of vomiting may be triggered by:

Colds, allergies or sinus problems
Emotional stress or excitement, especially in children
Anxiety or panic attacks, especially in adults
Foods, such as caffeine, chocolate or cheese
Overeating, eating right before going to bed or fasting
Hot weather
Physical exhaustion
Exercising too much
Menstruation
Motion sickness
Identifying the triggers for vomiting episodes may help with managing cyclic vomiting syndrome.


Risk factors
The relationship between migraines and cyclic vomiting syndrome isn't clear. But many children with cyclic vomiting syndrome have a family history of migraines or have migraines themselves when they get older. In adults, the association between cyclic vomiting syndrome and migraine may be lower.

Chronic use of marijuana (Cannabis sativa) also has been associated with cyclic vomiting syndrome because some people use marijuana to treat their symptoms.

However, cannabis can lead to a condition called cannabis hyperemesis syndrome, which typically leads to persistent vomiting without normal intervening periods. People with this syndrome often demonstrate frequent showering or bathing behavior.

Cannabis hyperemesis (hyperemesis means a lot of vomiting) syndrome can be confused with cyclic vomiting syndrome. To rule out cannabis hyperemesis syndrome, you need to stop using marijuana for at least one to two weeks to see if vomiting lessens. If it doesn't, your doctor will continue testing for cyclic vomiting syndrome.




Complications

Cyclic vomiting syndrome can cause these complications:

Dehydration. Excessive vomiting causes the body to lose water quickly. Severe cases of dehydration may need to be treated in the hospital.
Injury to the feeding tube. The stomach acid that comes up with the vomit can damage the tube that connects the mouth and stomach (esophagus). Sometimes the esophagus becomes so irritated it bleeds.
Tooth decay. The acid in vomit can corrode tooth enamel.




Prevention

Many people know what triggers their cyclic vomiting episodes. Avoiding those triggers can reduce the frequency of episodes. While you may feel well between episodes, it's very important to take medications as prescribed by your doctor.

If episodes occur more than once a month or require hospitalization, your doctor may recommend preventive medicine, such as amitriptyline, propranolol (Inderal), cyproheptadine and topiramate.



Lifestyle changes also may help, including:

Getting adequate sleep
Downplaying the importance of upcoming events because excitement can be a trigger
Avoiding trigger foods, such as caffeine, cheese and chocolate
Eating small meals and small carbohydrate-containing snacks daily at regular times




When to see a doctor

Call your doctor if you see blood in your or your child's vomit.

Continued vomiting may cause severe dehydration that can be life-threatening. Call your doctor if you or your child is showing symptoms of dehydration, such as:

Excess thirst
Less urination
Dry skin
Exhaustion and listlessness




Diagnosis

Cyclic vomiting syndrome can be difficult to diagnose. There's no specific test to confirm the diagnosis, and vomiting is a sign of many conditions that must be ruled out first.

The doctor will start by asking about your child's or your medical history and conducting a physical exam. The doctor will also want to know about the pattern of symptoms that you or your child experiences.


After that, the doctor may recommend:

Imaging studies — such as endoscopy, ultrasound or a CT scan — to check for blockages in the digestive system or signs of other digestive conditions
Motility tests to monitor the movement of food through your digestive system and to check for digestive disorders
Laboratory tests to check for thyroid problems and other metabolic conditions
Treatment
There's no cure for cyclic vomiting syndrome, though many children no longer have vomiting episodes by the time they reach adulthood. For those experiencing cyclic vomiting episode, treatment focuses on controlling the signs and symptoms. You or your child may be prescribed:

Anti-nausea drugs
Pain-relieving medications
Medications that suppress stomach acid
Antidepressants
Anti-seizure medications
The same types of medications used for migraines can sometimes help stop or even prevent episodes of cyclic vomiting. These medications may be recommended for people whose episodes are frequent and long lasting, or for people with a family history of migraine.

IV fluids may need to be given to prevent dehydration. Treatment is individualized based on the severity and duration of symptoms as well as the presence of complications.






Lifestyle and home remedies

Lifestyle changes can help control the signs and symptoms of cyclic vomiting syndrome. People with cyclic vomiting syndrome generally need to get adequate sleep. Once vomiting begins, it may help to stay in bed and sleep in a dark, quiet room.

When the vomiting phase has stopped, it's very important to drink fluids, such as an oral electrolyte solution (Pedialyte) or a sports drink (Gatorade, Powerade, others) diluted with 1 ounce of water for every ounce of sports drink. Some people may feel well enough to begin eating a normal diet soon after they stop vomiting. But if you don't or your child doesn't feel like eating right away, you might start with clear liquids and then gradually add solid food.

If vomiting episodes are triggered by stress or excitement, try during a symptom-free interval to find ways to reduce stress and stay calm. Eating small meals and small carbohydrate-containing snacks daily, instead of three large meals, also may help.




Alternative medicine

Alternative and complementary treatments may help prevent vomiting episodes, although none of these treatments has been well-studied.


These treatments include:

Coenzyme Q10 (ubiquinone), a natural substance made in the body that is available as a supplement. Coenzyme Q10 assists with the basic functions of cells.
L-carnitine, a natural substance that is made in the body and is available as a supplement. L-carnitine helps your body turn fat into energy.
L-carnitine and coenzyme Q10 may work by helping your body overcome difficulty in converting food into energy (mitochondrial dysfunction). Some researchers believe mitochondrial dysfunction may be a factor causing both cyclic vomiting syndrome and migraine.

Be sure to see a doctor and have the diagnosis of cyclic vomiting syndrome confirmed before starting any supplements. Always check with your doctor before taking any supplements to be sure you or your child is taking a safe dose and that the supplement won't adversely interact with any medications you're taking. Some people may experience side effects from L-carnitine and coenzyme Q10 that are similar to the symptoms of cyclic vomiting syndrome, including nausea, diarrhea and loss of appetite.





Coping and support

Because you never know when the next episode might occur, cyclic vomiting syndrome can be difficult for the whole family. Children may be especially concerned, and may worry constantly that they'll be with other children when an episode happens.

You or your child may benefit from connecting with others who understand what it's like to live with the uncertainty of cyclic vomiting syndrome. Ask your doctor about support groups in your area.






Preparing for your appointment

You're likely to start by seeing your primary care doctor or your child's pediatrician. But you may be referred immediately to a digestive diseases specialist (gastroenterologist). If you or your child is in the middle of a severe vomiting episode, the doctor may recommend immediate medical care.

Here's some information to help you get ready for your appointment and know what to expect from the doctor.



What you can do

Keep a record of any symptoms, including how often vomiting occurs and any typical triggers you may have noticed, such as food or activity.
Write down key medical information, including other diagnosed conditions.
Write down key personal information, including dietary habits and any major stresses or recent changes — both positive and negative — in your child's life or yours.
Bring a list of all medications, vitamins or supplements that you or your child takes.
Write down questions to ask the doctor.
Questions to ask the doctor




Some basic questions to ask the doctor include:

What's the most likely cause of these symptoms?
Are any tests needed?
Do you think this condition is temporary or long lasting?
What treatments do you recommend?
Is there a medication that can help?
Are there any dietary restrictions that can help?
Don't hesitate to ask other questions that occur to you during your appointment.






What to expect from the doctor

Be ready to answer questions your doctor may ask:

When did you or your child begin experiencing symptoms?
How often does an episode of severe vomiting occur, and how many times do you or does your child typically vomit?
How long do the episodes typically last?
Do you or does your child experience abdominal pain?
Have you noticed any warning signs that an episode is coming, such as loss of appetite or feeling unusually tired, or any common triggers, such as intense emotions, illness or menstruation?
Have you or has your child been diagnosed with any other medical problems, including mental health conditions?
What treatments, including over-the-counter medications and home remedies, are you or your child taking for other conditions?
Does anything seem to improve the symptoms or shorten the duration of an episode?
Do you or does your child have any history of severe headaches?
Does anyone in your family have a history of cyclic vomiting syndrome or of migraines?
Do you or your child use cannabis in any form? If so, how often?
What you can do in the meantime
The doctor will likely want to see you or your child immediately if an episode of severe vomiting is underway. But if the vomiting has passed, get plenty of rest, drink extra fluids and follow an easy-to-digest diet. It's also a good idea to avoid caffeinated beverages or foods containing caffeine, as these may trigger symptoms."






The main symptoms of cyclic vomiting syndrome are sudden, repeated attacks—called episodes—of severe nausea and vomiting. Source: https://www.niddk.nih.gov/health-information/digestive-diseases/cyclic-vomiting-syndrome/symptoms-causes






According to the National Institute of Diabetes and Digestive and Kidney Diseases,

"Definitions & Facts for Cyclic Vomiting Syndrome

What is cyclic vomiting syndrome?

Cyclic vomiting syndrome, or CVS, is a functional gastrointestinal (GI) disorder that causes sudden, repeated attacks—called episodes—of severe nausea and vomiting. Episodes can last from a few hours to several days. The episodes are separated by periods without nausea or vomiting. The time between episodes can be a few weeks to several months. Episodes can happen regularly or at random. Episodes can be so severe that you may have to stay in bed for days, unable to go to school or work. You may need treatment at an emergency room or a hospital during episodes. Cyclic vomiting syndrome can affect you for years or decades.

CVS is not chronic vomiting that lasts weeks without stopping. CVS is not a condition that has a definite cause, such as chemotherapy.



How common is cyclic vomiting syndrome?

Experts don’t know how common cyclic vomiting syndrome is in adults. However, experts believe that cyclic vomiting syndrome may be just as common in adults as in children. Doctors diagnose about 3 out of 100,000 children with cyclic vomiting syndrome every year.



You may be more likely to get cyclic vomiting syndrome if you have:

migraines or a family history of migraines
a history of long-term marijuana use
a tendency to get motion sickness
Among adults with cyclic vomiting syndrome, about 6 out of 10 are Caucasian.


People with cyclic vomiting syndrome may have other health problems, including:

migraines
anxiety and depression
gastroparesis
autonomic nervous system disorders
high blood pressure
gastroesophageal reflux disease
irritable bowel syndrome




What are the complications of cyclic vomiting syndrome?

The severe vomiting and retching that happen during cyclic vomiting episodes may cause the following complications:

dehydration
esophagitis
Mallory-Weiss tears
tooth decay or damage to tooth enamel
References
[1] Drumm BR, Bourke B, Drummond J, et al. Cyclical vomiting syndrome in children: a prospective study. Neurogastroenterology and Motility. 2012;24(10):922–927.

[2] Bhandari S, Venkatesan T. Clinical characteristics, comorbidities and hospital outcomes in hospitalizations with cyclic vomiting syndrome: a nationwide analysis. Digestive Diseases and Sciences. 2017;62(8):2035–2044.

December 2017




Symptoms & Causes of Cyclic Vomiting Syndrome


What are the main symptoms of cyclic vomiting syndrome?

The main symptoms of cyclic vomiting syndrome are sudden, repeated attacks—called episodes—of severe nausea and vomiting. You may vomit several times an hour. Episodes can last from a few hours to several days. Episodes may make you feel very tired and drowsy.

Each episode of cyclic vomiting syndrome tends to start at the same time of day, last the same length of time, and happen with the same symptoms and intensity as previous episodes. Episodes may begin at any time but often start during the early morning hours.

The main symptoms of cyclic vomiting syndrome are sudden, repeated attacks—called episodes—of severe nausea and vomiting.





What are some other symptoms of cyclic vomiting syndrome?


Other symptoms of cyclic vomiting syndrome may include one or more of the following:

retching—trying to vomit but having nothing come out of your mouth, also called dry vomiting
pain in the abdomen
abnormal drowsiness
pale skin
headaches
lack of appetite
not wanting to talk
drooling or spitting
extreme thirst
sensitivity to light or sound
dizziness
diarrhea
fever



What are the phases of cyclic vomiting syndrome?

Cyclic vomiting syndrome has four phases:

prodrome phase
vomiting phase
recovery phase
well phase






Source: https://www.researchgate.net/figure/Schematic-representation-of-the-four-phases-of-Cyclic-Vomiting-Syndrome-and-their_fig2_7402882





How do the symptoms vary in the phases of cyclic vomiting syndrome?

The symptoms will vary as you go through the four phases of cyclic vomiting syndrome:

Prodrome phase. During the prodrome phase, you feel an episode coming on. Often marked by intense sweating and nausea—with or without pain in your abdomen—this phase can last from a few minutes to several hours. Your skin may look unusually pale.
Vomiting phase. The main symptoms of this phase are severe nausea, vomiting, and retching. At the peak of this phase, you may vomit several times an hour. You may be quiet and able to respond to people around you and unable to move and unable to respond to people around you. You may have twisting and moaning with intense pain in your abdomen. The nausea and vomiting can last from a few hours to several days.

Recovery phase. Recovery begins when you stop vomiting and retching and you feel less nauseated. You may feel better gradually or quickly. The recovery phase ends when your nausea stops and your healthy skin color, appetite, and energy return.

Well phase. The well phase happens between episodes. You have no symptoms during this phase.



When should I seek medical help?


You should seek medical help if:

the medicines your doctor recommended or prescribed for the prodrome phase don’t relieve your symptoms
your episode is severe and lasts more than several hours
you are not able to take in foods or liquids for several hours
You should seek medical help right away if you have any signs or symptoms of dehydration during the vomiting phase.


These signs and symptoms may include:

extreme thirst and dry mouth
urinating less than usual
dark-colored urine
dry mouth
decreased skin turgor, meaning that when your skin is pinched and released, the skin does not flatten back to normal right away
sunken eyes or cheeks
light-headedness or fainting


If you are a parent or caregiver of an infant or child, you should seek medical care for them right away if they have any signs and symptoms of dehydration during the vomiting phase.


These signs and symptoms may include:

thirst
urinating less than usual, or no wet diapers for 3 hours or more
lack of energy
dry mouth
no tears when crying
decreased skin turgor
sunken eyes or cheeks
unusually cranky or drowsy behavior




Source: On Image.







What causes cyclic vomiting syndrome?

Experts aren’t sure what causes cyclic vomiting syndrome.


However, some experts believe the following conditions may play a role:

problems with nerve signals between the brain and digestive tract
problems with the way the brain and endocrine system react to stress
mutations in certain genes that are associated with an increased chance of getting CVS



What may trigger an episode of cyclic vomiting?

Triggers for an episode of cyclic vomiting may include:

emotional stress
anxiety or panic attacks , especially in adults
infections, such as colds, flu, or chronic sinusitis
intense excitement before events such as birthdays, holidays, vacations, and school outings, especially in children
lack of sleep
physical exhaustion
allergies
temperature extremes of hot or cold
drinking alcohol
menstrual periods
motion sickness
periods without eating (fasting)
Eating certain foods, such as chocolate, cheese, and foods with monosodium glutamate (MSG) may play a role in triggering episodes.




Diagnosis of Cyclic Vomiting Syndrome


How do doctors diagnose cyclic vomiting syndrome?

Doctors diagnose cyclic vomiting syndrome based on family and medical history, a physical exam, pattern of symptoms, and medical tests. Your doctor may perform medical tests to rule out other diseases and conditions that may cause nausea and vomiting.



Family and medical history

Your doctor will ask about your family and medical history. He or she may ask for details about your history of health problems such as migraines , irritable bowel syndrome, and gastroparesis. Your doctor may also ask about your history of mental health problems, use of substances such as marijuana, and cigarette smoking.



Physical exam


During a physical exam, your doctor will:

examine your body
check your abdomen for unusual sounds, tenderness, or pain
check your nerves, muscle strength, reflexes, and balance
Pattern or cycle of symptoms in children




A doctor will often suspect cyclic vomiting syndrome in a child when all of the following are present[3]:

at least five episodes over any time period, or a minimum of three episodes over a 6-month period
episodes lasting 1 hour to 10 days and happening at least 1 week apart
episodes similar to previous ones, tending to start at the same time of day, lasting the same length of time, and happening with the same symptoms and intensity
vomiting during episodes happening at least four times an hour for at least 1 hour
episodes are separated by weeks to months, usually with no symptoms between episodes
after appropriate medical evaluation, symptoms cannot be attributed to another medical condition
Pattern or cycle of symptoms in adults





A doctor will often suspect cyclic vomiting syndrome in adults when all of the following are present[4]:

three or more separate episodes in the past year and two episodes in the past 6 months, happening at least 1 week apart
episodes that are usually similar to previous ones, meaning that episodes tend to start at the same time of day and last the same length of time—less than 1 week
no nausea or vomiting between episodes, but other, milder symptoms can be present between episodes
no metabolic , gastrointestinal , central nervous system , structural, or biochemical disorders
A personal or family history of migraines supports the doctor’s diagnosis of cyclic vomiting syndrome.

Your doctor may diagnose cyclic vomiting syndrome even if your pattern of symptoms or your child’s pattern of symptoms do not fit the patterns described here. Talk to your doctor if your symptoms or your child’s symptoms are like the symptoms of cyclic vomiting syndrome.





Source on Image.






What medical tests do doctors use to diagnose cyclic vomiting syndrome?

Doctors use lab tests, upper GI endoscopy, and imaging tests to rule out other diseases and conditions that cause nausea and vomiting. Once other diseases and conditions have been ruled out, a doctor will diagnose cyclic vomiting syndrome based on the pattern or cycle of symptoms.





Lab tests

Your doctor may use the following lab tests:

Blood tests can show signs of anemia, dehydration, inflammation, infection, and liver problems.
Urine tests can show signs of dehydration, infection, and kidney problems.
Blood and urine tests can also show signs of mitochondrial diseases .


Upper GI endoscopy

Your doctor may perform an upper GI endoscopy to look for problems in your upper digestive tract that may be causing nausea and vomiting.


Imaging tests

A doctor may perform one of more of the following imaging tests:

Ultrasound of the abdomen.
Gastric emptying test, also called gastric emptying scintigraphy. This test involves eating a bland meal, such as eggs or an egg substitute, that contains a small amount of radioactive material. An external camera scans the abdomen to show where the radioactive material is located. A radiologist can then measure how quickly the stomach empties after the meal. Health care professionals perform gastric emptying tests only between episodes.
Upper GI series.
MRI scan or CT scan of the brain.
References
[3] Li BU, Lefevre F, Chelimsky GG, et al. North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition consensus statement on the diagnosis and management of cyclic vomiting syndrome. Journal of Pediatric Gastroenterology and Nutrition. 2008;47(3):379–393.

[4] Stanghellini V, Chan FK, Hasler WL, et al. Gastroduodenal disorders. Gastroenterology. 2016;150(6):1380–1392.



Treatment of Cyclic Vomiting Syndrome


How do doctors treat cyclic vomiting syndrome?


How doctors treat cyclic vomiting syndrome depends on the phase. Your doctor may:

prescribe medicines
treat health problems that may trigger the disorder
recommend
staying away from triggers
ways to manage triggers
getting plenty of sleep and rest
Prodrome phase
Taking medicines early in this phase can sometimes help stop an episode from happening.



Your doctor may recommend over-the-counter medicines or prescribe medicines such as:

ondansetron (Zofran) or promethazine (Phenergan) for nausea
sumatriptan (Imitrex) for migraines
lorazepam (Ativan) for anxiety
ibuprofen for pain




Your doctor may recommend over-the-counter medicines to reduce the amount of acid your stomach makes, such as:

famotidine (Pepcid)
ranitidine (Zantac)
omeprazole (Prilosec)
esomeprazole (Nexium)






Source (and to read this study): https://www.researchgate.net/publication/263779154_Resistant_Cyclic_Vomiting_Syndrome_Successfully_Responding_to_Chlorpromazine






Vomiting phase
During this phase, you should stay in bed and sleep in a dark, quiet room. You may have to go to a hospital if your nausea and vomiting are severe or if you become severely dehydrated.




Your doctor may recommend or prescribe medication for the following for children and adults:

nausea
migraines
anxiety
pain
medicines that reduce the amount of acid your stomach makes
During the vomiting phase, you should stay in bed and sleep in a dark, quiet room.



If you go to a hospital, your doctor may treat you with:

intravenous (IV) fluids for dehydration
medicines for symptoms
IV nutrition if an episode continues for several days


Recovery phase
During the recovery phase, you may need IV fluids for a while.



Your doctor may recommend that you drink plenty of water and liquids that contain glucose and electrolytes, such as:

broths
caffeine-free soft drinks
fruit juices
sports drinks
oral rehydration solutions, such as Pedialyte
If you’ve lost your appetite, start drinking clear liquids and then move slowly to other liquids and solid foods. Your doctor may prescribe medicines to help prevent future episodes.


Well phase
During the well phase, your doctor may prescribe medicines to help prevent episodes and how often and how severe they are, such as:

amitriptyline (Elavil)
cyproheptadine (Periactin)
propranolol (Inderal)
topiramate (Topamax)
zonisamide (Zonegran)
Your doctor may also recommend coenzyme Q10 , levocarnitine (L-carnitine), or riboflavin as dietary supplements to help prevent episodes.



How can I prevent cyclic vomiting syndrome?

Knowing and managing your triggers can help prevent cyclic vomiting syndrome, especially during the well phase.

You should also:

get enough sleep and rest
treat infections and allergies
learn how to reduce or manage stress and anxiety
avoid foods and food additives that trigger episodes



How do doctors treat the complications of cyclic vomiting syndrome?

Doctors treat the complications of cyclic vomiting syndrome as follows:

dehydration — plenty of liquids with glucose and electrolytes; or IV fluids and hospitalization for severe dehydration
esophagitis — medicines to reduce the amount of acid your stomach makes
Mallory-Weiss tears — medicines or medical procedures to stop bleeding if the tears don’t heal on their own, which they generally do
tooth decay - or damage to tooth enamel—dental fillings , fluoride toothpaste, or mouth rinses





Source: https://www.google.com/url?sa=i&source=images&cd=&cad=rja&uact=8&ved=2ahUKEwi137Kl6vvcAhVI3FMKHYMFBewQjRx6BAgBEAU&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DxnC1M1mIPIE&psig=AOvVaw2TfxZE740rfSQwa0jNtRSk&ust=1534860908500786





Eating, Diet, & Nutrition for Cyclic Vomiting Syndrome

How can my diet help prevent or relieve cyclic vomiting syndrome?

Your diet will not help prevent or relieve episodes but will help you recover and keep you healthy.

Your doctor may recommend coenzyme Q10 , levocarnitine, (L-carnitine), or riboflavin as dietary supplements to help prevent episodes.



What should I eat and drink if I have cyclic vomiting syndrome?

When your nausea and vomiting stop, you can generally go back to your regular diet right away. In some cases, you may want to start with clear liquids and go slowly back to your regular diet. You should eat well-balanced and nutritious meals between your episodes. Your doctors will recommend that you not skip meals in between episodes.



If you are dehydrated, drink plenty of liquids that contain glucose and electrolytes, such as:

broths
caffeine-free soft drinks
fruit juices
sports drinks
oral rehydration solutions, such as Pedialyte
Family eating nutritious foods.
You should eat well-balanced and nutritious meals between your cyclic vomiting episodes.
What should I avoid eating if I have cyclic vomiting syndrome?
In between episodes, you should avoid eating foods that may have triggered past episodes. Eating certain foods such as chocolate, cheese, and foods with monosodium glutamate (MSG), may trigger an episode in some people. Adults should avoid drinking alcohol.


Clinical Trials for Cyclic Vomiting Syndrome

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other components of the National Institutes of Health (NIH) conduct and support research into many diseases and conditions.



What are clinical trials and are they right for you?

Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease. Researchers also use clinical trials to look at other aspects of care, such as improving the quality of life for people with chronic illnesses. Find out if clinical trials are right for you.


What clinical trials are open?

Clinical trials that are currently open and are recruiting can be viewed at www.ClinicalTrials.gov."



My friend Jenny has CVS and Gastroparesis. She made this image and shared it with me, so I thought I would share it with you to share her story (she is updating her story and when I receive it, I will update it here, too:





During my research into CVS, I read that it can cause abdominal migraines. There are many different types of migraines but if you would like more information on abdominal migraines, please read my blog article here: http://www.emilysstomach.com/2018/06/abdominal-migraines.html






I found this online and the source should be located in the document, but it goes into detail about Cyclic Vomiting Syndrome (CVS) with diagrams and a bit more information than Mayo provides: