What is CVS?
It stands for Cyclic Vomiting Syndrome. CVS is a rare and difficult to diagnose condition which affects mainly children who, thankfully, tend to grow out of it on reaching adulthood.
Sufferers experience severe nausea and vomiting that lasts for hours, days or even weeks with longer, symtom-free, periods in between.
It has no known cause. Each episode is normally similar to the previous ones. Although CVS can begin at any age in children and adults, it usually starts between the agees of 3 - 7. In adults, episodes tend to occur less often than they do in children, but they can last longer. Furthermore, the events or situations that trigger episodes in adults cannot always be pinpointed as easily as they can in children.
Someone close to me has suffered from this little-known disorder all his life. He is currently experiencing his worse attack yet (his 7th attack within a year). The following is an email sent by his wife after discovering a Letchworth-based web-site dedicated to this disorder.
(Responses from Dr Robin Dover of the Cyclical Vomiting Syndrome Association are included)
'Could someone please help us'
My husband, David, has been suffering with CVS his whole life. As a baby, with projectile vomiting, they said he was allergic to milk. A bit older and he was allergic to eggs and a variety of other foods. A little older and they removed his perfectly healthy appendix due to constant bouts of sickness. As a teenager, he was told he had an alcohol allergy so he did not drink again. Throughout his 20's and 30's he suffered 2/3 bouts per year and through his 40's this decreased to one every 2/3 years but the bouts were more severe (always hospitalised and also had a Mallory Weiss tear). His 50's have brought a whole new nightmare and he is on his 7th attack within a year (each one lasting 3 weeks or more). He has had around 5 months off work and his employer is getting tired of paying someone with a mystery illness.
Over the years he has had countless tests; MRI scans, CAT scans, cameras up and down, Barium meals, biopsies, bloods, urine, stools. He usually has these tests between bouts and is the picture of health so the experts send us home with a feeling we have wasted their time. I might add that he has never been over-weight, has a healthy diet, gets plenty of exercise and does not smoke or drink. In fact he is never ill but for the CVS.
Both our GP and the stomach specialist we were referred to have not heard of CVS and even though we gave them details said they do not believe it as there are web-sites for all manner of illness but this does not make it a recognised illness or official site. They say they have spoken to many other doctors who have also not heard of it or think it is 'made-up.'
Response
'Sadly, this isn't a rare story. Ignorance amongst the medical profession is a major problem. However, if it were 'made-up' why would there be a history of publications in reputable and mainstream medical journals dating back over 100 years describing it? The work of Dr Boles in the USA (associate professor of paediatrics at the Los Angeles Children's hospital) has indicated that some forms of CVS are related to mutations in mitochondrial DNA, I am a little incredulous that such work is ignored or not known of. I agree the internet is full of inaccurate and sometimes dangerous information, but the medical literature in peer reviewed journals remain the basis of information led medicine and there is no shortage of articles about CVS from institutions with a high standing and credibility.'
'We have just come from our GP and the only thing he could offer us was to be grateful it was not a 'real' or 'serious' illness like cancer or something. He said he can do nothing and if the specialists can find nothing wrong he should be able to refer us to a psychiatrist. We would be happy to be referred to anyone so long as we can get some treatment.'
Response
I'd advise against seeing a psychiatrist at this stage. The description certainly fits, but that may not be enough without further tests to rule out other causes (despite all previous tests...things do get missed). CVS is not a psychiatric illness. If he isn't being treated and is suffering from a debilitating condition then he may well be depressed...who wouldn't be...but that is the result of the illness, not a cause. It may require treatment but the priority has to be treatment to prevent attacks or alleviate the symptoms, which may in itself be the best treatment for any alleged 'depression'. There is no guaranteed effective treatment for CVS but there is some prospect of traetment to alleviate the severity for some sufferers. Anti-emetic drugs are available that can reduce the severity and/or the length of an attack in some sufferers...but I caution, not all.'
'His illness starts with a vague unwell feeling which we cannot pinpoint until the attack has started. The actual vomiting always starts around 2 am in the morning and continues relentlessly for several days at that pace (about 6-10 times an hour). He just stays in bed with a bowl. low light, no conversation, no noise and very irritable and feverish. Then the drooling starts and the vomiting continues for another week or so. The current bout has him choking on his saliva throughout the night so sleep is almost impossible. This latest attack has lasted well over 2 weeks and we seem no nearer the end. Each time he seems to start improving he then goes backwards again. He is now very depressed and very anxious that once this one is over the next will be around the corner (we never used to think like that because the episodes were always a reasonable time apart). He is listless and cannot settle anywhere. He has lost 2 stone in weight, has pressure sores on his bottom and although I am doing my best to keep him hydrated, he is not eating at all.'
Response
'Has anyone ever tried treating him...even just giving him iv fluids for the water loss and to correct his salt balance? Your description certainly sounds like CVS but as ever...I need to express caution. There is no diagnosis of CVS - it is a syndrome - a description of a pattern of symptoms that remain unexplained when every other known cause has been ruled out. There have been no formal clinical trials to test drug treatments, just individual experiences. In a survey of our membership, one drug was the most commonly used that some people (and I stress, not all) found gave some relief. Ondansetron (trade name Zofran) can be given orally when he thinks an attack is starting...in some individuals (a minority) this can prevent a 'full-blown' attack. It can be given via iv during an attack and is more successful at reducing or preventing vomiting. Sedation during an attack is another common treatment. You really need a doctor who understands CVS to help recommend a suggested treatment based on his symptoms, I only mention the above as an indication that there are things that may help some people and it may be appropriate that these are tried. Some people with CVS haven't found anything to help, some have prophylactic treatment that has stopped actual vomiting episodes. They may still feel ill, but the quality of life is improved and they can function more normally day to day.'
'Please could you advise us on how to convince doctors that this condition does exist and even if it did not, some attempt at diagnosis and treatment is still required. We are both under tremendous pressure from friends and relatives to get a diagnosis of this illness as they all think we must be stupid (particularly me) to let David suffer so badly throughout his life without demanding action from the GP (which, of course, I do but without success)'
Response
'Yes. Send a postal address and we'll send copies of scientific papers and a DVD describing the condition. It contains interviews with Doctors from Great Ormond St, the USA and St Georges medical school. If the doctors don't accept that as corroboration, that highly experienced GI consultants are aware of the syndrome and recognise it, then we should probably give up. They are a lost cause. I've emailed one of our advisors asking him to suggest someone you can ask for a referral to in London - someone with CVS experience, so at least he will be treated decently instead of the dismissal he seems to have had so far.'
As it happens, I have a daughter with CVS from birth. She is now 18. Also, a son with CVS like symptoms that started when he was 5-6 but have become more severe (although relatively mild by CVS standards) over the years. He is now 12. If David or yourself would like to talk feel free to call me (number omitted). The helpline also has a recorded message with the numbers of other volunteers willing to talk. It includes some adult CVS sufferers but they can be hard to contact if they're ill themselves!
Meanwhile, I am attaching an old copy of one of our newsletters aimed at adult sufferers and the most recent version which may be of some interest. The newsletters also contains articles from credible medical experts around the world. These are not eccentrics but mainstream medical experts.'
This email was sent on 2nd Jan 2008. The name of a specialist in London was supplied by 4th Jan but needed a doctor's referral. An appointment with the GP could not be made until Mon 7th Jan when David and his wife were assured a referral would be made. During all this time he continues to be ill and losing weight at a frightening rate. On 9th & 10th Jan he was hospitalised for rehydration through an iv drip, but was then told 'there are so many bugs in here (Hemel hospital) you'd be better off at home.' It is now Sat 12th Jan. David has been very ill for over 4 weeks and remains so, still vomiting and semi-delerious. He has lost all sense of reality and doesn't know what day it is. There is still no sign of an appointment with the specialist. His wife is also ill with the stress and worry and has now succumbed to the flu' bug so prevelent at present.
They are both at the end of their tether and do not know how to get immediate help.
I would be most interested in feedback from this article. I am keen to hear from sufferers / families of sufferers / the medical community and anyone else with something to say about CVS.
Meanwhile, I wish all a healthy and happy New Year.
UPDATE 05/02/07
There is much documentation to report since the beginning of the year, but cannot be published until David's wife is ready. Briefly, there has been more trauma with the family GP and David's condition is worstening. They have been to see the CVS specialist in London (for which they had to pay privately) who did greatly hearten them through his understanding of the condition. David is due to be taken in for tests when a bed becomes available. He is able to take 'Ensure' drinks which he sometimes keeps down, but generally is still living with constant sickness causing his body to become weaker by the day. David has now been suffering for 2 months.
Shirley
goHemel.co.uk
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31/08/08 Apologies for the delay in updaing David's story.
David was admitted to hospital where he was treated for 3 weeks. Under the care of specialist who understands his condition he made rapid progress and is now leading a normal life with the help of daily medication.
David and his wife had to fight the ignorance and stubborness of their local GP and it's no thanks to him they finally found their own solution through research and information from Cyclical Vomiting Syndrome Association .
We wish David and his family a long a healthy future.
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