Cyclic Vomiting Syndrome Message Board

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

Advice or opinions please

TeenSufferer — Wed, 04 Nov 2009 03:57:02 GMT

Hi all.

im just looking for advice really-

As many of you know im having a hard time with my CVS. But for the past few weeks there seems to be no trigger what so ever which makes it harder to get control of. For the past week however i have noticed i have been really cold and i have had a blocked nose with yellow discharge (which i was told meant the body is fighting off a infection) and i know this could be a possible trigger for my recent episodes.

Im currantly on a complete multi vitamin tablet which i thought would help me but it doesnt seem to be helping. The past two episodes have lasted for about 5 days (which is normal for me) but i would get better during the day and it would start again in the morning or the other way round (which isnt normal for me).

I started another episode last friday following the recent patton and only just got better a few hours ago (but i cant be sure it is deffinatly over).

I have been avoiding the hospital as it causes too much tension between me and my family, but now im beginning to wonder if i am not getting better because i am not getting treatment when im ill.

I have noticed when im in a cycle i get these bruises appear when there is no apparent knocks or hits in the area and when i get better the bruises seem to fade. I also get alot of muscle pain after a cycle which can take alot of time to ease.

I know the first thing you are all going to suggest is for me to consult a doctor which is why first thing in the morning i am going to make a appointment and also call through to Dr. Chong for more advice until i see him on the 30th.

Does any of these symptoms sound familiar?
Does anyone have any Advice for me?

Thank you all
Shaynie
P.S - i just want to feed myself with as much information as i can to see if i can help myself in any way.

Forum: CVSA - Main Forum

Meds

Dennis — Tue, 03 Nov 2009 22:47:36 GMT

Hi all,

Was curious to know if anyone has restarted a med that was effective at one point but seemed to lose its effectiveness.

If so did it work again and how long were you off of it.

Forum: CVSA - Adult CVS Patient Forum

Abdominal migraine? Substance dependance? HELP!

maverickbna — Tue, 03 Nov 2009 18:01:08 GMT

I'm running out of ways to cope when the vomit monster shows.

I get many symptoms of a traditional migraine, but substitute N/V and abdominal pain for the head pain. I've tried cold packs, ibuprofen, Phenergan, and I've seen both GI and neurologists. I'm running out of ideas to try!

I had an attack last week, and had to go to the ER three times. I'm starting to look like a drug seeker, and I DON'T LIKE IT!

I've developed adverse reactions to DHE, Compazine, Thorazine, Toradol and Inapsine (droperidol). When I tell them that, the ER docs face usually loses its smile, and they don't like having to prescribe me narcotics.

One thing that I've noticed that helps a lot during these episodes is Stadol nasal spray. It's a C-IV controlled substance, and many doctors won't prescribe it anymore, including my neurologist because she believes that it's causing rebound headaches. What do I tell her when it's the only thing I've found that will help?

I've just made an appointment to see a chiropractor, and am pondering seeing a chronic pain specialist.

Is there anything else I should do? The closest CVS specialist is several states away, and I can't afford to travel.

Thanks!

Forum: CVSA - Adult CVS Patient Forum

2010 Conference

Judy — Mon, 02 Nov 2009 22:24:51 GMT

Hi all,

I wanted to share a few details about the next CVSA International Family and Adult Conference.

The dates will be June 25-27, 2010, Chicago. I am still negotiating a hotel that will be best. The hotel chosen will have complimentary hotel shuttle from O'Hare airport.

For those wishing to extend their visit, you will probably not be that close to "downtown" where all the action is, however you will be connected to resources to get in the heart of the city should you desire to venture out. Please email me if you are planning an extended visit, and I'll try to provide more information.

CVSA already has commitments from most of our principal medical advisors. They will be there to share the latest information. I believe there is alot to share.

We will host the very popular "Date with a Doctor" session again, and have the child therapy room armed and ready to go. 2008 was so memorable. So many kids interacting! We'll make sure we have the same scenario. It was delight to see.

For those of you that have not attended a CVSA conference, I hope you will consider joining us this June. It is truly a memorable event.

More info will come to you as I get it. Save the date.

Warm Regards, Judy

Forum: CVSA - Main Forum

Appointment with Dr. Li

dharrison — Mon, 02 Nov 2009 18:59:05 GMT

For those who have kept up with Lily's episodes, we have good news. She has made it three weeks now without a new episode! (Refresher... Lily is 4 years old, has had CVS for about 2 years, and with daily meds has settled into an every 2-4 week pattern, requiring ER or Hospital attention 80% of the time)

In addition we had a call last Wednesday at 9pm from Dr. Li's office. They finished with Lily's referral paperwork, and wanted to see her the following Wednesday. We are packing up the car tonight (Monday) and starting our drive that way. Probably spend the night in Des Moines tonight, and then drive in the rest of the way on Tuesday so that we are ready for the 10 AM on Wednesday.

We really hope that:
1) Dr. Li can come up with a more effective strategy for increaing time between episodes, and managing an active episode.
and
2) The trip does not set off a new episode.

Thanks, Darrin.

Forum: CVSA - Main Forum

CVS and Vomiting during Pregnancy

haymanja — Mon, 02 Nov 2009 02:17:06 GMT

It is apparent that some CVS female patients have increased nausea and vomiting during pregnancy and for some, CVS first makes its appearance during pregnancy. Conversely, some patients symptoms are improved during pregnancy this seems to happen particularly in those women who experience a cycle during or immediately after menstruation. Obstetricians, at least those in Australia are largely unaware of the condition and I suspect many pregnant sufferers remain undiagnosed.

Many mothers of children with CVS report a perfectly normal pregnancy before the birth of their affected child but there are some who have experienced increased vomiting. Mothers of children with CVS may also have some symptoms even when not pregnant such as nausea during menstruation and increased susceptibility to motion sickness.

An obstetrician at the Royal Women's Hospital in Melbourne is planning a survey of all patients at that hospital who have had hyperemesis to see if any have an underlying disorder such as CVS.

I would be grateful for comments on this topic and personal experiences.

John Hayman MD

Forum: CVSA - Main Forum

Great News!

LauraKoch — Thur, 29 Oct 2009 18:21:40 GMT

As of today, the 2009 CT CVS Walk has cleared over $20,000! There are more checks expected so I will keep you informed as we reach any milestones.

It was a great day!

Laura

Forum: CVSA - Main Forum

no pain

shadrach — Wed, 28 Oct 2009 19:56:07 GMT

This time it took 23 days to bring on an episode. So far I only vomit for one day but was nausea for three days. Also this time I did not feel any pain while vomiting at least 10 times. The only thing I did different since the last time was stop eating meat (chicken, beef, and pork) I know its to early to tell if that helped or not. So here goes another number of days without meat.

Forum: CVSA - Adult CVS Patient Forum

New with a lot to ask

kodik9 — Wed, 28 Oct 2009 16:40:23 GMT

Hi everyone,

A friend of mine that knows a gastroantologist told me to check this website and it's comforting and scary to realize this is EXACTLY what I go through. First, my name is Jess and I'm 24 years old. When I was 10 months old I was diagnosed with Primary Pulmonary Hypertension. I battled that for 18 years until I had my life saving double lung transplant. Sadly, my lungs rejected a year later but I had my second double lung transplant last year! I am doing amazingly well, in the breathing department....but....for 4 years I have had unexplained episodes of vomiting and nausea.

I have had every single stomach test there is. They have found some stomach paresis but so far haven't successfully treated it or ruled it out to be the main cause of my episodes. I have had a recent gastric emptying study that showed I had some prolonged emptying. My episodes have been out of nowhere and random throughout the years. Sometimes I went a few months, last year I seemed to have a week between episodes, and recently it has seemed to be every 3 weeks.

I have read through the forums and have found things a reassuring and at the same time disheartening. I figure to make my post a little more organized I'll go through my thoughts on things and questions.

1 - The main thing I had noticed when I have my episodes that when I first went for pain they gave me dialauid and the pain went away, I stopped feeling nauseous and it stayed away! Reading what people and doctors said has given me hope that it isn't just me that thinks narcotics make it all go away and stop episodes before they get horrible!

- My problem has been that realizing this my doctors think I am drug seeking. It's so insanely frustrating. Luckily my parents are amazing and have fought for me. We have on recent episodes to let my dad give me tylenol 3 for the pain and ativan. My docs will only allow me to take * mgs of ativan a day for the nausea. I have read about people that take enough drugs to knock them out cold. I want to do that! My parents want to be able to give me that relief!

-How do I convince my doctors? The ER?

All I want when I get an episode is to sleep it out but I can't get enough drugs to allow me that luxury. My episodes last a week, my last one lasted 11 days!

2. It's nice to know I can finally stop thinking it's my diet. I never though it was. I know there are certain foods that bring on stomach aches and I stay away. I read that someone gave there daughter a lot of antineausia drugs when she got stomach aches to prevent an episode. Does that work?

- When you use pain meds and antineausia meds at the first sign of an episode how long do they usually last?

- What antineausia pills have you used? I have tried everything; zofran, compisen, phenagran, none of them make it better. I did recently try compisen sopository and it did help a little.

I think that is all my questions for now. A lot of them were answered by rereading others posts. It's nice to know it wasn't all in my head! Oh! My docs also still think I'm nuts. That I bring on these episodes because I'm so anxious. I am not! I'm a relatively calm person considering what I've been through. They put me on celexa to see if it helps. Anyone else take this or something similar? I don't think is doing anything and I have been on it half a year. I have also been to psychiatrist and I go to therapy once a week and they both agree I am not causing these attacks.

Anyway, any help from anyone would be great! I am still going to stomach docs to see if they can help. We are looking into imatrex . Also, I am seeing a doc that specializes in stomach paresis this Friday. So we can see if that brings any answers.

Thanks everyone!

~Jess

Forum: CVSA - Adult CVS Patient Forum

port

smileyface — Wed, 28 Oct 2009 04:23:37 GMT

I am at a loss. I have been to the ER four times this past month, and hospitalized twice (for two days and currently on my fourth for the second admission). I keep going back and forth whether I should get a port or not. Unfortunately, my vomiting is not controlled anymore. The preventative has ceased to work, and my abortives no longer work either...D10 fluids do seem to help though.

Can anyone offer advice? I know ports have a risk of infection but at the same time I am so sick of the hospital. D10 would keep me stable, and help with my other conditions that I suffer from daily in addition to the CVS...just don't know what to do.

Forum: CVSA - Main Forum

L-carnitine & Q10

karenpanhuyzen — Tue, 27 Oct 2009 20:28:18 GMT

Hello
I am Karen and I have a son Sammy, 10 yrs old, who has CVS for 3 yrs now.
We live in Belgium. His attacks come every 10 days +- and they last from 5 to 7 days ! He has been in the hospital for about 45 times now. As I am writing this he is again in the hospital. We tried all kinds of meds. but still we did not find the right mix for him.
I asked his doctor to try L-carnitine & Q10 as for some of the sufferers this seems to help. But he is convinced this is only used for mitochondrial CVS. Is he right ? I showed him the doses written on the website and he could not believe his eyes. He is not willing to give this to Sammy.
Is the l-carn.& Q10 to be given with other meds ore are their sufferers out there who are feeling better only with the supplements ?

When Sammy is in an attack, nothing but really nothing seems to stop the nausea and the stomach pain. We tried to give him lorazepam, ondansetron, litican, even morphine but nothing really helps. Last yr they gave him, like the guidelines of Dr Fleisher, chloorpramazine & dyphenidramine to get him to sleep. This was a good "escape" for him. But unfortunately is is not longer available in Belgium for IV !!?? Now he is getting droperidol but it seems with this his attack seems to last 2 days longer ? I don't know if this is possible ?
Thx for anyone to reply
Gr ts from Belgium

Forum: CVSA - Main Forum

H1N1 and CVS attack

seraphim_amon — Tue, 27 Oct 2009 16:57:04 GMT

I wa.nted to share a story that has been going on since the 15th. Last week I was diagnosed with H1N1. I was exposed to it when I went in to have my IV Iron infusion. I have basically been sick since then and can't shake the fever. So my doc on day 8 of this thing wants me to take Tamiflu. I refused because Tamiflu only works the first day or 2. Well the past day I thought I was getting better, my fever was down, and I got some energy back. Well in the middle of the night last night I began to get violently ill. And am now in the early stages of a CVS attack. I have masks and gloves and all the essentials thanks to my doctor, but may end up going to the ER. I am so afraid they won't take care of me. Having the H1N1 is like having the plague, if you have a mask on they may as well put a huge red X on my forehead. There is a huge outbreak in our area, and may end up waiting hours to even be seen...... Does anyone have any suggestions? I took my rescue meds but they don't seem to be working to well.....

Forum: CVSA - Adult CVS Patient Forum

Alternative therapy?

TeenSufferer — Mon, 26 Oct 2009 13:36:05 GMT

Hey all,

Well lately i have been speaking to my mum about other forms of help i could use and we come up with quite a few from - Yoga, meditation and visualization to Acupuncture, massage and breathing techniques.

I done a search on here to find out if others have tried Alternative therapy's but nothing much come up which is why I'm posting.

So my question is has anyone tryed any form of Alternative therapy and if so what have you tryed, what helped and what would you recommend?

Thanks all

Shaynie

Forum: CVSA - Main Forum