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Rmceneaney

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Reply with quote  #1 
Hi,
I am new here.
My boyfriend has had Cvs for the past 6 years. We have not been able to find a doctor that can help, other than the usual "oh take this anti sickness tablet" but you all know how well that works.
He has been to specialists in Ireland, has had every test done. One time, an ulcer did show up on one of the tests, but the doctors said the ulcer was actually caused by the cvs!!
We have tried everything recommended, and nothing is working. Basically all they have given him is amitriptyline, migraine nasal spray and omeprazole. Plus all the anti sickness tablets you could ask for.

There is no consistency to his episodes either. No trigger that we can pinpoint, it doesn't happen at regular times(he once went 2 years without an episode, and another time he had an episode every 2-3 weeks for a few months), it doesn't last the same amount of time(sometimes 2 days, sometimes 9days and everything in between).

What different treatments have you all tried? We are desperate now, are willing to try anything.


Any help atall is greatly appreciated.

Thank you
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wynnak

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Reply with quote  #2 
Can I ask if you have consulted the CVS Group in Ireland? You can find information here: http://cvsaonline.org/wp-content/uploads/2018/08/international-directory-082318.pdf. The ireland contact runs a facebook Page as well: https://www.facebook.com/groups/Cyclicvomitingireland/about/ they maybe able to help steer you to a physican that maybe more helpful for you.

We have been through the "here, try this motion sickness pill".. (eye roll) so I know where you're coming from. That is also why I am going to steer you to the groups closer to home for faster care than we offer. I feel that having the group in Ireland give your physician recommendations will be the most helpful.  A good deal of the struggle is not having a knowledgeable physician or caring one.

Would you mind trying those two options and then letting us know how it goes? If you are not getting the help you need, definitely come back here for help. But you can see in the recent topics that we were able to get another person looking for help in Ireland to contact those groups as well as the CVSA UK and she is very happy with being able to talk with those near her..
I would suggest searching for Ireland and commenting on a couple posts. That can prompt people to come back on the message board as well to talk about things. 

But The main thing I see missing from your med attempts are anti-nausea or anti-emetics.. Zofran etc.. have they tried any of those? 

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ginny

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Reply with quote  #3 

Each person with CVS seems different from the next.  If amitriptyline is not working, has the dosage been adjusted? Quite often the dosages need to be adjusted on most if not all the typical medication.

Sleep is said to be the treatment that helps to reset the brain and end the cycle.
is your boyfriend able to be sedated during a cycle?

Tablets can be difficult to keep down during a cycle.  Maybe IV meds would be helpful.

We have a few members from Ireland.  There is also a UK CVSA group and, I think still, an online electric newsletter.  You can find the UK information on this CVSA web page (cvsaonline.org).

Is there a doctor with CVS experience that he can see?  His doctor can also consult with a CVSA Specialist.








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Chris808cvs

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Reply with quote  #4 
I have had it for half my life I'm 35. I have tried everything. Are his episodes painful? Does he have to go to the ER to get treatments? Iv dilauded and clonazepam is only thing that stops full blown attacks for me. I started taking amytriptaline 1-2 times a week because they say it has helped others with CVS but the side effects are awful. Seeing the experts makes it worse sometimes as they will try to adjust your lifestyle to the point it's impossible to live with different diets and strict restrictions on alcohol and marijuana. My regular physician has been my best resource for helping manage the pain and frequency of episodes. Oral dilauted once or twice a week with a clonazepam once or twice a week throughout the week had been the best thing I have found for two years. This with the amytriptaline has stopped the frequency of my attacks. The pain is the worst thing and if he feels the pain and anxiety during the episodes than his internist should be helping him abort these episodes when they occur. Sometimes you just have to catch the episode hours before and take the oral meds and if not hope the ER docs treat. It's a shitty condition.
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ginny

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Reply with quote  #5 

The only way that I know about to tell if you have CHS vs CVS is to stop the cannabis.  This is something people really don't want to do but if you search the archives there are messages from others regarding their cycles stopping after ceasing use of cannabis.

Alternatively there are some who are doing much better with the use of cannabis.

Usually the CVS docs want to remove all meds and substances and start again with a clean system.

Amitriptyline is usually taken daily with the prescribing dosage adjusted as needed.  You are right about side effects and sometimes those side effects can be confused with CVS symptoms.  It is a complicated condition.

 Some doctors and especially ERs are refusing dilaudid.  You might want to consult with your doctor to be sure a plan is in place in case your doctor stops prescribing and has an alternative for you.


I am happy that you have found what is working for you.  Please keep us updated on your progress.


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ginny CVSA Moderator
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wynnak

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Reply with quote  #6 
I will mention that besides the opioid crisis, items like Dilaudid have been affected by the hurricanes that hit last year and took out the factories that manufactured it. So it isn't always that the physician is refusing the pain meds.. sometimes it is the type of medication due to the outside factors. Something I learned in the ER talking with the Nurses and Physicians. 
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