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Below are the 20 most recent journal entries recorded in for those with cyclical vomiting syndrome's LiveJournal:

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Saturday, July 26th, 2008
2:10 am
[fireincarnation]
Today
I threw up dinner.
In spite of two differant no-throw-up medicines.
I ate just after four pm.
Up came dinner, AT TWO AM!
WTF is dinner doing anywhere near my stomach TEN HOURS LATER???


Damn Gastroparesis.
Wednesday, January 17th, 2007
7:16 pm
[merlyn4401]
Does anyone still read this community?
My 3 year old son has just been diagnosed with CVS. I have lots of questions, etc. Anyone still around?
Thursday, August 11th, 2005
10:44 am
[dirtyh0]
it's really starting to piss me off.

what good is a CVS website without a list of doctors who can help?

how much longer do I have to wait for that last to be put back on the website?

anyone got a copy from the old site?
Tuesday, July 26th, 2005
1:59 am
[forgottenlove]
credited to the cvsa website
This was posted before But now with all the new folks i thought i'd post it again



I am CVS
Most likely you don't know me, unless you are one of hundreds and maybe thousands that suffer everyday because of me.
I affect thousands not only the ones I attack But the ones that are the Caregivers, i disrupt life, I destroy social lives, i don't kill, i do something much worse.
I make people vomit uncontrollably for hours and even days, leaving people gasping for air between vomiting.
I hide in the darkness, attacking in the early morning hours.
You can't find me, no test can find me, and only my past tells you who I am.
I don't care who i attack; i attack infants, children, and adults.
I tear apart families; I control people’s lives, many times to the point where they have to be taken to the hospital.
I disrupt children’s schooling, i can last for hours or days and sometimes weeks at a time, i put people through cycles maybe once a year, maybe 4 times a year, sometimes once a month even to the point of 2 or 3 times a week.
Doctors don't know me, but I have been around since the late 1800's
i am called rare, But people find out about me daily.
I’ am normally not found for 4 or 5 years and its not uncommon for a person i attack not to find out who i am for 10 or 15 years.
I am Evil, for i don't kill but torture people for years on end.
I may leave for a while, but i normally find my way back to you.
You most likely don't know me, but chances are you know someone i attack
I cost thousands of dollars in medical care and testing every year.
The people i control fear me, they know that in the darkness i will come again.
I am an invisible disorder that is a disability just as much as the visible disabilities.
Maybe you do know me, I am Cyclic Vomiting Syndrome or CVS.
I don’t kill i do worse, I may stay with you the rest of your life.



Heave hoooooo

Smoke
Thursday, July 21st, 2005
2:25 pm
[dirtyh0]
Friday, June 24th, 2005
8:08 am
[happyphantom420]
Ugh.
Today has been a bad day. I woke up at 6 in the morning, because I was so nauseous, I had to run to the bathroom. But of course, I didn't throw up.. I never throw up. This nausea is killing me. I just want to fill myself full of gravol, and go sleep for the rest of the day.
Usually I can keep this under control, with smoking weed, and drinking lots of water, getting plenty of rest and all that other blah blah blah. But dear god today I feel like shit. Ughhh.
Damn you nausea!!!!!

//end complaining.

Current Mood: nauseated
Sunday, June 19th, 2005
6:02 pm
[funkeejunkee]
OMG!! *tackles*
... I am so uber happy I have found this community!

(A little about me ...)

I'm Lis, 24. I was diagnosed with Irritable Bowel Syndrome back in January 2004 - basically, my digestive system is fucked up. So over 2004, I basically did a lot of research to find out what I can/can't tolerate. But even since I was diagnosed, I have had these cycle of severe nausea where first I feel fine, then I'm slightly nauseated ... at this point, I'm fighting it because I don't want to miss a shift at work. The nausea gets worse and worse until the point where I say, "Fuck, I NEED TO VOMIT." ... then I end up vomiting for hours on end for a couple of days. Even to the point where ... even if my stomach is empty, I dry heave. Then I spend a week recovering and basically only having water/apple juice and soda crackers then slowly eating other things. Then I'm fine, and the cycle starts again.

I never really thought too much about it, until it got to the point where I ended up on the floor at work. It was the last 1/2 hour of my shift, and luckily I was working with another girl (since I work at nights in a hotel, I'm usually on the floor by myself and a supervisor in the office). We were doing the last things we needed to do and I was fighting my nausea all day. Suddenly, on the 4th floor of doing rounds of VIPs, I took off to the staff change rooms and began vomiting. I passed out on the floor in the stall, and Sabrina (the other girl working with me) woke me up and asked me if I was okay. I got up, and signed out - it was the end of my shift. I got into the van that my boyfriend was driving and said, "Pete, drive home as FAST as you can unless you want me vomiting in your van again." ... hahaha, never seen him drive so fast. Anyways. Got home, spent the rest of the night vomiting ... then other than feeling EXTREMLY week and listless, I was feeling better and forced myself to go to work ... since it seems that my two bosses tend to discriminate against me because of my health problems.

I was never "officially" diagnosed, but after the incident at work, I decided to do a little reasearch on nausea/vomiting with no known cause. That's where I found Cyclic Vomiting Syndrome. I also have been diagnosed (besides IBS), Panic Disorder/Anxiety Disorder, Severe Clinical Depression, and Menstrual Migraines. Do you guys have any of these problems as well? Have any of you guys been diagnosed by your doc or was it a self-diagnosis?

Coping with this plus my other health problems is putting stress on my life, but I am UBER glad to have found some other people that are going through this too :)

Wednesday, June 8th, 2005
11:42 am
[dirtyh0]
Friday, May 13th, 2005
8:41 am
[happyphantom420]
Hi, I'm not sure if this is the right place for me, but ever since I was a kid, I have experienced chronic nausea, I usually don't throw up, I just feel really sick.
The nausea is much worse in the mornings, but it usually lasts all day. Right now I am taking gravol (the non-drowsy kind, made of ginger root extract) every day to combat the nausea, but it doesn't seem to be working for me. Is there anything you guys can recommend to help with this "morning sickness"?

Any help is appreciated,

Happyphantom

Current Mood: nauseated
Friday, April 22nd, 2005
3:36 pm
[forgottenlove]
The new CVS "Hope Starts Here" bands are now in.........
Image hosted by Photobucket.com

"Hope starts here CVSA" silicone awareness wristbands
$5.00
Shipping included in above price

http://www.cvsaonline.org/MARKET.htm
Sunday, April 10th, 2005
3:48 pm
[xscream467]
How is the CoQ10 working?
Tuesday, March 15th, 2005
10:53 am
[xscream467]
So after 10 years of being called crazy, a hypocondriacte, bulimic, depressed, anxious and that i had a nervous stomach, i was dignosed with CVS. Last Monday i went in to get an upper GI done, where you drink this stuff that is like a mix of snot and chalk and get xrays taken of your tummy. Well the stuff was so thick that i couldn't keep it down and i threw it all up. The whole reason for going in was because i have stopped responding to my medications and this new doctor of mine (my old one moved to Utah) has decided that there is no such thing as cyclic vomiting syndrome and since my test came back normal i am once again an insane bulimic with a nervous stomach and depression. And none of that is true.

What did you guys go through before getting dignosed? What other dignosises where thrown out at you?

P.S. i have an appointment with yet another doctor on the 23rd, because this guy obviously doesn't know what he is talking about.
Friday, March 11th, 2005
4:24 pm
[forgottenlove]
Alcohol
Despite the fact that drinking doesnt exactly help my episodes.... I still do it anyway, when I'm feeling good atleast. Does anyone NOT?? drink?
Thursday, March 3rd, 2005
6:46 pm
[forgottenlove]
CoQ10 and L-Carnitine
Dr. Boles, as well as some other researchers, have theorized that CVS episodes may be triggered at the cellular level. Each cell in the human body contains mitochondria, which are responsible for creating energy for the cells. Sometimes, for a variety of reasons, the mitochondria do not function correctly (mitochondrial dysfunction), or as efficiently as they should, which can be a problem when the person encounters something that increases their need for energy. For example, allergies, exposure to temperature extremes, illness, menstrual cycle, etc. increase our need for energy; however, according to this theory, when our energy need exceeds our ability to create more energy a CVS episode can be triggered.

There have also been some studies that were recently published, both in the U.S. and in Europe, about migraine headaches and their possible relationship to mitochondrial dysfunction. The November issues of Prevention and Women's Day magazines have brief summaries of these studies.

In the above mentioned migraine studies, the researchers used coQ10 (a coenzyme) to treat migraine headaches, and both studies reported roughly similar results -- about a 50% reduction in the frequency and intensity of migraine headaches among study participants. There is another study that that was posted on the board by jjr770 that was one in which L-carnitine (an amino acid) was used to treat CVS patients. The researchers reported that there was an increase in the avg. amount of time between CVS episodes among study participants from a little more than once a month to a little more than once a year.

The migraine studies were done with just regular migraine patients -- didn't say that they screened anyone for mito problems -- they just say that current thought in migraine research is that migraines may be triggered by the energy imbalance...the way I look at it (and this is just my interpretation) is that two people can buy the same car and use the same gas, but one may burn fuel more efficiently than the other -- the one that is less efficient doesn't have anything wrong with it, it is just less efficient...While the theory would definately apply to people with diagnosed mito disorders, the theory seems to apply to simple mito inefficiency too. I have a past history of migraines, but I have never tested positive for a mitochondrial disorder.

CoQ10 & L-carnitine are the supplements that we have been discussing on the board for the past couple of months. The L-carnitine assists fatty acids to enter the mitochondria for fuel (energy) production, and the coQ10 aides in the energy creation and increases mitochondrial efficiency. If the mitochondrial theories are correct, these supplements may reduce symptoms and/or frequency of attacks by assisting your body to meet its energy needs. It is also important to note that it would still be important to try to avoid potential stressors that place an increased demand for energy on your body. Additionally, researchers, such as Dr. Boles, have discussed the importance of frequent snacking (using high complex carbohydrate snacks that are low in fat and protein) to help to maintain a steady energy level.

A number of us have been trying these supplements under the direction of our doctors, and the results thus far seem to be positive; however, I can only speak to my personal experience. I continue to take Elavil (which by itself did not control my CVS attacks), to follow the dietary recommendations, and to take the supplements daily. I normally cycle every 6-8 days; however, since I started the supplements a couple of months ago, I increase my supplement doses on days when I see signs of trouble brewing, and I am now 10 1/2 weeks attack free.

--------------------------------------------------------------------------------------------------------------------------------


CoQ10 Information

CoQ10 is a coenzyme and is believed to be one of the most powerful antioxidants available. It is currently being studied and/or used for a number of conditions including, for example, neurological disorders (such as migraines and Parkinson’s Disease), heart conditions, and hypoglycemia. It is used by the mitochondria in cells to increase energy output. CoQ10 is available in a number of different forms. Here is the information that we have been discussing:

1. All of the resources that I have found agree that the liquid geltabs are much more absorbable than the regular tabs.

2. There is HUGE variance in the purity of CoQ10 and the sources from which it is derived...there are a couple of things to consider: Synthetic or Natural...and Source

a. Synthetic or Natural -- natural is better than synthetic and just because it says it is
from Japan doesn't necessarily mean that it isn't synthetic

b. Most synthetic forms of coQ10 are derived from tobacco (yuck!!!)

3. There are a number of liquids that CoQ10 can be suspended in to put in gel cap form. vitamin E is the most common of those liquids, and the number one source in the U.S. for vitamin E is soy – so even if the label doesn’t say soy, it can still have soy in it. The soy is not a problem unless a person is sensitive to it – I am sensitive to soy.

Here is the bottom line:

I found a few brands that are liquid gelcaps that are absolutely soy free...most of them did not disclose whether their coQ10 is natural or synthetic...

The CoQ10 that I decided to use is:

Brand: Healthy Origins coQ10, * mg gel tabs

-Their coQ10 is natural, comes from Japan, and all information about sources is disclosed
-Their geltabs have * mg so that they will maintain their potency over the course of their shelf-life
-They do not contain vit. E...instead their ingredients are as follows: Olive oil, gelatin, glycerine, purified water, natural beeswax
-No sugar, salt, yeast, wheat, gluten, dairy, soy, preservatives, etc.

Their website has information about their CoQ10 that http://www.healthyorigins.com/ you may find to be interesting. I will post another thread about Healthy Origins coQ10 discounts that they are offering to CVS patients for the month of March.


(all of the above info. can be foun on the CVSA message board.)
11:42 am
[dirtyh0]
has anyone found any evidence that pain killers can curb the pukeys?

i threw out my back a couple week ago and have been on vicodin and darvocets and such since it started... and i haven't been nauseous except for once. i've even had some triggers show themselves (stress, morning work, allergies) and they just came and went as if i was a normal person.

i'm wondering if there's a chemical reaction i'm not aware of, or if maybe the generally laid-back disposition these pills put me and my body into is keeping the barf at bay? i don't want to become Rush Limbaugh or anything with these pills, but i'm curious if there's been research done on it, maybe i can take smaller doses or something every day?

any experience with this/reading done on this?
Wednesday, March 2nd, 2005
11:43 pm
[forgottenlove]
Something thats working
My Doctor has upped my Nexium to 40 mg a day and 2 mg of Xanax a day. My episodes have almost stopped completely. He's starting me on the CoQ10 suplements next week.... anyone else having any success with medications?
7:41 pm
[xscream467]
wow, i have been searching on LJ for a long time trying to find somthing on CVS and finally did. I have had it for 10 years, since i was 7, but only was recently dignosed 3 years ago. I am currently on homebound schooling because my episodes are so severe and close together. I agree with the others on here, marijuana seems to be the only thing that helps me, im not nauseated at all after smoking and i can eat. My friends think that i am exagerating when i saw i can't hang out or go to school because i throw up all the time so it will be nice to know that there are others out there like me.
Tuesday, February 8th, 2005
11:12 pm
[forgottenlove]
another theory
It has been theorized that CVS attacks often occur in the early hours of the morning (i.e., between 2:00 a.m. and 6:00 a.m.) because this is when serotonin levels are low. Tricyclic antidepressants such as Elavil help boost serotonin levels.
Monday, February 7th, 2005
2:27 pm
[dirtyh0]
i hate when we run out of pot. my tummy's all crazy, and i've got very little around here to help it.

it also makes me wonder what i'll do if i ever decide to have a child. i mean, at some point, it will get very difficult to find this drug, and i'll have to learn to live without it completely. i'll have to give it up before ever trying to get pregnant, if not sooner. then what? prescription medication, i suppose. i'm not a fan of pharmecueticals, and i can't imagine many of them being okay with growing a human inside you.

anyhow, im oogy and woosy and nauseous. that's just how it is today. not happy about it.
Thursday, January 27th, 2005
10:03 pm
[forgottenlove]
mitochondrial theory
Dr. Boles, as well as some other researchers, have theorized that that CVS episodes may be triggered at the cellular level. Each cell in the human body contains mitochondria, which are responsible for creating energy for the cells. Sometimes, for a variety of reasons, the mitochondria do not function correctly (mitochondrial dysfunction), or as efficiently as they should, which can be a problem when the person encounters something that increases their need for energy. For example, allergies, exposure to temperature extremes, illness, menstrual cycle, etc. increase our need for energy; however, according to this theory, when our energy need exceeds our ability to create more energy, a CVS episode can be triggered.

There have also been some studies that were recently published, both in the U.S. and in Europe, about migraine headaches and their possible relationship to mitochondrial dysfunction. The November issues of Prevention and Women's Day magazines have brief summaries of these studies.

In the above mentioned migraine studies, the researchers used coQ10 (a coenzyme) to treat migraine headaches, and both studies reported roughly similar results -- about a 50% reduction in the frequency and intensity of migraine headaches among study participants. There is another study that was posted, in which L-carnitine (an amino acid) was used to treat CVS patients. The researchers reported that there was an increase in the avg. amount of time between CVS episodes among study participants from a little more than once a month to a little more than once a year.
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