Cyclical Vomiting Syndrome

Cool Runnings

Hey ,

This is my first post. I am just wondering is their anybody else out their that suffers from Cyclical Vomiting syndrome in particular people in their early 20's , the effect on your life- good/bad, education, jobs , family life.I am wondering about personal triggers, mine is infection and also whether you have any other illnesses / diseases/ syndromes along with CVS.

Cyclical vomiting syndrome is usually associated with childhood unfortunately I developed CVS mid teens. Life has been pretty good, I have spent about 35 weeks in hospital in the last five years. Usually cycle every 7-8 weeks. Im taking a range of medications, dont think I can post their names here.

I'm not looking for any advise I would just be interested in hearing other peoples experiences. I have one of the best consultants in the country so I know a lot about this but would like to hear from other sufferers.

C>R

cynder

I thought that was linked with early onset of diabetes type 1.


Best of luck with it.

Cool Runnings

Thanks for the reply. My consultant hasn't said anything about a link to diabetes , he spoke more about oesophageal and intestinal problems!!!
Ill ask him when I go to my appointment next week.

Any one else have any other thoughts on it!

littlecbear

Hey there

I am delighted to find someone in Ireland who has the same condition as me. I am in my late twenties and I was diagnosed with CVS when I was about 11, although I have suffered from it since I was about 5. My case is not as severe as many, growing up I had cycles every 6-12months which lasted about 24-36hours and were very intense. In my mid teens I was finally given a drug which worked, this stops me vomiting as long as I take it before it was started.

In my adult life I manage my condition mainly using homeopathic remedies as soon as the first signs of nausea hits, and it usually works for me. I have only vomited 3 times in the last 6 years. Two of these times I was hospitalised. The last time was last September. It was an awful experience as the hospital staff refused to give me the correct medication for 12 hours and wouldnt believe me about my CVS. It made me so angry.

I think the biggest way it has affected my life is creating fear. I get worried that if i drink too much I will be sick (and thus I only ever have one or two drinks) I get nervous on holidays a lot in case I will have to be hospitalised, even in resturants i sometimes get panicky. So it definitely affects my social life.

I dont know what triggers it for me. I wish I did. I certainly have panic attack like symptoms as soon as the nausea begins so I am currently trying to address that so that I might be better prepared. I am interested that yours is infection..?

As for other illnesses, I suffer from migraines, which is pretty common in CVS cases.

Cool Runnings

heya , Good to see another adult with this illness.

Yes mine is infection based and having a dodge immune system when it comes to flus and most infections - infections of all sorts compromises it for me. I also found the annual flu jab really triggered me .

I developed rectus abdominus syndrome as a result of the repeated episodes of vomiting and have had numerous injections including steroids , botoxs and pain killers into my stomach .
Some things I noticed while in A&E , hospitals etc was the complete lack of awareness of CVS. I was three years before been diagnosed, in fact their was talk about removing my gallbladder, appendix etc as they thought these where the issue.A nurse suggested if I went running my CVS would disappear(it does not work) , one doctor suggesting it was psychosomatic which was deeply distressing for me. Also had numerous tests for tropical diseases as I had been abroad 4 months before my first episode.
I had an nasal gastric tube for awhile , when I ran out of IV space they decided to go with sub cutaneous fluids for some time .

I have not had an episode since 2010 , as a result of meds , diet and lifestyle change . I thought this would never leave me but I am now episode and medication free the majority of the time . (fingers crossed as I only stopped my meds 7 weeks ago) I did not suffer from migraine although I know CVS is a form of abdominal migraine .

I could talk about CVS all day but I'll spare you the rants about hospital , medications etc

LegacyUser

Hi just wondering if any one can give me some advise my thirteen year old daughter has been diganoised with CVS today after four years of repeated vomiting, she even had her appendixs removed in september this year. I am very worried how this will affect her in her life. How it will affect her education, she is going to doing exams next year and I worry how the stress will affect the CVS. Are there any others mothers with children suffering with this out there.
If so I would love to hear from you.

Thanks

LegacyUser

I forgot my password - oops so have to respond this way !
I cannot answer as a parent here but can answer from the side of someone diagnosed mid teens , symptoms appeared just after junior certificate and a trip abroad . Was diagnosed leaving cert year or maybe 1st year college.
Stress can be a factor in CVS although I found that infection was a bigger issue .Stress coping mechanisms are amazing and can be self thought or through therapy etc. I did these for finals maybe LC and university , airplanes ( stresses me greatly) and they also became a part of my every day life . If your daughters episodes are stress based ( exams over 2 years ? , taking 6 subjects for junior certificate ? ) . Its easy to say that CVS can wreck your life but actually control is key . You and your daughter will find the coping strategies to minimize episodes , control non symptomatic times , medication etc to not let it ruin your life .
Its a very rough , rocky and sometimes rubbish road but its not all doom and gloom . I hope your wee kid is alright . Shout if you have any questions that you need answered :-) Not claiming to be an expert but heck I have had this syndrome for years now so know a thing or two

acecdc

Hi all.

My daughter has had CVs for over 10 years now. She has a cycle of minimum seven days vomiting at a time. Being hospitalised every time. It has been a nightmare at times I must admit. But the plus side of cvs is that in between episodes she is completely healthy. Infections can often lead to an onset of vomiting also if she is stressed or very tired. I think having proper sleep is very important.
It can be a very distressing illness as much of the medical profession still don't seem to understand it or have never heard of it. But it is definately getting more attention over the last few year which is a good thing. Hopefully they will find something soon to put a stop to it or prevent it altogether.

MissyA

Hi,

This is my 1st time ever using this, I came accross it when I googled cyclic vomiting syndrome. My neice who is now 13 has had cvs now for almost 4 yrs now. But in the last year it has been so severe she has she has been hospitalized on numerous occasions. Her confirmation was yesterday and she even missed that, she had 2 be confirmed in her pjs by the bishop in the little back room of the chapel. She is now having a episode at least every 2 weeks sometimes lasting for up to five days. It has reached the point were we are all at our wits end with worry, annoyance & anger as to why there is so little awareness & lack of information on cvs in Ireland. This disease can tear families apart if your not a strong person. My niece has missed so much school that we now do not know if she is fit for big school. This is the most important year of her life and she has been sick for at least 40% of it, she had her confirmation, entrance exams, & her mum and dad are due to be married on the 14th July and we are now all dreading it she is mini bridesmaid & we just don't know if she is going to be fit to even make the wedding herself. I feel so sorry for her, as she is just a child and she is missing the most important years of her life & its the not knowing whether this is ever going to go away is the scariest....We have tried everything faith healers, fortune tellers, even thinking of a hypnotist but nothing has worked so far. We have also done all sorts of scopes & we are now waiting on a MRI scan to see if it can detect anything. I would love to hear from other people who are suffering from this horrible disease or that know anyone that has suffered from it. Thank you

gragirl

littlecbear wrote: »

Hey there

I am delighted to find someone in Ireland who has the same condition as me. I am in my late twenties and I was diagnosed with CVS when I was about 11, although I have suffered from it since I was about 5. My case is not as severe as many, growing up I had cycles every 6-12months which lasted about 24-36hours and were very intense. In my mid teens I was finally given a drug which worked, this stops me vomiting as long as I take it before it was started.

In my adult life I manage my condition mainly using homeopathic remedies as soon as the first signs of nausea hits, and it usually works for me. I have only vomited 3 times in the last 6 years. Two of these times I was hospitalised. The last time was last September. It was an awful experience as the hospital staff refused to give me the correct medication for 12 hours and wouldnt believe me about my CVS. It made me so angry.

I think the biggest way it has affected my life is creating fear. I get worried that if i drink too much I will be sick (and thus I only ever have one or two drinks) I get nervous on holidays a lot in case I will have to be hospitalised, even in resturants i sometimes get panicky. So it definitely affects my social life.

I dont know what triggers it for me. I wish I did. I certainly have panic attack like symptoms as soon as the nausea begins so I am currently trying to address that so that I might be better prepared. I am interested that yours is infection..?

As for other illnesses, I suffer from migraines, which is pretty common in CVS cases.

Hi littlecbear,
I've just been diagnosed with CVS - though still being asked for a CT scan. Anyway I'm hesitating about the medication. Long term meds do not sound ideal. I seem to be cycling about once a month though the intensity is varying. I used homeopathy before so am really interested in what you are using to manage your CVS? Grateful for any updates.
Thanks.

LegacyUser

I use a combination of periactin , zofran , stemetil IM and PO and zoton between and during episodes . I was hospitalized 3 weeks ago after a long time well so only re-acclimatizing to medication again now .

I have went through trial and error with medication including 3 months on each of the following propranadol , Gabapentin , amitriptyline and steroid/antibiotics . I have also used homeopathic and natural treatments .

Munstermad

My 12 year old daughter suffers migraines and had developed chronic daily migraines, with vomiting. Since April this year shes been to school 6 days and hospitalised 3 times. There was mention initially of cyclical vomiting, but that's not been mentioned since.. her condition is hell for her, as am sure all yours are for ye.. I just wanted to say I think ye and those family members mentioned who suffer from cv are amazing, and I hope ye find a way of managing your conditions.. My thoughts and prayers are with ye..MM

emnc

c.m.hartmoloney wrote: »

Hi just wondering if any one can give me some advise my thirteen year old daughter has been diganoised with CVS today after four years of repeated vomiting, she even had her appendixs removed in september this year. I am very worried how this will affect her in her life. How it will affect her education, she is going to doing exams next year and I worry how the stress will affect the CVS. Are there any others mothers with children suffering with this out there.
If so I would love to hear from you.

Thanks

Hi, Im new to the forum. My 13 yr old son was also diagnosed with CVS last september after 5 days in hospital and many earlier episodes that year. He too has missed over 10days from school since last sep. Hes had 3 episodes since, we had been advised to take zofran at the onset of nausea and cyclizine every 6hrs after yet the vomiting didnt stop. So we were referred to Crumlin where they do appear to know more about this, yet it is rare. Hes now starting on a daily antimigraine drug called sanomigran, Im wondering if anyone else has tried this, has it worked? were there any side-effects? We cant seem to source a trigger except onset of Puberty, This condition is written so much about on American sites but theres little discussion in Ireland....Is it life-long and one learns to live with it?
Thanks in advance, all support is greatly appreciated.

Munstermad

emnc wrote: »

Hi, Im new to the forum. My 13 yr old son was also diagnosed with CVS last september after 5 days in hospital and many earlier episodes that year. He too has missed over 10days from school since last sep. Hes had 3 episodes since, we had been advised to take zofran at the onset of nausea and cyclizine every 6hrs after yet the vomiting didnt stop. So we were referred to Crumlin where they do appear to know more about this, yet it is rare. Hes now starting on a daily antimigraine drug called sanomigran, Im wondering if anyone else has tried this, has it worked? were there any side-effects? We cant seem to source a trigger except onset of Puberty, This condition is written so much about on American sites but theres little discussion in Ireland....Is it life-long and one learns to live with it?
Thanks in advance, all support is greatly appreciated.

Hi there, so sorry to here of your poor sons ordeal, cvs is hugely associated with migraines. My 12 year old daughter who has had migraines since she was 7 put down one horrific year last year. She like your son had been on sannomigran and Zofran for 3 years (watch for constipation) but this really didn't help her when last year she was hospitalised repeatedly with daily chronic migraine.. shes doing much better now, but missed last 2 months o 6th class and 1st 2 months of 1st year because of the horrific headaches and vomiting.. After many different drugs we found amitryptiline to work the best.. but I feel the changes in her life couple with hormones were at the root of her ordeal.. I really hope your son feels better soon, its such a scary time for everyone involved... My daughter was scanned and tested for everything under the sun... We were so scared... She s now under the care of a fab neurologist, and is about to start cbt with a therapist to help her to deal with stress instead of supressing it.. (good and bad stresses really exacerbate her condition)The CVS is not really the issue for us anymore, its migraine. I don't know if this is of any use to you but If you have any questions please don't hesitate. MM

miss no stars

First, I'll preface this with saying that this is NOT medical advice, it's just an observation that might lead to new avenues of research. Many people with a condition called Ehlers Danlos Syndrome (EDS) also suffer from cyclical vomiting syndrome and severe migrane problems and many have other different forms of dysautonomia such as Postural Orthostatic Tachycardial syndrome. If you're wondering what it is, EDS is basically a problem with collagen production and hitting puberty can make matters worse due to increased levels of certain hormones. In some people the problems are mostly with joints dislocating and causing pain, in others their problems are mostly internal such as organs not working properly or heart valve problems. It's poorly recognised in Ireland so even if you or a family member are showing all the signs of it I wouldn't count on it being recognized.

I'm not saying that anyone here has it, but it's something that might be worth ruling out (even if it's just to read the wiki article on it and decide that it doesn't fit). Sometimes it can help just to get to the bottom of why something is happening.

Nathanial

Hi everyone, I've only just heard of cvs today. I'm 46 yrs old and I've been suffering from episodes of vomiting & fever every 4-6 weeks for over 2 years now. I've been hospitalised 4 times in the past year, the last time was in Nov & I was semi-conscious when the paramedics got to me (thanks to my 10yr old daughter). They discovered in A&E that my blood sugar had dropped too low but I still didn't get a diagnosis. I have found that eating more slow-release carbs (oatmeal, potatoes & wheat products) have helped a lot. Also, I gave up drinking coffee & tea and started drinking a herbal tea called Rooibos tea (red bush tea) which I found really helps me.
I hope that this may help some of you & I'd also be grateful for any hints or tips from any other people suffering from this.

regards,
Nathanial

Split

Firstly Boards don't ban me - I genuinely did not know I had two accounts until this evening when I was looking through emails . As I dont have the password for the Cool Runnings one I will never use it again - I have not a clue how to delete it though.

EMNC - It can be lifelong or it can dissappear - In my case I was in remission for 3 years but due to a doctor prescribing new medications she has some how triggered the whole thing . Hoping again with good control and been back on all the anti emetics and periactin I wont have too many episodes. I had a lot of abdominal pain but not too many head migraines - problem with abdo pain and vomiting in an Irish hospital is the countless tests for appendicitis , gallbladder , ovarian cysts , liver .

Munster Mad - CBT is amazing as it will help her learn skills to use as stress coping mechanisms for the future - also yoga , dance , art are all great for stress relief . Just to preface this with a note that while I was at my sickest I trained as a psychotherapist albeit the university were understanding and I did not get s@@t for my poor attendance

miss no star- I have hyper elasticity of the joints - was spotted a year after CVS was diagnosed and explained the numerous strains and sprains along with the swelling . Was never correlated to my CVS.


Anyhow feel free to ask any questions that you may have . Oh and I look perfectly health between episodes in fact Im overweight and on a diet at the moment - it becomes a choice whether the person diagnosed lives their life during stable times or always moves towards been careful because of been the sick person .

amandaanne

Hello to you all
I am aware this is a old post and i hope my reply still reaches most of you . I am a mother of a cvs / abdominal migraine sufferer aged 6 and i am also irelands point of contact for this condition www.cvsa.org.uk
My aim this year is to raise more awareness about this condition in Ireland and help people suffering from this connect with others they can relate to .
At present we are in contact with alternative medicine specialists about their view on Cvs and what possible treatments that could be or are available . Also a media company has been in contact that are doing a medical tv show for the discovery network and they are looking for sufferers aged 18 and over to take part in the show to talk about Cvs .
My contact details are below if any of you wish to get in touch for further information

Amanda Seery
Mobile : 0852290762
Email : seeryamanda@gmail.com
Facebook https://www.facebook.com/groups/1458221217725767/