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Lisser

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Reply with quote  #1 
Hello there,

Just curious how long people have experienced a period of remission between episodes?

My CVS does not follow a daily pattern that can be followed on a calendar. Which is nice - and also very frustrating. It's hard to know whether I'm coming or going in regards to these episodes.

Curious as to how long breaks last with other folks on here.

Thanks!
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ginny

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Reply with quote  #2 
We are around 12 years in remission!

If you keep a CVS journal (one is located on the CVSA web site) you might be able to better pinpoint  the warnings of an impending cycle.  Not everyone has a trigger or prodrome but many do.

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wynnak

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Reply with quote  #3 
Are you looking for the length of normal between episodes, Or the period of not having episodes that is longer than your span of healthy between? 

My son's periods of healthy between episodes was initially two weeks. Then things got really aggressive.. for the next couple years.

He actually hasn't thrown up in 3 years and 1 month. But he still has periods of intense Nausea that are technically still considered an episode. But we can live with those. We can manage those.  My son is pushing to not seek treatment for his nausea, because he would like to hope that his CVS is "in Remission". In fact, we had thought that he was since he wasn't actually throwing up, but since the intense nausea is still a factor.. he is not. But we are happy where we are at. 

If your asking if we know what the longest period of remission is, We wouldn't. People find ways to manage or treat their CVS and we may not hear from them again. Plus with people being treated by different doctors, I do not think there would be a way to track that. But it's a wonderful question. 

I agree with Ginny, Keep a journal or we used a calendar and just made notes about things we noticed. That was also how we decided that his nausea was happening about the same time every month. It still has a cyclic pattern and requires meds to manage. So we I can not say that he has experienced Remission. His main method of treatment lasts about 6 months.. that may have been his longest period of not having an episode.. But, again not remission. I wholeheartedly look forward to him experiencing it though. πŸ˜‰ We used to hope to abort an episode.. people talked about it like it was possible.. But we had the hardest time. SO big change for us to look forward to another thing that people talk about πŸ˜‰ 

But, if your talking about how long healthy between episodes, that is a very wide range. I have seen days to years. 

I hope one of us was able to help you out there.. But I saw this same question posted on Facebook and wondered if it was addressing the the healthy period between episodes, or the length of time people had gone without having an episode. 


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Lisser

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Reply with quote  #4 
Sorry, to clarify I meant period of time of being healthy between episodes of being ill.

For myself, I don't count the other stomach issues I deal with daily in between as "being sick" - and that's just me. I count the episodes that keep me in the hospital and out of school and work as being sick - or "an episode".

I have had CVS for most of my life, though I was not diagnosed until I was 14.

I have been in what I consider "remission" for 3 months now, as in I have had no "non-stop puking" episodes. Which I am seriously greatful for.

I have gone as long as 2 years without a single episode - (before my diagnosis). Now that time is usually between 4 & 6 months.

I'm going through another break from being really sick, coming up on 3 months now. Every time I get a break I convince myself that it's over, and my brain has magically re-hardwired itself, and that maybe I'll never be sick like that ever again.

I'm just wondering what it's like for others experiencing CVS, same goes for those who are sharing lives with others who have it. Because there is no one else I know who has it, I was hoping to hear different cases - hoping that maybe for some people CVS has left their lives for good.

Hope that helped to clarify a bit.
Thanks for reading!

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Shellly

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Reply with quote  #5 
I haven't been sick since January 🌞
So I'm really pleased with myself πŸ™‚
Last year I was in hospital quite a few times 😷
I just hope I don't get sick again , but the longer "I'm ok " I know it won't be long before I have another episode, but I think positive and take my medication and hope it doesn't happen again 🌞

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🌞 Shelly 😍
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izmo

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Reply with quote  #6 
I had episodes pretty much daily for 5 or 6 months while we were going through the process of getting diagnosed. Once I started on meds they went down to once every few months, and then after a while they slowly stopped. I was 3 years episode-free until yesterday, when I had probably the worst one ever. :-(
But hey, 3 years is pretty good and I can’t really complain.
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Shellly

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Reply with quote  #7 
What medication are you on .
I'm on medication but I still get episodes, but not so many .

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🌞 Shelly 😍
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izmo

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Reply with quote  #8 
My doctor put me on amitriptyline daily and it helped a lot once we found the right dose. I actually stopped taking it a while ago, but I do take sertraline to help manage my anxiety which is a big trigger of mine.
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wickedmystickmuzick1

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Reply with quote  #9 
Quote:
Originally Posted by ginny
We are around 12 years in remission!

If you keep a CVS journal (one is located on the CVSA web site) you might be able to better pinpoint  the warnings of an impending cycle.  Not everyone has a trigger or prodrome but many do.
whoa! 12 years? how? longest i've had is 3 mos


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ginny

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Reply with quote  #10 

There is always hope.  I think there are others who have gone longer than my daughter.  It was thought that CVS would never go away.  I don't know if that is a current theory or not.

We seldom hear from those who are doing well. 



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MannionUSMC

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Reply with quote  #11 

Stress is a big part of my triggers.  With less of a care team (lost GP and Pain management) I am in the ER often.  When I was at my most stable it was every few months (with proper home pain management to stop attacks, and a good care team).  I was beat on by security again a few months ago and lost GI and PM, now I am in weekly. 

So the longest for me is a few months.

CoQ10, L-Carnatine and Elavil have all proven to be extremely helpful in lengthening the time between attacks (for the first two) and allowing me to be calmer in the ER and not so in need of a treatment in regards to the Elavil.  I started the Elavil around when I lost my pain management so I am associating the increase in attacks with losing the ability to stop attacks at home, not the Elavil causing more frequent attacks.

I am glad you have some time in between your worst, and hope you fine even more to help you gain some more time between the beast. 

Just Keep Swimming

Mannion

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etira97

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Reply with quote  #12 
Like Ginny has said, it is difficult because those that go into periods of remission rarely come and visit the message boards. I am one such person that has been doing well, and I've been trying to pop by every now and then.

I have not had a full blown episode since Sept 2014, so I am almost 4 years into remission. I have had episodes since then that I have aborted. My episodes typically start in the morning. I have always found that if I am able to get through the morning hours without throwing up then I will be able to successfully abort the episode. My anti-nausea meds never used to work, but lately they have been. I had a particularly bad episode this past August where I was sure that I would end up vomiting and having to go to the hospital- but the meds toned down the nausea just enough that I was able to make it through those morning hours. I'm honestly very interested to see how the condition changes as I get older.  For reference I am 21, and have been diagnosed with CVS since I was 13. I used to have episodes every 1-3 months that could last anywhere from 12 hours to several days. Cherish any amount of time (no matter how small) between episodes where you can live your life how you want. I never thought I would be doing as well as I am now.

Best[smile],
Etira
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ginny

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Reply with quote  #13 

Etira, thank you so much for popping by every so often and for posting about your incredible four years of no hospital admits!  I think my daughter was probably similar to you-- the episodes became less frequent, she did not require an admission or ER visit and then time just went by.  

Thank you again for your encouraging reply!  Be well.


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