My Boy is back

My boy Aaron is back from holiday in Cornwall. I've missed him lots. He's had a great time without me though. He's been go-karting and camping. Alright for some!

QR codes for the Cyclic Vomiting Syndrome Networks. Scan the code with your scanner to be taken straight to the sites in question

New updated version of the CVS app. Just follow the link below and save to your homepage or desktop. if you have the old version it should work automatically if it doesn't just replace the old link with this new one. It works on all types of mobile phones, tablets and computers. I hope you like it.
Any questions please message me or comment on this post.

Cyclic Vomiting Syndrome App 

CVS Pictures

Come and take a look at my CVS pictures

My Cyclic Vomiting Syndrome Pinterest Board

The start of summer for the kids ☀️

It's the first day of the school summer holidays. I had an extra hour lie in today so I'm feeling refreshed 

#CyclicVomitingSyndrome

#ChronicIllness #InvisibleIllness #Unwell #sick #CVS #CyclicVomitingSyndrome #CyclicVomiting #awareness #DayInTheLifeOfCVS #CVSA 

CVS posters page - Facebook

My Facebook Cyclic Vomiting Syndrome Posters Page

CVS page Facebook

My Facebook cyclic vomiting syndrome page

CVS group

My CVS group 

It's the biggest on Facebook.

#CyclicVomitingSyndrome

My CVS FACEBOOK Group

The Best CVS statement ever from a medical professional

Best CVS statement ever from a medical professional I think anyway, so I made it into a poster. It's by Professor B U.K. Li, MD, CHILDREN'S HOSPITAL OF WISCONSIN. If you want to see the video where he states this visit this link on Robin Dover's Youtube Channel Professor B U.K. Li, MD on Youtube talking about CVS

Robin Dover is the chairman of the CVSA-UK and is a fantastic guy. He does so much for people who have CVS. You can see him in this video on youtube Video With Robin Dover In It

#CyclicVomitingSyndrome #CVS #Awareness

“There is no other disorder that will make you vomit 15-30 times at a time, even in one child up to 400 times per episode coming every 5-10 minutes, there really isn't anything so in my mind it’s the most intense vomiting disorder in human beings.”

Professor B U.K. Li, MD.


Poster I made on my Facebook profile

Some CVS pictures I've made.

Some of the many awareness posters I've made #CyclicVomitingSyndrome

My story

What is CVS? Well here is my story to explain.

Hi my name is Angie I'm 37 and I've suffered with a rare illness called Cyclic Vomiting Syndrome (CVS) for 23 years. I have had CVS since I was 14 years old and it's very hard to live with. My CVS episodes can last for hours or days and I can vomit up to 10 times an hour. Episodes tend to start at the same time of day which is morning or late evening for me, the symptoms and level of intensity in attacks can vary. I get daily symptoms of pain, nausea and anxiety which cause me to miss out on a lot of things with my family and friends. I get a lot of migraines and abdominal migraines. My full CVS attacks can come at any time without warning, mine usually come every 1-2 weeks. Sometimes attacks are so bad that I have to be taken to hospital for medication and fluids. I take a lot of medication daily to help fight the symptoms and abort attacks but still I struggle with this every day and so do many more like me.

Symptoms of CVS are

⦁ Severe and constant, unremitting nausea
⦁ Onset of vomiting is most commonly during the night or early morning
⦁ Repeated vomiting, peaking at up to 5-6 times per hour
⦁ Retching, often violently
⦁ Pallor, often extreme paleness of the skin
⦁ Headache
⦁ Intense abdominal pain
⦁ Low grade fever
⦁ Vomiting episodes may repeat with regular spacing of days or weeks
⦁ Lethargy or unresponsiveness
⦁ Dizziness
⦁ Excessive salivation, and/or spitting
⦁ "Perplexing" or unusual behaviours

PLEASE SHARE MY STORY AND HELP RAISE AWARENESS OF CVS.

#CyclicVomitingSyndromeStories
#ChronicIllness #InvisibleIllness #Unwell#sick #CVS #CyclicVomitingSyndrome#CyclicVomiting #awareness#DayInTheLifeOfCVS #CVSA

Cyclic Vomiting Syndrome (CVS) Awareness

My new CVS Video I made today. Please Share. #CyclicVomitingSyndrome

Words from having CVS

CVS Movie me and Cyclic vomiting syndrome

My CVS Video I made 3 years ago

Brian Lowe guitarist/producer discusses Cyclic Vomiting Syndrome

Life with #CyclicVomitingSyndrome Video

Living with Cyclic Vomiting Syndrome

Living with CVS

How would you feel if you suffered with attacks of...?

- Severe, constant, unrelenting nausea and vomiting.

- Vomiting up to 6 times an hour for days or weeks at a time

- Nauseas and retching daily often violent & incredibly painful

- Severe abdominal pain daily known as abdominal migraine from the moment you wake up

- Pallor, often extreme paleness of the skin

- Headache often migraine

- Lethargy, unresponsiveness or blackout during attacks described as conscious coma

- Dizziness and shaking

Well this is what I suffer with and I have had it for 23 years. It's called CVS or Cyclic Vomiting Syndrome, its rare and very little is known about it. It is not known what causes it but in a small sub-set of sufferers a mitochondrial DNA mutation it thought to be to blame. For many of us with CVS there is nothing obvious that starts an attack for others specific triggers can be found. Stress, excitement, virus, some foods and alcohol are some of the triggers but many people with CVS find there is no cause. It has been classed the most severe form of vomiting in humans and there is no cure.

Just imagine for a minute how you would feel if you were in such pain you thrash around for hours, you’re so sick you can't even keep water down, you wake up on the floor after collapsing, you don't know what it is and when you go to the hospital and doctor your pushed away and branded a liar? That is what happened to me for 16 years until my diagnosis in 2008. It wasn't the doctor that found out what was wrong with me it was my Mum, with her determination I now have a diagnosis and my life of fear is over. With the help of family, new Doctor and others with CVS I'm now learning how to cope with this awful illness and 5 years on I'm being treated, but it hasn't always been this way. Here is my story about my long battle with CVS.

It all started 23 years ago when I was 14 years old. My Mum and Dad were getting ready to go on holiday the following day and all of a sudden I started to be violently ill. I was ill all night and in lots of pain but the next day I was fine. We thought it was a bug or something I had ate. As time went on the same attacks came along more often and they lasted longer each time. We knew it wasn't a bug so what was it? I went to the doctor and he thought it was linked to my cycle because they were coming every month, so he put me on the pill in the hope it would regulate my cycle, but nothing worked. In the coming years the pain was so bed during attacks that I would go to the hospital hoping they could find out what it was. I had several tests, bloods taken and scans but all came back negative. In time the Doctors and the hospital staff started to doubt I had anything wrong with me. I have had Doctors say it's all in my head, I've had nurses telling me to shut up because I'm making too much noise, a doctor in the hospital even gave me water instead of morphine to test my reaction, I've even been left on the floor after collapsing because they thought I was faking. It got to the point I was even questioning my own sanity and wondering if it was all in my head but deep down I knew it was all happening. I knew it was real and so did my family.

In the coming years I had 3 children Sasha in 1998, Liam in 2000 & Aaron in 2002. With all pregnancies I had morning sickness right the way through. Just after Liam was born I had one of the worse attacks I've had, it lasted over a week and I wouldn't go into hospital because of how they treated me. As a result I dropped from 7.5 stone (105lb) to 6 stone (91lb) I was so frail I could hardly walk, and still the doctors didn't believe me. I suffered many years of disbelief and scepticism from medical staff which effected my confidence in the so called medical professionals. Why do I feel so guilty about being ill? Why am I made to feel like a hypochondriac? Why Oh why? I ask myself time and time again. Having CVS is not a pleasant thing, but knowing that whenever I have an episode, I am going to be treated so poorly, does not make it any easier to deal with.

I will describe one of my typical episodes…

I’ve been tossing and turning all night unable to get much sleep, I wake up in the morning feeling extreme nausea and pain. I go into the bathroom and try to have a cold wash. It doesn’t work and I feel like I’m going to be sick. I start to vomit so I go back to bed with a sick bowl. The pain starts to get worse and the vomiting by now is coming every 10 minutes. I try to take a bath, it helps a bit but not for long. I’ve been vomiting now for hours and there is no sign of it stopping. I start to vomit blood so my partner calls the ambulance because I have no other way of getting into hospital. The paramedics arrive and give me gas and air for the pain. I arrive to the A+E early afternoon. I tell them I have CVS then comes the question “what is that? I’ve never heard of it” 30-40 minutes later I see a different nurse, she has seen me before for the same thing so doesn’t take much notice because she thinks I‘m self-inflicting. When I’m eventually seen by a doctor I’m given pain relief through injection and I’m put on a drip to regain some fluid. I’m sent for scans and blood is taken for testing. I’m still vomiting every 10 minutes. It’s now 10:00 pm and I’m still vomiting and I’m in awful indescribable pain, I just want to curl up and die. I’m moved to a ward I have been to before and I am greeted with “Oh OK it’s you again is it” Some staff are great, others think you’re putting it on to get drugs or attention and they are cold and hard faced. It’s hard lying ill in bed while people don’t believe you. I’m even refused water because they think that I’m drinking it to make myself sick. I’m given pain and ant sickness medication for days but nothing works. Finally on day 4 things start to calm down, my colour returns and I can finally eat something. I’m sent home later that afternoon. It takes 3 days to get energy back and feel slightly normal again.

In 2008 while researching my symptoms my Mum came across the CVSA-UK website and realised this is what I had and this is the reason all tests came back negative. I went straight to my doctor with the news. I could see he was shocked but even then he didn't believe it. He said “if that’s what you want to call it then fine" I was so upset, all these years of being ill and now I had an answer he still didn't want to listen. Reluctantly he started treatment for CVS and things started looking up. 18 months later at an appointment with the doctor he asked me straight out if I was anorexic, which was the last straw I wasn't being treated like this anymore, so I changed my doctor's surgery. Since changing my Doctor things are starting to look up. They are taking me seriously and helping me as much as they can. I still get treated badly sometime when I go to hospital but it's because my record is now marked. Being labelled a drug seeker or faker is hard but I'm learning to ignore it better. Having CVS is bad enough without having to go through negativity from medical staff.

I'm now trying to make the most of my life with my wonderful family. It's hard for my children to see me like this but they help me in ways they don't even know every day. They have all had to witness me go through attacks, something they shouldn't have had to do in their short lives but they are so strong and I'm very proud of them all. My partner has stuck by my side all the way through and for that I am so grateful. If I didn't have my family I would be lost. I have a CVS group and page on Facebook with lots of other sufferers from all over the world and their support is a great help. I'm not having as many full attacks but I suffer with pain and nausea every day, I vomit for anything between 2-5 days a week and I get full attacks 1-2 times a month which can last days. I'm on lots of tablets to combat symptoms and attacks. I spend my days researching CVS and supporting others with CVS as well as looking after my family with the help of my partner.

I hope one day they find a cure for CVS but until then I'm going to keep fighting. If you suffer with CVS please get help and change to another doctor if needed don't suffer like I did. CVS is an awful disorder and not well known. We need to raise awareness of CVS so others can get the treatment they need.

My last word is to the medical staff all over the world is...

PLEASE TAKE US SERIOUSTLY, CVS IS REAL, PLEASE TREAT US WITH A LITTLE RESPECT.

TO ANYONE WITH CVS YOUR NOT ALONE, I KNOW HOW YOU FEEL.

By Angie Crooks 2015

About my CVS facebook group and page

My name is Angie and I suffer with CVS. I've had CVS for since I was 14 years old which is 22 years, I was diagnosed in 2008. I was sitting at home on one day thinking what I can do to help people with CVS (even when I'm stuck at home unwell) and Facebook was the answer.

I started a Facebook group called ‘Cyclic Vomiting Syndrome (CVS) Support Group’ with the intention of using it for supporting people with CVS, adding CVS information and raising awareness. The group really took off and soon we had hundreds of members from all over the world. The members love the group and are so happy to find people who can relate to what they or their loved one has. We talk about all kinds of subjects like symptoms, medication, feelings, medical staff, hospital visits, raising awareness and lots more. We also offer support to each other when times are rough which has proved valuable to many members. We share stories of sadness and joy and we help one and other daily it’s amazing. I'm also an administrator of the Facebook sister page called ‘Cyclic Vomiting Syndrome’ which has over 1000 likes from people worldwide. This is an information page where I add information, news article links, stories, posters and lots more.

Being an administrator of a large group can be challenging sometimes but it is such a pleasure to do. I can help people like myself that suffer with CVS even when I can’t leave the house and that’s a blessing because I still feel like I'm doing something even when I'm stuck in bed. I try to add things to the group and page when I'm well enough to and try to log on daily to add members and check posts, but sometimes this can be hard to do when I'm unwell almost daily.

I make a lot of CVS posters for our group and page if you search the web I'm sure you'll find some of them.

WE SURE ARE RARE BUT NOT ALONE (Quote by Colleen Rice)

Cyclic Vomiting Syndrome Facebook Page 

Cyclic Vomiting Syndrome Facebook Group