Cyclic Vomiting Syndrome Message Board
Register Calendar Latest Topics
 
 
 


Reply
  Author   Comment   Page 2 of 36      Prev   1   2   3   4   5   Next   »


Registered:
Posts: N/A
Reply with quote  #16 

My name is Theresa.  I started having episodes 2 weeks before my 8th birthday.  My parents were going through a very bitter divorce, and I guess maybe that is what triggered it.  I am now 19 years old, have been hospitalized around 184 times, been in the emergency room maybe 30 times after they realized they could treat me and I would recover there.  It was extreamly hard for me to have this disorder because both of my parents showed no support.  Every time I got sick it was my fault and they would argue with eachother about who would take me to the hospital.  The first time I got sick I was in bed for 4 days, no food, fluids would not stay down, I couldn't swallow, nothing.  Finally my mom took me to the ER.  She was told very soon after that if she had kept me out for a day more I would not have made it.  I lost 20 pounds, I remember how skinny my wrists were, and I have a picture laying in the hospital bed white as a sheet and i looked like I had been punched in both eyes.  I wasn't diagnosed with CVS until I was around 12 and then went through MANY different meds before we finally settled on one.  Now I just have to deal with my mother telling me to get off of it, when I know it helps me.  Amytriptaline has a risk of liver disease, and she is worried about that, so I guess it is a legitimate fear.  When I was younger I was getting sick at the most 2 times every month.  Now it is maybe once or twice a year.  The only difference now is I have to find a way to get myself to the hospital because asking mom or dad is just a waste of breath.  Mom is convinced it is all in my head, and I hope there are no other parents out there that think like that.  I always told her if I wanted attention I would not do it this way, because she has NO idea what I go through.  Don't get me wrong, I love my mom more than anything in the world.  I guess she just felt hopeless not being able to fix the problem and it frustrates her to see me like that.  I had no idea up until recently that so many other people have this.  I was actually going to be sent to a hospital in Colorado to be in a study they had going, but mom didn't have the time or the money to send me there and stay with me. I am very happy, yet very sad to see that there are so many other people wh have to go through this.

0
heather

Registered:
Posts: 164
Reply with quote  #17 
My name is Heather, I'm 32, and I live in Dallas, TX.  I am single and do not have children.  In my real life, I am a sales manager for at&t mobility...a job i love, but have a hard time doing sometimes.

CVS hit me out of nowhere about a year and a half ago.  At first, I assumed it was always the "flu."  I work with lots of customers, so it stands to reason that I will pick up germs.  Eventually, I knew it wasn't.  I don't take no for an answer very easily, so I pushed until I figured something out.

One particularly awful ER visit in Dallas had me working with the rudest doctor ever.  He did, however, print out a diagnosis of CVS, and led me to this site.  I think went on a mission to find a fantastic GI, and between the knowledge I've gained from reading things on here and my GI's support, we are working to make it more tolerable.  I've made the episodes stretch much further apart, but the puke monster still lurks around.

I also have CFS/Fibromyalgia (which was diagnosed 8 years ago), blood pressure issues, and recently was in an awful car wreck which smashed 2 of my spinal discs.  So I have a few fun illnesses!    I don't find it easy to share that I have any of these illnesses with most people in my life, so this board is invaluable to me....even though i don't post a lot

__________________
"it's not just a daydream, if you decide to make it your life..."
0
mahler1987

Registered:
Posts: 3,035
Reply with quote  #18 
OK, first off my apologies for my first reply... I was fresh out of the hospital and still "stoned" outta my mind on the meds.  For those who don't know me, I'm Pattie, 44 and I used to be a nurse.

Much of my childhood I simply have no recollection of. I first remember severe vomiting episodes my freshman year of college.  With a major hangover, I went to the dining hall for a strong cup of coffee and breakfast.  I love pancakes, I started to tear into a hot stack and in my mouth discovered they were still liquid batter in the center.  I headed for the nearest trash can and spent the next hour non stop heaving.  Unfortunately this lasted the rest of the semester, lost over 40 lbs, and wasn't able to eat a thing. 

Move ahead 18 months, the middle of spring term.  I awaken each morning vomiting for 1/2 the day... oh no.. morning sickness.  Let's say pregnancy tests are pretty unreliable at this point in time.  College Health Center tells me I'm preggers. I go from a 4.0 semester to a 2.0 in a matter of weeks.
Since I have no children, I either miscarried or was never pregnant, but the stress of it all sent me into weeks of heaving

The next major episode was 2 yrs later, technically my junior year,.. I changed majors.  I returned for spring semester in mid January...by late January, same deal vomiting constantly, couldn't eat, and even passing out.
I kept getting told it was the flu, it was all in my head, or they could find nothing wrong.  This lasted till graduation weekend.  My bf at the time said I gave him the best graduation gift when that weekend we approached a Burger King and I said pull in I want a cheese burger.  We parted ways that weekend.  I think the stress of my being ill and his new found freedom, having graduated contributed to it.  But alls well, as I discovered the true love of my life a few months later.

In June of that year, I was involved in a horrific car accident with my parents.  But the vomiting did not reoccur.  In fact I went through the next 2.5 yrs doing just fine.

Fast forward to 2wks before my wedding, I catch something viral and loose my ability to talk... this progressed downward to bronchitis then pneumonia.  You got it.... puking again massively, this time its blamed on the pneumonia.  Funny thing is for the next 2 yrs, this phenomenon continues for every 3 mos to the day for a yr, then every 6 mos to the day for a yr.  Year 3... major life changes, hubby garners a new job in a new city, I return to college and finish my nursing degree, all is well for that year. 

The monster strikes again, this time I cannot go out to eat without tossing it up in the porcelain bowl.  Having frequent episodes of mysterious "gastritis, gastroenteritis... its all in your head, wimpy whiney woman's syndrome."  Hubby said no more going to nice restaurants.. it was simply like burning 2 $20 bills or in our case flushing em down the toilet.
By this time I'm about 28, been pregnant and miscarried a few times.  We discover I'm both bipolar and have lupus, so now this is the reason for the puking.. "auto immune disorders." 

Fast Forward again to about 5 or so yrs ago... what started as a literal pain in the toosh, changed my life forever.  Hemrrhoids.. yes.. they did surgery on them and totally missed the source of the pain... the rectal vaginal abscess.  2 wks later emergency surgery... now this abscess has caused a hole between the rectum and vagina.  in 2 yrs time I would have 5 more surgeries.  Ending up with an ileostomy, and a very scarred inelastic vaginal entrance.  But the next to the last surgery is what triggered my CVS again ... for it not to go away.  Immediately after surgery I started puking... puking and more puking.  The nausea was incessant.  Everyone figgures its post op stuff, or the stress of them starting the surgery when I told them the spinal hadn't worked... let me tell you thats a feeling I will never forget.  I screamed for the head of anesthesia and the Heads of the OR and the Chief of Staff... let me tell you they all came running.

I had never seen an anesthesiologist intubate and knock out someone as fast as he did me, while I was on my belly.  All the while yelling things at the anesthesiologist I had that just simply cannot be mentioned here.  I personally think it was the pain and the stress of doing surgery on an area not anesthesized  that recreated the puke monster.  For months on end I simply could not eat anything.. we changed diets, went vegan, pureed, baby food you name it we tried it.  My saving grace was that once I stopped actively puking I could hold down fluids.  Slim Fast became my best friend.  But  again I lost 30 - 40 lbs in a very short amount of time.

2.5yrs ago.... weeks before Easter  I begin yet another horrendous episode It goes on and on.  I happened to have a colo rectal appt.  My doc is also Head of ICU.  He walks in, I'm literally puking, he checks vitals, looks at my color and says to hubby, shes not going anywhere, except in a hospital bed.  What MD draws his own labs?  or adds lytes to an IV bag.  This one did... I was so outta whack I was a walking heart attack.  I was in only a few days.. long enough to reset my lytes and scope me every which way.  The sedation stopped the puking.  Home 2 days and it starts all over.  Back we go.. direct admit to the hospital, this time under GI but thru my colo rectal.  Lytes are seriously out  of whack again worse than before.  I am in the hospital over 2 wks, still no diagnosis.  A medical resident said something in passing  "cyclic vomiting"  Upon release, Good Friday.. I came home, first thing I did net search on cyclic vomiting, omg could it be.. It fits me to a "T", except I am not a child, I'm 41 yrs old.

I quickly email Dr. David Fleisher, this kindly  man responds very timely.  Yes its definitely possible that this is the source of my problems.  He graciously answers my questions and gives me a big starting point.  I joined CVSA.  In just a few short weeks, I had my diagnosis.  I returned to my former internist, and he graciously accepted me back into his care.  First appt was long, but he was patient, and accepted what I pulled off the CVSA site as well as Dr. Fleisher's emails.  I said is this what I have Vin?  On the spot I got a diagnosis of Abdominal Migraines, and its only gotten better from there.

23 yrs....and we now have a name.  As it turns out my internist has learned about CVS, now has other patients with it.  Although I still have episodes.  We can now manage them for the most part.  I was always in the ER for them.. 100% of the time.  Now we are down to 90-95% treated at home, and most aborted.  I just had my first impatient stay since my diagnosis. 

Is life rosey... not always, but having a good plan of care enables us to enjoy life with cvs, that means vacations, events, functions... truly a life.  Hence the reason for my tag line.... I may have CVS, but CVS is not me.

Pattie

__________________
I may have CVS but CVS is not me.
0


Registered:
Posts: N/A
Reply with quote  #19 
Hi Everyone!
  I'm Heidi (Gossamer). I'm a 33 year old Mom from Raleigh NC. I have a wonderful husband who, while he gets really frustrated with the CVS, is a great help and support to me. He is my rock. I have two children my daughter who is 13 and very good at it, and my son who has autism and mild brain damage. They are both blessings. I also have a great extended family that has stood by me no matter what, from watching kids to spending long hours in the ER. I am really very lucky.
  I was born a month and a half early and told that I always have had a stomach that wasnt right. I remember as a child that I would be the one who always got carsick (my mom kept towels and a change of clothes in the car at all times), got sick going out to eat, and always had really bad headaches. I also would get sick and miss all the good parties at school. I would be out of school for weeks at a time not able to hold food down. I never got to have a Valentines party until I think fifth grade because I was always sick. The doc would tell Mom that she had to be able to get a tablespoon of water in me or I would have to go to the ER. I dont remember ever going to the hospital, but I remember my parents sleeping fully dressed on the floor next to the couch where I was just in case. As I got older the vomiting lessened but the headaches didnt.
  My Mom and Grandmother would have "sick headaches".  Now I guess they are migraines. I seem to have inherited them.  I have been on 3 different meds for them and am trying a 4th. This one seems to work better. I would still have to lie down in a dark quiet room for hours though. Sometimes I would have to go to the ER for Phenergan and pain meds to knock me out. I also had severe hyperemesis gravidarum with my son that nearly killed us both. The reg OB I had said that it was all psycho-induced.
  About 2 years ago I started feeling nauseous a lot of the time. I could get through the day, but I didnt feel right. Then a year ago the nausea was so bad that I could hardly get out of bed. I started having pain too. Nothing would take the nausea away. I went to the ER with a migraine and they took care of the pain but the nausea was crippling and they wouldnt do anything about it. They told me to go home and get in my own bed and I would feel better. Ive heard that a lot.  After months of getting worse and worse I had my gallbladder taken out in emergency surgury. The doc wanted to know how I had driven myself and two kids that I was babysitting to the office.  I told him it was because I had no other choice. The surgury was supposed to make this go away, but it didnt. About 2 weeks later I was admitted into the hospital again with pancreatitis. They said it was too mild to make a difference so why was I sick?
  That is pretty much how it has been for the last year. I go to the docs, they run tests and say that nothing is wrong, its all in your head, its anxiety, depression...etc. My favorite was "I dont know what is wrong with you, but I'm sure that it isnt going to kill you.". 
  Then I found a doc that would listen and look for the uncommon ailment!  She even did tests for porphyria. I asked her about CVS and she said it fit perfectly. Now I have a diagnosis and help. I also found you guys and now I know that I am not alone or crazy!  I dont want anyone to feel this badly ever, but if it has to be, its nice not to be alone.  
Love to all,
Gossamer
Sometimes I feel I'm on top of the world and the next its falling in on me. I can get back on-Rush
0


Registered:
Posts: N/A
Reply with quote  #20 
Hi. My name is Lisa (43 yrs old) and I am in sales.

My first episode was this last May.  After that, they started coming anywhere from two weeks to a month apart.  Each episode has followed the same pattern, so I learned quickly that once the chills, sweating and weakness kick in, I'm down for the count for the next two to three days with violent and debilitating vomiting/retching, nausea, and lethargy. Then day 4 - I'm 100% fine and ready to eat!!!

I've been through all kinds of tests - including blood work, CT scan of my brain, ultrasound, gallbladder function test - nothing. Although, the GI did agree that my symptoms did not indicate that the problem is my stomach. (Which is what I kept saying to him and my PCP.)

So, like others here, I googled my symptoms and what came up time and time again was "Cyclic Vomiting Syndrome."  My PCP has never heard of it, but he did acknowledge that many GI issues are actually neurological in nature.  Since he had just put me on a new anti-depressant (I also have a neurological chronic pain issue and anxiety) he said it might possibly help.  That was the end of September - right as I was coming out of the last episode.  Think he may have been right, because I haven't had an episode since, which is the longest stretch since this all started.

I hope this stretch continues - I've missed more work just since May due to this one issue than I have missed in the last 10 years for anything else.

Anyway - reading everyone's posts  has been really helpful to me - while I wish I weren't plagued with this - at least I know I'm not alone. 

Thanks!
Lisa



0


Registered:
Posts: N/A
Reply with quote  #21 
Hi Kate -
(CVSr from Kansas).  I live in Kansas, too, (Lenexa, to be specific) and I want to thank you so much for sharing your story.  When I saw that KUMed has a CVS clinic, I about fell out of my chair.  I am definitely going to see if I can get an appointment with one of those doctors and maybe finally get a real diagnosis.

Thank you again!!!  This is a classic example of why boards like this are soooo important!!!

Hope you are having a good day.

Lisa

0


Registered:
Posts: N/A
Reply with quote  #22 
Hello,
A year and a half ago, my daughter began having bouts of vomiting.  She was very fortunate to have been diagnosed with CVS quickly, and has been on a daily regimen of anti-epileptic drugs and anti-depressants, which are helping.  Her major problem, however, is the stomach migraine that accompanies her episodes.  She has been hospitalized numerous times so that pain meds can be administered.  Currently, she is uninsured, and as a student, has no means with which to pay for these hospitalizations.  Her bills are enormous, and creditors call relentlessly.  My biggest fear is that the local hospital will refuse to treat her because of her unpaid bills.  She applied for state assistance, but at age 25, childless, and money in the bank from a student loan, she doesn't qualify.  Does anyone know if CVS has ever been classified as a disability?  If so, she might be able to qualify for SSI.

My sympathies to all who suffer from this debilitating affliction.  I've seen first hand how it disrupts otherwise normal lives.

Emily 
0
jessever

Registered:
Posts: 120
Reply with quote  #23 
There are 2 key books to look at for disability questions- Amazon has a publication that is the complete book of getting and keeping your benefits;
Nolo Press/ Berkeley has another one. You can identify the books and get them from your library. Both nail down what you have to have: CVS is not a disability category for the feds, but some aspect of  the illness may qualify. There is some thread  on this message board where they discuss  ssi or ssdi gotten using depression as the grounds, even though it was quite secondary as the health problem.
The loan is the kicker. Cant that be put in to trust or something so it doesnt hang aroud like an assett, messing up her chances?Any way to give it back and get it back?Another thought is asking for sponsored care from the hospital. Since she has no real earnings, they may look at her loan differently.

__________________
Jessica- 60,Monterey,California, diagnosed last year.
0


Registered:
Posts: N/A
Reply with quote  #24 

Hi everyone! My name is Lindsey. My husband, Jerry, is the CVSer in our family. He is 45 and has been suffering with CVS symptoms for the last 6 years. Jerry was a very high energy, thrill seeking, adrenaline junkie. He worked as a paramedic and firefighter for 17 years. Since he has had a "nervous" stomach and high anxiety most of his life, when he began vomiting, the doctors blamed it on that. Then we went into the whole "you're drug seeking...you are a addict...this is a psychiatric problem" runaround with the doctors at our local hospital since we were there every 4-6 weeks in an episode. We both knew this wasn't the case, but try to tell the doctor that!

We live in Northern Michigan. For the most part there is excellent medical care here considering our "rural" area. However, when it comes to a rare disorder that physicians are uneducated about, it leaves us to finding the research and educating the doctors. So we then go back to the "drug seeking" blame game with the doctors when we enter ER and the hospitalists group because we have educated ourselves about his illness and we know what works for him or what to try when he is having an episode. Jerry cycles about every 4-6 weeks like clockwork. He follows the pattern of CVS to a "T". He was diagnosed with CVS after every test known to man was run (several times) by our family doctor (PCP). I appreciate everything our PCP has done over the years...advocating on his behalf when he is hospitalized, looking into the research about his illness, trying different medications to help alleviate his symptoms. However, we have hit a wall here and our PCP doesn't know what else to do. Jerry is nauseous, has abdominal pain, and headaches daily now. We are at our wits end! He is so tired of being sick. He wants his life back...and so do I. I miss my husband when he is gone for so long during an episode.

I found CVSA about 8 months ago, but am just now getting time to really look around the site. It is wonderful to see that we are not alone in this battle. If there are any of you living in the Northern Michigan area, I would love to get in touch.

Oh, and in my current life, I am a Social Worker and in my husbands former life, he was a paramedic/firefighter for 17 years, then an electrical engineer...social work technician...volunteer working with the homeless...you name it he has done it. He used to be very active and involved in everything. Currently, when he is feeling "OK", he sits on the board of our local American Red Cross chapter and is their Public Information Officer (both volunteer positions since he can no longer hold a job due to CVS).

Lindsey
0
Lori

Registered:
Posts: 32
Reply with quote  #25 
Has any of you tried for SS Benefits? b If so how did you fill out the paper work? The paper work ask the same question as the first paper work but maybe in a different way. If you have any information please e-mail me.

Thanks!

Lori

__________________
Lori Roswold
0


Registered:
Posts: N/A
Reply with quote  #26 
Hi,
     My name is Valerie and I am 24 years old.  As long as I can remember I have been suffering from this syndrome.  For years, everyone who has ever known about my vomiting has always thought I was crazy, or too anxious, or that I frequently had indigestion.  It got to the point that I even thought these things too.  I found myself making excuses for why I would get sick, even if there wasn't any tangible evidence pointing to a trigger. 
     Things were really bad for me as a child.  I would wake up in the middle of the night and repeatedly get sick until I could get sick no more.  This continued well into my adolescence and it still haunts me to this day.  As recently as this week, I had my last cycle. 
     There was never any reason for why this would happen to me; it would just happen.  My father has a weak stomach and my mom battled through spastic colon during her twenties.  My family often chalked it up to bad digestion.  But I cut out bad foods and exercised regularly.  I was completely healthy except for every now and then when I would have cycles that seemed more like nightmares to me. 
     I've done everything you can think of; I've taken every test known to man, all of which come back negative.  This has only confirmed others' beliefs that 'It's all in my head'.  Over the years, I've stopped telling people; it's too embarrassing.  Everyone thought I was just crazy.   
     All this time I had now idea that what I was battling was real.  It's sad to know that others suffer through the same pain as I, but also comforting to know that I am not alone.  Now I know what is wrong with me.  It may not be curable, but it is treatable, which gives me hope.  As once was famously put by President Jefferson, "When you reach the end of the rope, tie a knot in it, and hold on".  Now I have a reason to hold on.

0


Registered:
Posts: N/A
Reply with quote  #27 

Hello everyone, I found this web site and have been on here reading for hours and hours, my name is Rhonda and my husband has what we believe is cvs. he was diagnosed with gastroperesis last year by our PCP, but a new gastro Dr in Michigan thinks its cvs, so we are going through the process of elimination. he has been suffering with this for 15 years and we are just now putting a name to it, The frustration of E.R visits trying to explain how these"episodes" work and all the hospitals and DR.'s we have been too, our children have grown up with this, when they were younger it was so scary for them, they didn't know what was going on and they didn't know what to expect and we could not answer their question, because we didn't have any answers ourselves, my heart really goes out to families that have children who suffer from this, i just cant imagine my child going through what my husband has, the vomiting and then the pain that last for days afterward, its amazing to see how many more people are out there and live though this...we have never met or heard of anyone else having anything like this till last year, my daughter met a woman that has gastroperesis. And now to see it sounds alot more like cvs. Now when we go to the E.R we will have some info we can take to show them what is going on...(thank god) I can sit here and cry when I read these threads , I could be reading our own story on here and its from people we don't even know.God bless everyone, I hope to learn more and hope and pray for a cure.

0


Registered:
Posts: N/A
Reply with quote  #28 

Hi,

This is quite a long introduction, but thought I best give you the full details.

I am 32 years old, live in the UK and was diagnosed cyclical vomiting syndrome approx 4years ago.  I have had the symptoms for nearly 7 years.

 

It all started in early 2001 when I had some kind of bug.  I started vomiting during this time and it has never stopped. 

 

During that year I visited the doctor on numerous occasions and had various tests.  In Sept 01 I ended up going to the hospital, where I was told I was pregnant and was kept in for 5 days on a drip and anti emetics.

 

During my pregnancy I was in and out of hospital for numerous stays, all the time being told the vomiting was due to pregnancy (hyper-emesis?) - even though I told them the vomiting had been going on since before my pregnancy!

 

After giving birth to my daughter in 02 the vomiting continued.  I was told this was due to hormone levels because I was breastfeeding.  When she was 6 mths old I stopped feeding my daughter myself.  I physically couldn't cope with her taking what little nutrients I was getting.

 

After many different investigations I was eventually diagnosed with CVS.  I didn't really understand what it was other than the doctor couldn't tell me how I got it or how long it would last!  I decided to do a bit of research.  After reading symptoms on the internet I am still a little unsure if I definitely have it.

 

My symptoms seem to be similar in some ways but different in others.  I vomit most days, especially after 5pm.  Other than during my pregnancy I haven't needed to be admitted to hospital but tend to just sleep when I feel really bad. 

 

I am a teacher and work part time but am finding it really difficult to cope with work and the vomiting.  I have lots of time off work, I am currently off work and have been for 2 mths. 

 

While as I said I vomit most days, I tend to get really sick around Oct/Nov.  During this time I can vomit up to about 6/7 times a day.  I sleep all night, get the kids up and ready for school then go back to bed, sleep all day, get up when the kids come home for a couple of hours, then go back to bed.  This continues for anything up to a month, but after this time it seems to take ages for me to get my strength back. 

 

I don't know from one day to the next how I am going to feel.  One day I get up, feel ok, go do a bit of shopping or visit friends/relatives, the next day I feel completely exhausted and end up spending the entire day in bed.  It is driving me mad! 

 

I have excellent support around me.  My husband is wonderful, he is extremely understanding and very patient with me.  My mum and dad are always there to help.  I just feel guilty all the time, my children (ages 14, 10 and 5) are growing up so quick and I feel I wasting all their childhood being sick and feeling sorry for myself!

 

Besides the vomiting I have other symptoms, headaches every day, tinnitus, particularly in my left ear, dizzy spells, I'm constantly tired, constipation, swollen neck/throat(doctor said this was due to constant vomiting exercising muscles in my neck!!).

 

 I have tried most of the medication mentioned on your website and the ones that have the most effect are cyclizine and ondansatron.  However, after going to the doctors on Monday I was asked if the ondansatron worked as it is very expensive.  So, because it doesn't stop the vomiting completely I'm not sure if they are going to continue prescribing it.  I also take co-codamol every day to take the edge of the headaches.

 

I think one of the most frustrating things is that people look at me and think, ok, she looks a bit pale, but how can someone vomit everyday and not be in hospital.  My GP isn't much better really, when I asked her for more information about CVS she said she didn't know much about it and hadn't had a patient with it in about 20 years.  When asked what happened to this patient she said she couldn't remember.  She has now referred me to see a hematologist as all but 1 blood test I have had in the last 4 years has shown me to be anemic.

 

I'm not sure what prompted me to write to you other than to ask for your opinion as to whether or not it does sound like I have CVS.  Also, the nearest doctor to me is Prof David Thompson, Salford.  Would it be worth trying to see him and see if there is alternative treatment/medication that I could try?  I also wondered about alternative therapies -hypnosis, herbal remedies, etc,- do you know if anyone has had any luck with them?

 

Thank you for taking the time to read this letter.

0
KRSYNENA

Registered:
Posts: 810
Reply with quote  #29 

28spud what tests have you had done??? do migraines run in your family anywhere..doesnt have to be but many do have this...it is diagnosed by ruling things out.. i sugtgest having all the requied tests done and even then we still question it. My daughter who is only 5 was diagnosed last yr and i still question"well maybe she has something more". She has every symptom to a tee of cvs but i always feel like we are still missing something. cvs is a mystery and always unpredicatable just when you think it may be gone it shows up again. when you think you have figured out the triggers...another thing pops up and it really screws with your head..good luck.. find a good supportive doc and someone who knows about cvs..


__________________
KRISTEN CARTAGENA
0
jessever

Registered:
Posts: 120
Reply with quote  #30 

Hi Spud, come on in- you sound like us.Complicated.I have had periods when i threw up all day,every day for 2or3 weeks-once i went six.
And duringthe full pregnancy, some before and after,a week

I am completely committed to my treatment cocktail at this point,becase it gives  pretty seamless releif in episode,cant imagine going bare now that ive found it. Having been married to a holistic MD, I wouldnt  suggest that you can solve this with alternative approaches. You can support your treatment, but you need to get treated, have all the tests.Do you have  an MD?

That said,
I just had four sessions of biofeedbackto down train respiration and  release painful tension in the pelvic floor, andthroughout the enteric nervous system (the gut). I am treated by a physical therapist, who is interested in learning  and working with more to technigues  than biofeedback to calm the nervous system in women who have abdominal pain chronically.As we all know, childbirth, bladder probs,sex itself causes painful tummies for women and theres growing support for  women with all these probs-,she welcomed including CVS. My PT presented my case at their meeting, if anyone wants to  try to find another one like mine.Interestingly,the stretches and  some exercises are drawn from traditional yoga,she plugs you in to teach you breath work. I would really like to find some good  buddhist chanting tapes and work  on relaxing my viscera with sound.Wouldnt stop an episode or ever make me comfortable in one, but it makes my body/mind feel better.

Welcome , keep asking questions!


__________________
Jessica- 60,Monterey,California, diagnosed last year.
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.