Living with CVS

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LIVING WITH CVS

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

- Severe, constant, unrelenting nausea and vomiting.
- Vomiting up to 12 times an hour for days or weeks at a time
- Nauseas and/or retching/vomiting daily often violent & incredible painful
- Severe abdominal pain daily known as abdominal migraine from the moment you wake up
- Pallor, often extreme paleness of the skin
- Headache mostly 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 since I was 14 in 1992. 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 subset 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, traveling, the weather and alcohol are some of the triggers but many people with CVS find there's 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 vomit every 6-10 minutes for days or weeks, you wake up on the floor after collapsing, you don't know why it's happening and when you go to the hospital you're sometimes 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, but the pain and sickness is still here. With the help of family, a new Doctor and others with CVS I'm now learning how to cope with this awful illness and at last  years on I'm being treated, but it hasn't always been this way. Here is my story about my long battle with CVS and the medical profession.

It all started 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 being 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 monthly 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 bad 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 my Doctors and some of the hospital staff started to doubt I had anything wrong with me at all. 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 seeking attention. 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 wasn't all in my head. 
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 worst 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 (84lb) 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 lowered 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 shower, 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 as 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 there 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 at least 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 going to be treated like this anymore, so I changed my doctor's surgery. Since changing my Doctor things are starting to get better. 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. I'e been RED FLAGGED. Being labelled a drug seeker or faker is hard but I'm learning to ignore it. 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 ex partner stuck by my side all the way through and for that I am so grateful. We split up in 2015 after being together for 18 years but we still talk it was an amicable split. If I didn't have my family I would be lost. I have a https://www.facebook.com/groups/cvsgroup/, a https://www.facebook.com/cyclicvomitingsyndromepage/ and a https://www.facebook.com/CyclicVomitingSyndromePosters/ on Facebook with lots of other sufferers as members 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 2-4 days a week and I get mild full attacks 2 times a month which can last hours or 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 children.

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 SERIOUSLY
CVS IS REAL
PLEASE TREAT US WITH A LITTLE RESPECT.

TO ANYONE WITH CVS YOU'RE NOT ALONE, I KNOW HOW YOU FEEL.
*Stay Strong*

By Angie Crooks

For more information visit our website at http://www.cvsnetwork.co.uk