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scooky1

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Reply with quote  #1 
New comers! (hospital bag)

This is for new comers as well as professional CVS'ers 


Make a bag ready with things you will need. change of clothes, over nite kit- tooth brush etc. list of phone numbers if you don't have it in your cell, meds or you can just make a list of meds so you don't have to go threw telling them over and over put any other info they may ask or you remember from the last time you were at the ER who is your primary a copy of your diagnosis a copy of the Empiric guide lines and if you can get your Doc to write you a letter of introduction telling them he is treating you for CVS, how he would treat you etc. (your Dr. can't tell them what to do but he/she can tell them what he would suggest they do) only suggest.

I tend to be a bit cranky when I am in the ER if you snap at the staff they will just treat you worse so the more things you can cover in your list the less you have to talk and it shows them you are on top of your situation and makes their job easier.

And the other usual stuff, like making sure that you have a way home if you live alone like me getting home from the ER @ 4:00am can be tricky so it's really nice if you have that covered in advance.
Perhaps your city/town has a ride program that is covered by your insurance like there is in my county, it is pretty easy to research.
Having a towel is very handy if you have those heavy sweats like I some times have where you are totally drenched and cold
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shayden

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Reply with quote  #2 
Thanks so much for the post, Steve! I hope you have been feeling better...

One thing I have done that can be helpful is to create a binder with your medical history - it may be thick, but I bring it with me every time I need to go to the ER.

The binder has tabs for the following:

  • CVS Information to include all the information listed on the Website under Resources for New Patients.
  • Personal Information to include: medications, surgical history, etc.
  • Medical Records from Dr. Venkatesan with a pocket that contains her letter for my diagnosis/treatment
  • Medical Records from my local doctor here at home as I see him after each hospital visit; and his letters for diagnosis/treatment.
  • Tabs for each hospital stay and the associated records

Hope this helps! There is a wealth of knowledge on the Website!

Cheers to all.
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Hoppyone

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Reply with quote  #3 
Thank you for these wonderful tips. I haven't yet been hospitalized because I usually stop vomiting about the 11th hour and my Dr said 12 hours then go to the ER. But, that isn't to say it won't happen and to at least have the bag ready in case I have to go. Thanks again for this.
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scooky1

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Reply with quote  #4 
Hoppyone

Something I don't understand. you say you have not been to the hospital yet? How long have you had CVS. Have you been Diagnosed with CVS? because every person I have talked to who has CVS that have been diagnosed have all been to the ER? 
The pain is just TOO great ! you must have an incredible threshold for pain!
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ginny

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Reply with quote  #5 
Steve, don't forget that not everyone has CVS with pain being the predominate symptom. My daughter is one who had vomiting as her predominate symptom.  

Hoppyone, you can dehydrate and if you are getting dehydrated you cannot always be rational in thinking. Is there anyone to help determine if you are hydrated or not?

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Hoppyone

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Reply with quote  #6 
I live with a family member who is aware of what is going on and makes sure I can take a sips of water during an episode. My Dr is the one who told me to wait 12 hours.

Scooky1
Yes, I have been diagnosed with CVS. But from what I have been reading on here not everybody has the same symptoms. This started for me in 2012 and I had every test imaginable. I retch for hours and hours with an awful pain in my chest area. It took a new Dr in a new city to finally figure out what I had. I completely changed all my meds to the ones I have both read on here and talked with my Dr about. Yes, I do have a high threshold for pain but I am also a recovering addict so I try not to run to the hospital for because they will just think I am drug seeking. However, if I go past the 12 hours then I will go.
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scooky1

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Reply with quote  #7 
Well I am starting to feel like such a light weight because I go to the ER when I am sure "it's on" because I have learned that waiting just made things worse, because normally once it has started I know after the years it is not going to go away without IV meds and the longer I lay there the weaker I become.

I don't know what's up with woman or at least you and missy ! I joke with people some times " Woman say child birth is the most pain you can have" and I tell them CVSA hurts so bad I could do twins standing on my head!

Maybe woman are stronger than men, Ha

Did you read what they did to Missy? holly crap! That lady has it worse than anyone I ever heard of, and they did vary scary things to her! CRAZY ass sh_t! and instead of going OH POOR ME she was still looking for love and found it!

And I was absolutely sure I knew everything there was to know about woman and there was no higher authority! Go figure

Moderators- I know you are right and you keep reminding me that CVS treats most of us differently, I just like it when you chime in!

                                  We can have a little fun, Take care. Steve
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ginny

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Reply with quote  #8 
So on getting treatment, of course listen to your doctor.  I follow Dr. Fleishers Guidelines which is to treat quickly to end the cycle as soon possible.  Waiting prolongs everything.

However we need to follow the advice of a trusted medical advisor.  

I am not sure it is pain threshold or variations in CVS that makes the difference.  

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ginny CVSA Moderator
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Hoppyone

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Reply with quote  #9 
I guess my Dr doesn't have that treat quickly mentality. Actually, I don't think it's that. I think it's because we are learning this together. She has one other patient with CVS but she got her because she aged out of pediatrics so she is only going on notes from the pediatrician. Maybe I should think about seeing the Dr in Turlock. Maybe I am doing this wrong and should be going to the ER sooner than I was told to. I found out Kaiser will cover the visit for me so I'm good to go financially.

Can I get the name of the Dr in Turlock again. I would like to research him.

Thanks for listening to me babble. I'm just wondering if I go to the hospital right when an attack starts can they stop the attack or cut down on the duration. I already have compazine suppositories for home use when I'm vomiting. I also have klonopin but I can only take that when I am done to help me rest. Is there anything else I should get from my Dr in case I am sent home from the ER?
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ginny

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Reply with quote  #10 
Have you read Dr. Fleishers Empiric Guidelines (located on the CVSA web site) or any of the other published studies such as Dr. Fleishers study on adults?  You and your doctor will find this helpful.

To locate CVS experienced doctors in your area please email the CVSA office: CVSA@cvsaonline.org

Your doctor is probably qualified to treat you, and your doctor also sounds kind and understanding.  You can ask the CVSA office to send your MD the Professional pamphlet of information and also a patients pamphlet for you.

Dr. Fleisher believes in sedating early in the cycle as sleep is what resets the brain and allows the cycle to be ended sooner.  

Everyone is different.  There is thought that pedi CVS might be a different condition than adult onset. Many adults have more bowel issues and many have been through a severe trauma.   Of course nothing is true of all who have CVS.

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ginny CVSA Moderator
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