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ginny

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Reply with quote  #16 
Steve, I can see how anyone would think their symptoms are the symptoms others have.  I was surprised to find out about the degree of pain some have with their cycles.  

My daughter was very classic CVS.  Suddent onset, usually middle of the night (very early AM), no trigger we could identify, violent vomiting to the point of quick need of the ER and quickly going into the conscious coma.  She responded well to the typical medication mix but it had to be the complete mix.

Around 48 hours after sedation she would wake well, have an enormous meal, get dressed and get dropped off at school.  It was so odd as we did not know about CVS and no one has these huge stomach bugs so often or so violently and then just pops up in bed starving for hotdogs and spagettti.

I don't think she was diagnosed for around 20 years.  Now I know we are lucky to not have the pain.  Her one cycle with pain was actually liver failure and she had abdominal guarding.  The blood work showed the damage.  Thank goodness her doctor was on top of things or the CVS meds would have been deadly to a sick liver.

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scooky1

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Reply with quote  #17 
Oh Man
This illness can be different for everyone? no wonder it is so hard to diagnose and so many Doctors look at you like a German shepherd dog when you tell them what you have.?  It doesn't really make since but I am not a Doctor, it's like an illness that comes with options or different ………...or...……………..OH Crap it's too early and I just got out of hot shower, woke up with the monster scratching on my door so I jumped to it, shot myself (imetrex inj) Zofran, hyosaiamine sulfate, Norco and hot water on my stomach for about 20 minutes, that was about 40 mins ago and think it's time to go back in hot water, uh-oh starting to have that feeling gotta run to the shower. pretty sure I can stop this because it's still just scratching at the door, let you know what happens!
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shayden

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Reply with quote  #18 
Hi MGM and welcome to the group. To echo what the other members have said, CVS presents itself differently for all. I unfortunately have extremely long episodes unlike any of the others I’ve read about - I’ve been hospitalized anywhere from 4 days to 37 days.

I was misdiagnosed for approximately 10 years - my gallbladder has been removed, and I’ve also had a full hysterectomy because they thought my vomiting was a result of severe ruptured ovarian cysts. I, too, was episode free for a year after formal diagnosis and starting Nortriptyline, but my episodes returned with a vengeance in October.

If you live in Wisconsin, I highly recommend trying to schedule an appointment with Dr. Venkatesan in Milwaukee. I travel from Austin, TX to see her as she is a pioneer for CVS in adults. Continue to monitor and track your episodes as you have, as the history will be extremely helpful in reaching a diagnosis.

While I hope you don’t have CVS, I do wish you luck in getting a diagnosis. Either way, know you are not alone in this fight that can often be lonely, scary and frustrating.
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ginny

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Reply with quote  #19 
Great advice Shayden.  And Scooky, please let us know if you were able to tackle the episode before it hit full force.
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mgm748

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Reply with quote  #20 
Thank you so much everyone! I appreciate it. Thanks for all your insight. I, too, hope I don't have CVS, but hopefully we will be able to find answers soon. Your quick and thoughtful responses have been very helpful! [smile]


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scooky1

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Reply with quote  #21 
No Problem!
Knocked it out the second round of the med shower mix. The Dr. and the fact that it is hard to get (Dailaudid) changed that med to morphine suppositories. So the mix was 1- Zofran 2-morphine suppository 3- hot water 4- sumatriptan inj.  and it was like it never happened!

EXCEPT for the 15-20 minutes laying there waiting for it to happen, phone at the ready, got my hospital bag out.

New comers! (hospital bag)

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 not tell them what to 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.

                     That's about it for now guys, Thanks for being here! Steve

Moderators: Thanks for all you do, you guys are great!
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ginny

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Reply with quote  #22 
Thank you Steve.  Very helpful list and it has been a long time since anyone brought up the hospital bag. 

If you have a chance, maybe copy this over to its own thread?  Be good to have something recent title "my hospital bag" or "how to prepare to leave for the ER"-- or any other title you can think of.

I now recall a suggestion by a parent to take an index card to tape to the back of a car seat.  If anything happens and rescue workers remove the car seat, the treatment info, important numbers and information are right on the card.  

Such good news that you were able to head off the episode.  You are doing very well.

Thanks for the tanks! We love our volunteer work.  

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ginny CVSA Moderator
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