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mgm748

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Reply with quote  #1 
Hi all! 
I am really happy to have found this group and all of this information. To start off, I guess I should say I haven't been officially diagnosed yet. I've been dealing with symptoms that sound a lot like CVS for a little over four years now. I'm sorry my story is long, I appreciate any insight. 

I had my first episode in January of 2015. It was bad enough that I ended up at the ER for fluids and nausea medication. With this first episode, I did not throw up, but I had this absolutely horrendous and debilitating nausea that had me doubled over and in misery. They ran some tests, but nothing came back so I was sent home with instructions to come back if it became worse. About a month after that, I had another one of these episodes, so I saw a specialist and he said that he didn't really know what was going on, and that he would do an endoscopy, but he probably "wouldn't find anything". He also asked me if I was happy that I had lost weight and told me that this kind if thing happened to all girls my age. I had the endoscopy and it came back with no abnormalities. They started me on amitriptyline and I got a lot better. No episodes for the next year. I can't remember exactly when, but since I had gotten so much better they decided to wean me off the amitriptyline. I believe that was about a year later. 

Fast forward to March 2017. One of my worst episodes. Again, this one I luckily did not throw up, but I was up all night with the worst nausea I have ever experienced (it felt the exact same as the time from 2015). Hard to talk, move, or do much of anything until it passed. Following this episode, I saw a new GI. He prescribed benadryl but didn't want to run any tests at the time. I had a few more episodes between April and June 2017 and was just so frustrated. I saw a third GI and they ran a HIDA scan and gastric emptying scan. The HIDA was normal and the GES came back with "not slow emptying, rather rapid emptying." I tried a FODMAP diet but still continued to get episodes. 

I went to my first year of college and had an amazing year. Only one minor episode and I felt great! I thought that maybe finally I had gotten over it. However, about a month after I returned home for the summer I had another terrible episode. However, this time, the intense, unrelenting nausea was accompanied by the vomiting and some diarrhea (as well as noise and sound sensitivity, and inability to speak or walk). I knew it was one of my episodes though because the nausea was the same. It's pretty easy for me to tell the difference between just normal nausea and my episode nausea. The episode started very early in the morning and lasted the same amount of time (about 12 hours). After a few days of recovery, I was back to normal.

I had a few more episodes in the summer, and more recently, I had two in January and February. My January one was filled with an incredible amount of vomiting and nausea that ended up getting me sent to the ER by urgent care. 

I've done some research on CVS and the way that people describe it seems familiar to how I feel during an episode. I'm scheduled with a NEW doctor in July referred by my primary. I am hoping to bring this up in discussion to see if it would be a possibility. These episodes are absolutely terrifying and there's absolutely nothing I can do once they've started to stop them. 

I have recorded my episodes and many of them seem to start between the third and fifth of the month (which has been near my monthly period but I have never experienced an episode during that time.) However, there have been a few outliers where they've just happened randomly. At one point I was going once about every 3 months on the dot, but now they seem to have spread out a little more. I'm thankful for this, but it makes them less predictable and makes me fearful of when another will strike. 

Does this kind of sound like CVS? I'm sorry if my writing jumps around and is disorganized. Any help is greatly appreciated! 

M

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wynnak

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Reply with quote  #2 
Since we are all volunteers here and have experience with CVS, We can't give you a diagnosis. We are not medical professionals. I have to preface the conversation with that. Many conditions have similar to those of CVS. Its mainly testing to be sure that there is nothing else going on. I have seen people with so many other conditions that have been misdiagnosed with CVS, some for too long. 

That being said, It's cycles of unrelenting nausea and vomiting. Which has attributes of CVS. I would suggest some other testing to rule out anything else though to be sure. 

Have you thought about getting a list of physicians from CVSA and seek care with one of them?  That would be my first suggestion. 

I don't see anything about abdominal pain.. Just Nausea. Is that right? 

The first guy put you on Ami, after your first vomiting episode? That sounds odd to me.. So just trying to get some more details. 

We've all had doctors say some awful things. That one is pretty high on my list of.. Seriously?? Geez. 

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mgm748

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Reply with quote  #3 
Thank you. I know you all you can do is offer advice so I appreciate that. I do live in Wisconsin so it would be a possibility for me to see an expert.
I do not have pain with my episodes. Just the nausea, vomiting, diarrhea. I’m not quite sure why he chose ami to put me on, i do know that he had put me on protonix before then and it hadn’t helped.

It’s comforting but hurts my heart to know that other people have been treated so poorly by doctors too. After I had my endoscopy and started on ami, I went back a few months later for a follow up and when I mentioned I had been feeling better (post endoscopy/starting ami) he looked at me and said “oh, so we should just scope you again? Would that make you feel better?” Man... needless to say we didn’t go back there. Thinking about it makes me cringe.

Thanks for the info:)

M

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ginny

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Reply with quote  #4 
There are "calendar kids"--- episodes predictable for the most part, and I would guess that this can apply to those past childhood.  Of course a relationship to your monthly cycle would be possible as well.  BC might help you if there is a connection.  BC pills helped my daughter to be (just about) cycle free.  I think she had one break through cycle during her time on the pill.

The rapid emptying is said to be typical for CVS with gastric emptying slowing toward the time of a cycle.  Add in hormonal changes and it could make a perfect set up.  The diarrhea might be the result of stool running around dried out stool that remains in place due to slower gastric emptying.  Many meds used to treat CVS also help IBS patients who have rapid stools and the same meds can often slow things down enough for feeling miserable.  Try keeping track of your bowels as well, the pattern that changes and how this affects your nausea and vomiting.

You might want to review some of the online papers on the enteric nervous system, Michael Gershon MS PhD wrote the first paper "The Enteric Nervous System: A Second Brain".

Benadryl can work well for nausea/vomiting.  Many of the meds used as an antiemetic are sleepy type antihistamines .  The meds can address different areas of the brain so one med might work for you but not for another. 

I did think about gall bladder when you were discussing your pain. Is it possible the HIDA scan missed very small stones?  I recall my sister in law and her scan was clear.  She had "gravel" which caused intense pain and later acute pancreatitis.  Many CVS patients do have their gallbladder removed when this was not necessary so I am just tossing out the possibility.

I agree with Wynnak-- your former doctor sounds awful, disrespectful and condescending!



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mgm748

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Reply with quote  #5 
Hi,
I don’t think that it is my gallbladder as I do not have any pain with my episodes. I have kept track of my bowel movements, I tend to be more prone to constipation (have been since I was a kid) but the kind of gross feeling you get when constipated feels different (to me) than when I have an episode of my nausea/vomiting. It sure can make you feel miserable, but I feel like I have been able to tell the difference, if that makes sense : )


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wynnak

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Reply with quote  #6 
Our first couple doctors would say this was my sons' issue.. put him on a daily laxative. Maybe that would be helpful to keep things moving.

I can't say that my son doesn't have pain during an episode. If he is having an abdominal migraine or just vomiting, he always has pain. The forcefulness of the vomiting, the pressure before the vomiting. Since he had a flair in December, every time he struggles with nausea now he is telling us his stomach just feels weird.. (yes we are on tenterhooks) and it doesn't calm down until we can get the nausea under control. So even a difference with just the nausea he can feel. 

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mgm748

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Reply with quote  #7 
I guess I should say that I don’t have stomach pain, as in like cramping or something like that. But I can relate with the forcefulness of the vomiting and the buildup of the nausea—that part is painful. I forgot to mention it, but yes I am on a daily laxative as well to keep things going. Still have a little trouble depending on the day, but it’s been somewhat better and I have been trying to increase water intake and fiber.
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wynnak

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Reply with quote  #8 
Water intake is good. Be careful with the fiber. That needs to be increased slowly. It could have negative affects if increased quickly.

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scooky1

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Reply with quote  #9 
MGM
Welcome to the board!

I have never heard of anyone with CVS who didn't say that it was the worst pain I have ever had in my life! and I have never had an episode that did not include that kind of pain. I am not a Dr. either but I say " if you have CVS" I want the kind you have because every time I go to the ER, which is every time I have an episode the pain is 10 out of a 1 to 10 scale.
I really hope for your sake you don't have CVS but this doesn't sound like what me or any of the others talk about. if it is CVS I would give anything to be you!
Mine started out full blast the first time and every time after that for the last 25 some years. this is why they (the Dr's ) must do so many tests before they will say it's CVS.
                                                                   I really hope it's not! Steve 
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ginny

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Reply with quote  #10 
Steve, I don't think my daughter ever had pain.  She had nausea, which is of course miserable, and extreme vomiting.  The nausea registered with pain when she was really little, enough that I would think appendix.

Dr.Fleisher said that CVS and Abdominal Migraine are interchangeable words for the same condition.  CVS has more vomiting as the prominent symptom and Abdominal Migraine has pain has the prominent symptom.

I think we hear from more of the adult sufferers who have extreme pain.  

As you have read on the MB over the years, those who report to the ER saying they have"abdominal migraine" seem to have a medical staff more understanding and often seem to receive better treatment. 

I wish I knew if this is a true finding.  

When the new adult study is published (very soon I think-- Wynnak?) maybe we will have an answer to the abdominal migraine presentation.

Thank you for bringing this up.  In all these years I dont think I actively expressed my suspicion that stating Abdominal Migraine when going to the ER might bring better and more respectful treatment.

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mgm748

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Reply with quote  #11 
Hi Steve,
Thanks for the info. I am just curious because a lot of things I have been reading have said that pain CAN be present, but isn’t necessary to have a diagnosis of CVS. I am still going through these cycles of severe nausea and vomiting, so that’s why I thought about CVS. I’m not a doctor either, and new to this, so I don’t know. But I didn’t think that stomach pain was a “necessary” requirement.

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SShari

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Reply with quote  #12 
Back in 2011 I had been diagnosed with CVS. I had attacks that had gone on.for many years. It took trips to my Primary Care Physician, a gastrointerologist and to a neurologist before I finally was diagnosed. I had good medical insurance but I could not keep ahead of the attacks. I often suffered at home. My spouse at the time would refuse to take me to the ER when I ran out of medication. Those with the disease know that the vomiting goes on for days and the pain is excruciating and your body is just too weak and tired to fight it. I had suggested to many people I talked to a way to have a special inpatient clinic for CVS patients to go or home health care so they never have to suffer in pain laying on their bathroom floor for days at a time like I did. I am a military veteran. I do not do drugs, drink or smoke. I have been harassed and accused of "faking" the symptoms associated with CVS. Have you ever met anyone who has "faked" throwing up every 45 minutes for 3 days at a time? Me neither. That is why I want to take the necessary steps to protect patients with this disease.
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I am a 51 year old female with Cyclic Vomiting Syndrome. On top of all the physical problems caused by this disease, I am now dealing with secondary issues, such as not being able to work outside of my home and divorce which will leave me with very costly medical benefits.
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wynnak

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Reply with quote  #13 
Have you thought about helping our outreach and advocacy volunteer committee? Seeing what others are doing to help reach out and spread CVS awareness to everyone and medical professionals?
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wynnak

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Reply with quote  #14 
Mgm748, pain does not need to be present for an episode. It is quite common in the adult population. But episodes vary greatly is severity. Have you looked at getting a list of physicians from CVSA?
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scooky1

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Reply with quote  #15 
Oh WOW
Dear People, I should do more research before I open my big mouth and I am very sorry that I said,  this not sounding like CVS ! I have never heard of or had an episode that did not include pain.
That being said, I wish I had that version of CVS. I had no idea there was any such thing as CVS with only vomiting and no pain. Again, I am very sorry if I made light of anybody's situation.
                                                                                                    Steve
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