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Reply with quote  #76 
Hi my name is Tracy, I also posted in the main forum, but thought I'd post my info here too...

Thank you

Your name: Tracy

Who is the CVSer in your family and what is their age?Myself, age 31, and also my son Jereth 8 years old

Please tell us your story, and how you came to be here: I found this site, just recently, but was diagnosed with CVS in March of 2008, and my son was just diagnosed with CVS on the 16th of June 2008.

They believe I have had CVS my entire life.  When I was younger (child) I would have a bought of vomiting, then be ok.  When I got to be a teenager, I had a very hard time with over heating, passing out while it was warm.  While in my junior year, I was on a heart monitor, but besides an irregular heartbeat, they couldn't "find" anything.  I would have a hard time catching my breath after running track, but did it anyways.  After high school, things to be ok...till I started to have children.  When I was pregnant...with my first and second, I only gained about 20 pounds, because I was so sick, they said it was just morning sickness... with my second, I did start on "Plo-Gel" gel and it seemed to help, as long as I got it before the vomiting started.  With my third child, it wasn't as bad.  But at about 7 months pregnant, I had an attack, as fast as it came on, it went away.  I thought it was a heart attack, so pain full in my back and chest...but then was fine.

About 4 weeks after having my third child, I had another attack...vomiting uncontrollable, bowel problems, and so severe pain, that my husband called an ambulance.  I was taken in, and had chest x-rays, and told I was fine.  The next day, I saw my doctor and he told me that it was my gallbladder.  Within 2 weeks, my gallbladder was taken out.  After though, in recovery, I was in an extra 6 hours, because I couldn't come out of the anastectic.  Then I started having problems with always being "out of breath".  I started going to Cleveland Clinic, and then I was then diagnosed with P.O.T.S.

About a year after that, the "attacks" came back.  After visiting numerous doctors and tests...they told me "everything came back normal".  Well, I left it go...I was sure something was wrong...but how can test be "normal".  It has been 3 years...with this vomiting and attacks that happens from twice a week, to once a month, or maybe I would be lucky and go two months without an attack. 

From January to March I had about 6 episodes, in February I started seeing my doctors again...again "normal".  I had it, I wasn't going to keep doing this, so I called Cleveland Clinic, and saw Dr. Upchurch.  (Great doctor by the way) He told me based on what the other doctors hadn't found, and from my previous testing done at Cleveland (from before) that he believed I had CVS.  I take Amitriptyline daily, and have Imatrex (?) to "abort" the attacks.  Needless to say, since March and the meds, I have had the start of one attack, I got the meds in time, and aborted it. 

For about the last year, my son will have this vomiting with no other side affects.  He will vomit a few times, then be fine.  After I got diagnosed, he had a really bad one, I took him to the ER...they gave him the shot to stop the vomiting...it didn't work.  I ended up bringing him, because he wasn't dehydrated, so they couldn't "do" anything for him.  I figured it might be CVS.  I took him straight to the Cleveland Clinic...no sense of taking him to the local doctors that told me "everything is normal".  And after the doctors talked to him, did a few tests...they also told me that he has CVS.  It is not "bad" yet and we may have catched it in the early stages.  He at this point is on nothing daily, but we have Zofran, and xanax for if an attack should start. 

And this is why I am here.

In my current or ‘previous life’, I am/was a: I am a wife, mother of 3 wonderful children. I am a taxi for my children, help coach my daughters softball team, and helping with cheerleading. I am an office manager for my fathers company.

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smarquette

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Reply with quote  #77 
Hi my name is Susan and I am a sister/part time caregiver to my sister Sandra 42 years old; who is battling cvs;
I am soooo grateful for this site; because if it weren't available my sis would not have been able to find the two great doc's in her life... Dr. Fleisher and Dr. Meyers (not excluding her pcp's who have been great too)
Im here to find and perhaps give hope to those that suffer from this very stubborn syndrome. 
Im afraid for those who deal with this and have no one...to believe them, both young and older, and wish that I could do something to help...often times I feel frustrated, incapable of doing anything to help!!

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Susan Marquette
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Reply with quote  #78 

Hello,

 

My name is John my girlfriend, best friend, soul mate is Paula. Paula has been sick for a little over two years. It started in February of 06 as a kind of annoyance in that we would be in the bathroom in the morning getting ready for work and all of the sudden a bout of instant nausea would hit and she would start vomiting violently without any type of warning. This would happen once or twice a week. By June it had become chronic and was happening all of the time and would leave her with migraine type headaches.

 

Her doctors diagnosed her with so many different things from acid reflux to you name it. She has been on a hundred different medicines, I can't count the doctor and ER visits. Then I requested that she have an MRI, where they found that she had an arachnoid cyst. Her neurosurgeon said that 4% of the population has these type of cysts and they were usually asymptomatic, however because of where it was in the brain and her age (she is now 44) they thought it could be pressing against the area of the brain responsible for vomiting. So a decision was made to operate and remove the cyst. Well for about two months after the surgery she seem to feel better, although the surgery was so invasive that there is no telling how one’s body would react. Two months later her symptoms were back, the only saving grace I can see from the surgery was that her cyst has an AV malformation (pre-aneurism) that was clipped. After her symptoms came back her surgeons thought a shunt might help as they thought her CFS (Cerebral Spinal fluid) was not circulating well in the void where the cyst was removed. Well after the shunt was installed she did not feel any better and kept having severe bouts of nausea and vomiting with migraine. It was then determined that the tube for her shunt was nicked during the second surgery so a third brain surgery was performed to do a shunt revision. Now the hole in her dura from the first shunt where the new shunt tube went through would not close-up and she developed hydrocephulas (a lump on the back of her head about the size of a softball full of CFS). At this point I took her to Mayo Clinic to undo everything that had been done and try to get her back to normal. Four Brain surgeries later!!!

 

Well here we are now and we are back where we started. It has settled into a kind of pattern where she has relative wellness for a week or so and then she will have a day where she starts getting tired with some nausea and headache and burning tongue then comes about three days of ultimate suffering in vomiting and headaches. Paula’s vomiting is so bad and violent it’s hard to put into any other words than ultimate suffering. To further complicate matters when she had her surgeries her muscles on the back of her neck were effected so that when she vomits she pulls the one on the left side running up from your shoulder up your neck to the back of your head and suffers with unbelievable neck pain. Paula is so desperate for a cure, she is so miserable… Sometimes she vomits undigested food from the day before.

 

On a side note she had every type of MRI, MRA, CT, CTA, every gastric study that can be preformed. They think she might have some level of gastric paresis (slow gastric emptying), however it is almost exclusive to diabetics and she is not and it usually causes wasting and she does not have any signs of that ether. Now I find out it is somewhat common in people with CVS.

 

Also her tongue burns all the time and sometimes her feet. Had anyone else experienced this???

 

I have been reading about CVS and really believe this is the problem. I am so relieved to have found a place where people that are going through the same thing can truly relate and hopefully provide support and understanding that Paula needs so badly. So many doctors have said that there was nothing they could find and made Paula feel like she was some kind of hypochondriac. I have cleaned up enough puke, held her, and wiped her tears to know the difference. Unless anyone has seen this before you can’t understand how debilitating this thing is and how it affects all of the lives around you…

 

I sorry for rambling on like this, it’s just feels good to know she is not going to be alone with this demon anymore…

 

We really need some help, doctors that understand CVS, Advice, Whay makes "you" feel better, etc...

 

Most Respectfully,      

 

John & Paula

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Reply with quote  #79 
Hello,

My name is Anita and my husband (Michael) has had CVS for 9 years, diagnosed about a year ago. Our story is much like the others I've been reading about. I'm writing from his hospital room- he used to have episodes every 2-3 months but now only has severe enough episodes to require hospitilization every 6-9 months but they are now more severe and the pre-phase can last for months. This episode is the end of 6 weeks of him being sick nearly every day but being able to abort each time till now.

This time was unique because the triage nurse wouldn't let me in the room even though I argued, so he ended up in the Fast Track area with them expecting him to need some fluids and phenergan- that obviously wasn't the case.

It's nice to be on this forum where we are normal and people understand.

Anita
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Reply with quote  #80 

I have a friend whose husband has been having cyclic vomiting for 18 months...he went from obese to malnourished in a very short time.  The episodes continue, and often require hospitalization. He has been checked from head to toe with no answers from drs.  The strange added symptom/condition for him is lack of production of testosterone...he is creating none, so is on supplemental hormone replacement. Drs cannot find anything wrong, and he is often treated like he is crazy, which he is not.  They are struggling in every way possible, and have recently been told by yet another dr that he can't do anything for him, and to find another dr.  Does this sound like anything you have heard of?  Thanks.

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Doc

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Reply with quote  #81 

Hi, I’m Angie (Doc). I’m a 27 year old CVSer. I have had CVS for 2 ½ years now and went 1 ½ years undiagnosed. I have just recently found this website and I think it is a God send. I am a veterinarian and have a wonderful husband, 3 dogs, 1cat who are the joys of my life.  When I had my first CVS attack I was very close to my clinical year of vet school.  I continued to get sick (every month) throughout my clinical year and I knew that I simply was not getting a “virus” that often. I missed several days on rotations (which is a huge deal in clinics), and after seeing a GI specialist, I missed an entire surgery rotation to have my gallbladder removed. The attacks continued as I prepared to graduate from vet school, get married, find a job, and move. While on a two month preceptorship before graduation I was struggling with anxiety attacks during surgery and days of nausea and vomiting. After some serious soul searching I made a decision to take a government job after graduation rather than go into practice. This was extremely hard for me. I have wanted nothing more than to practice veterinary medicine since I was 3 years old, but I know that I can’t be a good doc if I am sicker than my patients. So now I am a public health veterinarian who oversees operations at a slaughter plant in deep south Texas. Not what I dreamed of my entire life, but I have to keep this insurance for now. I have been struggling to understand what has been happening to my body. I was diagnosed after moving to Texas to begin my new job. My new PCP knew of the disease because she had another patient with CVS. She gave me medication for my anxiety. The attacks continued and began to happen more frequently. I cycled monthly in the beginning, then slowed to once every 3 months, but now am cycling at least every month and sometimes more often. I have been hospitalized twice in the last 2 months. I didn’t understand anything before I found this site. Now I understand so many things from reading all of your experiences with this disease. I brought articles and treatment guidelines for my PCP, and she is very helpful and willing to treat me. My main triggers seem to be positive stress, but I feel there are many more that I don’t know about yet.  I cycle every time I visit or am visited by loved ones, or just traveling for a weekend vacation with my husband. I even got sick when I got engaged. God smiled on me however, and gave me a perfect wedding and honeymoon in Europe. I also think that certain foods trigger my cycles. When I eat out I get sick usually. My anxiety problem has skyrocketed with this disorder and I think that it is key to managing my episodes. My cycles last 5 days on average but it always takes me so long to get any energy again. Once the vomiting starts, nothing has been able to stop it so far. I am now taking Xanax, Lexapro, and Librax daily. I have Levsin to take as a rescue drug and I think I may have aborted an episode last night with it. Hopefully I will find my “cocktail” soon and can try to live again happily without fear of the dreaded puke monster. My goal is to be able to practice vet medicine just like I have always dreamed of doing. When I can do that I will have my life back again. I look forward to knowing you all as we struggle together.


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29 yr old veterinarian. Puke free for 1 year.
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Reply with quote  #82 
Hi,
My son was suffers from CVS and I just hate what it is doing to him. He was always a healthy, active, strong and fit young man who played numerous sports, this all changed when he was 15, the 4th Jan, 1999 to be exact. he first three or four episodes lasted about 3 days and consisted with non stop vomiting. We along with the Dr put it down to gastro. Six months later he broke his leg playing Rugby, we noticed over time the leg didn't appear to be healing, he ended up being in plaster for 36 weeks. During this time he had another couple of attacks, which again we put down as gastro. In September his leg was still not healed and the onslaught of vomiting began again. it went on and one, lasting two weeks. A month later he had another attack, again lasting over two weeks, this time after a week he was hospitalized. They ran every test on him that they could think of. It came on with no notice, and ended just as quickly. In November he had another attack, he was again put in hospital after 11 days, the attack this time lasted 34 days. We were gong out of our minds with worry because the hospital after numerous tests only answer to me was "We are baffled".    which didn't give me much confidence or peace of mind.
After that they became regular occurrences in his life, suffering about nine a year. Each attack lasted between 2 weeks and 38 days.  He endured bouts of vomiting, 20 - 30 an hour, for 18 hours a a day.... with this came delirium, anxiety (who could blame him), his hands, feet and face would cramp up, turn in and paralyse, thru the dehydration we were told. His weight loss was one of the most worrying things, going up to a month with no food, I was amazed that the hospital never put him on any kind of food supplement intravenously, and he was only put on a drip once. During one of the attacks he lost 43 lbs and looked like he was dying. Other symptoms were high blood pressure, the average being 198 over 157, which made us have to worry about strokes.  When he wasn't vomiting he would lay in what they call a semi conscious coma, unable to talk or able to be spoken to without it causing him stress.   Most of the time the only way you could describe how he looked was like looking like he was possessed. The delirium was scary for all the family to handle, as was his physical look. He has only abut 30 secs notice of an attack hitting... I cant believe how drastically and quickly his face changes. The healthy young man is immediately replaced by a gaunt white pallor, he always gets red rings round his eyes surrounded by dark black circles.  He has a 'Need" for water. having up to 40 baths or showers a day, it seems to be the only thing that calms him in anyway. Do other suffers experience this need, are you able to describe how your feeling when this is happening? My son doesn't remember most of his attacks, if he was sick for two weeks, he has no memory of it, if he was say in hospital for a month, he thought it was for two days, which caused us lots f stress in the beginning as he kept saying to the Dr's I was making it up. Which of course put me under the microscope to see if this was a case of mucheun houser by proxy. I could have saved them a lot of time, and they concluded that it was really happening.
After a few months and exhaustive Tests they tried the phsyc route.... testing him and the whole family for any problems that might be causing this. phsyc was ruled out after they finished with us all..... and it was confirmed that it was a "medical 'condition, and not ïn the head".   Though even after this  and a few months later when there was still no answer, they tried the phsyc route again..... I fought them hard on this, refusing them to take an easy option... and refused permission for him to be put into the physc ward.  I learnt so much about the medical world during this time..... Three years on and we still had no answers, hospital stays were a common occurrence and we still had no idea what was wrong with him.    In desperation I turned to the computer and read everything I could about vomiting, hoping and praying I could find an answer. I discovered by accident a group of medical researchers and doctors who chatted on the computer between lab stuff. They became my strength and guidance thru this. Each night I would give them the results of the days tests, they would explain it to me in lay mans terms and tell me what tests to ask the hospital for next, while they themselves were using their contacts to try and find an answer. What they told me, and taught me gave me the confidence to stand up to the Dr's and nurses who thought it was in his head. because of my seemingly grasp of medical jargon they took me more seriously and gave up trying to fob me off. I am so glad I did that because I found eventually when I discovered that at night some of the Dr's and nurses had told my son f he vomited , or asked for a drink or got into the shower or bath again he would get a point, once he got ten points he would be removed from the hospital. As you can imagine when I found this out, which took a few days as my son was not really coherent, it was a nurse who eventually told me what was happening to him when I had gone. I did something I have never done n my life..... I made a scene... I made a huge loud ugly embarrassing scene and refused to budge until the registrar came down. It took a few hours but eventually he did.... and when he found out what my son was being put thru when i was gone he was furious... he sacked one nurse and ordered that Luke be monitored more and ran more tests, which showed nothing new.  He spent 42 weeks in 18 months in hospital showing no signs of improvement. Our family life had fallen apart with all my time being spent at the hospital, where I was doing everything for him. he was basically put in a corner and forgotten about, they never checked on him, or monitored what he was throwing up. Many times he wold throw up stomach lining and f it wasn't for me they wouldn't have had a clue. Eventually I realised it would be easier for all of us if I just took him home, as there was nothing they were dong there that I couldn't do at home. Our GP was fantastic, and would come every six - 8 hours during an attack.  No drugs they gave him seemed to work. h had enough Phenegan to knock out an elephant but it seemed to make no difference. So we took him home and have been caring for him here since.  It was almost five years before one of the Doctors on-line that was helping me told me that he talked to some of his colleagues and thinks he knows what it is. he sent me to a CVS web site... I couldn't believe what I was reading, it was just what we were all living thru. I cried and cried in relief. From that information I found Dr B Li in Chicago, I rang him one night, (I am in Australia), he was wonderful and listened to what I had to say. he would not believe that considering the attacks were lasting about a month each time that the hospitals had not given him drips or tried to knock him out.  Next thing a Dr Forbes in Western Australia rang me out of the blue, he had been contacted by Dr Li about my son. He was disturbed about the lack of care Luke was getting considering how long his attacks were and what they were doing to his body... by now he had lost more then half his body weight. It was everything we could do to build him between attacks, using body building supplements etc so he had enough strength for the next attack. After speaking to Dr Forbes who is involved with a lot of CVS research here in Australia I got a call from a Dr David Moore, here in Adelaide. I had an appointment to see this guy in a years time, (the earliest I could get). He told me he was leaving that night for Chicago for a CVS conference and wanted to see Luke the next week when he got back. he diagnosed Luke with CVS, which was a huge relief to Luke and to his family. I learn't two things out of this situation...    well three actually. They are:

1.  Don't be intimidated by Dr's and nurses.... if they don't know whats wrong , then keep pushing them.... if your unhappy with whats happening or not happening, then go over their heads.... ask questions and demand answers.... even if they are "we don't know". Don't let them take the easy route and move the patient into phsyc because they don't know what to do....  The patient is not in a state to do this, so it is up to the parent or caregiver to push them into being interested.  no matter how uncomfortable it makes you.

2. Once you have a name   you get support.       For the first 4 - 5 years, well until we had a name for Luke's condition we had no support at all. I found people are strange when it comes to the unknown, especially when it involves teenagers. We got all the "It has to be drugs, you cant bury your head in the sand" etc etc.  Please don't you think when your son is sooo ill that one of the first things they are going to check on a teenager is their drug use??? Its the first thing you eliminate for goodness sake. But people even made up lies about our son to justify their fears. We found our selves plunged into a world that was full of glib remarks, like oh she must be exaggerating...  to accusations of Luke causing it himself.... or maybe I was...  it hurt us very much, especially as we were a family that had always been there for everyone. The fear that was growing inside us for my sons health was left unvoiced and screaming in my head, as no one was there. So we closed our doors to everyone and used our energy to get thru this anyway we could. It was a lonely and terrifying time for us all. I had to give up work, as nursing became almost full time. My niece was living with us at the time and in the middle of it, actually the day we bought Luke home, we were phoned to let us know her mother had died..... so I had not only Luke to look after but now a grieving child. Luke ended up back in hospital 3 hours later... the stress did it I think.   I remember wishing one day that they could find a name for what was happening to him... anything that I could tell people, so I didn't have to defend him . us constantly..and maybe get some help.  In the 42 weeks in hospital not one person came in to see him, or us. (and I have 8 brothers and sisters living close by). It was a strange experience that left me confused and bewildered.

which leads me to the third thing I learnt.
3. From my mother who was a very wise woman. I have a brother who has a very rare brain tumour that affects his piturity glands. He is now 56, My mother new something was wrong when he was 8, he wasn't growing. It took her 8 years before anyone took her seriously and he was diagnosed with crainio Phelenomia, which results in no growth hormones so he never went thru puberty. His brain is normal, he just never got an adults body, and I am convinced that as 8 of us n the family suffer migraines except for him, somehow it mutated and tuned into a tumor, and in turn that gene has mutated again and come out as CVS with my son. Anyway... I was at my mothers one day crying because i didn't understand how everyone was acting and the lack of support we were getting, while trying to deal with everything. My mother in her wise way told me the following...

human nature fears the unknown.... and when they think someone they love is in danger they have to have something to blame... if there isn't   then they will make things up, they will hypothesis to make themselves feel better. They can not accept.... we don't know"   People expect every Doctor to know everything there is to know about everything, but its not like that. We have to help them, we have to FIND the RIGHT doctor who knows what it is we have to find out. Once you find out what it is.... and their fears have something to blame then they will be there. Its not because they don't want to.. its not because they don't care.... but they are scared that something really bad might be happening.  

This made me feel a lot better... so when I retreated from everyone it was to find an answer that they could understand. I wasn't angry anymore.... I was still alone, but I understood it more.

and she was right.... once he was diagnosed with CVS and I sent people emails with a link to the site.... everything that way changed. We got letters and cards apologising for not only not being there, but for attacking us like they did. Some people came over... wanting to see for themselves I guess....and offering help. When they went to Luke's room and saw the condition he was in they couldn't take it and came out a few minutes later crying... saying we had no idea he was that bad.  Finally the attacks stopped and we found some support behind us.   It was this advise that helped us get thru it all.

Luke has tried most of the medications mentioned on here but sadly they make no difference. He builds himself up between attacks and gets most times plenty of sleep. There are things he cold change in his life style, but being a young man he hasn't faced the fact yet that this may be with him forever.  when he isn't sick, he refuses to look at it or even acknowledged he has a condition. We found he was starting to take a bit more control over his body, and though he still gets about 9 a year they are only a few days long. He has managed to overcome his need to be in water....
well he did until last week. Now after a few years break of the big attacks he is in the middle of one. He is on day seven... he hasn't eaten a thing for seven days, and everything he tries to sip is immediately vomited up. This has lead me back to the computer and for the first time looking at cvs n adults as he is now 25. What I am reading scares me to death. I was hoping , praying that he would grow out of this  but if this attack is anything to go by it  has not improved at all... in fact its worse. The shower and bath thing is back, the delirium and all the other things he has to endure.   I know I am going to have to make him see and accept that he has a problem that night not go away. but I don't want to be the on to crush his dreams, I don't want to be the one to hobble his lifestyle.... but he has to face the fact that he might have to rethink everything he does..... and adapt his life to a condition. 

and secretly I worry.... he appears so helpless when he is sick.... how will he deal wit this if we aren't here..... and how long can all of us go thru this total upheaval of normality. It leaves me feeling anxious and fearful.   

I'm sorry i seemed to have ranted.    What I need to know is if the length and what seems extreme symptoms are the norm for CVS? I don't know what the average is.

How long do others attacks last?
is there delirium?
is there paralysing cramps in the feet , hands and face?
when not vomiting is there drooling or constant hacking up?
Can you eat during a long episode?
Can you keep down liquids? and mediation for that matter?
Do you get an almost frenzied need to be in water?
can your body tell if its hot or cold.. can you feel the difference?
Do you lose lots of weight during an episode?
Can you bear talking or lights or sound?
Is there anything that makes you feel better during an attack?

I am sorry for the long rant.... I haven't slept it seems for days.... and I'm worried sick at the re-emergence of the big attack.... and I feel we are dealing with this blind.

thanks   geni_inoz

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Reply with quote  #83 
Quote:
Originally Posted by Horanimals
Your name: Jeanine

Who is the CVSer in your family and what is their age? My son Garry he is 26

Please tell us your story, and how you came to be here:  This is the short version.  Well it all started back in 1985, Garry was 3. Very early one morning he woke up vomiting his brains out!! I took him to the hosp, back then what a joke! I ended up taking him once a month for a year just for them to tell me that he had the flu. I thought to my self, self no one has the flu once a month for a year straight! So I took him up to RB&C in Cleveland. They where running all kinds of test for days, then the wonderful Dr Horowitz stepped in and told us that Garry was the 15th child in the world diagnosed with CVS (back then they just called it Cyclic Vomiting). What a trip, I remember freaked out because of the lack of information on this condition.  Doc said that he would grow out of it between the age of 12 and 14. So from the age of 4 till he was 12 we drove to Cleveland once a month for IV therapy that would take anywhere from 3 days to a week (sometimes more). The Ronald McDonald's House was wonderful!!!
Trying to go to a local hosp didn't work for us, even with letters from the Peds Dept at RB&C, the local hosps still tried running even more test,(alot of the same ones really) and giving him the same meds that didn't work in Cleveland. How do you get though to them that you just want a bed and some IV re-hydration therapy?!?!
Well Garry is now 26 and is starting to have a few of the symptoms of CVS once again. And that is why I am here now, I didn't ever think that Garry would have to go though that again. It was very hard on him. But I see that even in adult hood, he can end up once again suffering! But now there are meds for it also?? Back then they just tried beta blockers, and they didn't work. I hated putting him on them at such a young age.
Now I am wondering just how many cases of this have been diagnosed?

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jallione

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Reply with quote  #84 
MY son Eric is 23 year old son has been in and out of the ER 7-8 times including 2 hospitalizations over the past month. He has been home w/o ER for 6 days and he is on pins and needles since he still feels awful and can't seem to get over the symptoms. He is medicating with zofran, adavan, and vicodin and is afraid of the potential addictive effects since this is his longest siege in the 3.5 years since he started with CVS. The last hospitalization refused all but the very least amount of meds and insisted on a psychiatric review which probably indicated he needed therapy for anxiety. He is insistent that the anxiety comes after the attack starts, but they are pushing for psychiatric care. The only reason I can justify this is if there is a non-addictive relaxant that will help diminish the nausea which seems to be daily and if anyone has had any results with psychiatric or  pychologic help or meds. Dr. Fleisher mentioned the hope of some non-psych drugs (called anxiolytic agents) that he "looks forward to their availability". I can only pray such solutions may come forth.
I posted these notes last week on another site and wanted to put it on this site and update it. After ten days, He still had daily nausea and then went to his first day of school at the University and came back, trashed due to lots of things going wrong and ended up back at the ER. This started 3.5 years ago while he was at another University and he had to leave...so his schooling is taking forever, but he, being a highly focused student is intent to finish. He is very difficult to work with since he doesn't like the idea that the anxiety may be a causative factor which is the underlying theme to all the research. We are working on this plus getting ready to test for food sensitivities since we have noticed some relationship there, although this may be a thin hope.
I like the concept of CVS centers for care but here in Hawaii I am only aware of a few other cases and one on another island, so it is unlikely that we will warrant a treatment center unless it is part of another program like the "Ronald McDonald" house. It would be so helpful. One good thing is that the doctors and nurses are finally recognizing CVS as real and are willing to help especially IF your doctor files a care plan with the ER. This takes the diagnostic burden off them and helps them with their willingness to provide effective care. Still not perfect but better than hospitalization which has proved to be a nightmare of misunderstanding and refusal to provide adequate pain and sleeping meds.
This site encourages and depresses me. It is good to know we are not alone and that we can help each other, but it is very scary to see that there appears to be no long term solution. That is where we need to focus and support whatever research is being done. HELP US ALL...Sufferers and Caregivers.

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June

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Reply with quote  #85 
name:Hi, My name is June.

I have had this for 14 years. I went to a GI doc in 2007 that did a bunch of tests and thought it might be CVS. She gave me Phenergan and Zofran.

Who is the CVSer in your family and what is their age? Its me. I am now 52 years young.

Please tell us your story, and how you came to be here: I used to vomit on the first day of school every year until high school than I stopped and I thought I grew out of it.

This started  14 years ago when I was at a friends house for Thanksgiving. I threw up and felt better a couple of hours later. Its gotten worse over the years to where it is today.

A few years ago I discovered I had 6 intestinal infections and was treated for them. I am also gluten intolerant so it decreased my immune system. Also going to India in 1992 didn't help.

I get an attack about once a month or more. It is definitely brought on by certain foodsairy,eggs and yeast and mold containing items. Anything containing histamine like wine or aged cheeses makes me extremely sick.

 If I don't take meds the vomiting, diarrhea,palpitations and shaking goes on for 6 hours. Taking meds immediately decreases the vomiting to an hour or two.

Two Fridays ago I had an attack and am not sure what brought it on. I went to my PCP so he could see it for himself. I got a shot of Phenergan and it stopped it. (I had taken a small amount of Ativan and Phenergan).My blood pressure actually goes up as does my pulse. Normally its 110/60 or so and my pulse is around 70. At that visit it went up to 140/80 and my pulse was 114. He referred me to an allergist and GI again.

The allergist ran a urine test to rule out a tumor that produces adrenaline.I am waiting on those results.

The GI doc today was very nice, he know CVS since he did his fellowship in GI where he saw CVS patients. Since I have Zofran and Phenergan he wrote a prescription for a high dose Ativan. I am not ready for Amitriptyline yet. I don't go to the ER now though at first I did  a few times since I did not know what was wrong. I lay in bed with a bucket at my side.

In my current or ‘previous life’, I am/was a: Hospice Nurse. I am lucky that I rarely have an attack at work. THe last one caused me to call in sick, but usually it happens when I am off. I'm not sure why that happens.

I also have Irritable Bowel Syndrome and Autoimmune Hypothyroidism.

I am starting to realize this may be my diagnosis. I have researched for 14 years and have ruled everything else out. I am a little depressed about it.

Thanks for listening,
June

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June
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Reply with quote  #86 
Hi everyone! My name is Amanda and I am 28 yo. I live in the lovely town of Fishers, Indiana. I have been diagnosed with CVS and it has been almost a year now that it all started. Well, the really bad part anyway. Just in the past 2 months I have been to the ER 6 times and admitted 3 of those times. Most recent was just this past weekend, I went to ER on Saturday and just came home yesterday, Wednesday. Having CVS has really taken its toll on not only myself but my family as well. It seems everyones lives get interrupted when i have a cycle. I am married to a fantastic guy who is so supportive! he does research all the time and that is how i found this wonderful message board. I am still new to this so please be patient with me. I am a mother of a 6 year old autistic son, and my husband and I are both Computer Forensic Examiners and we own our own business. It is great that we do because with as much as I have been sick I doubt i could keep a job. anyway, i am getting off subject.
sorry.
currently the main problems I am having is the pain that comes along with this. It just doesn't seem to go away, of course i am also having my periods 2 or 3 times a month and i have endometriosis and have had cysts on my ovaries... and for me that is  a trigger. at least i have figured that out. i really get confused and worried each and every cycle. i wonder is this gonna be the really bad one? you know the one....where you are down for 2 weeks and constantly puking and trying to get rest but to no avail.
does anyone ever feel that their doctor gets tired of listening to them talk about their CVS? tired of hearing you complain and tired of you calling saying "yeah i was just in the ER again." i think my doctor is a great lady but still she seems that as this continues and gets even closer together she doesn't know what to do or say to do. but it's almost like i am a bother to her and wasting her time when there is nothing she can do. i am just wondering if i am all alone on this. CVS gets me really depressed which doesn't help at all. I am proned to depression anyway, then i sit and constantly dwell on this and it so doesnt help. but anyway, i am sorry this is so long and drawn out. thanks for reading

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Reply with quote  #87 
I'm long winded but will TRY to keep my story short - but I can't guarantee it. 

In 2000, my husband, Bob (then 38), woke up at 5:00 AM puking his guts out.  He crawled back into bed and went from cold sweats to hot flashes.  He soaked the bed so bad I was changing the sheets every time he was out of it.  He played macho and refused to go the doctor claiming he had the flu.  Anything he tried to drink came right back up - even ice chips. If he was awake, he was dry heaving.  

After 3 days of this, I took him to the Urgent Care Clinic.  After taking his vitals (temp was 92 degrees, BP was real low) they wanted to call an ambulance.  I declined and took him to the hospital myself - it was only down the road.  At the ER, they did some blood work and found his potassium level was 0.  OMG!!!!  He was admitted for tests.

He was immediately put on saline IV with potassium.  They shot him up with phenagren but it did nothing to stop the wreching.  During his stay in the hospital he had every test possible done to him and they found nothing.  After 4 days, he felt like his old self and wanted something to eat.  He wanted to go home, but they kept him one more night.

Follow up was with our GP who thought his problem was a kidney stone.  Tests were negative.  The doctor prescribed stadol for the pain if he had another attack.  He was referred to a urologist who (I cringe thinking about this) shoved a camera up into his bladder.  Nothing.   Our GP said that since nothing could be found wrong, he probably had cyclical vomiting syndrome also known as stomach migraine.  I had never heard of this before.  So it was straight to the Internet for some education.  I found that the only treatment is palliative care.

Six months later at 5:00 AM, he again woke up and started having another attack.  This time, it only took me a day to convince him to go to the ER.  They immediately started a saline IV.  Again, they tried phenagren - no help.  They knocked him out with a healthy Demerol injection.  When he woke up 6 hours later, he wanted to go home.  The puking had stopped and he was feeling a bit better (he did NOT want to be admitted again).  I took him home and within 3 hours he was back to his old self and wanted something to eat.

Six months later at 5:00 AM, it started again.  The only relieve he could get was sitting in the tub with a hot shower running over him.  He was miserable when he had to wait for more hot water.  This time I had changed GPs and took Bob to our new doctor as soon as her office opened.  I told her that he had been diagnosed with CVS.  She went straight to the computer and looked it up.  She came back to tell me that only palliative care could be given.  She immediately started saline IV and shot him up with phenagren.  Again, the CVS just laughed at the phenagren - HAHAHAHA (with evil undertones).  The doctor then perscribed a sedative (the nurse called it liquid valium) to knock him out.  They laid him down in a exam room at the back of the office.  Her office is right around the corner from where I work so I could pop in and check on him every couple of hours. 

He woke up around 4:30 PM and had to urinate.  First time after almost 3 full bags of saline.  Then he wanted to go home and eat.  I couldn't believe that we got through this one in a single day.  He said that when it's over, it's over - like a light switch being turned off.

I thought the dehydration was a result of the CVS but now believe that it is a trigger since he obviously is dehydrated at the beginning of the attack.

It went on like this every 6 months, always at 5:00 AM, for 3 years.  Same regiment each time. Our GP prescribed protonix for stomach acid and reflux. On weekends, we have an Urgent Care facility that is also aware of Bob's condition and treats him as outlined by our GP.  However, it was difficult to first convince the UC Dr. that he was not a drug addict on withdrawl.  I had dropped Bob at the front door with is puke bucket, covered with sweat and wrapped in a blanket while I parked the care.  He went inside and started saying, "Please, give me the shot.  Please, I just need the shot"  I can understand their concern - he sounded like a druggie looking for a fix.

Then the attacks stopped for 2 years.  I thought we were over it.  But no.  He started up every six months again 18 months ago.  He was due to have one in August, but didn't.  So now I'm on pins and needles wondering when the next one will come.

From what I've read here, CVS is a lot worse than what he is experiencing.  However, whatever it is, we seem to have found a course of treatment that works.  I have even had our GP write up a letter explaining his condition and how to treat it.  If we go out of town, that letter is in my purse.

Does this sound like CVS?  A form of CVS?  A co-worker has a teenage son whose been diagnosed with CVS.  His attacks always start at 11:00 PM so they have no option but the emergency room.  But they said the same thing works for him - saline IV and knock him out for 6 hours. 

I'm sorry for not being able to keep this short but appreciate any input I can receive to better understand what's going on with my precious hubby.  It hurts me so bad to see him so sick and not be able to do anything to help him.



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Reply with quote  #88 

Hello, My name is Erin and I am a caregiver for a CVS patient named Melody. She was diagnosed in 2003 after several trips to the hospital and stays that lasted 6 weeks. We live in St louis Missouri where I attend nursing school. I feel really fortunate that her episodes are few, but when we get one, wow!!! We have been episode free for almost three years up until Monday of this week. We both thought she outgrew it or learned how to control it, but obviously this is not the case. We are both devestated. This disease has ruined our lives and made both of us extremly fearful of the next episode. I do find comfort in the board just knowing that there are people out there in the world living through the same thing. I think I really would benefit from a support group in my area, so if anyone has heard of one in st louis or if there is anyone out there who wants to start one let me know

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krazyzoo

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Reply with quote  #89 
Hi! I'm Jennifer. I'm new to CVS and message boards, so I hope I'm doing this right. I never thought I would post a message on any board. When I read the messages on this board, I cried. So many of them sounded alot like me.
I'm 37, have a loving husband, 2 dogs, a parrot and 9 cats. As a child I was always told I had a nervous stomach. I became ill over 2 yrs ago with unexplainable bouts of nausea, vomiting and sometimes abdominal pain. For a year and a half I saw many specialists and ER rooms. I've been stuck, scanned and scoped so many times I've lost count. I've been accused of drug seeking, laziness and hypochondria. I also have bipolar disorder so many people already think I'm nuts. About 6 months ago a GI specialist diagnosed me with CVS. He put me on amitriptyline and Prilosec. It has helped the vomiting but not the nausea. I never realized how debilitating nausea could be. Well that is the short version.
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Geetha

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Reply with quote  #90 
Quote:
Originally Posted by Horanimals
Hi everyone!

I thought it might be nice to have a single place to share who we are, and a bit of “our story”.  Many of us know each other, and many of us don’t.  I thought this would be a good way for us to get to know each other and why we are here.

This is posted in both the main forum and in the Adult forum.  Please introduce yourselves in the adult forum if you are an adult with CVS or have an adult family member with CVS.  Post in the main forum if you have a child with CVS or a child in the family with CVS.

Click on the  “  marks in the top right corner of the following post and this will start a new message with the questions you can then answer.

Please do share.  I’m really looking forward to hearing more about you all.
I will start the ball rolling.

Thank you!!

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Geetha
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