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epeyer

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Reply with quote  #16 
Hi Everyone,

Thought I'd stop by for an update. I had an appointment with a GI earlier this month (July 3). I brought the new adult guidelines with me, but she wanted to run some tests before diagnosing me with CVS. We scheduled a upper GI scope with biopsy for next month and a Gastric Emptying Study. I had noticed some correlation to getting sick while on my period, and since I started having episodes around age 11/12, the GI thought there was definitely a connection. So I anxiously awaited my period this month, but everything was fine! Fast forward to today: I'm scheduled to have my gastric emptying study this morning, but wake up feeling off. I don't eat anything (as instructed) or take any meds, but head to the doctors to see what they want to do. We end up re-scheduling since vomiting will negate the study. My primary care physician had given me some promethazine  as another anti-emetic to try besides zofran, so I took some when I got home. So far I've been sleeping a lot, but my stomach is feeling pretty good and I've kept down two pieces of toast.

Basically, now I'm second-guessing whether this was actually an episode and at the same time wondering if once the meds wear off, I'm going to feel sick again. According to the CVS Adult Guidelines, I have moderate cvs, although I've definitely had more than 4 episodes so far this year. 

What have others experienced with Promethazine? It definitely dulled the pain better than the zofran and so far I haven't thrown up. The sleeping all day seems to be a pretty consistent thing for my episodes. 

Thanks,
Erin
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shayden

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Reply with quote  #17 
Hi Erin and great to hear an update!

Menstrual Cycles are a common trigger for women sufferers of CVS. Pre-hysterectomy, had I known about CVS, it would have definitely been one of my identified triggers. Now, I am mostly clueless about my triggers other than the general bucket of stress - both good and bad.

It is good that you are getting the tests completed - better to rule everything out, and if test results are normal, that is more evidence toward potential CVS.

Do not discount your vomiting as an episode if it stops after taking Promethazine - document it as it is possible you were going to have an episode but were able to abort it. Aborted or not, it is important to track as you work toward diagnosis, trigger identification and what works from an abortive perspective to end an episode quickly once it starts.

Regarding abortive medicines, these are a series of medicines that are prescribed solely for the purpose of trying to end an episode the moment you notice one coming on. The goal of abortive meds is typically to sedate - because CVS is a brain-gut disorder, the intent of abortive meds are to reset the brain. So it is a great thing you are able to sleep once a potential episode begins.

I hope you are getting closer in your journey to find a diagnosis. We are here for you...

Best,
Serena
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epeyer

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Reply with quote  #18 
Thanks Serena- this info is helpful [smile] I hadn't thought of the sleeping as a reset, but that makes a lot of sense!
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shayden

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Reply with quote  #19 
No problem! And if you haven’t had the chance yet, read the adult guidelines posted on the CVSA home page. It has info about the four phases of a cycle and other great learning information to help you and your care team learn about CVS.
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MaggieMae

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Reply with quote  #20 
Hi all,
I've been reading all of the posts over the last two weeks. Our daughter-in-law started getting sick three years ago. Into the ER, admitted and then after 7-10 days discharged and better. Then around 6 months later, same thing. Each episode has been worse and lasted longer. This time she is in her third week and no better at all. The gastro doctor actually shrugged his shoulders when I asked him what can be done. He's lost. So tomorrow they are going to another gastro doctor some distance from home. I printed off the adult guidelines on the home page for our son to take with them tomorrow. This is so debilitating to her, she just isn't able to function. And she is such a go getter, always on the move. At this point she is just so sick and tired of being sick. This is such a horrible illness. I pray constantly and research, research, research. I'm so glad that I found this forum and so appreciate all of you sharing your stories. Thank you all.
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ginny

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Reply with quote  #21 
Please let us know how things go with the new doctor and please post his/her name if he turns out to be a good doctor. We have a thread on the "Important CVS Information" section of the MB for posting the names of good doctors.  The CVSA office also keeps a current list of doctors who are treating CVS.  You can get that list at CVSA@cvsaonline.org

I think there are still Professional Pamphlets that CVSA can send to your doctor.

In addition to the new adult guidelines, I still feel that the Empiric Guidelines are a huge help for patient and doctor.

This is a very tough illness and I hope your daughter in law finds the support and help she needs. She also needs to have various medical tests run in order to rule out other conditions.


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wynnak

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Reply with quote  #22 
I agree with Ginny. Get a list of doctors familiar with CVS from the office or request it on the website under the new patients tab. 

Getting a doctor familiar and/or willing to learn about CVS was life changing for us. 

Please keep us updated.

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MaggieMae

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Reply with quote  #23 
Thank you Ginny and Blynda. So she was referred to a "doctor" in an another area and she actually saw a PA. She was told to keep on the very same meds (that don't work for too long) and to avoid pizza and hot and spicy foods. Thankfully this episode is coming to an end in day 24. I believe that there aren't any doctors in our area that know anything about CVS. We know there will be a next time and it's so frightening to think about. It's such a debilitating illness and heartbreaking for those who see it happen to a loved one. Thank you for an outlet just to talk about this.
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MaggieMae

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Reply with quote  #24 
Ginny, for some reason I can't find the list of doctor's treating CVS?

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ginny

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Reply with quote  #25 

On the MB-- no one posts often so not sure how current-- under the Important CVS Info Tab is a thread about doctors.

For a verified up to date list please contact the CVSA office at CVSA@CVSAonline.org
The office will send you a list of doctors in your general area.  


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ginny CVSA Moderator
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MaggieMae

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Reply with quote  #26 
Thank you Ginny, I sent them an email, much appreciated, have a wonderful weekend!
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ginny

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Reply with quote  #27 
Let us know how it goes.  It does sound like the PA is thinking tummy issues and not brain gut.  Any possible chance of getting to see Dr. V for a one time consult, or to NY or MA?  Having an excellent doctor makes the biggest difference and if someone says no pizza or spices, it sounds like they do not understand CVS.
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ginny CVSA Moderator
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shayden

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Reply with quote  #28 
Hi MaggieMae -

Was reading your post about your daughter-in-law - her episodes are very similar to mine as they started as 7-10 days long and now turn from acute to chronic. My longest hospitalization was 37 days.... While that is not typical of most CVS sufferers, Dr. V has re-confirmed my diagnosis.

Were you able to get the list of doctors from CVSA and find one in your area? If not, I highly recommend Dr. V as Ginny noted - I fly annually from Texas to Wisconsin to see her. She has helped by confirming diagnosis, prescribing the proper daily preventative meds, prescribing the proper abortive meds and providing an ER protocol letter so emergency doctors are provided with a suggested treatment guideline. She is also available for the hospitalists to consult with when I am hospitalized for my episodes. She has been such a blessing in my life.

Hoping that all is well with your daughter-in-law - y’all are not alone!

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MaggieMae

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Reply with quote  #29 
Thanks so much Shayden. Every time the episode is over, it's such a relief. Not just for her, but for all of us who love her. I've sent all info to our son. It just seems so crazy to have to fly to see a doctor, but if alleviates in any way this disorder, then it's worth it. I just want ALL gastro doctors to learn about this and try and understand it and communicate with doctors with experience. How can we all make this more public? I want people to be aware, after three years and many hospitalizations she was just diagnosed a few weeks ago, it's just not right! Sorry for the rant, very much appreciate any input from anyone. Thanks!
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wynnak

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Reply with quote  #30 
MaggieMae,

I understand that relief! On the back end already anticipating the next one. We don’t fly to a doctor, but we have driven several hours one way to see one that wanted to make a difference. Even not having experience, the drive to understand and be able to help was wonderful. Hard to find in a physician. Our primary does all he can and helps us get what we need in the best way possible for us. So if you can’t find a CVS doctor, an empathetic one is good. I’ve heard of even Obgyn’s that have been helpful especially for females affected by their cycles. There are many that have learned about CVS to help their patients.

CVSA does a lot of work doing this. They were just at Digestive Disease week which the annual conference of three different gastrointestinal organizations over 14000 people attended.

I share info with every doctor I interact with. GI or not.

I have heard that CVSA is also trying to get into neurology groups.

Personally we have had better luck with neurologists so I am excited for this.

You can see some of these efforts In the enewsletter if you’re signed up to get them. You can volunteer to help advocate with us if you’re interested, there is a signup on the website.

Those of us that volunteer with CVSA do it because we want to drive change and make a difference

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Blynda
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