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Reply with quote  #46 
Hi
I'm Joanne and I guess I've had cvs all my life. I am now 44 (at least until fri.) I always remember back in "those days" they called it a "nervous stomach"  I like many others have had my gallbladder out (when I was 26) but it WAS discovered to have been diseased.  That of course didn't fix my problems but attacks seemed to be far enough apart to not be what I consider debilitating.  On 6/6/06 (it figures) I was having a bad cycle and after 4 hours of locking myself in the bathroom with my fist down my throat in a feeble attempt to abort the oppressive pain that makes me feel as f I will explode from the relentless pain, pressure strangling pressure in my abdomen I relented to an er trip.  Unfortunately for me while they were doing the usual blood tests for liver, pancreas etc and x-rays and ultrasounds they discovered a large tumor in my left lung.  Thank God for the morphine they had already given me.  Anyway directions shifted quikly and now the lung thing took over my life.  I had my first endoscopy along with a bronchoscopy .  Well of course they couldn't reach the lung tumor and found only sl barretts esopagus and esohogal erosion and gastritis.  After a pet scan they have decided my lung tumor is most probably benign and I continue to have it checked every 6mo.  3 doctors later (gastro.) My current dr is doing my second endo. tomorrow but has after every other test decided it is cvs.   He has precribed zoloft but I have decided not to start it until after my endo.  Unfortunately this is diagnosed only by eliminating everything else.  I pray for you all especially the little ones since I'm living proof that you don't grow out of this.  I feel blessed finally to have a name that I can put to my demon and to know that there are others out there just like me.  Good luck to all
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Reply with quote  #47 
Hello All,
My name is Gus I'm a 24 year old living in Buffalo NY and I've been diagnosed with CVS since I was 18.  I remember my first outbreak was after a night of drinking with friends, yeah I know what your all thinking, but at that age I didn't drink as much that night "as I could have" so when I woke up the next morning in my parents basement violently vomiting while yelling upstairs "mommy pepto!"... which thinking back on it now is as funny to me as it was to my friends then...it was a suprise to me when the sickness lasted 18 days instead of the expected few hours like a hangover.  As the years go by I just keep wondering and hoping and questiong the same things...
"Will this ER doc even know what CVS is?"
"Is there anything that can help?" and last but not least...
"Is that doctor going to prescribe me those damn things I gotta shove up my butt and it doesn't even work... just makes me crap vaseline on myslef..."
but all jokes aside I'm serious... how many countless people have this that don't know? How many people need to have for some doctors to become aware?  I am so glad I ran across this site last night for two reasons, one because now I know there are people out there with symptoms almost exactly like mine and two maybe get some awareness out there for the sake of all of us with this horrible horrible sickness... thank you all for reading and listening and please stay healthy...
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Reply with quote  #48 
Greetings,all from the Hurl Girl Amy. I have some hopeful news. Since the ER staff are such butt rashes when it comes to treating my CVS episodes, I met with my PCP doctor and he has written an instruction sheet and called the head doctors of the local ER to let them know I have a legitimate illness and it should be treated a specific way. After a quagmire of ER visits and a plethera of different ER experiences involving different doctors and staff members, I have found the magic bullet to stop the retching episodes. First of all, I get to the ER as soon as I feel an episode coming on. In the past, I tried to stick it out at home until I was so sick, I needed IV fluids and potassium to prevent me from going into cardiac arrest. Now, I go in before I need an IV, wich they bungle until I'm a pin cushion because they can't find a vein any way. I then get 3 IM shots. ** mg of demarol, ** mg of phenergan and ** mg of ativan to stop the heaving and pain. The IM shots last longer, too and I'm up and running within a day or so.
As mentioned in some of the CVS documentation, I have also been prescribed a medication called amitriptyline. It's supposed to prevent the CVS episodes returning at all. I'll be glad if it just cuts them back some so I can have my life back. I just started it, so wish me luck. I'll let you know if it helps. I am hopeful. I feel like my PCP is pulling all the strings he can for me and I'm hoping to be treated with a little more respect by the ER staff and doctors.
Amy.
p.s. I would sure appreciate some e-mails from some of you so we can get to know each other a little better. My e-mail address is grd@animas.net. Make sure you leave a CVS subject so I don't delete your message. I don't open e-mails from people I don't know if it looks like they're just trying to sell me something. God Bless.
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dave

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Reply with quote  #49 
hi my name is robin.  my husband dave is 33 and has been suffering from cvs for about 15 years. We have two boys ages 5 and 8.  Our lives have been drastically changed by this illness.  When I met Dave in 1997- he was working and living a somewhat normal life.  He was getting sick about once a month for a week long.  But also suffered from nausea everyday and had tough mornings.   He was a huge hockey player for all his life - made it to the semi-pro's. He had to stop because he started getting sick too often.
We got pregnant and married in 1999 and things changed.  We got  a house, cars, and worked.  He almost missed the birth of his son because he was sick- but somehow adrenalin took over and he made it an hour before he was born.   He was sick alot more often. I remember once he did fall asleep - I never dared wake him up because he was sure to get sick. He began to get sick more often.  Since then he lost his job due to this- we lost or house and our cars and I had to become the caretaker of him and our boys..  we moved in with an elder family member and now rely a lot on his family financially. For the past 5 or 6 years he is sick every other day. But when he is sick he is sick for about 18- 24 hours and then needs to sleep.  He often wakes up and feels horrible for the next 2 days while his body tries to recover and start to eat. He hasn't eaten normally in those 6 years. He has gone from 185 pounds to 125.  He has been so sick that I am sure he won't make it. - But he does and is - he is amazing for being so strong and pulling it together to live for us. I know all you understand what that means. You have to have something to live for- because the way you feel isn't going to get you thru life.  We struggle everyday to try and make our kids life as normal as possible.  It sure is hard- Dave has been on every med- done accupuncture ( and still would if it wasn't so expensive) and I became certified in Reiki healing.  I do believe these things would help- it's just tough to find the right balance.  I'm glad I'm finally part of your team. Take it easy and god bless you all

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Reply with quote  #50 

Hi all  I am  joe . It looks  like I have  had CVS for 10 years I am 42 , live in  NJ , IT feels  good to Know I am  realy sick and its not just reflux, to manny  tums . Roladis , and milk . exc,  exc ,

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Reply with quote  #51 
Hello!  I've been lurking on this site for some time now and figured I would come introduce myself.  I do not have CVS, however, I am pretty certain that my boyfriend does.  He has been having unexplained vomiting and nausea for about 5 years now - some vomiting episodes have lasted 10 days!   All of our visits to the doctor/ER result in nothing more than IVs and testing.  When he brings up CVS to the doctors they say it cannot be CVS because he has nausea  practically every day.  However, after reading an article written by Dr. Fleisher I wish these other doctors would do some research and not dismiss things that they do not know enough about.

Anyway, my boyfriend is currently in the middle of an episode - his first one since Christmas - and I am calling a doctor who has experience with CVS once a reasonable hour approaches.  Hopefully she is accepting new patients.  I know that there is no cure for this, I just want him to be able to live with the constant fear of "when am I going to be sick again?"





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Reply with quote  #52 
Hello, My name is Robert Adams and I am 33, I prefer Bob but whatever. I have had what I believe to be C.V.S. for about 4 years now, it came out of nowhere while I was working overnights at Wal-Mart. I am not diagnosed but have told doctors what I believe it to be since hearing of C.V.S. and that has not helped. I currently have a prescription to amytryptalyne and 1 mg tabs of ativan. Honestly, nothing helps so far. Today I feel sick every morning, no matter what, some days better than others, some horrible. Have an episode at least once a month. Usually 24 to 48 hours. Have had episodes lasting 2 weeks. If I am to be honest with everyone I feel like I am in serious crisis mode. I am by far not a suicidal person but depression is killing me at this point. I am trying to get insurance now. I had Kaiser and I am not going to talk bad about anyone but they were very little help. I no longer have Kaiser or any ins. And getting insurance is a problem now due to my past history with Drugs. Which is 10 years old now. I was hospitalized twice and went through multiple tests only to be diagnosed with stress, due to Kaiser not acknowledging C.V.S. Absolutely lost and feel so alone. I emotionally am drained and feel like I canÃÕ do this for three more years or even one. I have a 16 year old son, a 5 year old daughter and a baby boy that just turned one. My little girl canÃÕ see me sick anymore, and I canÃÕ stand to be like this! I have been looking at this web site for about a year now and am finally saying hello. Guess I have a hard time accepting all this. Just got off the phone with Judy, and just talking to someone with knowledge and resources was a relief. Thank you. Thank you. Thank you. And it is nice to have people I can relate with now.
 
05-01-08
 
Was diagnosed with C.V.S. 3 days ago, And am in a whole lot better spirits then i had been prior to seeing DR.Fliesher. So well worth the $$$ And i dont have insurance as of yet but a lot closer. Found some HOPE!!! And all of you, That was all part of the hope though!!!!!
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Reply with quote  #53 
Your name: Lauren.

Who is the CVSer in your family and what is their age? Me, I am 25.

Please tell us your story, and how you came to be here: I have only been diagnosed recently with CVS after a very long episode this time around including at least 30 odd Emergency room visits two weeks in hospital one here and one in another town. We can document the last 5 years of CVS  when the episodes were how long they lasted. I have been through all of the tests to rule out anything else, sick of being scanned, prodded, injected, having blood taken all the norm that we all go through. Have no idea how many times I have heard "Well we don't really know what is wrong." It took my new GP to start to hint on it could be CVS but we still had to go through the tests found out I have a cyst hanging out on my liver and a polyp hanging out on my gallbladder neither to worry about at the moment according to my GP. My specialist is still talking about a few tests to run to check out a few other things though between my GP and psychologist they agree that it is CVS. I have done the psychological tests to see that there is nothing there I can tell you I am sick of doing the DASS. I have been trailed on way to many different drugs swapped from one thing to another whilst in the middle of an episode. It just get to the stage where you go I am over it! I am over it, sick of the tests, sick of everything.

In my current I am: An admin assistant  well trying to be when I am not  trying not to throw up in my bin, lol. I am also a writer well try to be.
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Reply with quote  #54 
Your name: My name is francis

Who is the CVSer in your family and what is their age?My wife taschal shes 28 (pronounced tuh-shawl)

Please tell us your story, and how you came to be here:I met my (now) wife in her senior year of college at u.c. in their bachelors of accounting program.  As we were dating  she ended up in the e.r. a few times with nausea and vomiting  but  it was so spread out that we assumed it was a flu bug or a hangover. Eventually she moved in with me and got pregnant and thats when all hell broke loose.She had severe nausea and vomiting from the time i rolled off of her until the time our daughter popped out. Shes 5'10"ish and was 160 when she got pregnant and 130 when she delivered! Since we weren't married at the time the hospital immediately put her on Medicaid and she ended up bed ridden (at home at least)with a visiting nurse who would come to our apartment daily for her feeding tube, i.v. fluids and the pick lines for the i.v. fluids.She barely made it through our wedding ,which we had at our house (we started renting a house for the kids) on our deck.Our daughter was 4lbs 10oz when she came and the docs told us she was borderline being a premee but seemed healthy otherwise so they let us take her home.
   During the 9 months my wife breastfed all her problems disappeared and we thought that was the end of it.We were wrong.As soon as she stopped breastfeeding it started back up again so we started really tying to "find and fix" whatever was wrong with her.This led us down the "diagnosis roller coaster".One doctor even thought it was her gall bladder and removed it ( in my opinion its gotten steadily worse since then).She made her final exams running out the room every 5 minutes to vomit.She did make graduation though she ended up in the e.r. right after.We ended up buying a house 5 down from the one we were renting.
   So now she works part-time (when she can) for a few people she knew from college who flip houses being basically their office manager.She also tries to help out at home with the kids and the household chores when she can.I have a son from a previous relationship who has been with us basically since birth so we have a total of two my 5yearold son and our 4year old daughter.We also have my disabled mother (who was an RN for 20years)with us who has no insurance and has sarcoid,lupus, and M.S.
  On about the 20millionth time my mother was bedridden and my wife in the hospital again I told a buddy of mine I was about to go down to the local news station and tell em "You got two choices you can arrest me or you can do a story on me but i ain't leaving otherwise!"Thats when a few people told me to call mayo clinic and Cleveland clinic.Mayo said basically "screw you" and Cleveland said they'd have a G.I. guy see us.They of course ran the obligatory gazillion tests shes had so many times before and i thought "o.k. while were up here let's just start seeing a person from every single medical specialty  there is and mark em off as we go until somebody comes up with something."The G.I. guy said there was no point in that but he couldn't find anything and wouldn't give us a referral.
  So we started to search out a pain specialist.Found one in cinci and he kinda sucks.He says to call him when the meds run out to get more but when you do his office staff tells you it's too soon for a refill and you'll have to just tough it out.That means my wifes back in the e.r. for the two weeks she now has to wait for her refill.Anyway, we ended up going out on our own seeing  endocrinologists (or hormone specialists) thinking it had something to do with her period because that always makes it much worse.Of course nothing.Gynos couldn't find anything either but in the meantime the pain guy decided to do a "plexus block" which is basically a shot in the spine to deaden those nerves for a while around where she gets her pain.They did work for a few months and for a few months things went o.k.The last one she had didn't work at all (maybe he missed!)and she's had it worse than ever before.We then called to make an appointment with a neurologist in cinci thinking if the blocks were working than it had to be nerve related and that's when we first heard those 3 letters CVS.She's been in the local hospital pretty much ever since then and that was about a month ago.Except for one day when we went to Cleveland clinic armed with articles from this website and got told this will never end and you need to get off all narcotics.
  The pain docs been pushing this "spinal stimulator" which is an electronic device implanted in the spine that can "shock" the nerves with a small electric current basically parilizing them so you can't feel pain.I'm thinking that's the direction that we may need to go from here?

In my current or ‘previous life’, I am/was a: I'm a cable guy?
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Reply with quote  #55 
oh geese where to start. well my name is starla im 28 years old iv been sick sence 2003 iv had cvs for 5 years now. it started after i had my son. I thought i had the flu thats what the dr. said but 2 weeks later i was still sick so i went back to the dr. he told me to rest it will go away. so I did but it only got worse. i took my husband in to the dr. with me to tell the dr. theres something wrong other then the flu. the dr didnt listen said nothings wrong it was all in my head. so i brought my dad with me a month later. The dr. still wouldnt listen. Still being sick mind u 3 months later i took my mother inlaw with me as they looked at me as a drug addict. iv never ever dreamed of tuching drugs in that manner. getting skinner and skinner sicker and sicker she told them "Iv been with her sence the day she got pregnant and there is something wrong". So they finally listened to her and did every test under the sun and found nothing the matter. I lived in washington state at the time so they sent me to portland or. to a dr. out there they found nothing wrong. i came home and had lost all hope for life by that time it was a year later. I went to a inturnal medican specialist and he took a good look at me and my file after going to the dr. about 30 times before this he told me he had gone to san fransisco to a special meeting for dr's like him and said I think you have cvs. I asked what the heck is that he told me and gave me info to look up on the internet. At that time i thought it was a joke. he put me on all kinds of pills and things i thought i shouldnt be taking but i took them. They didnt help at all. He sent me back to portland to a different kind of dr. a medical marijuana dr. at that time i thought this man is crazy. But i thought id try anything just to make this stop or go away. So i listened to that dr. he told me to just try it so i did. i was tired of pills and sleeping all the time so i tried it and well it was the best thing that worked and now as long as i take the medical marijuana it has made my symptoms less painfull and i can eat again i gained the waight back and am healthy again thanks to that dr. with out him i think id be in the hospital with a feeding tube. I give credit to the people that listened and believed me and thank them so very much. i still have bad days dont get me wrong but most days i can play with my chidlren and help them with what they need now and i feel theres something to live life for again. I live in texas now and they do not have medical marijuana but i still use it as its needed. i dont have to take all the pills and sleep 22 hrs a day anymore. I feel i have my life back and am in controle of it. with that i will close thanks for your guyses time and for reading this if theres anything i can do to help anyone you can email me at foxyshera@gmail.com . i hope and pray that anyone with cvs gets well or gets the help they need feel free to contact me anytime you feel theres no hope THERE IS ALWAYS HOPE!!!
BLESSED BE
STARLA
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mahler1987

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Reply with quote  #56 
To those I have yet to actually meet, welcome to the boards.  I am so sorry you have a need to be here yet I am thrilled that you found us.  As you see your not alone.  There are many of us walking the path your on, albeit we may be in a different place on that path. 

There is alot of information on this site please take the time to check it all out.  There is a search feature that allows you to search past threads on topics that you yearn for information.  Simply type in a few key words. Click on the CVSA link above and look through all the topics and resources.  We even have a mall, that when you click on it allows you to order from many popular sites at no additional cost to you, but these companies will donate a small amount to CVSA for simply using our mall links.  Personally I get my avon, and shop from old navy for our clothing using these links.

If you have questions please post them, if you need help using the site let me know, I will be happy to assist you.

Meanwhile welcome to our family and please read the forum posting guidelines sent to you when you registered, they are also located in another forum.

Pattie

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I may have CVS but CVS is not me.
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sheryl65

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Reply with quote  #57 

Hi . I am Sheryl.. I am 42.. I started having attacks, out of the blue,, 6 years ago. Its been a nightmare since.......


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Reply with quote  #58 

Hi - My name is Dan and I am very new to this whole thing.  I don't know if I have CVS but it sure does sound familiar.  About a year ago, I got sick after eating out.  It came right out of the blue.  I thought it was either food poisoning or flu.  I vomited and had diarrhea, it lasted for a few hours and then I started feeling better.  I didn't think anything of it, although I wasn't too hot on going back to that restaurant.  About 4 months later, same thing happened.  This time, it seemed to take a day or more to recover.  About 2 months later, it happened again.  About a month later, again.  A month ago, it happened again, then two weeks ago and then last Friday.  I do have a big medical file at my PCP.  I have diabetes, neuropathy and high BP, high cholesterol and strange abdominal pain.  It occurred to me about a month ago that this wasn't a bad streak of food poisoning.  Especially when nobody else was experiencing similar problems.  I have read up on GP, but it seems like that is a more constant problem.  Yesterday was the first time I have heard of CVS.  I have a referral to a GI Dr and am going to make an appointment today.  I'm not looking forward to all the tests but I guess it would be good to know more than I know now.  As with neuropathy, looks like this CVS thing can be treated but not fixed.  I'm sick and tired of non-fixable illnesses.  I have lots of questions so I hope I don't make a pest of myself here.  Glad to meet all of you here.

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Reply with quote  #59 
Hi, my name is Diane , my 24 year old daughter Erin was diagnosed
3 weeks ago with CVS.  We live in Montreal Quebec Canada.  Our story begins October 2007 with a bout of what we assume is the flu it lasted approx 1 week and everything resumed to normal.  In November 2007 days before her 24the birthday she begins to feel extreme nausea followed by vomiting which lands her in hospital to be rehydrated/and intravenous anti nausea we arrived at 8pm and was released at 3am.  Once home she begins
to feel nausea/and again the vomiting continues, we go back to hospital in the morning and again the rehydration/anti nausea by late afternoon she is feeling better and released being told that a very bad gastro has been going around and she was one of the ones who got it real bad (they did all the blood, ultra sounds, x-rays just to eliminate other illness. This episode lasted approx 10 days.  In February 2008 she feels nausea and vomiting ensues but only lasted 48 hours.  Everything fine between these episodes so it just get put in the flu/gastro catagory.  Well May 9th on our way to Maine I get a call from telling me she thinks she has food poisening (ate a KFC bowl at 02:30 am) not feeling so good, by Saturday she is feeling a bit better and on Sunday alls well.  Monday she feel nausea/and followed by vomiting by Wednesday we are at the Hospital being rehydrated/etc...a battery of test's are done ultra sound/x ray/bloods etc...many questions asked about history, they keep her overnight and gets discharged in the am Thursday.  Friday we are back same thing bloods are done again, the ER staff get a Gastro to come visit he tells her to come back the following Thursday May 22)to have an endoscopie.  By the end of the day Friday they try to have her eat and she feels nausea/and a general malaise.  They keep her and tells us that a Gastroentrologist will be coming in Saturday morning and they will do an endospocie a.s.a.p to try and get to the bottom of this,  sure enough the Gastro comes and speaks with her to get the gist of what is happening to her and she explains that since October 2007 she has been gettings nausea/and vomiting on and off but feels fine in between.  He tell us that she probably has Cyclic Vomiting , well o.k so what is that???  He perfoms
the endoscopie and this reveals absolutly nothing he went as far as the intestines, tells us to go to GP and help try to resolve.  She got so sick from
that Endoscopie I think that is why she is still not well.  Anyhow we see the GP this past week I send her what I have on Cyclic Vomiting (I must say the the website) just made so much sense to me and really for the first time I felt I was not alone, and of course you have your family and friends calling and asking how are things going which just adds stress all around.  THe Gp
sent her for a chest x ray, thyroid blood test, and an EKG, by now you all can imagine my daughter is now so anxious about this whole thing that her heart rate was high because she is almost in panic mode now.   Yes we need for her to see a psychologist and find a Doc that can understand this I just felt that her GP did let us down by not really wanting to read the research I sent her regarding this.  I am very thankfull that I found this site and feel that we are not alone in this.  This morning's email from Judy brought joy to my life with the name of the Canadian Coodinator for Canada and guess what she is here in Montreal (Yahoooooooo)  I have left a message and sent her an email I truly feel that help is just around the corner (literally)  and in my previous life I think I was an Psychic /Investigator

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Reply with quote  #60 
Your name: Robert Butler

Who is the CVSer in your family and what is their age? My wife Tina she will be 33 on 6-8-2008

Please tell us your story, and how you came to be here:

Long story…somewhat shortened … I am the Husband of a wife with CVS, gastro paresis, or whatever someone wants to call it.  She had surgery for her GERD which left her with Gastroparisis. The doctor that did the fundiplacation (stomach rap for GERD) said she just had “BAD”  food poisoning (for 2 weeks of dry heaving).  So I took her to the Head of Baylor’s Gastrology dept. @ Methodist Hospital in the Houston Medical Center.  They could not stop the Vomiting so they “reversed” the fundiplacation…this seemed to help a little but they latter said that the Vagus nerve in her stomach had been damaged and tried SEVERAL things to stop or at least help her vomiting spells until they ended up doing a gastric bypass because her “stomach had stopped working and the food was just rotting in her stomach and causing her to stay sick”.  She now has spells of vomiting that WILL NOT stop on its own she must be sadated ...if you can convince the doc on call of this. Now this has all been over a four year period…It is tearing our family apart the kids have no mother, I have no wife and My wife has no “life” to speak of!  IS THERE ANYONE IN THE HOUSTON AREA THAT CAN HELP HER?  We can not afford to fly or drive very far but if we have to, I will figure out a way to get the money. And of course then there is being treated like a “drug seeker” and “I am not a doctor” so I must be an Idiot…is a whole different story!

 

Thank you for any help you can give,

Robert Butler

  
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