Cyclic Vomiting Syndrome Message Board

Medication and Clinic Assistance Programs

ginny — Fri, 20 Nov 2009 19:06:49 GMT

I just received the following links. Both have information on getting medications at reduced cost. The first includes typing in a zip code and will help locate clinics in your area from within 5 to 30 miles.

http://www.pparx.org/patient_faqs

http://www.rxassist.org/

Forum: CVSA - Main Forum

Finally got help from my doctor

seraphim_amon — Wed, 18 Nov 2009 17:08:19 GMT

HEY ALL,
i HAVE NOT BEEN ON IN A FEW WEEKS, THOUGHT i WOULD GIVE YOU AN UPDATE.
i HAVE NOT HEARD FROM SOCIAL SECURITY BUT i KNOW THE WHEELS ARE TURNING ON A DECISION FROM THE COURT.
I had 2 doctors appointments yesterday. My doctor has decided to put me on Morphine SR for my chronic pain. (finally). and he is becoming more serious about treating my CVS. My husband was there with me which makes me think all I needed to do was bring him to prove this all is happening. A while back a post was made about looking descent when you go to the doctor or ER. I now believe that. He helped me do my hair and makeup and I dressed nice. The doc was more attentive then ever.
My second appointment was with mental health at the veterans hospital. I finally broke down. I have not really been able to deal with all these changes to my body and health, until now. It is good to know I can have a solid support system for when I do fall apart. I am learning the for me to deal with CVS and chronic pain I can't avoid it.........Ther is healing in the tears I cry. I am praying for all of you...
Shari

Forum: CVSA - Adult CVS Patient Forum

What does "abort" mean???

usports2 — Wed, 18 Nov 2009 12:38:40 GMT

We are so very new to all of this...my 16 year old was diagnosed last week at the Cleveland Clinic.

He has needed to take Zofran and perscription Benedryl on Monday, Tuesday and today. He seems to abort the vomiting, but he is absolutely wiped out. I'm sure the Benedryl is playing a big role in that!

I very naively thought that "aborting" an episode meant that he would be able to carry on with his day once he took the Zofran and Benedryl; for him, aborting means not vomiting, but still having the same after-effects.

Please share with me what "aborting" means for you....I have so much to learn about all of this.

Forum: CVSA - Main Forum

Propranolol

TeenSufferer — Tue, 17 Nov 2009 03:09:56 GMT

I was just wondering if anyone experiences nausea with propranolol?

I was put on Propranolol and was fine for about the first week of doubling the dose but then it caused me to continually have nausea. I spoke to doctor Chong about this and he said to half my dose for a week and see if it helps. So i halved it and it did help but now the dose is too low to keep me well.

I dont know if i should go back up to Double the dose and hope the nausea passes within the first few weeks or stay on the dose i am on until i see doctor chong On the 30th.

has anyone else experienced this nausea and if so does it eventually pass?

P.S - this med also made it hard for me to do daily activitys without getting tired and needing to sit down. Is this normal at a high dose?

Forum: CVSA - Adult CVS Patient Forum

abdominal migraine

joraph — Mon, 16 Nov 2009 01:08:54 GMT

I am a classic abdominal migraine sufferer. I am currently on lowest dose of zoloft everyday and use levsin sl for rescue med. I am currently cycling twice monthly. Is anyone having any luck with any other protocol. I can prevent the vomit monster but the pain is still debilitating. I never use to cycle this much but due to increased stress...

Forum: CVSA - Adult CVS Patient Forum

Weight loss surgery and CVS?

macgeek — Sun, 15 Nov 2009 14:15:09 GMT

Greetings all,
My name is Jonathan, and I had weight loss surgery December 2003,
losing 250 lbs after 18 months, had lots of plastic surgeries and everything was great.. TILL . . . About 3 years ago, I started having 'food poisoning' episodes
where I would be vomiting for 12 hrs, after eating. I had maybe 3x a year, and though annoying, I recovered quickly from them (a day or two)

I was more careful about eating out. But the episodes continued, and became more frequent, I went to my bariatric (the one who did my weight loss surgery) and she had me get a ultrasound, and said I had gallstones.
and recommended that I have my gallbladder removed. I did that and the attacks continued.. now they are more frequent and I usually get "double header' (back to back attacks) with maybe a few days in between attacks.

I have been in the hospital for over 2 weeks, had every test they can throw at me, and you guessed it.. Don't have a clue.

Here are my symptoms. Do you think its CVS?

1) I eat something (doesn't matter what)
2) 30 mins into the meal, I have a 'acid' taste in my mouth
3) I start shivering, and 20-30 mins later I start to sweat
4) My sense of smell gets heightened
5) I throw up (and then feel better for 30 mins)
6) My blood pressure Shoots WAY up (240 / 160)

An attack will last 12 hours (consistently)
I vomit every 30 mins (consistently)
I know its ending when I vomit up 'green / brown bile' (sorry for being graphic)

My only relief is to stay in a tub of hot water.
I am not stressed, or anxious. I am not in any real pain
(just damn uncomfortable)
I cannot sleep, or even lie down for any period of time.

I never had anything like this before this started
no migraines, or any other pre-condition that seems to be common.

ANY IDEAS??

Jonathan

Forum: CVSA - Adult CVS Patient Forum

Any luck with showers?

visajoe1 — Sat, 14 Nov 2009 00:36:04 GMT

What I mean is, if its early enough in its stages, I've been able to stop an episode by taking a shower. Not just any shower though. I will, or have someone else, pour cups of cold water on my head as i sit in the warm water falling all over me. Waiting a minute or two between cold water. Its that 3-4 seconds of relief you get from shivering in the cold water, and basking in the warmth that pours all over you. Repeat until the reflex is gone. DO NOT DRINK WATER OR ANYTHING. I have no clue why this works, but it has for me, maybe it will save you a trip to the ER.

For some reason, this has been able to help me end several cycles, ONLY if its early enough (i.e. vomiting twice or less). This is my in house cure, and if this doesnt do it, ER HERE I COME!!!!!!!!!!!!!!!!!
Best wishes my fellow CVSers.

about me: 27 male, college grad, dealing with this for 3 years, hospitalized 4 times, handled at home countless times

Forum: CVSA - Adult CVS Patient Forum

doctor done back to square one

tlpaul — Fri, 13 Nov 2009 19:23:18 GMT

Wow, I am completely defeated today. After having done every motility test known to man at Mayo, the results were that I have extremely slow gastric emptying, and my autonomic test were slightly abnormal also I do not have GERD. So first he put me on nortryptiline and after no change he put me on remeron. After 5 weeks of no change he upped the dosage of remeron. In the past I have done propranolol, elavil and amerge. With the upped dosage of remeron I am only vomiting once when the episodes come on but now they are coming every 10 days. I know for some of you sufferers you are telling me to cry you a river so I know it could be worse but this is unusual for me. They were coming every three to four weeks before this. So I call the Dr. at Mayo and give him an update and he says he has exhausted all of what he thought would help and for me to look for a family practitioner locally. Also when I asked what exactly he was targeting in on with what he thought was wrong with me he says functional dyspepsia! When I google that I see, reflux problems, IBS, and belching. Not me.
I feel like a LOT of money was spent for tests and driving at Mayo and absolutely nothing in the end helped me. I am so deflated right now.

Forum: CVSA - Adult CVS Patient Forum

new member here; CVS in an infant?

dimkoff — Thur, 12 Nov 2009 23:47:48 GMT

Hi there! I discovered this forum just today and I'm hopeful that some experienced parents will be able to offer some guidance to my family.

My 15 month old niece has been vomiting periodically since she was about six months old. Her mother, my sister-in-law, naturally assumed that it was normal spitting-up at first, then reactions to new foods as they were slowly introduced. Only after four or five months did she realize that a pattern was forming.

Approximately once every five weeks, the baby will vomit repeatedly for 4 to 6 hours. Sometimes during this episode, her body becomes rigid and she grips her mother's body very hard, as if she is in severe pain. She is lethargic and irritable, then seems totally well the next day. Her parents have not identified any possible triggers, and in fact she consumes a less diverse diet than most one year olds because they have been afraid to try new foods.

The pediatrician was dismissive for a few months. Finally, in the past eight weeks, my niece has had a series of blood tests, x-rays, and ultrasounds to rule out gall or kidney stones. The test results have all been perfectly normal.

Though we have suspected CVS ourselves, only last week did my SIL encounter a doctor who agrees with us. The concern/confusion is mostly about the child's age. Everything we read, and every professional my SIL speaks to, tells us that CVS is very rarely diagnosed in infants. So, while my SIL now has a prescription in-hand, the gastroenterologist still wants to do additional tests.

I know that the members here cannot diagnose my niece, but I'm interested in your impressions nonetheless, and especially your personal thoughts about the treatment options given my niece's tender age. If CVS is indeed the proper diagnosis, would you consider it a mild case? Would you *personally* feel that the risks from migraine medications in such a small child are too great? Or are the side effects rare, in your experience, and minor? Any thoughts would be helpful to my SIL, I'm sure, as she tries to flesh out what is best for her daughter. Thank you.

Forum: CVSA - Main Forum

CVSA Online Auction 2009!

ginny — Thur, 12 Nov 2009 20:41:23 GMT

Thank you Monica! What a wonderful gift to all who are struggling with CVS. With the holiday season quickly approaching I hope many of us will do shop for gifts at the auction.

Ginny

The 2009 CVSA Auction opens for bidding on November 15 at 8:00 AM EST Time

Auction Host: Monica O'Malley-Tavares, MA

Register now so you ready to participate!

View Auction

Try http://www.cmarket.com if the link does not work and then scroll to the Health Care area to locate CVSA. You can also direct search using CVSA as the search term.

As I host this auction, my goal this year is to raise money to support the Cyclic Vomiting Syndrome Association in their work. They need your support! This is an exciting and fun way to help, and at the same time have a chance to win cool items!

I'll be adding new items to the catalog for you to preview as the auction date approaches. Check back often to see what's new. Feel free to place a Watch on your favorites, so that you'll know as soon as bidding begins!

Take a peek!

Monica O'Malley-Tavares
Mom to Callie, CVS sufferer since infancy Spread the word!Forward our auction link now to family and friends. They will appreciate the opportunity to bid on a variety of items, while helping CVSA in return!

Refer a Friend You can also click on the "Refer Friends" button on our auction website to give others the chance to get involved AND have your name appear in our"Top Referrers" list!
Cyclic Vomiting Syndrome Association thanks you in advance for your donations
and your participation.

Give a little and get a lot in return

How can you help?

Show your support by clicking on the "Donate Items" button on our auction web site
to contribute to our auction catalog. Even 1 item contributed now will be an invaluable
part of our fundraising efforts. New items will be added throughout the auction
run. Check the auction frequently so you don't miss out on great new items.

Forum: CVSA - Adult CVS Patient Forum

CVSA Online Auction 2009!

ginny — Thur, 12 Nov 2009 20:39:50 GMT

Thank you Monica! What a wonderful gift to all who are struggling with CVS. With the holiday season quickly approaching I hope many of us will do our gift shopping at the auction.

Ginny

The 2009 CVSA Auction opens for bidding on November 15 at 8:00 AM EST Time

Auction Host: Monica O'Malley-Tavares, MA

Register now so you ready to participate!

View Auction

Spread the word!

Forward our auction link now to family and friends. They will appreciate the

opportunity to bid on a variety of items, while helping CVSA in return!

Refer a Friend

You can also click on the "Refer Friends" button on our auction web site to give others
the chance to get involved AND have your name appear in our "Top Referrers" list!
Cyclic Vomiting Syndrome Association thanks you in advance for your donations
and your participation.

Refer a Friend

Give a little and get a lot in return

Donate an Item

Forum: CVSA - Main Forum

Flu

trice — Thur, 12 Nov 2009 02:08:53 GMT

Has anyone here had the flu? If so, how was it relating to your CVS? I had the flu a month ago but I'm still dealing with the after effects of it especially with the CVS.

Forum: CVSA - Main Forum

Gastric Pacemaker a help for Adult CVS?

rmore — Wed, 11 Nov 2009 18:24:31 GMT

My son is 32 yrs. old and has suffered with CVS for over 11 years. We live in Lynchburg, VA and his local doctor is suggesting that he has a Gastric Pacemaker surgery for this illness. Can you offer information for us because I cannot find anything on this helping his CVS situation and can you help us find a CVS doctor near our home?

Forum: CVSA - Adult CVS Patient Forum

No Insurance

ltice01 — Fri, 06 Nov 2009 05:27:44 GMT

very frustrated here, ive been struggling with this illness for over 5 years, but was just diagnosed today, and because i turned 21 i also lost my insurance. So now when i finally have a gastroenterologist and a diagnoses i cant even go back and see them because its not covered.

Forum: CVSA - Adult CVS Patient Forum

cyproheptadine (antihistamine)

tlpaul — Thur, 05 Nov 2009 21:18:15 GMT

I was curious about the thread appointment with Dr. Li. In the thread it states that cyproheptadine was added to their drug therapy along with amytriptiline. Cyproheptadine is considered an antihistamine, so I am wondering what it is about that drug that Dr. Li feels it would be beneficial. Is anyone else using this drug or some other antihistamine?

Forum: CVSA - Main Forum