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sandyson

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Reply with quote  #1 
Hi everyone.  My husband was diagnosed with CVS around 7 years ago.  We have been together for 5, found a specialist, he takes ativan and amitriptyline, and we have been able to control his symptoms very well for the past 4 years.  However, around December 10th, he started with a episode, and we have STILL not come out of it.  We have been hospitalized, given dilaudid and ativan, seemed okay for 24 hours, but then came right back to the hospital.  This happened 4 different times. We have been in the hospital for the past 2 weeks, and the doctor has communicated with his specialist.  The dilaudid and ativan will settle him, but then 24 hours later, he will start with severe heartburn and severe gas pains, and then we start all over.  They then took the narcotics to see if that was slowing his stomach so much, but he vomited 3 straight days.   Today, they are trying the pain meds again, a super super bland diet afterwards, and they also have done a Belly CT to see if anything else is going wrong.  He has dropped over 40 lbs.  I am terrified.  I can't fix it for him, he is in such agony.  Any advice out there?????  He has taken a regiment of *mg ativan in the morning and at night, one amitriptyline ** mg at night, coq10enyzme in the morning, singular for allergy at night, and dexilant for the acid reflux.  He still gets all of this in the hospital, BUT the dexilant isn't available so it's protonix IV.  I just want to help him!
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ginny

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Reply with quote  #2 
Quite some time ago I was in a similar position with my daughter.  She had all meds by IV, nothing swelled, no food.  Due to extreme weight loss the doctor ordered TPN feeding.  One thing I recall is a diagnosis of Superior Mesentary Artery Syndrome (hope I recall the exact name).  The SMAwas blamed on the extreme loss of weight.  

She had an NG tube for to help suck out the stuff she would be vomiting.  She did vomit around the NG tube but I was told the tube would help with relieving some of the distress.

Because there were other things going on, she received no narcotics or other pain medications. Her IV cocktail, I think, consisted of an antiemetic, an antacid, probably Ativan.  She was not taking preventative medications.  We did not know about CVS so her diagnosis did not include CVS.  

After this long episode, she had more frequent CVS cycles. Her local doctor included thorazine in her IV mix of meds.  I always thought the thorazine and Ativan were most helpful, maybe because she could sleep soundly.  As we now know, sleep resets the brain and helps end the cycle.


She did have mild pancreatitis, probably as a result of the extreme vomiting.  We kept her in a private room, as quiet as possible, sleeping as much as possible. 

Would your doctor consult with Dr. V in WI?  She might have better ideas for such a long scary cycle.

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sandyson

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Reply with quote  #3 
I can try and see.  He has consulted the doctor he sees in Augusta GA....we are located in Spartanburg, SC....they put the narcotics back on yesterday to allow rest.  He has slept for the most part, except for a time when the IV messed up yesterday....and the hope is when he awakes and is starving, as has happened in the past, they they will slow down his diet.  What happened last week as we felt like we had gotten past this is when he woke up...he was starving, and he ate sandwiches, full meals, etc from the hospital, which his stomach was just not ready for.  We are trying to  stay on liquids this time and go very slow (my husband is a tall, athletic guy...6-5...so he has an appetite when he is well!

If this does not work, I will see if we can get him referred and ask about the things in your post!!!

And thank you for answering.  This  is my first time posting, this disease is so very hard.  Its hurts me for him, and I can't imagine what he is feeling.  He always beats himself up because we miss sometimes the big moments in life....and I wish there was a way to help him know that that is not an issue!  I know all of us on her deal with that!!!!
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ginny

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Reply with quote  #4 
Once you are out of this cycle you might be able to fine tune the prevention program.  He should be able to eat ok if the cycle is over and generally it is though that fasting is counter active for CVS patients.  TPN might offer him the nutrition and calories he needs.  

Let us know how it goes.  I cannot imagine struggling with CVS but I do know how it is to be a caretaker.



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sandyson

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Reply with quote  #5 
 We did finally get home, and we are making slow progress.  Being back on the Dexilant for heartburn has seemed to help....in the hospital it was protonix, which used to work, but he seemed to basically become immune to that.  Does anyone else have severe heartburn episodes that lead to nausea and then to the vomiting started?  Slow progress is what we are hoping!!  I'm ready to have my husband back, and would love any advice on how to keep managing this as best as we can!
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ginny

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Reply with quote  #6 
Has your husband been through the testing to rule out other conditions?  The meds he takes on a regular basis are typical CVS meds, but it is important to keep testing.

The meds he takes, although used frequently for CVS and probably many other conditions, can influence delayed gastic emptying.  The slowed gut results in pain, gas, heartburn and these symptoms can bring on vomiting and more meds that further slow gastric emptying.  

My understanding is that the heartburn and acid reflux can be a result of the vomiting.  I don't know much about reflux as a trigger for a CVS cycle. There are many triggers, pain, allergies, good and bad stress, so reflux could be a trigger.  If he is involved in a cycle of gas, pain, reflux, medication, and vomiting, maybe someone can check him for gastric emptying?  

Typically a CVS patient will have rapid gastric emptying until the time when a cycle is approaching.  Things then slow down.  This might not hold true if he is using medication that slows things down.

Have you read any of the research around "The Enteric Nervous System: A Second Brain", Michael Gershon, MD, Phd.? Some of this could help with understanding how the neuro system causes digestive symptoms.

I hope the new medication works well for him.






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wynnak

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Reply with quote  #7 
Progress was very slow for us too.. But we always said.. progress is progress. 

I will give you a tip that may be helpful for admissions.. not ER, but if he is admitted.. Discuss the effectiveness of both with the treating Doctor. We have meds that we bring from home versus getting less effective ones inpatient. They do take them into custody and test them to make sure they are what you say they are.. but for us it is worth it. Sometimes a lot less expensive too. Since we are providing our own meds and not being charged the exorbitant hospital price. We have forgotten them at the hospital a couple times too.. and it's still cheaper. 

My son was on several acid reflux meds. For him he only takes them when he is episodic or feels the burning before the episode starts. He travels with Tums on hand.. He thinks they work better than the prescription ones. But he was on various ones while his esophagus was healing when he had a Mallory-Weiss tear. Have they suggested diet changes for the burning reflux as well? Less acidic foods, no fried.. stuff like that? 

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sandyson

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Reply with quote  #8 
He has been diagnosed with slow gastric emptying, and he tells me he feels that's where everything starts, and then the heartburn followed by the nausea and the vomiting.  This time, it seemed to be that way, but when we awoke in the hospital, the heartburn would come back and then lead to nausea.  We have started slow at home....broths and soups before we try to go back to normal.  I will check out the research on the nervous system.

We have checked in meds before, and I will do it again.  We know some foods that tend to trigger this, and we try to stay away from those.  This time just really came out of nowhere.....it could be foods he was eating (I have a new coaching job this year, and he was taking care of food himself), we actually take an allergy pill and that has seemed to stop his reaction in September.  This one was just so very long, and we would be okay for 24 hours, and then the heartburn would get so bad...it could be from the slow gastric emptying causing that....it's still just been so long this time. 

Thank you all for your tips!  It's nice to have a community out there, because at times, I feel lost while he is suffering.  The doctors do too!
  
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ginny

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Reply with quote  #9 
You bring me back to the delayed or slowed gastric emptying.  Can the doctor work with that to get things moving through?  I know this is really difficult with the medications.

Hopefully the posts by BathBoy are still in the MB archives.  If you find helpful posts from him, you can bump the post back up with any kind of reply to the message-- just the word "bump" will get the message back up and current.

If he can get the slowed emptying to progress, he might find relief.



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chris1963

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Reply with quote  #10 
I am new to this group and the very last thing I want to do is offend anyone but if there is any chance at all that I can relieve anyone's suffering it is worth it! Everything about cvs, the symptoms, the treatments, the hot shower/bath relief is IDENTICAL to chs except that chs, Cannabinoid Hyperemesis Syndrome is caused by marijuana use. I am currently in a chs group, but am one of few who continue to get sick even though I quit using years ago. So maybe I have cvs. I am in the process of seeing if abstaining from foods containing cannabinoids (i.e. chocolate and black pepper) helps. In our chs group on Facebook we get about 10 new members every week and hear the same disbelieving comments about how marijuana HELPS nausea and couldn't possibly be the cause. If any any cvs sufferers smoke marijuana PLEASE Google "Cannabinoid Hyperemesis Syndrome"
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wynnak

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Reply with quote  #11 
Chris,

The biggest issue is that the symptoms of both conditions are the same. The stopping of the usage of Cannabis usually stops the CHS. It may be that CVS patients may be more susceptible to CHS because of the endo-cannabinoids already in the system. I still go back to triggers being the cannabinoid containing foods. Some people have msg, soy, dairy..
CHS is tied to the amount off MJ used. There are several CVS patients that successfully use very small amounts to navigate the nausea. Or even increasing appetite.
The CHS and CVS connection is still very under explored.
I don’t think discussing MJ is something that will offend most here. You aren’t going to get attacked like some of the Facebook groups. We did monitor stuff like that. We have several people on here that have been very supportive of MJ usage because of the easing of symptoms. One in particular that I think we talked about. Smokeeater. So look for posts by him.

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ginny

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Reply with quote  #12 
No one is offended with this discussion.  We did have a private forum required at one time to discuss but things have simplified since then.

Some do have CVS symptoms due to CHS.  Some doctors are under the impression that the two conditions are the same thing which takes credibility away from the CVS patients.




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ginny CVSA Moderator
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Smokeater42

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Reply with quote  #13 
I know you don't know me, But I am Smoke and I have been there, when I can't come out of an attack, after 3 days I go to the ER they have my ER Orders and I get my IV Emergency meds, then if no help after 3 more day back to the ER to try again and if that didn't work, I call my CVS Specialist in Boston and she called BWH Er and by the time I get there my Emerigency IV meds are waiting and after they get them all in I am taken up to the ICU and I am put into a medicated sleep for 3 to 5 days, That's breaks the attack
Hope you find some help, I know how bad it can get
Heave hoooooooo
Smoke out

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When you have CVS life is one puke after another
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